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.

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.