Thank you Edelweiss Study for sponsoring this post. Be sure to visit the Edelweiss Endometriosis Study landing page to see if you or a loved one qualifies to participate.
Back in 2016, I developed endometriosis, a chronic illness that can affect anyone with a uterus. I’ve talked about it several times over the years, but in this post, I’m going to explain it all in one post. And I’m also sharing plenty of details that I haven’t shared before. I hope that this helps you feel a little less alone in your endometriosis journey, and be sure to check out the information on the Edelweiss Endometriosis Study to see if you qualify.
Warning: Since this post is about endometriosis, this post will include the topic of periods, uteruses (uteri?), ovaries, etc. Additionally, I will discuss weight, so I want to give you the heads up in case that triggers you in any way.
What is endometriosis? Endometriosis is a common, but poorly understood condition that can affect anyone with a uterus who has periods. Endometriosis is a condition where the tissue like that in the uterus grows outside the uterus. It usually means the tissue grows around the ovaries, fallopian tubes, and the area lining the pelvis. The problem is that this tissue acts like regular uterus tissue and breaks down and tries to leave the body during a period, but since it’s not in the uterus, it doesn’t have anywhere to go, which causes lots of pain. And if it’s involved with the ovaries, it can create ovarian cysts. Endometriosis can also cause scar tissue in the areas around the reproductive organs, and it can affect fertility. 30-50% of people with endometriosis have problems with fertility. It usually affects people during their reproductive years (which, unfortunately for those of us who live with it, can be 30+ years).
There aren’t nearly enough treatments, and there isn’t nearly enough known about this disease. But clinical trials like the Edelweiss study can help change that so there are more successful treatment options that can make a difference for people living with endometriosis.
That being said, I want to talk about my life with endometriosis, from when I developed it to today.
First symptoms – In March of 2016, I started having episodes of extreme nausea for a few days, and then pain would start. I ended up in the ER with extreme pain and nausea, and ultrasounds indicated anywhere from 2 to 6 ovarian cysts had ruptured.
Everybody with a uterus and ovaries has created many ovarian cysts over their life, and often they disappear on their own. But sometimes they rupture on their own in a dramatic way, which is how I’ve experienced them. A day or so after the extreme nausea – and I mean extreme, like I barely ate a bowl of cereal a day and I needed to be freezing cold so the nausea would be better – sharp, stabbing pain started in my lower abdomen. It feels like someone has taken a chisel to my abdomen. I would sob in the ER, and I have a very high pain tolerance. The pain comes in waves as my body absorbs the fluid that was inside; it gets a little bit better for a few hours, and then the sharp stabbing would start again.
My best understanding of this is that it’s from one rupturing and then another one rupturing a few hours later. But there’s also the fact that when cysts rupture, the body has to reabsorb the fluid from them, which isn’t a painless process.
After the first 4 of these episodes, we started to notice a pattern. I would have one episode the week before my period, I’d have my period for 6-8 days, and then I’d have an episode the week afterwards. This was the first significant clue that I had endometriosis, as again, anyone with ovaries can have an ovarian cysts.
First medication – once I was diagnosed with endometriosis, we looked into ways to treat my symptoms. What made everything more complicated was the fact that I have a whole bunch of foods that I can’t eat, including gluten and corn. Fun fact: gluten and corn are used as a binder in a lot of birth control medications, which is a huge way that endometriosis is treated.
I cut out gluten and dairy in 2011 and corn, soy, and eggs in 2015; my PCP had brought this up to me in the past. But I didn’t realize just how many birth controls used these ingredients until we tried to find a pill that I could take. The most annoying thing is that I often had to call the manufacturers of these medications to find out if the medications included any ingredients I couldn’t consume. My gynecologist didn’t even know if these medications would be okay for me!
After a lot of research, I finally found a birth control that I could take. It was a progesterone-only pill, which meant that I took the same pill every day and theoretically I shouldn’t have a period. Not only did I still have it, but I also had another set of ovarian cyst episodes in January of 2017.
Medication interaction – after that, we decided to try hormone therapy. It essentially put me into menopause, but that was the least of my worries. Within a few days of my first injection, I had a medication interaction between my hormone therapy and my RA treatment. At the end of the day, it was decided that I needed to be on a different medication for my endometriosis because I only responded to a certain medication for my RA.
Next step – after the hormonal therapy, we went back to the drawing board. Again, my treatment options were extremely limited due to my reactions to gluten and corn. I was still on progesterone-only birth control, and while it was helping with my heavy periods, it wasn’t stopping my cyst episodes. My gyno and I decided on an contraceptive injection. This is a form of birth control that can be taken by mouth or injection. I decided to go with injections, which were once every three months. I loved that I had such a long time in between doses, and since I’ve given myself countless injections over the years for RA, that didn’t phase me at all.
What I loved about the injection was that it stopped my ovarian cyst episodes as well as my period. Basically, the injection stops ovulation from happening, and ovulation was what seemed to be causing me to create cysts. The injection was amazing! I loved it so much. For the first time in a year and a half, I was free of cysts rupturing. It was glorious.
Unfortunately, that didn’t last long.
A long flare – in October 2017, I had a massive endometriosis flare. I don’t know what started it, but I do know that I was in so much pain I could barely stand. This was thankfully without a cyst rupturing, but it was still miserable. The flare also included an extremely heavy period. And look, I’ve had heavy and longer periods my whole life. (I hear that some people only have them for 3 to 5 days? Mine were never shorter than 6 or 7 days pre-endometriosis.) But this was next level.
Even when the extreme abdominal pain let up, the bleeding did not. After the first month, it eased up, but I was still bleeding every day. I bled every day for 15 months, from September 2017 to December 2018. I had to get iron infusions every 2 or 3 months. We tried fiddling with my medication – I went off of the pill at this point, so it was just the injection – but nothing changed until December 2018.
The balance I’ve found now – The injection worked really well for me, but over the 2ish years I was on it, I gained a fair amount of weight. For the first year, I didn’t really mind because I wasn’t having ovarian cyst episodes. But once I got to 2019 I was interested in trying a new treatment.
After talking to my gynecologist and, again researching food ingredients, we decided on an implant. This medication implant goes in my upper arm, and I don’t have to deal with it for 3 years. Three years! It’s the same medication as in contraceptive injection, but it has less of a chance of gaining weight. There is nothing wrong with gaining weight, but now that I’m not constantly battling ovarian cysts, I can focus on finding the treatment that I like best.
But the truth is that after I developed endometriosis 4 years ago, it’s so hard for me to rest easy. I had a random cyst rupture in May of 2019, but it was 1 single cyst. Even that, though, really freaked me out. Were there going to be more? Was the injection not working anymore? If it wasn’t, what was I going to do?
I share this because I want you to know that just because I’ve found something that works, I’m not set for life. I don’t know how long the implant is going to work. I don’t know if my endometriosis is going to get worse. I don’t know what it’ll look like it if does. If I need a new treatment, what is or will be available that is free of gluten and corn?
There are so many questions and concerns, and frankly, I try not to go down that route because it’s so stressful. Even though things have calmed down a lot.
Endometriosis is a common health problem, especially in women during their reproductive years. Endometriosis doesn’t discriminate among race, age or socioeconomic status. It is a chronic illness, meaning that there isn’t a medical cure, but there are many treatment options to greatly improve patients’ quality of life. Some ways of treating the symptoms include birth control, including the ones I’ve mentioned in this post; painkillers, which have been extremely helpful in my years of cysts rupturing; hormone therapies; acupuncture; and changes in your diet.
We’re not going to make strides in endometriosis care without studies like the Edelweiss Study, so go to their site to learn if you qualify to participate or if you know someone that does qualify, please share that link and/or my blog post!