Unless someone like you cares a whole awful lot, nothing’s ever going to change. It’s not. – The Lorax
The Lucky One – an Endometriosis Story
Normally, I wouldn’t call anyone with an endometriosis diagnosis “lucky.” Sometimes its hard to think of myself that way. I’ve been through countless hormone treatments, 3 different surgeries, and have lost my fertility because of this disease. In what universe am I “lucky”?
My mother was diagnosed with endometriosis at 21, after suffering for years with what she thought were “normal” cycles. Because of her experience, she knew what was normal and what was not. When she had me and my sister, and we started approaching puberty, she knew the signs.
I started menstruating at 13. Shortly after, my cycles were becoming increasingly difficult for me to handle. I was bleeding a lot, for many days longer than I should. I was in a significant amount of pain. I thought it was “normal”, but Mama knew otherwise. She took me to her GYN’s office at 16 years old. I was a modest teenager, absolutely terrified of whatever exam was about to be performed, so much so that I had a small panic attack in the office. The NP took pity on me, and because of my mother’s diagnosis and my symptoms, she wrote down “suspected endometriosis” in my chart and put me on birth control. Most doctors would have written me off as a dramatic teenager. Most would have told me it was in my head. Most would have insisted on an exam. This one didn’t. She listened, she knew. My mother knew. I was lucky.
For the next two years, I played birth control roulette. I wasn’t very good at it. It took years to find a birth control that didn’t trigger migraines and left me useless and bedridden. I ended up back on migraine preventatives and strong medication for when I had an episode.
Periods in check.
Migraines in check.
Off to college.
Throughout college, I continued on my one birth control that seemed to do the trick, and kept up with my daily migraine protocol. Miss either one of those, and there was hell to pay. I was keeping the status quo, though.
In 2010, before the establishment of the ACA, my insurance company decided that my one Holy Grail of birth control was no longer a preferred method of treatment, and I could no longer afford it. I thought that maybe my endo was in remission, maybe it wouldn’t be so bad. I could just get off birth control and “tough through it” until my first Big Girl job came through and maybe my new insurance wouldn’t be so ridiculous. Who are men in suits at an insurance company to decided they know better than my doctor what works for my healthcare treatment, anyway?
For the first month or so, it wasn’t bad. I was able to preemptively manage severe cramping by rotating ibuprofen and acetaminophen on a strict schedule. Until I wasn’t. Until I was bleeding for two weeks or longer at a time, crippled with pain and passing huge clots.
I was engaged to be married to my wonderful husband in late 2011. My endometriosis had clearly gotten out of hand, and I wanted to make sure I was going to have an enjoyable marriage, and enjoyable honeymoon.
I found a new doctor, with excellent reviews, covered by my new Big Girl insurance, and wasted no time in treating endometriosis as best as he could. Within a month of being his patient I was on the operating table having a significant amount of endo “burned off”, along with a D&C for uterine polyps. Most doctors wouldn’t have acted that quickly. Most would have thought I was making a big deal over nothing, and would have wanted to “observe” my response to more hormones before operating. Not my doctor. I was lucky. After surgery, he gave me and official endometriosis diagnosis. He didn’t “stage” it, other than to say: “Wow. There was a bunch. You weren’t kidding. It was really rough in there.” He then gave me two options:
Get pregnant NOW, or start an insanely intense regimen of hormones suppression to keep the endometriosis from growing back. I was still engaged, the wedding was two months away. We wanted to be married first, learn to live with each other before bringing a child into the mix. Hormone suppression it was. After 6 months, that form of hormone suppression was no longer working. My endometriosis was coming back. Bring on the DepoProvera shots. After 6 months of that rollercoaster, it was no longer working either, and it was very apparent that my endometriosis was back in full force. My pain and bleeding was getting worse with every month.
With my doctor’s ultimatum (“It’s now or very likely never”), we decided to actively start trying to get pregnant in January of 2013. For 6 months, I didn’t have a period. I had intense daily pain, but no bleeding. Its really hard to get pregnant when your cycle just disappears. My body had been on synthetic hormones for so long, it literally didn’t know how to behave without them. After some consultations with my Naturopathic cousin working with my GYN, I was able to reboot my system through some diet and lifestyle changes, with very specific supplements, as hormone therapy didn’t work anymore.
Three months of Clomid (deemed “the devil’s drug” by my husband) and three months of Fremara, my progesterone levels were non existent. I wasn’t ovulating. And on the off chance that I actually did ovulate, my levels were so bottomed out, there was no way an embryo could survive and be sustained by my body.
Yale University has recently proven that while women with endometriosis have different levels of growths, pain, and organ disruption, all of them have one thing in common: a struggle or even an inability to produce progesterone.
My doctor knew he’d reached the end of his expertise, and my needs were beyond what he could offer. For that admittance of defeat, I am forever grateful. He could have been stubborn, I would have trusted him. He could have kept me on a crazy regimen of hormones that weren’t working. Rather, to give me a fighting chance at having a family, he passed me on to an Fertility Endocrinologist. I know other doctors wouldn’t have done that. Again, I was lucky.
My FE took a no-nonsense approach to our situation. Because of financial constraints, we opted to try IUI first. He skipped the usual beginner IUI medications (Clomid and Fremara), as they’d done nothing but make my hair fall out in previous treatments. Literally, I lost about half of my hair.
Four rounds of IUI failure confirmed that we would need IVF if we ever wanted to be pregnant. We knew my endometriosis was back. By then, I’d stumbled across the Center for Endometriosis Care on YouTube of all places, and lost myself in the research and success statistics in excision surgery. My husband and I had decided that if we were ever going to have endometriosis surgery again, we were going to Atlanta where I had an actual chance of getting it gone for good. I spoke with my GYN as well as my FE. Both gave me their blessing and encouragement as I sought a third opinion. They helped in gathering my medical records and sending it off to the clinic in Atlanta, and offered assistance in any way that they could. Most doctors wouldn’t do that. Some doctors might even get offended that I was unsatisfied with my results with them. Not mine. I was lucky.
In 2015, I had my excision surgery in Atlanta at the CEC. There is not adequate vocabulary in the English language to describe how thankful I am for each and every staff member I worked with. From the lab techs to billing to the nurses and Dr. Sinervo. The CEC made a really terrible diagnosis as easy as possible. They listened. They were on top of the latest research. They worked with professionals from a variety of training and treatment methods, from homeopathic to the very latest in western medicine. They gave me the opportunity to participate in research studies that were actively seeking a better understanding, and one day, a cure, for this rotten disease.
I woke up the day after my surgery (I don’t remember much from the day of) with a diagnosis of State II endometriosis, that had, in just 3 years, come back from nothing and spread to my intestines. I left the hospital without an appendix, as it was so eat up with endo it was on the verge of rupturing. But I also left the hospital with a <5% chance of having my endometriosis grow back. I left Atlanta with a body that was a much healthier environment for a pregnancy to thrive. I left the CEC with a fighting chance at a pain free life and hope for a family. I left the CEC in remission. I was lucky.
It has been almost a year since my surgery. I am still virtually pain free. Endometriosis has still jacked up my endocrine system to the point that I will likely never progesterone on my own, and therefore my only hopes of pregnancy are with IVF and a lot of progesterone supplementation. I will always have this disease. If either of the two blastocysts we have frozen end up being sweet little girls in the future, its incredibly likely that they will struggle with this disease, too. But should I be blessed with girls, and should my daughters have endometriosis, they too, will be lucky.
They will have a mother who will fight for them.
They will have a father who will support them and believe them.
They will have doctors that listen to them.
They will have access to the best treatments available to them.
They will be educated on their bodies, and they will not be shamed into silence like so many others who have been told “its all in your head”.
Its time to be loud about our uteruses, our ovaries, our endometriosis. Its time that the misogynistic treatment of women’s health is altered and fixed to benefit women and not the suits and politicians it currently serves. Its time that stories like mine are normal. We deserve effective and efficient treatment. We deserve to have our stories of survival told. We deserve more than half-assed articles with disproven, outdated misinformation presented as fact. We deserve more research. We deserve a cure.
I am a lucky one.
Its time we all were.