Here we are again. It's that time of the year when for the next seven days my blog is dedicated to sharing stories about Endometriosis to raise awareness. From March 3-9, 2017, I will be featuring a different story each day.
As I did last year, I reached out through social media to my Endometriosis groups for help in raising awareness for our shared disease. Rachael responded to my call for submissions and I am happy to share her story with you.
By: Rachael Bahre
Receiving an endometriosis diagnosis was an unconventional process for me, which unfortunately seems to be a universal norm among many other endo sufferers. In March of 2016, I had my first laparoscopy and was diagnosed with stage four endometriosis. In addition to having many adhesions, each of my ovaries was adorned with a massive endometrioma. Post-surgery, I was told that I only had a few options to deal with this disease, a) take Lupron and be placed into an early menopause b) take the depo shot - which has a laundry list of side effects, or c) get pregnant as soon as possible. You can probably imagine my disappointment when I was told that I only had a few options to manage the disease, all of which sounded like a band aid, not a solution. For some women, these options may work, but for me they didn’t make sense, especially since I believe hormonal birth control is what led me to dealing with such severity of this disease.
Rewind to 2014: I decided to get a hormonal IUD (Skyla to be exact) to have an easy method of birth control. I spent hours researching the IUD and it seemed like a logical option for me and my long term partner. It was effective and fool proof; it sounded like a dream. Unfortunately, what I experienced was far from a dream. From day one, the IUD provided me with chronic pain which intensified without notice and always worsened after exercise (which I eventually had to give up). At times, I would get severe cramps in my uterus that rendered me helpless and the only thing that sort of alleviated the pain was an excessive dose of ibuprofen and laying in the fetal position for hours. After about 6 months of living in agony, I landed in the ER due to pain so intense, I couldn’t move. My nurse had to continuously increase the dosage of pain medicine until I was too drugged to really know what was going on. Hours later, I found out that I had a cyst on my ovary which ruptured and shed its contents into my abdominal and pelvic area leading to searing pain in my mid-section. The ER doctor told me not to worry, that it would heal itself, and to follow up with my primary doctor.
My doctor said that the pain was normal and not to worry as the IUD needed time to settle. She also said that women just get cysts sometimes and there is often no explanation for it. After my trip to the ER I vaguely remembered reading in the Skyla Drug Facts that 14% of women dropped out of the study due to reoccurring cysts. I didn’t think much of it at the time I was diagnosed with a cyst and decided to continue to live with the pain of the IUD by popping ibuprofen almost daily. I decided that my experience was probably a fluke and hoped that eventually the pain would subside, just as the doctor reassured me. Unfortunately, that day never came.
Almost exactly one year to the day of my first cyst-induced ER visit, I was in the ER again. This time the pain was worse than before, which I didn’t think was possible. Pain medicine didn’t touch the pain. I was forced to wear an oxygen mask because I couldn’t breathe properly due to the intensity of my discomfort – my insides were on fire. Hours later, I was told that the doctor had found a ruptured cyst, plus two complex cysts on my ovaries – perhaps endomtriomas, and that I’d have to follow up with my primary doctor for more information. I couldn’t move my body for almost 5 days after leaving the ER due to the pain that resided in my abdominal area from another ruptured cyst. When I finally made it to my doctor, I was told that I might have endometriosis and would have to have laparoscopy to find out for sure.
As I contemplated surgery, I decided that for starters I should remove the IUD to see if it had been contributing to my chronic pain. My doctor was opposed to it, saying it had nothing to do with my cysts or pain and she recommended I keep it. All I could think about was, “Had she not reviewed the drug facts? What about that 14%?” I disagreed with her and had the IUD removed. Within days, much of my chronic pain had subsided. A few weeks later I had surgery to remove the cysts and to determine if I did in fact have endometriosis. Prior to being discharged from the hospital, the surgeon stopped by my room to report that my uterus and surrounding organs were covered in adhesions and I had stage four endometriosis. He then listed off my options for long term care including more artificial hormones, pregnancy, or early menopause. A wave of helplessness and depression came over me. How could these be my only options?
Post-surgery, I spent quite a bit of time reflecting and researching. I tried to learn everything I could about how women manage this life altering disease without excessive side effects from drugs. Ultimately, I decided that none of the options through modern medicine made sense to me or my body. Though the surgery was an extremely important part of my recovery process and saved my reproductive organs, I felt like what I was being offered for aftercare was a just a band-aid to mask the disease and was not a solution to the problem.
Prior to surgery, I had started receiving care under an acupuncturist who had helped me manage pain and stress. This initial process brought me much relief and I wanted to see what other alternative methods could help after surgery. Later, I connected with a naturopath who focuses on women’s health and hormonal function. From her, I learned that it’s possible that the small amount of levonorgestrel released by the IUD could have been messing with my reproductive functions. Essentially levonergestrel is an artificial progesterone-type-of-hormone which may have been signaling my body to turn off its own progesterone production. And the small amount in the IUD was not enough to keep things “normal” among my hormone function, thus potentially leading to cysts and irritating what may have been pre-existing endometriosis. To be clear, I’m not necessarily saying the IUD caused my endometriosis, but I do think it caused my cysts and made my condition worse. I recently discovered that Skyla’s Drug Facts now include a warning to not use this method if you have endometriosis.
Prior to this experience, I had painful periods at times, but they typically weren’t severe and I thought that some pain was normal. According to Western Medicine, pain before or during a period is not normal, but many women just deal with it because we’ve been conditioned to put up with pain associated with periods. Through my alternative treatment process, I also learned that my progesterone levels were so severely low that I would likely not be able to carry a child to full term. With this in mind, my practitioner and I are now focused on the body function as a whole, not just my reproductive organs. In alternative medicine, the body is looked at holistically. If one function isn’t working, it’s important to find out what is the root of the problem. This methodology makes a lot more sense to me rather than masking the disease.
Since surgery almost one year ago (March 15, 2016), I’ve decided to hone in on how I take care of myself mentally and physically. Every choice I make can determine whether the next period I have is awful or not so bad. I’ve taken up running again after almost two years of having to quit and have had no adverse effects from it. I also meditate, am mindful of what I eat, have acupuncture once or twice per month and monitor my symptoms. Though I have no idea if the endo has come back, I do know that my pain is far less than the years prior with the IUD and the constant cysts. I’ve learned that as I continue to recover, it’s crucial to be my on advocate and not just accept everything I’m told. In some weird way, I am grateful for this experience as it has given me an opportunity to really understand my body and has allowed me to connect with other women who often feel alone when dealing with this disease
As I’ve gotten back into running, I often reflect on my fellow endo sisters who have not been so lucky, who have struggled with multiple surgeries, constant pain, and terrible side effects from various drugs. In the near future, I’d like to train for a half marathon and use it as a platform to fundraise for endometriosis awareness. Unfortunately, endometriosis is not very well researched and is widely misunderstood. It’s crucial to spread awareness about this debilitating and isolating disease and my hope is that by sharing my story along with others, is that we continue to spread a message of hope for recovery and advocacy for better treatment options in the future.