In honor of Endometriosis Awareness Month, I wanted to share my story of how endometriosis has affected my life.
If you are unfamiliar with the disease, you can learn about it here.
I started getting really painful periods in high school, so bad that I would need to stay home for at least one day at the start of my period, clutching a heating pad while curled up in a ball on the couch. Looking back, that was Big Clue #1 that something wasn’t quite right. But, like a lot of women, I thought it was normal, and doctors told me it was normal. It was a right of passage, or something. Pop some Pamprin and suck it up! Other than the pain, my periods were normal. I didn’t track them, but I always knew when to expect good old Aunt Flow and how many days she would stick around.
In college, a doctor recommended the birth control pill to help alleviate my cramps. She explained that the bleeding I would have on the pill wouldn’t be a real period, just withdrawal from the hormone, and so my pain would be much improved, maybe even absent. It worked! I still had some cramping, but nothing like before.
From that point on, I was always on some form of oral birth control. Always. At some point in my college career, I read an article that suggested there was no need to have a “period” while on birth control, that the original inventors actually designed the pill for continuous use. However, when it came to marketing it, not getting a period was apparently too unnatural for a lot of women, and I think the Catholic church was involved somehow (I don’t know, but I’m sure you could Google it to find out), so they added a week of non-hormone sugar pills for every 3 weeks of hormone, to mimic the average 28 day cycle. But, there was no biological reason a woman needed to bleed every 28 days. I took this information to my doctor and said I wanted to take the pill continuously so I wouldn’t get a period.
Over the next 10 years or so, I took the pill continuously, with just a few breaks here and there (mostly to appease skeptical doctors who believed a woman should bleed, at least some of the time). As promised by that first doctor, I rarely ever had cramps that bothered me as much as the ones pre-pill.
Fast-forward to the recent past, when I finally settled down and began attempting to reproduce. The first thing I did when we decided to try to get pregnant was stop taking the pill. It took a few months for my body to get the memo (89 days, to be exact), but I finally got a period. It wasn’t the Mother of All Periods as some might believe… it was just a regular period, with light days and heavy days, and a great deal of knock-me-on-my ass cramping. A few short months after that, we had our first positive pregnancy test. Unfortunately, our joy didn’t last, and I was diagnosed with a missed miscarriage just shy of 12 weeks. (You can go back to the beginning of my blog for more details, if you’re interested.)
Once I recovered from the miscarriage, we tried again, to no avail. Each month, my period was difficult to predict. The only thing I knew to expect was the pain. Once again, just like in high school, I was doubled over in pain for at least one day during my period. But I couldn’t go back on the pill, not if I wanted to get pregnant again. So, I suffered. A year after my miscarriage, I still wasn’t pregnant, so my OB began some testing and put me on Clomid. (Note: In hindsight, that was a terrible idea. Only an RE should be prescribing Clomid. But that’s a topic for another post.) After just two cycles, it was clear Clomid was not right for me. It caused large ovarian cysts, the first of which burst and sent me to the ER. The second, six weeks later, was the impetus for the laparoscopy that lead to my diagnosis. The plan was to drain the cyst, and while in there, take a look around to see if there was any visible reason I wasn’t getting pregnant.
Low and behold, endometriosis! Really, really bad endometriosis. My fallopian tubes were essentially fused to my uterus by endometrial adhesions. The surgeon had to remove adhesions from my bowel, bladder, intestines…. It’s likely the endo was the reason for my painful bowel movements.
Having endometriosis doesn’t necessarily make someone infertile. However, it certainly doesn’t help. First of all, if any eggs were being released, they were probably having a tough time making it to my uterus, due to my fallopian tubes being stuck to the uterus. Not to mention, my eggs were being exposed to the toxic environment created by all that endometrial tissue scattered around my pelvic cavity. Indeed, I also had low AMH (basically low egg reserve), which was also a factor in my infertility. However, it was the ticking time bomb endometriosis that lead us down the path to IVF, because it would bypass all the obstacles posed by damage from the endo.
Our first IVF cycle was a huge success, with 9 eggs retrieved and 9 fertilized. Two embryos were transferred and 3 were frozen for later. One of those transferred became my daughter. When you look at how successful IVF was for us, it’s hard not to believe that the endometriosis was a significant factor in my infertility, for as soon as we took it out of the equation, I was able to achieve and maintain a pregnancy.
What I find fascinating is how the disease seems to affect every person differently. Some women with only moderate endometriosis suffer a great deal of pain, not only once a month during menstruation, but every day. Some with severe endometriosis have very little pain or pain only during a period. For some, endometriosis causes (or plays a significant role in) infertility; for others, it doesn’t affect fertility at all. For me, severe endometriosis caused severe pain just once a month. Compared to some, I got off lucky. I read story after story about how endometriosis has significantly reduced the quality of life for some women, who suffer from pain every day. Every day. And the pain isn’t always localized to the pelvic region. Endo pain can pop up literally anywhere in the body. Many women wouldn’t even make the connection if not for their own diligent research and connecting with others online.
It astonishes me how much we don’t know about endometriosis. It takes forever and a day to get a diagnosis for many women, and the only way to diagnosis it is through laparoscopy. What disturbs me most is that the best “cure” at the moment is hysterectomy. It’s devastating, especially if you desire to have children. Even less is known about endometriosis and infertility. For a disease that affects an estimated 176 million women worldwide, that’s simply not acceptable. I’m not the activist type, so I have no idea what to do about it, except to educate others about it. I’m a big believer in being your own medical advocate, so if you think you may have endometriosis, do not hesitate to see your doctor about it right away and don’t stop pushing for answers until you are satisfied. Educate yourself through websites like Endometriosis.org. Follow blogs by women who suffer with endo. Share your story on your blog, or, if you don’t have a blog, share your story in the comments section.