I got my first period when I was 13 – I was in grade 8. I’d had some stomach related issues for two years prior; spending a lot of time in and out of the emergency room and at one point was admitted for a week.
I had a scope down my throat at some point around then and they diagnosed me with helicobacter, gave me pills and sent me on my way.
I don’t know if that’s actually what it was but I know my stomach issues didn’t stop there.
After I got my first period I spent the next 4 years in pain. I would have periods that would last 2 days, then nothing for a week, then heavy bleeding and debilitating cramps for up to 3 weeks, or no period for months at a time. Sometimes I bled for a month straight.
I missed a LOT of high school because I was in too much pain to go. I dismissed this as being what periods were like because I didn’t know anything different.
The timeline is fuzzy, but somewhere around 16/17 I was put on the birth control pill Alesse to try to regulate my cycle and manage the pain.
The Alesse did manage to give me a somewhat regular cycle for a couple of years, but inevitably the periods came back heavy, painful, and the Alesse no longer would regulate my cycle. My doctor then switched me over to a new birth control pill called Yasmin, which I stayed on until I was 25, missing periods all together sometimes but always with debilitating cramps when it came.
Between ages 20-25 my pain continued to worsen. I was spending a lot of time in and out of the ER again with ultrasound tests and bloodwork, but nothing ever appeared. I would be given narcotics and sent home.
I was 22 when I was at work one evening and a surge of white hot searing pain shot through my right lower pelvis, down through my leg, and I collapsed to the ground. Back to the ER, where after hours of tests the doctor assumed I had a cyst that ruptured, but there was nothing they could do – narcotics and sent home.
I continued to spend time in and out of the ER, always having no findings, narcotics, sent home.
In 2009, after visiting my doctor about night sweats, fatigue and drastic weight loss (25lbs in 10 months on my then small frame), he requested bloodwork which returned with elevated levels of white blood cells. I was sent to a specialist in Calgary (I lived in Lethbridge at the time) but my bloodwork improved.
In 2010 the pain was worse than usual (it is always only on my right side) and back in the ER the doctors decided to perform an appendectomy.
As it turned out, it was only slightly inflamed and wasn’t necessary to remove. I spent 5 days in the hospital because I wasn’t recovering well. I ended up with a terrible infection a few days after I was discharged that drained itself in the waiting room, and was told to let it heal from the inside out and sent home. As a result, I have a very large indented scar which to this day has no sensation. I missed enough classes in university that year that I failed 2 classes and delayed my graduation by a semester.
I continued with Yasmin, missing work, and ER visits every couple of months because the pain was overwhelming. Same thing every time, tests, no results, narcotics, sent home.
In 2012, I pushed for my family doctor to refer me to a gynecologist to do more tests.
This gynecologist suspected endometriosis based on my symptoms. I had a diagnostic laparoscopic surgery in October of that year. During this surgery, stage 1 endometriosis was confirmed and I was told it was cauterized with the exception of the endometriosis on my ureters. Her recommendation was to stay on the Yasmin, but to take it continuously, only taking a break for a week every 3 months.
I did this for 5 more years, eventually just staying on Yasmin continuously without breaks since I had completely stopped menstruating even when I did take a break. I still went in and out of doctor offices and ER’s with elevated pain, which would come every single month, and last for 3 weeks at a time. The second week was usually the worst and I would miss 1-2 days of work.
In 2013 my family doctor put me on Cipralex due to anxiety and depression symptoms, which had steadily gotten worse over the previous months. This drug made me feel HORRIBLE but I continued to take it to try to manage my feelings of overwhelming sadness.
I switched family doctors in 2016 to one local to me, as I had since moved to Calgary. I explained my previous issues, pain and frustration with the constant visits to the ER. She referred me to an endometriosis specialist in October 2016 to seek out further treatment and hopefully end the pain I constantly lived with.
This specialist recommended surgery, and I was told it would be about a 6 month wait. While I waited for surgery, I spent more time than normal in the ER and at home from work. I tried Tramadol, Percocet, Hydropmorphone, Naproxen, OxyContin, T3, Lyrica, and probably others I don’t remember because it felt like a revolving door at the pharmacy, to attempt to control the pain.
This specialist performed surgery in May 2017, where she excised stage 2 vesicular endometriosis and inserted the Mirena IUD. I took 2 full weeks off of work, transitioned to half days for the third week, then went back to work full time.
It was an amazing 2 months after I fully recovered from surgery, but unfortunately in August, pain returned. It didn’t start out as debilitating as it used to be, but that constant burning sharp pain was back. The specialist decided in October to begin me on injections of Lupron every 3 months, with an estrace pill to take daily.
I have been doing that since. I had to increase my antidepressants; I am now on a higher dose of Cipralex and added Wellbutrin, because my mental health suffered severely. I see a psychologist monthly to try to work through my anxiety and depression.
The side effects of Lupron have been horrible – I gained 35lbs in 6 months, I have horrible night sweats, hot flashes throughout the day and night, my skin develops rashes and breaks out often. I figure that it is better than constant searing pain, but I also recognize that Lupron is not meant to be a long term solution, nor do I want it to be. I am sincerely petrified of the long-term effects Lupron will have on me, after reading many research articles, since I have been on it for 20 months and as far as my specialist is concerned, there is no plan to stop it. She said we would revisit it when I decided to have the fertility conversation, but at this point in time I do not want to go through the mental and emotional turmoil that would come with attempting to conceive, much less be able to carry until full term.
Over the past 2 years, with the Mirena IUD and Lupron injections, I still have not felt well.
I still have trips to the ER because I feel like a cyst is rupturing and am constantly nervous for ovarian torsion. My pain threshold for pelvic related pain is extremely high since I have had to get used to it for 20 years, so when it is bad enough to need an ER visit I am deeply concerned. Nothing is ever discovered, and I am always sent home with drugs, so I try my best to avoid going especially since I know it will just be hours of sitting uncomfortably in pain, tears, and nothing will come of it.
Other symptoms I have that are fairly consistent (coming at minimum once a week) include the following:
- Extreme fatigue, some days I fall asleep typing at my desk at work. I don’t sleep well, but this level of exhaustion is extremely difficult to manage, especially trying to maintain my career and any resemblance of a social life. I will often go home after work and just lie in bed. I am so tired I can’t sleep, but too tired to do anything.
- Extreme, and constant, abdominal bloating with pain. This can be triggered by food (mostly grain products so I avoid those now) or by nothing. Some days I balloon up to 3 times my regular size and it is extremely painful and uncomfortable
- Nausea – usually only comes when my pain is increased. I rarely vomit, but will spend days being nauseous, forcing myself to eat soup just to get some nutrients in me.
- Dizziness, which comes and goes with no apparent explanation, lasting from a few minutes to a few hours
- Pain and discomfort in my right hip and left knee that didn’t used to be there until 2 years ago, with no sports injury occurring, sometimes the pain will shoot down my legs. My knee constantly aches, exercise is difficult, and so is running. I find stairs especially hard some days and I am in pretty good shape all things considered, so it’s not lack of cardio skill!
- Lower back pain
- Either constipation or immediate need to have a bowel movement, I am generally constipated for 3-4 days, then spend another 1-2 days having to rush to the washroom
- Constant colds! I seem to come down with some type of head cold every month
I see a pelvic physiotherapist every other week to work on my hip and knee, as well as my pelvic region to attempt to strengthen the pelvic muscles. I have done this for the past year, and she often compares them to being as tight as violin strings and having a complete lack of mind-muscle connection.
In March of this year, I began presenting new symptoms: severe chest pain and tightness, as well as left breast pain, discharge, and tenderness. I had multiple ultrasounds, x-rays, and lung tests to rule out anything, and nothing showed up on any scan. The doctors think this could be an effect of Lupron, but I don’t know. I continue to have this pain every day, some days so badly that breathing is difficult.
I experience mood swings, days of constant sadness where I want nobody near me, and every once in a while I get a day where my pain is at a manageable (for me) level where I can leave the house and feel like a normal adult and interact with others, get errands done, and do housework. This happens very rarely, and I usually pay for it for a few days afterwards.
I am severely depressed, being in constant pain. It is a daily chore to get out of bed and go to work. I cancel plans constantly with friends and family. I force myself to exercise because it is the only thing that gives me any hope of a regular life, and even then I am laid up for a couple of days if I push slightly too hard. I cannot lose the extra weight I gained. I have not gone a day since June 2017 without pain. I just want my life back, but not at the expense of my body shutting down.
I heard about The Centre for Endometriosis Care in Atlanta, Georgia, from my wonderful friend Jordanna. The CEC is the leading center of expertise in endometriosis. This centre offers completely free reviews of your medical history, reports, and files. From there, the surgeons determine if they think they can help you.
So, as of yesterday, my 90 pages of information are in an envelope on their way to Atlanta, where my future will be determined.
Updates to come…