Endometriosis (endo) affects 1 in 10 women. 1 in 10! That blows my mind. One main issue I have found is the lack of awareness of women, myself included, and health care providers. I find this incredibly frustrating. The symptoms and degree of pain vary immensely from person to person. I experienced an incredibly painful couple of years, but I have to say I feel “lucky” after talking with many women who have been through much worse.
My own experience with endo likely began decades ago. From puberty, I always experienced very painful periods, but that was normal to me and I always thought that was just how it was for everyone. I took birth control from my mid-teen years to help control the pain. I stayed on birth control until just before my wedding in August of 2013. Soon after my periods became incredibly painful. By 2015, things were getting unbearable. I still had not become pregnant and spent my time logging my cycle, my temperature, and doing anything possible to become a mother. By spring we were seeing fertility specialists and had discovered that my ovaries were full of blood-filled cysts, or endometriomas.
By this time, I had experienced pain that I had never felt. I think I have blocked out some of it because I’m finding it hard to recall some of the memories and timelines as I try to write about it. For me, it was excruciating, sharp pain internally that brought me to the floor in the fetal position. I have never been stabbed, but the only way I can describe it is what I would imagine a knife would feel like stabbing up through my vagina. My pain came as my period was starting at first, but then ovulation time decided to join the party. The best part was that sex was insanely painful. That made trying to conceive even more fun than it already is during infertility. I was also dealing with simple fluid-filled cysts that would burst- typically as my cycle was beginning. There were two times that I passed out from the pain and numerous times I vomited and broke out in cold sweat. One instance I remember thinking “I need to get to the hospital” as I laid on the floor of our bathroom. I couldn’t even move to reach my phone to call my husband or 911. That was the worst of them all, I truly thought I was dying. These fun bouts of pain had gotten to a point that I needed to do something.
My Nurse Practitioner at the fertility clinic referred me to a surgeon to have a bilateral ovarian cystectomy. (Side note- I had not been diagnosed with endo at this time as the only way to diagnose is by having surgery) At this point, I was desperate to control the pain and my thought was once the cysts were gone my ovaries would be healthy and able to produce follicles. I knew from research and conversations that many women get pregnant within 6 months following this procedure and I was excited and filled with a renewed hope.
I had the surgery in December of 2015 and it went well. I got Frankie, our cat, the weekend after to keep me company during the two-week recovery (never be ashamed to use a surgery to convince your husband to get a kitten).
Now, I can get pregnant. We had to wait around two months before we could get back to our fertility journey, but I felt confident that it would happen. I felt relaxed at first. Isn’t that what people always tell us ladies fighting to conceive? “You just need to relax, and you’ll get pregnant”. Uh-huh, right. Well, a few months went by and my pain was much better, not completely gone but I could function again. I began to track my cycle again, continued taking the supplements, taking pregnancy tests anytime my period was late. Nothing.
Now… here is where my frustration kicks in. My frustration is with myself as much as the medical community. What I was not told, and maybe I just didn’t want to see it in my research, was that scar tissue would form in my ovaries following my surgery. This scar tissue is just as much to blame for my infertility as endo. Had I known this I would have been much more proactive six months out of surgery to extract eggs. Instead, I fell back into the dark hole of guilt and sadness as each month passed. I would encourage any woman out there to be aware of this. If you need to have a procedure to get out of pain from endo, be your own advocate moving forward with your fertility. My surgeon did his job. He removed my cysts and relived the pain. The fertility clinic helped get me out of pain, but I do wish there would have been more information given regarding the repercussions of this surgery, maybe they were not aware either. Hence, my frustration.
I will go into the rest of my fertility journey in another post, but this surgery was basically the nail in the coffin for me to have a child with my own egg.
My pain has been kept at bay since that surgery. I still have one endometrioma on my right ovary that I am aware of today. I have occasional sharp pain that has been coming a bit more regularly with my cycles, but nothing like what it used to be. Endo can always come back and often does. My hope is that it stays in the same areas of my body it is in rather than migrating further so that I can still carry a child.
Lots of love to all of you other 1 in 10 battling endo. I see you and I hope by talking about this openly we can move towards a cure or at least have the information we deserve to make educated decisions about our lives.
