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.