Pain Awareness Week - Hospitals are supposed to be a safe space

Disclaimer: This patient story has details of opioid use, fertility difficulties, and gas lighting.

My husband and I struggled to get pregnant naturally for years. We were so blessed that after only one round of IVF, we found out we were expecting. The first trimester of my pregnancy was rough, but normal. I had quite a lot of morning sickness, I was tired, I had some food aversions, but overall things were fine.

My second trimester brought some new challenges. I started getting extremely dizzy and fainted a few times, once while I was alone in a store. This was a little bit more scary. My OB/GYN determined that I had extremely low blood pressure and I was instructed to rest often and ensure I always had a safe place to lie down since I could faint at a moment’s notice. Although this wasn’t ideal, I still considered the pregnancy to be fairly normal. I was just so happy to have been pregnant, that I was willing to overlook common symptoms.

Third trimester is where things went bad. One day, when I was 27 weeks pregnant, I started having some cramping. After a few hours I realized the cramps were coming in consistently timed waves. I called my OB’s office and they instructed me to head to the small hospital where I had originally chosen to give birth.

From the time I arrived they began running tests on me. After about 24 hours of testing, I was told that I was having contractions, and that my amniotic fluid was leaking. My OB/GYN was wonderful here. She assured me that babies are born at 27 weeks all the time and survive. She told me that I needed to be transferred immediately to the high-risk unit of a bigger hospital. Within minutes, an ambulance came to bring me to the new hospital, my husband followed closely behind in our car.

This was the scariest thing my husband and I have ever been through. All I could think about was if the baby was going to be okay. All my husband could think about was if the baby and I would be okay.

The moment I arrived at the new hospital, the tone changed. The nurses asked me which tests had been completed already. I explained what had been done, I was told I would have to go through them all over again. These tests were painful and invasive, but I consented because I wanted my baby to be okay. I got the impression that they were unimpressed with the small hospital and did not trust their results.

A couple hours later the head of the high-risk unit came to see me. I was being admitted due to preterm labour. My ultrasound also showed a large mass in my placenta. It was unclear what the mass was, but it was painful. Keep in mind, I had also been having consistent contractions throughout this entire time, and nobody was offering me any comfort in this regard.

Eventually, I was offered pain medication in the form of high-powered opioids. This concerned me greatly. Not only do I not respond well to opioids (as so many of us don’t), but I was very worried about how it could affect the baby. The doctor assured me that they would continue to monitor the baby and it was important for me to get out of the intense pain I was in. I was told that as long as I did not have a dose within 4 hours of delivery, my baby would be fine. I listened.

“She looked me in the eye and said “don’t you know how bad these are for your baby? Your baby will be born unable to breathe on its own.””

The doctors were able to stop my labour with medication, but I continued to have contractions. They also began to explore what the strange mass on my placenta could be. I had multiple ultrasounds and an MRI which yielded no results. Imagine at this point, I am so exhausted, feeling all the feels and being carted from department to department for testing.

All this time I was still in pain. It was five days in and my doctor told me he recommended that I get an epidural to get a break from the pain. I was so exhausted at that point that I agreed. Hours and hours went by waiting for the anaesthesiologist. Nurses came in and held my hand and told me I just had to wait a few more minutes and the pain would go away. When the anaesthesiologist came in, he told me he was not going to give me the epidural. Even though the doctor ordered it, he refused. He told me because I wasn’t an active labour I wasn’t a candidate. While I lay there, frustrated, crying, confused, another doctor actually began yelling at the anesthesiologist. She asked him what I was supposed to do about my pain. He didn’t respond and left the room. This began my months-long journey of mixed advice, lack of clarity, and constant pain.

My only option to keep the pain manageable was to continue taking opioids. At the beginning I was constantly questioning my doctors. I was always asking if there was another solution because I did not want to be on this medication long-term. I also could not stop taking the painkillers because then I would essentially feel like I was in active labour without progressing. Who can be in labour for months at a time?

Two weeks into my hospital stay I met a nurse whose face will always be burned into my memory. I was prescribed painkillers every four hours, but I often tried to extend the time between doses to limit my exposure. It had been eight hours and at this point I was in too much pain to continue waiting. I called her in and asked for the medication. She looked me in the eye and said “don’t you know how bad these are for your baby? Your baby will be born unable to breathe on its own.” She refused to get me the medication until she spoke to my doctor. She came back half an hour later and practically threw the pills at me. I was at my worst at that moment and she kicked me while I was down. No longer was this about my navigation as an ‘abnormal’ pregnancy but it was about holding me to some standard.

Truth is, as much as the doctors had assured me that the baby would be okay, I also had my reservations about what this medication could do. In a moment of maternal martyrdom, I decided to stop taking them cold turkey. 12 hours later, I was in a pain crisis. I had started to dilate, and was rushed back to the birthing unit. Once again, they were able to stop my labour but not my contractions. This doctor told me I had to stay on top of my pain medication.

More weeks went by. New rotations of doctors came in with new ideas. It seemed like every day I was being told something different. Some doctors had theories on what the mysterious mass (which further investigation determined to actually be three separate masses) could be. Some doctors urged me to continue taking the opioids. Others told me it was important to stop. You can imagine how confusing this could be. I was dazed and confused to say the least, depleted, somewhat delusional from all the meds. I shouldn’t have had to make these decisions in my condition.

I told them I would follow their medical expertise, but I needed to have a clear consensus to follow. How could I make an informed decision on my health with so many different opinions coming my way? How could I know what the best course of action would be for me and my baby?

I continued taking the painkillers until I was 35 weeks pregnant. I then weaned myself off because I was worried that my baby could be born with an addiction to opioids. At 37 weeks I gave birth to my perfect baby boy.

That was 10 weeks ago. My placenta was supposed to have been sent to pathology for testing. I was told I would get answers within six weeks. I am still waiting.

The lack of options for pain management for women continues to be disappointing, but not surprising. As someone with endometriosis, I’m aware of how women’s issues are often overlooked. I’m aware of how doctors expect women to take on great suffering for the sake of their child. I don’t believe a dichotomy needs to exist. I should not need to choose between my own well-being and my baby. Millions and millions of women are pregnant every single day. I refuse to believe that there aren’t safe and effective remedies to all too common pregnancy issues that have yet to be discovered.

Although I would love to have a second child one day, I don’t know if I can put myself through another pregnancy like that. I don’t know if it’s worth it. I’m not sure if there’s any lessons to be taken from my story other than the opinion of one doctor does not always hold the weight they make you believe it should. Unfortunately as women we need to continue being our own advocates, pushing for answers and demanding treatment.

Amanda has had the strength to share her story with our community and we thank her immensely for her vulnerability. If you or a loved one have gone through fertility issues, birth trauma, pregnancy loss, or need mental health support please reach out about our mental health services.

Femade Expands Virtual Women’s Mental Health Care in Ontario

In pursuit of addressing the critical need for quality mental health services, Femade is proud to unveil affordable options for women and marginalized communities across Ontario. 

In response to the Ontario government’s decision to drastically reduce funding for critical mental health resources and virtual care, Femade's services are certain to bridge this gap – bringing practitioners and patients together – to ensure there is increased access. These services will not only address the prevailing obstacles in Ontario's healthcare landscape, but will empower patients to address their concerns that have largely been dismissed or ignored.

Following a post-Covid analysis, the results showcased that approximately two-thirds of Ontarians say their mental health declined during the pandemic, with a significant proportion being women.

Additionally, mental health specialists such as social workers, psychotherapists, and occupational therapists are seeking private avenues to support patients facing mental health crises. There is a large disconnect, wherein patients are searching for mental health support and are too afraid or exhausted to begin the search for the right match. Femade has emerged with a viable solution by creating a team of practitioners, whose focus and passion is creating a safe space for women and marginalized communities. 

We built a trusted name, and while our Ottawa brick and mortar has helped hundreds of people improve their quality of life, we want to extend the reach across Ontario with all of the virtual services we can provide. Thus far we have brought on 7 new mental health practitioners and 2 new naturopathic doctors to be a part of this growing team.

Femade opened its doors in 2022 to address the growing backlog of patients without family doctors, specialists, or on the waitlist for the Ottawa pain clinic. Pulling together allied healthcare specialists with a passion for women’s health and chronic pain, Femade’s team delivers a multidisciplinary approach to mental and physical symptoms while creating a safe space for hundreds of patients who have been gaslit, or are experiencing trauma. The growing concern is that Ottawa is just a small subset of a much larger problem, with mental health at the forefront. Through Femade’s expansion the hope is to connect with as many Ontarians as possible. 

Inclusivity in Canadian Healthcare - 2SLGBTQQIA+ Awareness Month

The month of June is widely recognized as International Pride Month; Pride Month commemorates years of struggle for civil rights and the ongoing battle for equal justice under the law for the lesbian, gay, bisexual, transgender, and queer community, as well as a celebration for the accomplishments of 2SLGBTQQIA+ individuals. Despite the triumphs made through the decades, there is much we need to understand as a society as far as inclusivity and equality for the 2SLGBTQQIA+ community. 

To move the needle, we need to first note the history of treatment for 2SLGBTQQIA+ members within the written laws and literature that make up our society. For example, homosexuality was listed as a disorder in the Diagnostic & Statistical Manual of Mental Disorders until 1973 (Charles C, et al) and being transgender was considered a mental illness according the the World Health Organization up until 2019 (WebMD). These occurrences highlight the fact that there are many areas in Canada where we need to increase education and promote openness, inclusion and accessibility for the members of the 2SLGBTQQIA+ community, with healthcare being one of the main areas.

So what does 2SLGBTQQIA+ mean and who does this impact? The two-spirit, lesbian, gay, bisexual, trans, queer, questioning, intersex, asexual and others are the ones who are building education and advocacy about the ways of life, quality of life, and inclusivity that is required for this society to operate justly. As Femade is inclusive in our culture towards gender and sexual orientation, providing a safe space for patients, we wanted to dive deeper into the rooted issues, homophobia and ingrained prejudice in the current healthcare system. 

Fear of victimization, homophobia and a general misconception about gender identity within our healthcare system has led many 2SLGBTQQIA+ members to avoid care from physicians when they need it. Where this problem is accentuated is in circumstances that involve the patient’s reproductive or hormone decisions. Many doctors either confuse gender with sexual orientation, confuse either of these with promiscuity, and many cannot conceptualize gender nuances when talking to the patient about reproductive decisions. Two members of the 2SLGBTQQIA+ community in Ottawa spoke to us about their experiences with physicians and the healthcare system as queer individuals. 

Danielle, age 24, recently underwent surgery for endometriosis. “When I had my endo surgery, they made me take a pregnancy test even though I said I was a lesbian and not even sexually active. It didn’t feel inclusive at all; like it wasn’t in their realm of possibility that a young woman could be off birth control and still have 0% of becoming pregnant”. 

Danielle continued to explain that her general practitioner even suggested she become pregnant to ‘cure’ her endo and that heterosexuality and heterosexual language is always the default. This experience of Danielle’s showcases the lack of proper education surrounding not only the 2SLGBTQQIA+ community and ingrained heterosexual narrative within healthcare but also the lack of education for physicians on proper care surrounding gynecological health.

Another Ottawa resident, Kayleigh, describes her experience as more judgmental; Kayleigh has chosen to share her experience from when she asked her doctor for birth control: “Even though I explained I was in a straight relationship they just assumed I was super promiscuous because I am bisexual and they kept explaining STI prevention. That wasn’t what I was looking for, I just didn’t want to get pregnant”. 

The unfortunate truth is that these incidents aren’t isolated. Medical schools in Canada require little to no training about 2SLGBTQQIA+ individuals and the language is based on the majority.  2SLGBTQQIA+ individuals find themselves educating and explaining to their physician which in turn leaves them feeling exhausted and avoiding seeking a healthcare professional altogether (Lee R., 2000). Josi, a transgender woman explains her first experience discussing her gender identity with her general practitioner: “She wasn’t comfortable prescribing hormones and told me I would need a psych evaluation first. It’s not like I’m an uncertain 13 year old asking for hormones, I was 21 and had been hoping to wake up a girl my whole life”. At this point, this kind of treatment and lack of education for medical practitioners shouldn’t come as much of a surprise. A 2016 Canadian study found that 95% of medical students agreed that while the specific health care needs of transgender patients is important, less than 10% feel like they would be able to accurately provide it (Chan B, et al., 2016). Many physicians, like in Josi’s case, do lean on other healthcare professionals to guide them in these medical decisions but the narrative they use needs to be more understanding and encouraging. 

So what can we do? It’s obvious that Canada’s medical education and healthcare system needs to vastly increase their education, both in preclinical and clinical training. We need to continue advocating for more representation and to decrease the stigma and discrimination around the 2SLGBTQQIA+ community.  An increase in exposure in the curriculum will lead to better 2SLGBTQQIA+ healthcare, reduced stigma and increased willingness to treat. We need to be more inclusive of the minorities regardless of what effort that might take, and take the time to work with the patient in better understanding their life goals. 

Here at Femade, we are attempting to shift the ingrained heterosexual cis-gender narrative and amplify the voices and stories of those experiencing injustice. We strive to create an inclusive space where those assigned female at birth can receive proper pain management and gynecological care without fear of judgment, victimization and homophobia. We seek to create a work environment where individuals from all backgrounds can feel their knowledge is valued. We hope in the future to participate in more initiatives to aid the 2SLGBTQQIA+ community by making strides for equality within healthcare.

Everyone deserves to walk into a space where their life and health is valued.

Resources

“Being Transgender Not a Mental Disorder, WHO Says.” WebMD, https://www.webmd.com/sex/news/20190529/being-transgender-not-a-mental-disorder-who-says. Accessed 14 June 2022.

Chan B, Skocylas R, Safer JD. Gaps in transgender medicine content identified among Canadian medical school curricula. Transgend Health 2016;1:142–50

Charles, Christopher, et al. “Improving Healthcare for LGBTQ Populations.” CFMS FEMC, p. 9.

Curmi C, Peters K, Salamonson Y. Lesbians’ attitudes and practices of cervical cancer screening: a qualitative study. BMC Womens Health 2014;14:153.

Lee R. Health care problems of lesbian, gay, bisexual, and transgender patients. West J Med 2000;172:403–8

Mental Health at Femade

As you may already know, May is Mental Health Awareness Month. Here at Femade, we understand that physical and mental health are so connected that without one the other fails. According to a 2021 study in Poland, the Covid-19 pandemic is responsible for a 31% increase in anxiety and depression across the globe (Śniadach et al., 2021). With a rapid decrease in mental health it is more important than ever to offer a variety of support systems: every person is unique, and therefore their care needs to be unique in turn. At Femade we offer peer support, as well as sessions with a psychotherapist both online and in person. We also offer Registered Massage Therapy and Acupuncture, which are both proven to have positive effects on mental health. 

Earlier this month we welcomed Aya Abdukarim who has a masters degree in Neurodivergence of Mental Health and is our Peer Support Specialist. Aya offers a safe outlet that would help navigate current mental health challenges, and offers her services in both English and Arabic. The services will offer open discussion, coping mechanisms, an unbiased third party, and a free space to express your challenges and obstacles you’re currently facing. Remember, nothing is too small or irrelevant when it comes to your mental health; seeking help is brave and is a huge step forward. Knowledge is power and knowing what is triggering anxiety and depression can relieve a lot of the stress. Aya also specializes in helping to bridge the gap between generations when acclimating to a new country, as well as supporting cultural awareness and the limitations individuals face when migrating to Canada. While this outlet of mental health support does not diagnose, we can help educate on the signs and symptoms that may be markers for depression and anxiety. 

Another new face joining our team at Femade is Melanie Parent-Dance. Melanie is a Registered Social Worker and offers her services in both English and French. While Melanie’s specialty is supporting women affected by violence and sexual assualts and the female judicial environment, her doors are open to everyone in need of support. It is essential to understand that your experiences and feelings are validated, and Melanie’s holistic therapeutic style uses compassion and empathy that are ingrained in her active listening. Furthermore, Melanie is committed to creating a safe and therapeutic relationship based on respect and empowerment which are influenced by a feminist structural approach. She uses an eclectic generalist therapeutic approach which means that the interventions are based on the unique needs of each person considering the influence of the various issues that affect people's lives at the individual, environmental, social and physical level.

A member of our Patient Advisory Board and chronic pain warrior herself, Erin Fernie is leading a series of social support groups for those in need. Being isolated is a heavy weight that no one should have to carry on their own. One of our goals here at Femade is to continually grow our community through shared experiences in a safe space. We have sessions open monthly on Sunday morning, Tuesday afternoon and evening. Sessions have a maximum of 8 attendees to keep it intimate but if you need to get into a session that is fully booked, please don’t hesitate to contact us. Attend one session, or all of the sessions, it is up to you!

Acupuncture targets areas within the body that are shifting in the wrong direction, and bringing it back to homeostasis. This is no different for mood disorders and mental health. For someone with mental health issues we are trying to assess what factors are driving this mood state and then combating it by helping the body regain a sense of relief. Acupuncture is proven to relieve stress, reduce anxiety and depression symptoms. In fact studies have shown acupuncture to have a significant impact on upregulation of neurotransmitters and a down regulation of certain inflammatory factors. 

When it comes to massage therapy, you may be wondering, ‘how can a massage help with my mental health? I mean, it feels nice in the moment, but are there really any long term positive effects on my mental health?’ The answer depends on each person, but in short, massage can help improve quality of sleep, reduce stress/anxiety, increase positive associations with touch, and improve a sense of well-being (Massage for Mental health). Those living with chronic pain are likely also well acquainted with anxiety, depression and burnout. Massage therapy can help by providing guidance from a professional, and a safe space where we can reconnect with our bodies after periods of dissociation. Therapeutic touch has also been known to reduce feelings of anxiety, improve symptoms of depression and give a greater sense of well being. A massage therapy treatment aimed specifically at stress reduction and relaxation can help our nervous system shift from a sympathetic state (fight or flight) to a parasympathetic state (rest and digest) which helps us feel more prepared to face the challenges of everyday life. 

One of our goals at Femade is to achieve a mind-body approach to both physical and mental states of health. While Depression and Anxiety often fit under the umbrella of invisible illness, our team is well aware of the signs of these mental health issues and can help - first by creating that safe space for your self care - and then by achieving a level of comfort that can help you manage your mental health in a more approachable way.

References 

Massage for Mental Health | AMTA. (n.d.). Www.amtamassage.org. https://www.amtamassage.org/resources/massage-and-health/mental-health/

Śniadach, J., Szymkowiak, S., Osip, P., & Waszkiewicz, N. (2021). Increased Depression and Anxiety Disorders during the COVID-19 Pandemic in Children and Adolescents: A Literature Review. Life (Basel, Switzerland), 11(11), 1188.

What is life without pelvic pain?

I don’t remember a time without Pelvic Pain. 

I was 14 when I started menstruating and they were never normal periods. I knew that. I knew because my mother never told me to prepare every month for the soul crushing symptoms that come about. She barely knew she was on her period every month. Barely needed a pad. I, on the other hand, felt it coming like a boulder moving through my abdomen and landing in my uterus. When my period would arrive, it was like a pause in time, like I had just been shot and I could see my life flashing before my eyes. Clots, bleeding through my sheets, cramps that were intolerable.

As I got older and birth control helped to regulate my cycle, I learned to cope. I learned to bear down when the pain would hit, breathe through the wave, focus on a spot on the wall, and just crush it. I learned to line my underwear with extra long overnight pads since tampons were much too painful. I learned how to attend parties and outings and just pretend the pain wasn’t killing me. Why? Because nobody really understood how painful it was. It wasn’t like in the movies where you see women pushing in agony to have a child. This type of pain - pelvic and period pain - was not (and still is not) ‘out there’ yet. Over 20 years of holding my head high, and I’m still educating others on how this truly feels, month over month. 

I chose not to have a child. I was told I had stage three endometriosis and while I’m sure I could have done the fertility treatments I didn’t feel my body could handle it. Sure, I may have gotten pregnant and had a baby, but having a child and raising a child are two very different things. Raising a child would mean being there, being present, and putting them first. My body just wouldn’t allow me to do that in the utmost capacity that I would want to.

I was diagnosed with endometriosis in 2012 (a 15 year journey to get a diagnosis) and had an ablation at the time. I experienced - for three whole blissful months - what it was like to not have pelvic pain. My goodness!. My body was out of the fog. I slept better. I moved better. But ablations only cauterize the disease so it all grew back and I was back to square one again. In 2017, I was diagnosed with severe ulcerative colitis. This would help explain so many of the bowel symptoms I had developed over the last decade. The urgency to poop. The paralyzing pain during bowel movements. The triggering from certain foods. But don’t get me wrong, I had no idea I had anything wrong with my bowels; I always thought it was a part of endometriosis. Let alone, having an autoimmune disease that would attack my own body. I once got myself into trouble. I was riding home on the bus, and my bowels started gurgling. I wasn’t surprised, I was on my period after all. But it donned on me quickly that I needed a bathroom and there were absolutely none around me. I got off the bus at my stop,... waited for the bus to pass,... and pooped in the bushes. At that point, when you basically poop yourself in broad daylight, there is no going back. You crawl out of the bushes, straighten yourself up, and walk home. My body was in sweats from the pain, and the fog of it all masked any amount of shame I had. Dignity? I didn’t care at that point.

These episodes of needing to poop urgently, or bleeding through my pants at school, were just things I endured and never spoke about. That’s the thing with dealing with symptoms that aren’t highly understood - you just don’t talk about it. And when you don’t talk about it, you swallow it. And when you swallow it, you somehow become powerful and almighty, wearing a smile on your face while your insides are being ripped apart by ninja’s with knives. My husband gets to see it all, unfortunately for him. He held my hand while my IUD was inserted; perhaps to this day the worst pain I have ever experienced, second to when they unclogged my left fallopian tube with ‘champagne’. He sees the rises and falls of every cramp, every bowel movement, every ugly cry. And part of me wishes I could shield that from him. Selfishly though, I think to myself, ‘this is one more person in the world you will truly understand pelvic pain’.

Breaking down the microbiome - Crohn's and Colitis Awareness Month

So many of the patients we talk to have issues related to their gut, whether it be a gut specific issue, or whether the gut is communicating with other parts of the body such as the pelvic floor, the upper digestive tract, or perhaps even the brain. These types of gut disturbances are not only debilitating, but are uncomfortable to talk about. 

November marks Crohn's and Colitis awareness month and with it we are breaking down barriers so we can talk about everything poop related. Crohn’s disease and Colitis are two subtypes within the umbrella of Inflammatory Bowel Disease (IBD). In both instances, there is substantial inflammation along the colon itself, leading to symptoms such as malabsorption, intestinal bleeding, pain and cramping with urgency, and potential weight loss. 

While there is no cure for either disease, there are many treatment options on the market that range from oral tablets, rectal suppositories and intravenous infusions of biologics. Whatever treatment works best for the patient, the goal is to reduce the inflammation and therefore put the patient into remission where quality of life is once again resumed. 

In the last decade (or less), one emerging treatment approach has been to try to replenish the gut with ‘good’ bacteria and change any bacteria that may be increasing the inflammation, increasing gut motility (and ‘having to go’ so often) and potentially even increasing cravings for junk. The community of bacteria and other microorganisms in the digestive tract is what we call the microbiome, and is a very active field of study where researchers and pharmaceutical companies alike are aiming to find a way to use the microbiome as a tool for IBD. 

We caught up with Kristina Campbell, a renowned Canadian microbiome science writer who has worked with many of the prominent companies in the field. Additionally, Kristina has published two microbiome books, one of which is a cookbook to get people on the right track with nourishing their gut microbiomes.

Kristina, can you get us started with the basics in terms of how the gut microbiome is being thought of as a tool for IBD?

By now, researchers have found dozens of conditions where the intestinal microbiome is altered compared to people without that condition. And for IBD, the alterations are especially obvious. People with IBD have fewer bacteria that thrive in a dark, oxygen-free environment (that is, anaerobes). And a large-scale project called the Human Microbiome Project 2 showed that during flares, the microbiome seems to change rapidly, like an erratic radio signal. Researchers are coming around to the idea that the gut microbiome is part of an intricate dance with the immune system and is part of how IBD arises -- one of several factors that create the 'perfect storm'. 

The conundrum is that changes in the gut microbiome look slightly different for every person with IBD. So there's no test you can take that tells you whether your microbiome is IBD-like vs. healthy. There's no threshold of 'bad' bacteria that everyone with IBD reaches, because it's highly individual.

Nevertheless, the gut microbiome is definitely gaining prominence as a tool for addressing IBD -- both for prevention and treatment. To understand more about prevention, at least one long-term study in multiple countries is now looking at people who develop IBD and whether they had had certain predisposing factors in their microbiomes beforehand. And for treatment, a number of different companies are testing out microbiome-targeting interventions that could make a difference to the disease once it's established. These might either replace or complement existing drug regimens for those with IBD.

Are there companies out there to watch out for?

There are some promising therapies coming out of pharmaceutical start-ups, using very different approaches. For example, Rebiotix is testing a “Microbiota Restoration Therapy” drug, which is a cocktail of live microbes (basically a controlled, pared-down version of a fecal transplant) that would shift the gut microbiome to achieve clinical benefit in IBD. The French company Enterome is taking a different approach, mimicking a well-functioning gut microbiome and putting pressure on the immune system via specific molecules.

What do patients need to be aware of when getting their microbiome tested?

If people get their microbiome tested, they should be aware that the test will not tell the doctor anything they can’t already tell from the standard clinical tests. There is no valid gut microbiome test that’s clinically actionable at the moment. It may be interesting to just see your results and speculate on how you could change them by using tools such as diet, but there are no guarantees that anything you do along those lines would be beneficial. This is coming, but it requires a lot more research and validation!

So then, should we start to get excited about fecal transplants?

With fecal transplants -- basically blending up stool from a healthy person and administering it to someone with IBD -- they’ve shown moderate success for ulcerative colitis (UC), but not Crohn’s disease. For UC, it seems to work well some of the time, and poorly other times, but researchers haven’t really figured out why this is the case. It might have to do with the exact community of microbes in the fecal donor -- some communities are more therapeutic than others. The big risk with fecal transplant, though, is that you can test the fecal sample rigorously but you cannot be sure if you’ve tested for every possible pathogen. So you can inadvertently transfer pathogens or antibiotic-resistant bacteria in the sample, which can be really dangerous for people who are already immunocompromised. I think the future is going to be about controlled therapies that mimic fecal transplants, such as the one by Rebiotix mentioned above.

Bringing it all the way back to the basics - the things we do have control of: food. Can you go into the premise of your book? Why did you focus on microbiome-supporting foods? Are these good for people who have IBD, not have IBD?

The Well-Fed Microbiome is mainly for people in general good health, or those with occasional symptoms. So it’s not specifically aimed at people who have IBD. ‘Phase 1’ for people with digestive symptoms has low-FODMAP recipes that are meant to calm things like bloating, distension, and gas. Then the ‘phase 2’ is for when the symptoms have gone away, to maintain a fairly high-fiber diet with lots of variety, which is basically the best diet we know of to maintain a diverse, well-fed microbiome.

For people with IBD, it’s a classic phenomenon that everyone has a slightly different diet that helps keep their symptoms in check. With the cookbook, some recipes might work and some might not work. At this stage it’s basically trial and error for each person -- but believe me, researchers are certainly trying to determine the best diet for those with IBD on an individual level! 

We see so much about probiotics which - you know compared to 5 years ago this is a huge revolution - but what about prebiotics?

Prebiotics are substances that help feed beneficial bacteria in the gut -- so they’re a promising way to change the microbes for the better in IBD. So far there’s not enough research to know exactly which prebiotics could help and in which amounts, but watch this space in the years ahead! Prebiotics are very attractive because they are often types of fiber that can be incorporated into your diet quite easily.

What’s the most important message to get across about the microbiome and IBD?

I think preventing IBD in the first place is the low-hanging fruit for how we can leverage the microbiome. This means if you have close relatives with IBD, pay close attention to your diet and other IBD risk factors such as smoking. Make sure you’re sticking as close as you can to a Mediterranean diet pattern, because people with that type of diet have a better chance of avoiding IBD. This applies no matter what your age -- older adults are increasingly getting the IBD diagnosis, so now is the time to shift your diet accordingly. Sweet drinks and processed meats, for example, may act through the microbiome to predispose you to IBD. So it’s best to avoid them except for special occasions.

If you live with IBD, take the chance to educate your family members (i.e. people who share genes with you) about the dietary risks, and support them in getting varied sources of fiber in their diets! Other than that, stay tuned because I think in the next five years we will see some novel microbiome-focused therapies on the market that could make a big difference to your condition.

Kristina thank you so much for your time. I think in terms of the microbiome, we have distilled this topic down to something our readers can really grasp on to. Hopefully we see some advancements in the near future. As always, please keep doing what you’re doing!

This insatiableness for pain is unparalleled - Pain Awareness Week

As we first started reaching out to the community Erin was always eager to support us in any way, all the way from the West Coast. We caught up with Erin as it was finally time to share her story. Erin can you introduce yourself?

Hello, my name is Erin Fernie and I currently live in Vancouver with my husband, Ciarán and our two cats, Boris and Ozzie. 

I remember the first time I really felt pain. I’m talking teeth-clenching, keeled over, white knuckle kind of pain. It was new and different from the pain I’d previously experienced with the two concussions and literal thorn in my foot.

I had only been thirteen for a couple of months, so when I first felt the sharp pangs shoot across my lower-quadrants, I thought to myself: Ok, Erin. This is it. I am finally going to be a participant in the pads versus tampons debate that echoed throughout the girls’ washroom. However, there was no blood, only the mind-numbing-red-hot-searing-pain which would accompany me to this day. 

The pain made it difficult to stand-upright so, my mom took me to the hospital where my abdomen was pushed down upon as though it were soft, pliable dough ready to be kneaded. The doctor dismissed our concerns for appendicitis as I did not fit his ‘textbook definition’ of screaming and hitting his hands away, instead of simply crying when he applied pressure. So, he sent me home with an appointment for an ultrasound the following morning as my white blood cells were elevated showing signs of an infection.

The ultrasound showed not only inflammation but a clear substance surrounding my appendix. In fear it had ruptured, I was rushed into surgery for an emergency appendectomy. As the gurney glided down the hallway, across the lightly scoffed two-toned beige vinyl flooring towards the operating room, I was overcome with two emotions. The first was vindication that my pain had been validated. And, secondly, anxiety, as while the emergency room doctor did not fully dismiss my pain, he did not fully believe it either.

After the surgery I learned my appendix did not rupture and the surgeon suspected it was a case of acute appendicitis. And, as for that clear substance, he couldn’t explain and wrote it off as an anomaly. Over twenty years later I’d find out there was a strong chance it was endometriosis. 

At sixteen, I was the last of my friends and family to get my period. When it came to the Fernie Household, debilitating periods were run-of-the-mill. So, when I experienced the aftermath of a grenade attack in my pelvic cavity, I assumed I was given the horrendous-cramps-gene, while my sister Kelly got the blinding-migraines-gene. I remember expressing this pain to my family doctor, who, at the time, responded by putting me on the birth control pill. He also reminded me that cramps and discomfort are common during periods. 

I’d spend the next eleven years seeking help from a variety of medical professionals only to have my pain dismissed, claiming it is nothing more than stress. These blatant dismissals began to take a significant toll on my mental health. With no doctor validation, I started to believe there was something wrong with me as everyone else with a period seemed to be functioning just fine. I blamed and hated myself for not being strong enough to endure these-so-called normal cramps. Exhausted of being labelled a ‘drama queen’, I conditioned myself to push through the pain and hide my symptoms to the best of my ability.

In 2009 at twenty-six, it had become not only a struggle to get out of bed, but the wild emotional rollercoaster I was forced to ride during my period was becoming too much. The hours of pain spent in silence, drowned by my cannabis and alcohol consumption, were beginning to catch up with me. While visiting my sister for the holidays, my body surrendered to the latest battle and I was admitted to the hospital with severe pelvic pain and nausea.

After fifteen months of being subjected to a plethora of tests and medications, in March 2011 during exploratory surgery, lesions were discovered on my right and left uterosacral ligaments.

There it was.

I finally had validation.

My pain was real. 

And, it had a name - Endometriosis.

Since the exploratory with ablation surgery I have undergone five more surgeries, four of which were related to my endometriosis. My next surgery was ablation and only a few months later in October 2011. It would be almost three years and a cross-country move later before my first excision surgery in July 2014. The next surgery was on January 3rd, 2018, eight weeks to the day before my wedding. The surgery was excision, dilation and curettage along with resuspending my abnormally retroverted uterus in hopes it would help with the pain and also for future family planning. During my six-week post-op transvaginal ultrasound, we discovered my uterus had shifted from the common anteverted position back to retroverted. The sutures put in place to hold my womb, while still intact, were being stretched as my uterus moved. The pain was excruciating. July 26th, 2018, I underwent my fifth endometriosis surgery in just seven years, a hysterectomy and left-oophorectomy. 

Unfortunately, my symptoms did not improve and led to another congenital disorder diagnosis - an aberrant right subclavian artery. Instead of being formed off my right common carotid artery, my right subclavian artery formed on my aortic arch and wrapped around my esophagus causing a compression on both my vagus nerve and esophagus as well as causing incorrect blood-flow to my brain. On November 4th, 2019, I underwent a thoracotomy to remove my right subclavian artery from my aortic arch and reattach it to my right common carotid artery.  

I wish I could say now at the end of 2021 at the age of thirty-eight that my symptoms have gotten better, but, in fact they have gotten worse. I am still working with my endometriosis surgeon at the The Centre for Pelvic Pain & Endometriosis in Vancouver trying alternative medicines and therapies in hopes to help manage these symptoms. 

I have left my film career and have decided to dedicate my time to healing, learning and researching while raising awareness and advocating for those also suffering from chronic pain.   

“I blamed and hated myself for not being strong enough to endure these-so-called normal cramps.”

— Erin Fernie

Erin this - unlike many of the endometriosis stories I have heard - seems far more surgical and invasive. Through it all you have stayed so strong. Can you try to explain what the pain feels like for each of these issues?

Depending on the day, I like to refer to my remaining ovary as my Ovarian Rat Queen, Gloria (the female version of the Rat King from the Nutcracker), who gnaws and scratches her way through my insides. Then there are other days when Gloria isn’t enough and my endometriosis calls over Jigsaw, turning my body into the Saw chamber of horrors. 

The pain and nausea are unpredictable and relentless making life quite difficult. The physical symptoms are one thing to deal with on their own, however, the mental toll chronic pain takes is another thing altogether. 

You so eloquently described your diagnosis above but can you give us a snapshot of how the diagnosis was ‘dismissed’ over the years?

In my early-twenties I saw three different gastroenterologists for my nausea, bloating and pain. The first claimed the pain was stress and in my head and I rethink my career in the film industry. He even went as far as suggesting to my family doctor he talk to me about stress control. The second claimed it was a form of irritable bowel syndrome (IBS) and recommended a low-FODMAP diet. When the symptoms persisted, he blamed me claiming I had not been following the diet, even though I had been. I asked to be referred to the third gastroenterologist who agreed with the second gastroenterologist, it was nothing more than IBS and recommended meditation and yoga for stress.

Did any of your doctors tell you that you have X because it’s more prevalent in women with Y? Just wondering if there is a clinical link between anything you’re battling.

I am convinced there is a connection between endometriosis and the gut. It seems like almost everyone diagnosed with endometriosis has some sort of gut issue and/or most likely was misdiagnosed or given the blanket-diagnosis of IBS. There have been some studies recently published about endometriosis and the effect of it on the gut microbiota, including one study that showed an abundance of twelve different bacterias in the gut of patients diagnosed with endometriosis. If you are interested in these studies, you can read more at PubMed.com 

What are some of the more modern medicine techniques that have worked for you?

I won’t lie, that is a bit of a tough question as my symptoms have only gotten worse. However, with that said, excision surgery was more successful regarding keeping the stabbing pain away for longer than the ablation surgery. 

Have you ever reached a point where you had to think outside the modern medicine box? If so, what did you do that helped with the pain?

Of course. In order to help manage these symptoms I use cannabis everyday. I have found consuming cannabis to be more effective at allowing me to feel more human than when I take hydromorphone. Thanks to my incredibly supportive partner turned caregiver, Ciarán, minces fresh ginger into a tea bag for me daily to have with hot water and honey to help with my nausea. 

Generally speaking, are you open to alternative therapies such as osteopathic, pelvic floor, myofascial massage, acupuncture?

Absolutely! I am currently waiting for an appointment to try Intramuscular Stimulation (IMS) which is similar to acupuncture. In the past, I have found massages, acupuncture and cupping to help relieve some pain. 

What would you tell our readers in order to help them consider alternative therapies?

Endometriosis affects everyone differently. And while sometimes it may seem next to impossible, try not to be discouraged if one or more of the therapies do not improve your symptoms. It is an ongoing process of trial and error that takes time.

And lastly, what would you tell your younger self about pain management?

I would tell younger Erin that the trauma created by this disease’s insatiableness for pain is unparalleled. And, there is nothing that I can do to prepare for how it will infect and spread throughout my life. I would remind myself to be more patient and kinder to myself as I grieved the life I was losing and to stop adding so much pressure to myself to make sense of a disease the medical community is still researching and understanding. 

Anything else you want to tell our readers?

Trust yourself.

Listen to your body. 

You are not alone.

I didn't want pain to define who I was - Pain Awareness Week

Through our interaction with the chronic pain community we continue to meet extraordinary individuals who continue to advocate for themselves. A few weeks ago we met up with Francine, who suffers from PCOS and lower back pain. We just knew we had to share her story. Francine why don’t you introduce yourself.

My name is Francine Charbonneau, I am 41 years young and live in the Ottawa countryside. I grew up in a small Northern Ontario town, loving nature and life’s simplicities. My partner and I are parents to two wild kiddos (a three-year old and a 16 year old), and a very large cat. I work in health care communications for a member association. I’m a passionate mental health advocate and volunteer in animal welfare. I enjoy nature, football, books, pizza, camping, wine, puzzles, karaoke, and warm hugs. 

My chronic pain journey is two-fold. 

PCOS: In my teens, I suffered from irregular and painful periods, which at times, would affect my daily functioning. I rarely spoke about my period to family and friends, and assumed periods were like that for everyone. I suffered silently for years. It was not until my late 20s when I was referred to a gynecologist that I realized that intense cramping is not okay and having irregular cycles is often an indicator that your body isn’t happy. I was diagnosed with polycystic ovarian syndrome (PCOS), and told to come back when I was ready to conceive. 

Chronic lower back pain: My back pain story is a bit of a slow burn. In 2005, I was hit (as a pedestrian) by a car in front of Parliament Hill. The left side of my body took the brunt of the hit, but at the time, I considered myself lucky to “walk away” with only a chipped elbow, a concussion, and deep tissue bruising. I never received physical therapy. Ten years later, I fell down a flight of hardwood stairs – again, on my left side. Aside from more deep tissue bruising and an internal scar, I didn’t think anything more of it. I was in the gym five days a week, probably in the best physical shape of my life, and felt invincible. About seven months later, I started experiencing sharp pain in my lower back and numbness in my left foot. I soon after underwent a surgical discectomy at L5-S1. Although the surgery addressed the structural issue, I was left with spinal stenosis and unexplained chronic pain. The post-operative journey continues…

But through this journey, I am so grateful for my supportive partner, family, friends and workplace. Without them, the fight would be that much harder.

“The irony is not lost on me that PCOS can often contribute to weight gain, and that losing weight is often challenging because of PCOS.”

— Francine Charbonneau

Can you describe what your pain feels like?

Any pain tied to my PCOS was mostly experienced prior to my diagnosis. I remember having extremely irregular periods, and when I had them, the pain was often unbearable. I remember a former colleague walking into my cubicle one day to find me breathing as if I was going through childbirth contractions (I’ve had a kiddo…It was pretty close!). Once I found the right contraception for my body, the pain diminished greatly. I got an IUD after childbirth, and although I would like to remove it soon, I am worried that my body will default back to those excruciating cramps.

In regards to my chronic back pain, pre-surgery, it was tingling, sharp and debilitating pain. Post-surgery relapse, I would describe the pain as constant, dull, non-specific, and exhausting – yet I’ve come to be familiar with the pain and accept it most days. 

Since you do have a few different illnesses that you are working with, how did the progression of diagnosis go for all of these? 

With PCOS, things didn’t really come to light for me until I was in my late 20s. There was not a lot of awareness regarding PCOS at that time (late 2000s). Luckily, my family doctor is proactive and when I told him about my irregular periods, unexplained (mid-section) weight gain and pelvic pain, he referred me to a gynecologist who asked the right question and ran the right tests. After that though, he essentially told me to “manage it” and come back when I was ready to conceive. From there, I was on my own with Dr. Google.

The back diagnosis was a long road. I didn’t have a specific injury that led to my pain, which made it frustrating for practitioners. I saw doctors, sports med docs, physiotherapists, chiros, massage therapists. It was only after my leg gave out in the bathtub that I knew I had to advocate for myself. A visit to the ER solved nothing – “Here is some morphine”. A few weeks later during a wild snowstorm a few days before Christmas, I drove myself to my family doctor’s clinic. He was out of town, but his colleague saw me and quickly realized my left ankle reflex was no longer functional. She ordered an emergency MRI that revealed a full disc extrusion at L5-S1. I had discectomy surgery a month later.

Did any of your doctors tell you that you have X because it’s more prevalent in women with Y? Just wondering if there is a clinical link between anything you’re battling.

Oh yes! The stigmatization ran rampant for both diagnoses. With PCOS, the one common thing medical practitioners were focused on was my weight (FYI – at time of diagnosis, I was 5’4 and 150 lbs)! “Well, the one thing that can help in managing PCOS is keeping yourself at a healthy weight.” The irony is not lost on me that PCOS can often contribute to weight gain, and that losing weight is often challenging because of PCOS.

What are some of the more modern medicine techniques that have worked for you?

Managing my back pain was and continues to be a full time job. I’ve tried it all: Pharmaceuticals/pain killers, Lumbar Epidural Steroid Injections, pain clinics, chiropractic care, physiotherapy, etc. Some have worked short-term, but nothing has ever fully and permanently eliminated my pain or addressed the root cause of my pain.

Have you ever reached a point where you had to think outside the modern medicine box? If so, what did you do that helped with the pain?

About a year after my back surgery, the pain came back – but a different pain. A follow up MRI showed spinal stenosis (scar tissue that is common after invasive surgery), but no other structural issues. I had had a terrible painkiller withdrawal episode and no longer wanted to take medication. In desperation, I continued riding the merry-go-round of the usual suspects stated above, but nothing helped. Then for a few years, I gave up. I just accepted the pain as my new normal. 

It was only this year (in large part thanks to the pandemic and my rejuvenated focus on self-care) that I really picked myself up and told myself that I didn’t want my pain to define who I was anymore, and that there had to be a different healing path. I accepted that I no longer had a structural issue – I had a pain issue. And although the pain is very real and not in my head, I needed to shift my focus and look internally. The more I understand about my pain, the less I experience pain. 

Over the last year, I have read and consumed so much literature on chronic pain in hopes of finding something that resonated with my case. From the late Dr. John Sarno’s tension myositis syndrome (TMS) theory, to the Dr. Stuart McGill Back Mechanic’s method (looking at how the spine works, the mechanisms of pain, and proven ways to eliminate pain and restore pain-free activity), and to the numerous studies on the connection between pain and our Central Nervous System, I’ve recently been able to carve pieces of each approach and apply it in a way that is allowing me to heal myself, with the support of like-minded professionals in the alternative therapies space.

Generally speaking, are you open to alternative therapies such as osteopathic, pelvic floor, myofascial massage, acupuncture?

It is the only approach that has consistently been working for me. For the first time in many years, I feel that I am on a healing path. I am currently working with an osteopath, a pelvic floor physiotherapist, and a physiotherapist (that approaches chronic pain with a holistic/body, mind and spirit lens). All this is done in combination with my own internal work through mindfulness, nature, stretching, visualization, my personal support system, and professional therapy. 

Francine thank you so much! What would you tell our readers in order to help them consider alternative therapies?

From a young age, many of us are programmed to trust mainstream medicine. My initial back issue was surgical, but there are so many unnecessary back surgeries performed every day, often out of patients’ desperation and despair. We just want the pain to go away…now. 

I do believe there is a place for traditional medicine and pharmaceuticals. Science and many remarkable individuals have helped me throughout my 41 years. However, when it comes to invisible chronic pain, I encourage people (if appropriate to their situation) to take a step back and consider taking a more holistic approach to pain management. In regards to back pain, and even PCOS in this case, there are so many powerful connections between different body and mind systems. Our already overloaded, understaffed traditional medical system is simply not equipped to offer this approach. 

Alternative therapies and whole-body/biopsychosocial approaches can often be more successful in identifying and addressing the root cause of pain, as opposed to offering quick and/or temporary fixes. In my experience, alternative therapies also give me a sense of belonging, and that I am more than my diagnoses. 

And lastly, what would you tell your younger self about pain management?

Our bodies are complex. Pain is complex. The health system is complex. I would tell my younger self to always trust her intuition, to continuously advocate for herself, and to always remember her worth. 

Anything else you want to tell our readers?

1. No matter how hard it gets, remember that you are so much more than your pain. Do not let it define you.

2. Don’t ever let anyone (especially a medical professional) dismiss or undermine your experience. 

3. Knowledge is power. Read, ask questions, and find allies. Empower yourself to make the right choices about your condition. No one’s journey is the same.

4. Believe that you can and will live a fulfilling, productive life.
   
   
   
   

My pelvic pain has stunned me like lightning - Pain Awareness Week

We are so excited to meet Kim, who comes to us from British Columbia. It’s amazing to get a handle on what patients from across Canada deal with when it comes to Endometriosis and how we come together as a community. More importantly, Kim was able to capture what pain from endometriosis feels like. Kim can you introduce yourself?

Hello, My name is Kim and I identify as she/her. I am a second generation Filipino-Canadian and I live, learn, work and play in Coquitlam, BC on the unceded traditional territories of the Coast Salish Peoples of the QayQayt and Kwikwetlem First Nations. I am a third year Nursing student and in my free time, I enjoy reading, cooking, gardening, and being outdoors. Destigmatizing mental health and bringing more awareness to women’s reproductive health issues are close to my heart. Thank-you for the opportunity to share my story and for acknowledging the diverse health care needs of Canadian women. 

I was diagnosed with Stage 4 Endometriosis in 2019 via emergency laparoscopy. I experienced painful menstruation from a young age. I learned that painful periods were normal because my mom and others also experienced them. As I grew older, my pain and other symptoms affected my functionality and quality of life. I missed school and work because I was in too much pain to move. I was too tired from constantly being in pain; I wasn’t able to sleep properly. My periods got heavier and I was almost anemic. Despite being active and eating a healthy diet, I started to notice that my hair was falling out, my fingernails were thinning and peeling, I bruised very easily, I was often dizzy and light-headed from changing positions, I was moody and depressed and I developed cystic acne . My concerns grew, but when I would go to the doctor, I would be told that my pain was normal and to try to “relax” or take Tylenol and Advil. This caused me to internalize my pain and I developed a tolerance, as I’m sure many who suffer from chronic conditions can relate to. It got to a point where over-the-counter painkillers did nothing for me. I developed different symptoms, got different tests done, and was even referred to a urologist. After almost twenty years of chronic pain, my body was screaming for help. After writing my first nursing midterm exam, I picked up my bag, handed my paper to my instructor, left campus, and admitted myself to emergency. I begged the ER doctor not to send me home without further assessment. Armed with half a semester’s worth of nursing knowledge, I knew enough to advocate for myself and that the way my symptoms were judged over the years were costing me my health. A simple ultrasound was enough to rush me into surgery.

“Sometimes, I imagine my insides as a damp rag that is continuously being twisted and wrung. At other times, it feels like there’s an industrial meat grinder inside, pulverizing me into bits. ”

— Kim Palmero

 As this is pain awareness week, can you describe what your pain feels like?

With endometriosis, cells that behave like the ones in the endometrium or uterine lining, are found outside of the uterus. When we bleed during our period, our body is getting rid of endometrial tissue. However, with endometriosis, these cells also bleed, but because these cells are located outside of the uterus, there is nowhere for the blood to go. It stays in the pelvic cavity causing inflammation and over time, can lead to adhesions and the development of scar tissue, causing increased pain and other symptoms. 

I’d like to preface my description of my pain with a reminder that pain is individualized and that people with chronic issues build a tolerance to it in order to remain functional. We learn to hide it well. “Chronic” also refers to persistence and recurrence; our healing and recovery are not linear processes. 

My baseline pain is a 3 or less, using a 0-10 pain scale. It occurs daily and can be sporadic, ranging from pulsing to what my specialist refers to as “chandelier pain.” At its worst, my pain has stunned me like lightning. It’s like when you get a cramp and can’t move - my entire body freezes and I experience a deep, silencing, white pain. I have bowel endo as well; it’s deep and honestly feels like a broom handle was just jammed into me, impaling me. 

My pelvic pain is another story. Sometimes, I imagine my insides as a damp rag that is continuously being twisted and wrung. At other times, it feels like there’s an industrial meat grinder inside, pulverizing me into bits.  Every so often, the pain feels like I’m being carved like a pumpkin, but the carving is being done by a really strong man who is holding a metal spoon with a firm grip, scraping my guts raw. 

This is only a description of my physical pain. My experiences were very distressing and I’m not sure I can describe the weight of how it’s affected me. Imagine how you would feel if you were told you might have cancer because there is a grapefruit-sized mass that’s been growing inside of you all this time. Or how it would feel to be told that a symptom of your disease is infertility, and that you have the most severe stage of the disease, for which there is no cure. It makes you feel very lonely and like you don’t matter. 

Kim can you give us an idea how the progression of diagnosis went for you? 

I was fed the narrative that period pain is normal. I was told to identify my stressors and cope with a healthy lifestyle. When this didn’t work, Tylenol and Advil were recommended. I was prescribed anti inflammatories and used heat packs but it didn’t bring much relief. My symptoms started to branch out; I was prescribed more medications to try, had different tests done,  and was even seen by a urologist. But the reason why I was experiencing symptoms was never properly assessed. Heavy bleeding, abdominal pain and dizziness can be explored in so many directions, but as soon as I brought up my period, it seemed to be enough to close the book shut and call it a day. I was minimized and dismissed. It felt like my gender was my diagnosis: you have periods because you are a woman, and because you are a woman, you are expected to have pain and worse, be quiet about it. Women’s pain is normalized and our reaction to it is considered abnormal...we’re painted with a broad brush that labels us as difficult, dramatic, attention-seeking, or hysterical. I didn’t get an answer until I brought myself to emergency and ended up alone on the table.

Did any of your doctors tell you that you have X because it’s more prevalent in women with Y? Just wondering if there is a clinical link between anything you’re battling.

There hasn’t been enough research or funding for me to answer that, although there seems to be a positive relationship between the likelihood of an endo diagnosis if family members also experienced these symptoms.

What are some of the more modern medicine techniques that have worked for you?

Surgery really improved my quality of life but I’d like to stress that it’s not a cure; endo is chronic and progressive and should be approached holistically. I was referred to tertiary care at the BC Women’s Centre for Pelvic Pain and Endometriosis. The interdisciplinary approach benefited me because I finally felt safe and validated. I trialed different medications to manage my symptoms post-op. Each attempt presented side effects. My current management plan, a combination of oral and hormonal medications, is no exception, but works for now. 

Have you ever reached a point where you had to think outside the modern medicine box? If so, what did you do that helped with the pain?

Cannabis has brought me temporary relief mentally and physically. Avoiding certain foods has also helped, and I am exploring an anti-inflammatory diet. Endo was very distressing to my mental health. My diagnosis was very traumatic and I still struggle with events surrounding it. Counselling, therapy, EMDR, guided imagery, mindfulness, grounding, deep breathing, yoga,  journaling and writing have helped. I am also exploring the concepts of narrative medicine and graphic medicine. 2 years following my diagnosis, my focus has shifted on prioritizing my mental health and self-care. Leaning on a true support system, reaching out to other women, setting boundaries, being in nature, and spending less time on social media have been restorative and healing. 

Generally speaking, are you open to alternative therapies such as osteopathic, pelvic floor, myofascial massage, acupuncture?

I am! Pelvic floor physio was recommended to me. I did a session and it just didn’t feel right at the time. I’m open to trying it again, as well as other therapies, but as a student, these tend to be less accessible or limiting. I’m interested in sustainable, long-term therapies.

What would you tell our readers in order to help them consider alternative therapies?

Prioritize your well-being and do what’s truly best for you. If you are interested in therapy and are met with resistance, ask questions and do research. 

And lastly, what would you tell your younger self about pain management?

Pain isn’t normal. Tylenol and Advil are not enough for this. It’s not going to go away.

Anything else you want to tell our readers?

It’s ok to ask for help and it’s ok to stand up for yourself. Avoid judgy people and focus on yourself and the people who really care about you. Trust your gut if you feel something isn’t right and ask for a second opinion if you disagree. Prioritize and protect your mental health. You are deserving of health and safety. You have to live in your own body and listen to your own thoughts. Your experiences are real and you are allowed to have feelings. 

Women are deserving of support, especially from each other. My view is that we all fall somewhere on a spectrum in terms of reproductive health. I fall in with women hoping to conceive one day. I’ve spoken to women who have miscarried, experienced infant loss, successfully conceived and birthed, are postpartum, women who have had hysterectomies, and others who are menopausal. What I’ve observed is that women who successfully conceive, carry, and deliver receive a lot of acute support, as they should. It’s easy to show up for that and be present. But there’s a real gap postpartum and even before pregnancy. A lot of women go through a hard time and sometimes feel the whole “it takes a village” expression falls short. For the rest of us who aren’t carrying or holding newborns, it can feel like, “where is the village? I feel that my surgery was prioritized to preserve my ovary and reproductive function due to my age. I’m grateful for it, and it’s definitely a goal, but it left me wondering how my care would be guided if it wasn’t. Why were my needs only taken seriously when it had to do with having a baby? If a pregnant woman states she has pain and abnormal bleeding, we listen and we act, rightfully so. Where is the urgency for everyone else? Why does it take an average of 10 years for women with endometriosis to receive a diagnosis? Why is there a different excuse to dismiss women at different stages of her life? (You’re too young, you’re too old). I hope other women are curious too. Ask questions and please be kind. Empathy is huge, for yourself and others. Pain, invisible illness, and mental health are tough; it sometimes feels as though you have to prove that you are sick or suffering and you shouldn’t have to. These are individualized experiences; after over 20 years of chronic pain my 3/10 pain is not the same as yours. People with chronic pain learn to push through and show up because we can’t spend our lives in bed all day. Be compassionate to others and yourself

Different flavors of pain - Pain Awareness Week

Hello! I’m Julianna and I’m a high school teacher in Toronto, Ontario. I’m unhealthily obsessed with Musical Theatre, the Green Bay Packers, sharks, and live tweeting “The Bachelor” because I’m nothing if not well-rounded.  

My journey with chronic pain started the day I got my period. It was some day in August when I was 13. (The details are fuzzy because my mother called all of Italy to let them know I was a woman so I blocked out a lot of that for survival purposes). From the very first day of my very first period it was excruciating. My adolescence consisted of me being on the floor of my classrooms in the fetal position in agony. I was met with constant criticism and repeatedly told that blinding pain was “normal” and to deal with it and move on. 

This insanity continued into my 20s with some extra side dishes like anxiety and depression added to the buffet of health issues. Things were getting worse despite my making major changes like increased exercise and dietary shifts. I got a new family doctor when I was 28 because I thought a younger doctor might be more “with it” in terms of endometriosis care, but I quickly learned that medical school hasn’t changed in eons because this doctor was no different than the litany of misinformed practitioners left in my wake before this one. I had done my own research (like so many of have to do) and I said I was the textbook definition of endo and I wanted a referral to a gynecologist. He refused. Up until this point in my life I would definitely have defined myself as a doormat pushover. However, that day, my spine grew three sizes a la “The Grinch” and I told him I wasn’t leaving until he gave me that referral. He reluctantly did and that referral led to my first surgery. It was exploratory to diagnose endometriosis, however I wasn’t informed enough to tell them not to proceed if they found any, so that surgery ended up being an ablation, which is not helpful and actually made things much worse for me. But it did result in a diagnosis of Stage IV endometriosis which is what I needed to move forward. 

After that initial surgery and diagnosis I was put on good ‘ole birth control (it’s AMAZING how much doctors are still in love with that tiny pill) to try and manage my symptoms. It controlled my periods and calmed the bleeding a little bit, but pretty soon into the treatment everything started going downhill again. The pain was back with a bloody (literally) vengeance and I had to seek out a new gynecologist to help me out. I ended up in the office of a specialist who knew about endo but worked out of a fertility clinic. Fertility is not my priority and once that was made known, I fell to the bottom of the priority list in a hurry. This gyno put me on Visanne which puts your body into a chemical state of pregnancy in order to hit “pause” on your ovaries and their hormone factories. This worked in that it stopped my periods but it also resulted in me gaining 70 lbs over two years which then resulted in further complications (I was teetering on the edge of diabetes) and no relief from the pain. When it became excruciating just to have a full bladder, he decided another surgery was needed. Thus began my odyssey to find another surgeon. I was turned down by FIVE surgeons over the next 10 months because my case was “too complicated” and they were “not qualified”. I finally ended up in the care of my current surgeon who knows endo inside out and is an expert in Minimally Invasive Gynecological Surgery (MIGS). He eventually performed an expert excision surgery and removed endo from my bladder, bowels, both ovaries, uterus, ureters and uterosacral ligaments. It was having a REAL rager in there. I also happened to have a partial thyroidectomy that year to remove papillary thyroid cancer so between the two surgeries, my body was over everything. The surgery provided temporary relief but, again, the endo came roaring back. This time, it decided to take my bowels hostage which resulted in many partial blockages and generally feeling like barbed wire was snaking through my insides every time I digested food. We booked another surgery last January 2020, but it was cancelled multiple times on account of the apocalypse. I FINALLY had it this past February 24, 2021 and am currently dealing with the post-op pain, which has been plentiful. Hopefully this surgery will allow me to have a little more time pain free, but we won’t really know until I’m healed. However “healed” my pelvis can be after being carved up multiple times. Endo is just a PEACH! 

“When my bowels join the party I get the aforementioned “barbed wire snaking through my insides” pain, and when I have a full bladder and whilst I’m emptying my bladder I get a very sharp throbbing pain.”

— Julianna Ozorio

Can you describe what your pain feels like? If possible, can you tie the pain to the disease?

I have different “flavours” of pain, as I call it. I often experience very sharp pain emanating from my left ovary (the left is always the worst side) where it feels like my ovary has been armed with an ice pick and is trying to stab its way out of me. I also have the classic “cramps” where my uterus makes it known how displeased it is with the adenomyosis I also have (endo in the muscles of the uterus) and stages its own protest. I have to respect that kind of hustle. When my bowels join the party I get the aforementioned “barbed wire snaking through my insides” pain, and when I have a full bladder and whilst I’m emptying my bladder I get a very sharp throbbing pain. So, I never really know what kind of pain I will be graced with throughout any given day, but I DO know that I will never have NONE, which is super fun. 

Since you do have a few different illnesses that you are working with, how did the progression of diagnosis go for all of these?

When I initially sought help for my issues in my late 20s I was sent to a gastroenterologist who performed a colonoscopy. Because it came back normal (because they were looking up the wrong hole) I received the EVER so infuriating diagnosis of IBS (which I have renamed “Illegitimate Bull Shit”).  I had to fight that for years because too many doctors were willing to accept that “diagnosis” as the answer to everything, despite the fact that the vast majority of my symptoms had nothing to do with my bowels. It took me a grand total of 15 years to get a diagnosis of endometriosis and adenomyosis because of a general willful ignorance of doctors. 

Did any of your doctors tell you that you have X because it’s more prevalent in women with Y? Just wondering if there is a clinical link between anything you’re battling.

I am absolutely convinced that there is a link between my thyroid cancer and my endo, however neither of my specialists seem to think so because all specialists think the part of the body they specialize in is THEE only part that exists. I was told by many doctors that excruciating pain during menstruation is normal though, which brings on a fresh new wave of homicidal rage every time I hear it. 

What are some of the more modern medicine techniques that have worked for you?

The only thing that has proven to be effective for me is excision surgery. It is the only treatment to restore any quality of life for me, and how I have been able to put together a full picture of the war zone that is my pelvis. I can most definitely share what DID NOT work and that is hormone therapy. I was put on birth control, Visanne and Lupron and NONE of that garbage helped and only made my life harder and put further strain on my body. 

Have you ever reached a point where you had to think outside the modern medicine box? If so, what did you do that helped with the pain?

Absolutely. I started using CBD oil to manage the pain and I started going to acupuncture regularly and that has made a HUGE difference in terms of pain management. My acupuncturist specializes in reproductive health and is constantly educating and re-educating herself on endo and her treatments have most definitely helped with pain management. 

Generally speaking, are you open to alternative therapies such as osteopathic, pelvic floor, myofascial massage, acupuncture?

I absolutely am! I recently started seeing an osteopath and she has recommended pelvic floor therapy which I am very open to, just haven’t started on account of the apocalypse and everything closing every 10-15 minutes. I have definitely enjoyed the osteo sessions, but that could be because I’m so starved for human touch. Ha! 

What would you tell our readers in order to help them consider alternative therapies?

Any time you are seeking out new treatment from anyone (doctor, specialist, practitioner, etc) do you research! Not everyone has the same training and not everyone takes the initiative to learn about advancements in treatment or diseases. Having said that, SO many of the practices (like acupuncture) have been around for centuries longer than our version of medicine and have proven effective for that long. I’m a firm believer in balance. Would I turn down surgery in favour of acupuncture? Absolutely not. But has acupuncture helped me in conjunction with the treatment of modern medicine? HELLZ YES. It is your body and you and ONLY you know what helps and what hinders. If you find something that helps, go with it. 

And lastly, what would you tell your younger self about pain management?

“Julianna, Advil are NOT Peanut M&M’s. Stop eating them like they are”

OH and also: 

“SEARING, UNBEARABLE PAIN TO THE POINT OF FAINTING AND BARFING IT NOT NORMAL AND DO NOT LET ANYONE TELL YOU IT IS!!!!!!!!!!!!” 

Anything else you want to tell our readers?

Too many of us have been programmed to believe that seeking help for pain is “weakness” or just “complaining”. It is not. Taking time to get your health under control is not weakness, it actually takes an incredible amount of strength to prioritize your well-being. Pain is your body’s way of telling you something is NOT right. If you ignore it, it will find a way to get the message through and at that point you won’t have control over the circumstances. Listen the first time that little voice tells you something’s up, because it will save you a lot of time and pain in the future. 

Struggling For My Life While Battling Painful Periods - Invisible Disease Week

We close out this week’s blog series with the concept of battling a life threatening illness while coping with pelvic pain; not something we often think about. We had a chance to sit down with Sara Aldrich who opened up to us about her struggle with Cystic Fibrosis and undiagnosed period pain. 

My name is Sara Aldrich and I am a 23 year old student. I live in Ottawa, Ontario and was diagnosed with Cystic Fibrosis within my first year of life. CF is a chronic Genetic disease that primarily affects the lungs and digestive system. The best way to easily explain CF is that you are drowning in your own mucus. Over the past 3 years, my health has taken a turn for the worst and I have been told to “prepare for death”. As a 23 year old being told that my life is coming to an end, I’m desperate for help and answers. 

In addition to my CF, in the past 2 years I have been struggling with excessive bleeding. I have my period about 3.5/4 weeks in a month, resulting in consistent pain, exhaustion, dizziness and a sense of helplessness. I have seen several doctors and a gynecologist regarding these issues and have had many tests done to find out answers. All my blood test results and ultrasounds have come back clear, and I have been told that I just need to go on birth control to monitor the blood. I have recently had an IUD inserted, and although it has not yet been 6 weeks since having it inserted, I am still bleeding excessively and it is affecting my day to day activities and routines. I feel like the IUD is just a band aid solution to my problem of bleeding, and I am in search of ACTUAL answers as to what is wrong. 

“I think now that I know I get my period whenever I have an infection, I kind of expect it so I have gotten used to controlling it. ”

— Sara Aldrich

Knowing that CF is a lung-related disease, can you try to explain what it feels like? Is it pain? What can you tell us about what your periods feel like?

It’s very difficult for me to explain my pain. In terms of my CF, the pain I feel is almost like my lungs are too big for my body. It feels like I’m constantly trying to catch my breath. In addition, I have severe headaches almost daily and they only go away with extra strength Advil. I also am constantly throwing up due to the access of mucus in my body. 

In terms of my period issues, I get SEVERE cramping, and often the cramping comes at random times. To ease the pain, I usually sleep with a heating pad on my stomach every night. As said before, I also get severe stomach pain because of the lack of poops. 

Since you do have a few different illnesses that you are working with, how did the progression of diagnosis go for all of these? They must have been such completely different trajectories.

On April 6th 1999 I was diagnosed with Cystic Fibrosis. I was in the hospital for 5 weeks with what they believed to be pneumonia. As I was getting my blood taken by a student nurse, I was screaming and crying which was causing me to sweat. When my mom asked my dad to get a wet cloth to wipe me down because I felt like “a salt block”, the student nurse asked if I always felt salty. My mom said all the time, which resulted in my getting tested for Cystic Fibrosis. My test came back positive, and then they tested my brother as he had the same symptoms as me. He also came back positive. My mom and dad felt like the medical system had failed them. My brother was already 4 years old at the time of his diagnosis, meaning he was 4 years behind in treatment. Our family doctor ignored all the signs, even when my parents pointed her towards the runny and inconsistent bowel movements, salty skin and trouble keeping food down. All evident signs of CF.

In terms of my ongoing issues with my period, I have yet to have a diagnosis. I have had many people tell me that it could be endometriosis, but once again, I have no answers. Not only am I bleeding pretty much all the time, but I also go weeks at a time without having a bowel movement. This causes significant stomach pain. I have spoken to my doctors about this at least 8 times, and I have been told to take restoralax (a laxative). At this point I am taking restoralax twice daily, sometimes 3 times and it has not improved my bowel movements. I have also been told to take PegLyte to try and clear any blockage, and that also has not worked. 

It feels weird asking this, but is there anything that helps with the CF? 

My treatments in itself are a full time job. I do physio in the morning and physio in the evening. I use a small machine called a pep to do my physio. The pep helps to expand my lungs in order to allow the mucus out. I then do inhaled medication 3 times a day. At the moment, I am waiting for a life changing medication called Trikafta, which is waiting to be approved by insurance. This medication is the closest thing to a cure, however it is $300,000 a year and cannot be taken without coverage from insurance. I also take a medication called Azithromycin which is the medication used on Covid patients. 

Have you ever reached a point where you had to think outside the modern medicine box? If so, what did you do that helped with the pain?

I have not. 

Generally speaking, are you open to alternative therapies such as osteopathic, pelvic floor, myofascial massage, acupuncture?

If you would have asked me a few years ago if I was open to any of these (especially acupuncture), I would have said no. I hate needles and they scare me so much. However, I’m so desperate to eliminate this constant pain, so the answer is YES. I want and need answers. 

As someone who was once skeptical myself, I think it is so important to consider all the options available. I, as well as so many others are so exhausted and tired of living life in pain. I am ready for alternative therapies to have my questions answered. 

So, I’m just itching to know, what do you do when you have a CF infection and a bad period at the same time and how do you handle that?

Well most of the time I have a bad period while I have an infection because of the medication. The meds they put me on always give me a really bad period. Usually I spend most of my time at home while I have an infection, so it makes it a bit easier to manage the heavy period flow and bad cramps. I usually spend most of my time in bed with a heating pad on my stomach and pop some advils to get through the pain. Its also really nice to have an amazing support system like my mom who usually helps me by making meals for me and running a bath. I don’t know that I would be able to do it without her but she’s always making sure I’m staying in bed as much as possible. I think now that I know I get my period whenever I have an infection, I kind of expect it so I have gotten used to controlling it. 

And lastly, what would you tell your younger self about pain management?

I would tell my younger self that I am not crazy for feeling this way. I am so quick to judge myself and think my pain is not valid. I have been told so many times that there is nothing wrong with me, and I can’t help but think I’m crazy for still not being ok. I am so exhausted from always wondering what is happening to my body.

Lights, Camera, Migraine - Invisible Disease Week

Our next blog comes locally from Ottawa - a fierce warrior who masks a lot of her pain by helping others with pain. Melissa, can you introduce yourself to our readers?

Hi there, my name is Melissa Cunningham. I’m 35 years old and I live in Ottawa. I’m a self-employed personal trainer and mobility specialist. I work with all kinds of different clients; some extremely fit, pregnant, older with balance issues, and some are just starting out, looking to get fit, healthy and active! I absolutely love my job and am extremely passionate about it. I always say the more people I can help the better! However, beneath the surface of all my enthusiastic energy is someone who suffers in silence from chronic migraine pain and dizziness on a daily basis.

“It was as if a million cameras were going off around me. There were flashing lights everywhere. I had no idea what was going on; needless to say, I was very scared.”

— Melissa Cunningham

Can you share how you got diagnosed with migraines?
I remember being absolutely terrified at 13 years of age in grade 8 gym class when all of a sudden, I couldn’t see properly. It was as if a million cameras were going off around me. There were flashing lights everywhere. I had no idea what was going on; needless to say, I was very scared. I sat down in the hall outside the gymnasium waiting for whatever was going on with my vision to subside. In about 20 minutes, my vision returned to normal, BUT the worst headache that I’ve ever experienced in my entire life was setting in. I thought for sure I was going to throw up. I went home from school early that day and just rested. I never threw up but was convinced I would. The nausea was just as severe as the throbbing pain in my head. I could hardly get up from my bed. 

The next day, the pain in my head was significantly better unless I bent over or did something physical, so I went to school. My parents had told me I had a migraine. “Oh well I thought. I’m sure this was just a one-time thing.” So that being said, I carried on and just assumed I most likely would never get another migraine. After all, I hadn’t drank a sufficient amount of water, it was an extremely hot day and I was overexerting myself in gym class, as I always do due to my competitive, athletic nature. “I’m good, I said to myself.” 

Fast forward to the following year and I unfortunately ended up with another acute migraine attack with the same frightening visual aura beforehand. From then on, I started suffering from a terribly debilitating migraine headache about once a year. Although the pain was like nothing I’ve experienced before, and the visual aura being pretty darn scary to say the least, I thought to myself “this seems to happen about once a year so I can live with that.” Little did I know, however, that in May of 2020, these migraines would become chronic and strongly affect my daily life. 

The dizziness hit me first. We’ve all had acute bouts of vertigo so I just assumed it would pass but there was something different about this particular dizziness. It made me feel like I was rocking on a boat. I was very unsteady on my feet and it just wasn’t going away. After a few days of feeling this way I got a headache. I knew then (and no I’m not a doctor but I had a strong feeling) that this dizziness must be linked to my migraines somehow and that something different was happening to me. I’m not sure how I knew this, but I just had a weird feeling. Most people would probably have gone to the hospital or made a doctor’s appointment at that point, but not me. I continued working with clients as well as exercising and working out on my own time, hoping that this dizziness would eventually vanish. The head pain came and went, but did become very frequent; much more frequent than I’ve ever experienced. Let’s just say that having a headache was becoming “my new normal.” 

After a few months, I finally made an appointment with my doctor. She diagnosed me with “cluster headache” and put me on a daily medication to take as a preventative. I initially presented with cluster headache symptoms - red eye including in and above my eyebrow, tearing, watery eye and constricted pupil. I asked her about the dizziness and she said it was completely normal. Ugh. The initial dose of this new medication did nothing to help alleviate the pain so after a few months, my doctor increased the dosage. I finally had a bit of relief. Not enough to be satisfied with however. I continued doing as much research as I possibly could and was realizing that I most likely had something called vestibular migraine as opposed to cluster headache. I told my doctor this and she said that I shouldn’t worry because the medication she put me on is also used to treat vestibular migraine. I needed more relief as I was still living in such terrible pain with debilitating unsteadiness. The headaches became so severe they would actually make me cry. Toppled with the dizziness, I honestly don’t know how I was getting by every day. Did I stop working with clients or exercising myself? Nope. Never. My doctor ordered an MRI just to rule out anything else that could potentially be life-threatening like a tumor or some sort of brain infection. Once again, I knew that this was not the case but nonetheless, I was still a bit nervous for the MRI. (I’d like to add that I don’t like hospitals or doctor’s offices, although I’m sure you already figured that one out!). Results were normal but showed several little white spots on my brain indicating migraine scarring. My doctor then decided to refer me to a neurologist (who, I still have yet to see as the wait list is so long).

So frustrating!! Not only has it been years battling this diagnosis but there is yet a drug that has affected you greatly. Was there anything you could do in the alternative therapy realm that helped at all??

At this point, I started seeing a chiropractor who specializes in cranial adjustments specifically for migraine patients. After about 3-4 weeks of seeing him twice a week, I did start to notice a difference in my headaches. The pain was becoming much less severe. I couldn’t believe it! I didn’t remember what it was like to not have a debilitating headache! Although the head pain was starting to subside, the dizziness was still lingering. I asked my doctor if she could prescribe me something to help treat my vestibular symptoms. She did, but of course this medication did absolutely nothing.

It wasn’t until I recently started seeing a vestibular physiotherapist that I started to see a drastic difference in my life. The trouble with vestibular migraine is that you are dealing with two separate enemies. The head pain, as well as the dizziness. I discovered that each has to be treated distinctly. I have been seeing a vestibular therapist for two months now and I cannot get over the difference in the dizziness. I’m feeling much more stable on my feet and significantly less like “I’m rocking on a boat.” I’m finally starting to see some light at the end of the tunnel. I’m not 100 percent but I’m hopeful that I’ll eventually be back to my old self. 

The head pain also continues to remain on the mend, thanks to my chiropractor who I still see for maintenance (cranial adjustments) as well as my own research. I recently started myself on a very strict vitamin regime. These are vitamins and supplements that are specifically recommended for vestibular migraine. I’d also like to point out that I am no longer on my preventative medication prescribed to me by my doctor. We’ll see what the neurologist has in store for me come November when I see her!

Most people are probably reading this thinking, ‘I know what a headache feels like”. Can you describe what your pain feels like? Is it just in your head or are there other parts of your body that are affected?

The pain is like nothing else I’ve ever experienced. It’s often unilateral, around my eyes and in my temples. My neck often hurts as well. It can be exacerbated with certain movements and physical activity. I’d best describe it as a very deep, pulsating pain that makes me want to scream and cry.

Have you ever been told ‘its just a headache?’
Thankfully I’ve never been told “it’s just a headache...” that definitely would not go over well. Lol. Although, as mentioned above, I did have a friend tell me that I’d probably feel better after I ate something. Not helpful. Hence why I like to stay quiet and rarely discuss symptoms.

Does having migraines limit your ability to do certain things? Has it affected the way in which you can socialize, do your job, etc? I can only imagine the constant feeling of being imbalanced… oh and the nausea!

Yes, having migraines most definitely limits my ability to do certain activities. Especially vestibular migraine as the dizziness is so debilitating. My tolerance for a migraine or headache without the dizziness is much higher, of course. Being in chronic pain makes it terribly hard to socialize and I used to have such a difficult time saying no to my friends as I knew they would not understand the pain, anxiety and stress I was feeling from all this. I had one friend say to me “maybe have something to eat to help the pain? Text me after you eat, I’m sure you’ll feel better.” Um, nope, I won’t actually. My family often says “breathe through the pain. Try and breathe to calm yourself down. Deep breaths will relax your central nervous system.” It’s very difficult trying to explain to someone how much pain you’re in when it’s invisible so I usually keep quiet and suffer in silence. With my symptoms improving, however, I’m now starting to get my social life back.

For others who are just starting to do research on migraines, what are some of the things that have helped alleviate symptoms?

I highly recommend the book Victory Over Vestibular Migraine if you are suffering from vestibular migraine specifically. This book provided me with a great deal of information on how to successfully overcome such a brutal condition. It was in this book (written by a neurologist who specializes in vestibular migraine) that I learned about all the vitamins, minerals and supplements to take as well as the exact doses. The author also recommended alternative therapies such as cranial chiropractic adjustments and vestibular rehabilitation therapy. Both of these therapies were and currently are extremely helpful!! In fact, I’ve learned that medication can often just be a coverup or bandaid to help temporarily relieve pain but does not take care of the root of the actual problem.  

Melissa this is truly eye-opening. Anything you would tell your younger self, or last words to our readers?
I would highly recommend making a doctors’ appointment right from the get go. If you are suffering from migraines, do NOT wait to disclose this to your family practitioner. My symptoms in grade 8 at only 13 years of age really should’ve been discussed with my doctor right away. No, migraines are not life threatening, however, there is definitely a reason you are getting them that should be considered! The sooner your symptoms are addressed the better. 

Also, as mentioned above, do NOT count on medication being the answer. Seek alternative therapies!! They can often be much more effective and are easy to find. 

I’d like to conclude my interview with a few of my own personal recommendations to help with migraine and vestibular migraine:

1. Stay hydrated! Always have your water bottle full (of water) and handy.

2. Avoid alcohol! 

3. Don’t let yourself get too hungry! Stay on top of your blood sugar levels. Have snacks nearby. Healthy snacks I might add.

4. Avoid refined sugars as much as possible. 

5. Take your vitamins and supplements!! Specifically, a B complex vitamin containing B2, B6, B9 and B12, vitamin D3, magnesium and Co Q 10 enzyme. 

Know you’re not alone and you’ll get through this with the right mindset!! 

When Muscles and Nerves Are On Overdrive - Invisible Disease Week

In March - Endometriosis Awareness Month - we sat down with Michelle M - or otherwise known on social media as The Happy Pelvis. Michelle has been actively educating others about Pelvic Floor Dysfunctions at large. We sat down virtually to learn more about Michelle’s story, not only with Endometriosis and Pelvic Pain but about her battle with Fibromyalgia and Lupus.

I’m Michelle M. and I am a 31-year-old pelvic health advocate that lives in Mississauga, a city just outside of Toronto, Canada. I am also the creator of The Happy Pelvis: an online blog and platform that aims to educate and spread pelvic health awareness in Canada and around the world. But my main role is a full-time chronic pain patient, who is trying to find relief and ultimately, a better quality of life.

In 2018, I had to temporarily leave my graphic design position at one of Canada’s top media companies due to the start of debilitating painful flare ups that I still suffer from today.

At 28 years old, after over 15 years of searching for answers, I received the diagnosis of Pelvic Floor Dysfunction, IC/Bladder Pain Syndrome, Endometriosis, Fibromyalgia and Lupus.

“Our muscles aren’t meant to be tight all the time and after a while, they start to develop trigger points in these muscles. These trigger points then cause pain. ”

— Michelle M

The pelvic area resides so closely with other organs, and many of the issues you experience are all so close together in proximity. Can you describe what your pain feels like? If possible, can you tie the pain to the disease?

When it is at its worst, it is a debilitating flare up that feels like a UTI on steroids with a side of razor blades and intense cramping. With pelvic pain, it can be quite difficult to narrow down pain generators but below are some of my painful symptoms related to each condition I have been diagnosed with.

Endometriosis: Debilitating cramping throughout week of period, heavy flow with large clots, sharp/shooting pain with bowel movements/digestion, painful penetration, sciatic pain

Interstitial Cystitis/Bladder Pain Syndrome: Ache with pain in lower abdomen and burning/stinging with urination that can feel like peeing razor blades, constant urinary frequency and retention which leads to more burning.

Vulvodynia driven by hypertonic Pelvic Floor Dysfunction: A whole lot of different pains and sensations that ebb and flow throughout the day. But overall burning/stinging, itching, tearing pain on vulva, vestibule, urethra and vaginal opening. Triggered by touch, sitting, movement, and even standing.

Pelvic Floor Dysfunction: Burning with urination, painful penetration (which persists days to weeks after: ache and feeling like I have been beaten up from the insides), sharp hip pain with lack of mobility, and tailbone shooting pain and ache… just to name a few.

Fibromyalgia + Lupus: pain, stiffness, swelling, tenderness/heat in joints, painful mouth sores.

Since you do have a few different illnesses that you are working with, how did the progression of diagnosis go for all of these?

Sadly, it has been a long journey. I have lived with pelvic pain chronically since childhood, after a tobogganing incident where I injured my tailbone on an icy hill. I never fully recovered and my tailbone has always been a sore spot that I began to guard unwillingly, but adapted and learned to live with. I then moved into puberty with extremely painful and heavy periods, chronic urinary tract infections, yeast infections; which snowballed into getting on birth control and being diagnosed with Vulvodynia, Vestibulodynia, and possible Lichen Sclerosus by a Gynaecologist. All by 16 years old.

In my early 20’s, after years of continuous pain and antibiotic use, I unfortunately suffered a severe reaction to my Achilles tendons from a urinary tract infection antibiotic, Ciprofloxacin.

From that point, I began to search elsewhere, other than western/modern medicine for answers. I saw a Naturopath and she threw the word Interstitial Cystitis at me based on my symptoms and treated my recurrent UTI’s and bladder as if I had IC and my issues slightly improved. In late 2017, at 28, I treated a UTI but my symptoms never went away. All of my tests and scans were not showing anything or came back inconclusive. In 2018, after advocating for myself, I was officially diagnosed with Interstitial Cystitis/Bladder Pain Syndrome (IC/BPS), Endometriosis, Pelvic Floor Dysfunction (PFD), as well as Fibromyalgia and Lupus.

Did any of your doctors tell you that you have X because it’s more prevalent in women with Y? Just wondering if there is a clinical link between anything you’re battling.

After finally getting in to see the right pelvic pain specialist in 2018, and getting my PFD and IC/BPS diagnoses, I was told that Endometriosis was prevalently seen in patients with Interstitial Cystitis and Pelvic Floor Dysfunction I was then told that surgery for endometriosis was needed to confirm diagnosis. They were right; Endometriosis was found.

Endometriosis is sometimes known as the “Evil Twin” to IC/BPS, yet they are two separate conditions and inflammatory processes. Endometriosis needs to be treated by excision of the Endometriosis tissue and IC/BPS is managed through medical pain management and lifestyle changes.

What are some of the more modern medicine techniques that have worked for you?

I wish I could tell you that I have found something that has worked for me, but I am still on my journey to find it.

Right now, it is a combination of things like compound suppositories, pain medication and pelvic floor physical therapy that are helping me manage my pain.

 Compound Suppositories:

1. Amitriptyline (Nerve medication), Gabapentin (Nerve medication), Diazepam (to relieve muscle spasms)

 2. Baclofen (Muscle Relaxant), Diazepam (to relieve muscle spasms) and Ketamine (Pain medication)

 Pelvic Floor Physical Therapy 2x per week.

Have you ever reached a point where you had to think outside the modern medicine box? If so, what did you do that helped with the pain?

In 2014, I had a severe reaction to an antibiotic and was unable to walk due to the effect it had on my Achilles tendons. At that point, I wanted to step away from western medicine because all it had done was made me worse. I ended up making an appointment to see a Naturopath who then helped me get my bladder pain and chronic UTI’s better controlled using alternative therapies.

My family doctor referred me to a Pelvic Pain Program at a local University where I educated myself on the science of chronic pain and techniques to cope such as mindfulness and pelvic floor stretches.

Generally speaking, are you open to alternative therapies such as osteopathic, pelvic floor, myofascial massage, acupuncture?

Yes, I definitely am open to alternative therapies.

It’s funny you mention Pelvic floor PT and Myofascial massage because those are such an important component in the treatment of chronic pelvic pain. This is because our muscles tighten and tense up when they are injured or when we are in pain. This is a normal response in our bodies to prevent more damage from occurring. Our pelvic floor muscles tighten up too when there is something painful in the pelvis. This is why we need Pelvic Floor Physical Therapy. Our muscles aren’t meant to be tight all the time and after a while, they start to develop trigger points in these muscles. These trigger points then cause pain. Trigger points, muscle tightness, and inflammation can irritate the crazy amount of nerves in the pelvis, which can cause pain to continue throughout the pelvis and surrounding areas.

I also swear by Pelvic Floor Therapy. What would you tell our readers in order to help them consider alternative therapies?

By taking the leap and giving alternative therapies a try, you are taking your health into your own hands.

I learned the most about my body through the alternative care practitioners I’ve met along the way and I am forever grateful.

And lastly, what would you tell your younger self about pain management?

Speak up. Tell them you are in pain and it’s all that you can think about.

I didn’t talk about my pelvic pain enough due to the stigma and embarrassment that came along with it at such a young age. Once my doctors told me there wasn’t anything else they could do for me and it was something I had to live with, I began to keep my pelvic pain hidden away from everyone around me and smiled through the suffering.

I wish I spoke up and insisted on better care and further medical exploration.

Anything else you want to tell our readers?

If you live with pelvic pain, be gentle with yourself, you are not alone.

There is hope, there is help and you can get better.

~ Michelle

@the.happy.pelvis

The Ultimate Vulvodynia and Pelvis Pain Resource Guide

Neurological Pain Is Not Made Up Pain - Invisible Disease Week

We continue with a bang - a second Patient Advisory Board member - Andrea. Andrea, can you introduce yourself to our readers?

My name is Andrea Banks and I live in Orleans, Ottawa. I’m a 34 year old wife and mama to a three year old and five month old. I’m a reader, writer, friend, sister and daughter. I love coffee, dogs, music and laughter, and I am a chronic pain warrior. 

I started getting migraines around the age of 9. I got my period a year later at the age of 10, and they stuck around consistently, ever since then. At 14, my doctor recommended putting me on birth control to help manage my periods as they were extremely painful and debilitating. When I was in university the migraines started to get worse. I was young, in constant pain and eight hours away from home - my support system. I fainted in our dorm showers multiple times and was throwing up from nausea almost daily. My doctor put me on amitriptyline to help manage  the migraines, and this began my journey with chronic pain medication. I tried everything from muscle relaxants, Triptans, and anti-seizure medications to narcotic painkillers and anti inflammatories. Nothing worked long term. A few years later I began to experience horrible insomnia and fatigue and my body started to ache all over. I started to get a burning pain in my limbs and muscle twinges and spasms all over my body. I’d get what I, and many others have described as “brain shocks” which felt like short bursts of pain and confusion. It left me zapped of energy and unable to leave my bed most days.

After years of trying different medications, and a doctor who didn’t seem to believe me or ran out of options to try, I was finally referred to a rheumatologist who diagnosed me with fibromyalgia after a lengthy physical exam and many questions. She suggested sleeping pills (which I took for several years), a breast reduction (which I never got) and also put me on medication to help with nerve pain (it didn’t work). For years I dutifully took my medication, gained a ton of weight, and slept with the aid of sleeping pills. I was miserable.

About three years later I decided to make a change. With the help of my new family doctor I devised a plan: I would decrease my medication and increase my activity level. We would wean me off the sleep meds and use alternative therapies to help me get better and more consistent rest. Shortly after, I met my (now) husband who had been active all his life. He introduced me to fitness, and in particular Muay Thai kickboxing. I got into yoga, and learned how to work out at the gym. I had to be careful to find a balance of moving my body but also taking it slow and recovering. I ate better. I established a consistent bedtime routine and ritual.

During this time I also saw a neurologist as I could no longer afford my emergency migraine medication. It cost me about $120 for 6 pills and I was running out of them every few weeks. Thankfully, my neurologist recommended a vitamin regime which helped dramatically. I continue to follow this regimen almost 10 years later.

Introducing other alternative treatments over the last decade has helped tremendously. I see a chiropractor, massage therapist and psychotherapist regularly. While the chiropractor and massage help with my physical pain, the work I’ve done with my therapist has helped me heal, and continues to provide me a safe space to talk about my pain.

“My doctor was away on holiday and I saw her replacement who immediately mentioned fibromyalgia and asked if I’d been tested. She referred me to a rheumatologist almost right away.”

— Andrea Banks

These are two really interesting and puzzling illnesses. Those who have not yet had a diagnosis for migraines or fibromyalgia often wonder ‘is this what it feels like?’. Can you describe what your pain feels like?

My migraines are usually a throbbing that starts at my temples but eventually migrate to my eyes, and down my neck. I get terrible nausea and have sensitivity to light and sound.

My fibromyalgia pain is much different. Nowadays, most  of the time it’s manageable, and feels like a dull ache in the background of my body. I’ve learned to live with the day to day pain. However, fibro flare ups are another story. They always start the same way - burning and throbbing pain in my legs. If I don’t intervene quickly enough (through extra sleep, stretching, stress reduction) and it turns into a full blown flare, the burning ache spreads to my arms, neck, shoulders and hands. I feel depleted of all energy but unable to sleep. My muscles spasm.

Can you tell us a bit about how you were diagnosed? 

I was diagnosed with migraines from a very young age, but the diagnosis changed to chronic migraines in my late teens. A neurologist diagnosed me with chronic migraines based on their severity and frequency. I had migraines almost everyday for months.

My fibromyalgia took much longer to diagnose. When I started telling my family doctor about the pain she suggested it was related to my migraines and kept trying new medications. I tried so many I’ve lost count. I went in to see her after I ended up in the emergency room after a week-long migraine that left me unable to eat, sleep, or move much. My doctor was away on holiday and I saw her replacement who immediately mentioned fibromyalgia and asked if I’d been tested. She referred me to a rheumatologist almost right away.

Three months later I visited the rheumatologist who performed numerous physical tests and asked me a ton of questions. She diagnosed me with fibromyalgia and suggested another medication, sleeping pills to “get me back on track” and suggested buying a high quality mattress, pillows and sheets. I was in my early twenties and off work, so needless to say this was a luxury I couldn’t afford.

After years of treatment and tons of side effects from the medication I was taking, I found a new family doctor who was super supportive and very up to date on fibromyalgia treatment. We worked on weaning me off all medication (this took over a year) and switched our focus to lifestyle treatments and alternative therapies.

Did the doctors ever suggest your migraines were linked to your fibromyalgia or are they completely separate?

My childhood family doctor believed this to be the case, but every other specialist and doctor I’ve been treating them as separate issues. My migraines seem to be hormonal, while my fibromyalgia was believed to have originated from a virus. 

Truthfully now, we have heard amongst the spoonie community that fibromyalgia is often used as a catch-all diagnosis. How did you feel when you were given the diagnosis?

Oh my goodness, absolutely! I still believe, even ten years later, that fibromyalgia is an umbrella term for a set of symptoms that a doctor can’t fully understand. Basically, widespread, chronic pain and sleep problems that have no “cause”.

At the time of my diagnosis, fibromyalgia was rarely diagnosed. I knew a couple of women who were middle aged or older with the diagnosis but no one even remotely around my age. As time went on I met other young women with the diagnosis and I think many of us felt it was a label that was used when doctors couldn’t figure out the cause of our pain. However, at the time I felt relieved. I had spent years with no one being able to tell me what was wrong, and I felt like no one really believed my pain was real. So to have someone confirm I had an illness and to give it a name brought me relief at the time.

Your honesty is so refreshing. I know that there are two sides to that coin: having a diagnosis you can name, while being diagnosed with something others don’t necessarily understand. With these types of diagnoses, does it affect the way you view yourself? Or how others perceive you?

It used to dramatically affect both of those things. When I was first diagnosed I had a terrible experience at a very unsupportive workplace. I confided in the HR specialist that I was diagnosed with Fibromyalgia and she advised me never to tell anyone, as it would make me seem weak and incapable. I was in my early twenties and this woman was middle aged so I believed her, and for years did my best to hide my condition. Her words made me see myself as useless and unreliable, and I started to resent my body and it’s inability to let me live life the way I wanted.

I started an online community for young women diagnosed with fibromyalgia and it helped me realize I wasn’t alone. It made me feel more confident and I started to advocate more for myself and found different and better treatment options that worked for me. I let go of relationships that weren’t serving me and focused on those that looked to understand and help support me.

A decade later, I couldn’t feel more different. Having a supportive husband, family and close group of friends has made all the difference. Therapy, yoga and meditation also helped me realize my body is trying to send me a message to slow down and take better care of myself. I learned to listen to my body and stopped resenting it. Pregnancy and motherhood also really helped me view my body as strong and capable and helped me realize my illness and pain does not define me.

Instead of hiding my condition, I try to talk about it when I can. I want others to realize they can live a full and happy life despite chronic pain.

Generally speaking, are you open to alternative therapies such as osteopathic, pelvic floor, myofascial massage, acupuncture?

Absolutely! I’ve tried acupuncture, osteo, massage, and  chiropractic care. These fragments in combination with yoga, meditation and therapy are my tools of choice for living with chronic pain.

You are a warrior! I am so happy to hear they are working for you. What would you tell our readers in order to help them consider alternative therapies?

These therapies are 100% what help me to live a full life with my chronic pain, and have helped me connect deeper with my body’s needs. When I was first diagnosed, medication was always the focus. Numbing the pain or masking it with pain killers never addressed the root issue and came with so many additional side effects. Alternative therapies offered much more relief and addressed the pain instead of covering it up. Please know that using these techniques can change how you see yourself and experience life.

And lastly, what would you tell your younger self about pain management?

Oh goodness…so many things! I would tell her to advocate for herself sooner. Not to let others define her illness and treatment plan. I would tell her to educate herself on alternative treatments much sooner, and reach out to those who have seen success using them. I would tell her to adjust her lifestyle and that surrounding herself with love and support is more beneficial than trying to bury the pain under mountains of medication.

Anything else you want to tell our readers?

You are not alone. Chronic pain affects so many, and as women we experience additional challenges defined by social and gender norms. We shoulder such emotional burdens and labour, and we often lose touch with ourselves and what our body is trying to tell us.  We so often fight for others, but rarely for ourselves. You deserve a beautiful life. While it may not look like the one you envisioned, it can still be amazing. Take care of yourself, ask questions, and find your people. Get curious about treatment options and serious about committing to yourself. You don’t have to be silent, and you are so very, very strong.

Untangling Endometriosis and Adenomyosis - Invisible Disease Week

We are so excited to be diving into #invisiblediseaseweek with one of our Patient Advisory Board Members - Ashley. Ashley can you start with an intro so that our readers know who you are?

Hi, my name is Ashley and I am a 34 year old mixed race woman who was born and raised in Southwestern Ontario. I have a passion for music, culture, traveling and spending time with friends and family (Quality Time is my love language).

At the age of 11 years old, I got my first period. Right from the beginning my periods were heavy and painful and every trip to my family doctor ended with a variation of ‘you're a female and this pain is normal, so deal with it’. I knew it wasn't normal; my mom never had painful periods and neither did some of my friends. Along with the heavy bleeding and severe cramping while on my period and in between, I later began experiencing recurring bacterial vaginosis infections, urinary tract infections and yeast infections - all of which my family doctor at the time 'blamed' me for, once I became sexually active. I repeatedly asked to see a specialist and was turned down time and time again.

At the age of 24 I moved to Toronto, Ontario to pursue my career goals and in search of answers to my pain. I changed family doctors and this is when things started to change for me. I had a doctor who listened to my pain and referred me to my first ever gynecologist and things quickly moved along. After months of bloodwork, ultrasounds and physical exams coming back with no answers, I was referred to my gynecological surgeon who performed an exploratory laparoscopy that discovered Stage 4 Endometriosis. At the age of 28, after 17 years of severe pain I finally had a diagnosis. 5 years later, after more extreme pain, bleeding episodes and multiple tests, I was diagnosed with Adenomyosis via transvaginal ultrasound. 

“When I received my Adenomyosis diagnosis however, I was told by the doctor that it is very common for people with Endometriosis to develop Adenomyosis. ”

— Ashley Martin

My gosh. Your story is devastating, heroic and - while unique - so similar to others who have fought for a diagnosis. Can you describe what your pain feels like? Maybe untie what endo feels like versus adeno, for those who are trying to get a diagnosis like yourself?

My Endometriosis pain varies. Sometimes I experience a swollen stomach (Endo belly), where it feels like I have been pumped full of a nauseating gas putting pressure on all my organs. Sharp stabbing pains in my left (or right) ovary and /or lower abdomen/pelvic region. Burning sensation that engulfs my whole torso and a squeezing and pinching feeling specifically when I am having cramping. 

Adenomyosis is sometimes harder to identify or differentiate from Endometriosis pain, however, it was discovered and diagnosed because I was having unexplainable heavy and prolonged bleeding as well as severe cramping between periods.

As far as being able to differentiate between an endo and adeno flare, I find it difficult to determine strictly on pain. If I am clearly not in the menses phase of my cycle and am having abnormal/prolonged bleeding and pain then I typically assume it's the Adeno. The adeno diagnosis is still new for me (diagnosed in 2020) and I continue to educate myself on both!

Did any of your doctors tell you that you have X because it’s more prevalent in women with Y? Just wondering if your doctors have linked the adeno and endo.

For my endometriosis diagnosis I do not recall being advised of specific reasons or links and at the time I was not aware of biological family members who had personal experiences with it. When I received my Adenomyosis diagnosis however, I was told by the doctor that it is very common for people with Endometriosis to develop Adenomyosis. 

What have you found to be helpful for pain management? 

I have been fortunate to have had periods of time where I have had significantly reduced and/or low pain, though it has never been long term. When I was experiencing these breaks from pain I was on a combination of medications to either put me into a medical menopause, or hormonal medication (birth control) that was strong enough to halt my period. However, each time I get my hopes up of possibly having the pain under control my body stops responding to the medication.

What I currently do to help manage pain is to try and get ahead of it, if possible, by taking anti-inflammatories, doing yoga/stretching, drinking lots of fluids and keeping my hot water bottle nearby. 

When I wake up in the middle of the night in extreme pain there is very little I can do to help and oftentimes require the assistance of someone else to help me get through the flare; at times I've ended up in the ER.

Real talk for a second. Let’s talk about being biracial. Do you think that impacted how you’ve been treated in the past?

I do think that being multiracial has impacted how I have been treated in the past, especially when I was younger and living outside of the GTA. Although I have never experienced any blatant discrimination from a medical professional, I do believe that there have likely been occasions where either unconscious or implicit bias from specific healthcare providers impeded my ability to receive proper treatment. 

When I became sexually active and had pain or any type of infection I always left my appointments feeling like I had done something wrong or that I deserved the pain I was in. Never once was I ever referred to a gynecologist. I didn't realize that this was not normal until I relocated to a more multicultural area and changed family doctors and finally started to feel like I was seen or heard. 

Do you deal with any other pain that you think might not be related to adeno or endo? 

I deal with other types of pain that have never been directly linked to Endometriosis or Adenomyosis by a medical professional, such as: arthritic pain & swelling in some of my joints, carpal tunnel in both wrists, sciatic pain and gastrointestinal issues (ie acid reflux). I recently had a LEEP procedure done to remove high-grade precancerous cells from my cervix, which also was not linked to either diagnosis.

You are a hero! Your story will resonate with so many others out there who are still fighting for a diagnosis or who feel alone right now. What would you tell your younger self about pain management?

What I would tell my younger self about pain management would be to be consistent and regimented with taking pain medication at the first sign of pain and to be conscious of my diet to reduce the intake of inflammatory foods. Lastly, I would encourage myself to not give up and to continue to advocate for myself until someone takes my pain seriously.

A new kind of patient advocacy - Femade's Patient Advisory Board

Femade was developed out of a dream; it was based on the notion that a person - a patient - should be able to obtain treatment of any kind that might reduce pain and increase quality of life, be it from the modern medical system or through practiced alternative medicines. Founder Anusha Gandhi has been able to turn this dream into a company. While the concept is to grow our services and expand this company into a Nation-Wide epicentre for pain management, the focus will always be on the patient. 

“In order to keep our feet on the ground we needed to have a base of patients that would remind us of the purpose, and remind us that while it might be advantageous from a business perspective to go in a certain direction it may not always be in the patients’ best interest” says Gandhi. Gandhi decided to parallel her Advisory Board members with a Patient Advisory Board: a well-rounded group of chronic pain patients who share similar but unique experiences with a variety of illnesses associated with pain. 

In Early Spring, Femade will open its doors for patients to receive physical treatment. Meanwhile, the patient advisory board will work on several social support groups that will be the backbone to Femade’s mental health initiatives.  “We are honored to have such a strong group of individuals who will serve not only as the patient voice but will act as an extension of our social media presence to continue to educate Canadians on pain, pain management and the importance of leaning on social support.”

Our Patient Advisory Members will be posted on our website shortly, with full bios. Each advocate is channeling their own patient advocacy while working as a team to push Femade’s mission of a higher standard of care for those suffering with chronic pain. Please welcome our team members.

Addressing Chronic Pain With A Whole-Body Approach

Femade is trying to do something that doesn’t already exist. For the first time we are allowing the reproductive and endocrine systems to take centre stage in pain management as they are highly associated with pain manifestation. And for the first time ever, we are creating a safe space for cis-women but also for those who were assigned female at birth that may identify otherwise. But in order to get this off the ground, we have some numbers to pull that just don’t exist. Help us by filling out this quick 10—question survey so that we can show the world just how much Femade is needed.

Addressing Chronic Pain With A Whole-Body Approach

Eligibility Criteria:

• You are living in Canada

• You are suffering from chronic pain

• You were assigned female at birth

• ALL AGES are welcome to participate