What Is Endometriosis?
Endometriosis is a disorder in which tissue that normally lines the uterus grows outside the uterus causing chronic, debilitating pain and menstrual irregularities. It affects around 1 in 10 individuals during their reproductive years. That is about 176 million people worldwide and counting. Because endometriosis is a full body disease, it has the potential to spread to other places in the body outside of the reproductive organs such as the chest cavity, lungs, liver, kidneys, bladder and bowels. It has been found everywhere except the spleen.
Despite symptoms like crippling pain, fainting, vomiting, pain with sex, severe bloating/”endo belly”, bladder spasms, etc, the only way to officially diagnose endometriosis or adenomyosis is surgery. And no, surgery is not a cure. Many sufferers go on to have multiple surgeries because the disease often comes back. Even a hysterectomy doesn’t guarantee that endometrial tissue won’t start growing in places it’s not supposed to again.
To top that off, there is also a possibility of developing adenomyosis, the sister disease to endometriosis, which is when endometrial cells exist or grow into the uterine wall. Both physically AND mentally debilitating diseases, endometriosis and adenomyosis are listed in the top 10 most painful illnesses to have. Both diseases are still being researched and examined to find a definite cause. And while there are various treatments and ways to alleviate pain and symptoms, there is no cure.
“There is no cure”
Many people are unaware that there are three different types of endometriosis and there are four different stages (I-minimal, II-mild, III-moderate, and IV-severe). Although this is good information to know, no particular stage determines the amount of pain or symptoms an individual may experience at any given time. Women can go years undiagnosed, and still be a stage I or have milder symptoms and be a stage IV. The main issue with stages III & IV is how it impacts your fertility.
And this is where my journey begins.
My Endometriosis Saga
I was 31 when I was diagnosed with endometriosis. I had been suffering for almost 3 years by the time of my diagnosis. This is my story of how endometriosis has impacted my life.
Prior to my issues starting, my periods were eerily predictable. Every 28-30 days lasting 5-7 days like clockwork. Then something changed. I feel like that change was triggered by using birth control. I remember my first incident- I had a period that lasted from April 27th until July 6th. Yes, you read that right- just over 2 months. At the beginning of July I decided to stop using my birth control and BOOM, my period stopped.
I made the decision to just try to track my periods and use the “natural planning” method for birth control to hopefully fix the issue. I started tracking my ovulation in August, buying a ovulation monitoring kit. I wanted to test daily over the next couple of months to figure out if I had a pattern or if it was going to still be as weird as it was when I was on birth control. My August period was barely there- basically 2-ish days of spotting then nothing. I figured I had already had such a long period that it was going to take some time to even out.
Toward the end of the month my LH numbers (what ovulation kits measure) slowly increased. I figured this was a “spike” and kept testing daily to see how long it would last. Imagine my surprise when after a week it still showed I was ovulating. Typically a surge only lasts 36-ish hours. On a whim I took a pregnancy test and walla! It was positive.
Quite frankly, I was shocked. Apparently my August “period” was implantation bleeding. I was scared, nervous, and cautiously excited. Sadly, before the end of September, I lost the baby.
To say I was devastated would be an understatement. I won’t go into details, but I ended up having to switch doctors and go through 3 procedures before my medical issues were fully resolved. We also had announced to family & friends, so having to reiterate the loss multiple times and be the recipient of sad looks felt like a punch in the gut each time. However awful those looks made me feel, it was worse when they didn’t “get” it. I still am haunted by a colleague who said “I don’t get why you’re still so upset. I mean you were barely pregnant, so really there wasn’t much to get attached to. Why not just move on and try again?”
That December, my husband & I decided to relocate to Atlanta. This ended up being one of the worst decisions we could have made. With no job, no support network, and unknowingly facing months of infertility, I started slipping into a deep depression-a depression I’m still fighting to overcome. I desperately wanted to become pregnant again, but my periods were becoming increasingly painful and unpredictable. I tried supplements, working out, etc- nothing worked. Each cycle yielded the same results: a negative pregnancy test. I became so bitter and haunted by the pain of those negative tests, that when a sweet friend told me about her pregnancy that following summer, all I said was “that’s nice” and walked away seething. I still feel guilty about how I responded years later.
I started working with an doctor in May, and by fall 2013 it was determined that I had endometriosis. We started the treatment/diagnosis process with a laparoscopic surgery. It was scary and unclear if this would solve my issues or if they would even find anything wrong. I remember being terrified that they wouldn’t find anything, meaning it was all in my head, or that they would find something that was even worse than endometriosis.
After surgery, I was diagnosed with stage III endometriosis. He went on to tell me that this is likely why I had been unable to get pregnant again and it could have even been the cause of my miscarriage. He also cautioned that if I was to get pregnant, that my chances of having a c-section or pregnancy complications would be higher.
Still, I pressed on. After a few weeks of recovery, I went back to the doctor. My hormone levels still weren’t ideal for conception, so I was given fertility treatments. The treatments had some miserable side effects, but I was determined to see it through.
The first round was a dud, however, the 2nd round looked much more promising- I had several follicles that were healthy looking and ready. I was visiting my mom that Christmas and came down with a nasty cold. It was still pretty early to find out if I was pregnant or not, but I decided to try a test *just in case*. There was the faintest barely there line. I wasn’t even sure it wasn’t my eyes playing a trick on me. We went to the doctor to get medicine and they gave me another test. It was still faint, but they confirmed it was an early positive. I was so excited I didn’t even care that I was sick. Sadly, Fredric wasn’t with me, (he had already gone back due to work), so for the second time, I had to tell him I was pregnant long distance!
I was nervous wreck after finding out this time. I didn’t want to wait until I was back with Fredric to do an ultrasound-I NEEDED to know immediately if this was a viable pregnancy. I made an appointment at a local office and went with my mother. Hearing Everett’s heartbeat for the first time was one of the most magical experiences I’ve ever had. Though hearing his heartbeat gave me reassurance, I still worried constantly. I kept thinking I would somehow lose him or he wasn’t going to develop correctly. This time I refused to share or post about the pregnancy until I was almost to my 2nd trimester. I insisted on extra/early testing, just to make sure he was healthy and that he was growing normally. It wasn’t an easy pregnancy by any means, and I’m pretty sure the anxiety I had developed over the last 2 years of loss & infertility has never completely gone away.
Moving Forward
During this journey the worry about endometriosis always hung over my head. It was like this horrible nagging voice that would rear it’s ugly head any time I thought about trying to have a baby again. Thankfully, pregnancy & breastfeeding usually reduces the symptoms and spread of endometriosis due to your lack of period and the increase in progesterone, so I had a nice break from dealing with it.
Despite waiting until the day the pain would come back and start tormenting me again, I was happy with Everett and decided that being “one and done” actually worked out perfectly for us.
Surprise!
In January 2017, I took a pregnancy test in solidarity with a friend who was worried she was pregnant. Apparently the fates decided that they weren’t done throwing us curveballs, so while her test was negative, mine was a resounding positive. This time I wasn’t “joyous.” I was unprepared and shocked with just how simple it was to get pregnant with Finn. I was scared- my pregnancy with Everett was hard. Everett was also starting to really show signs that something unusual was going on with him. I essentially spent the whole first and part of the second trimester not really acknowledging my pregnancy. Don’t get me wrong, I went to appointments and didn’t “deny” my pregnancy, but rather, I didn’t “celebrate” it. I pushed forward full steam and eventually got my self to the point where I started spotting from overdoing myself. That spotting made me realize just how much I wanted another baby and how lucky I was that I didn’t have to suffer through another infertility cycle.
So What Now?
As of this morning, I was inspired to write this blog because my endometriosis is back. I had almost 6 years with “normal” periods thanks to pregnancy and breastfeeding, but unfortunately, the excruciating pain and ridiculously heavy period is back. I would venture to say that my period is actually worse now than it was.
Oddly, my periods are following a more “regular” cycle length, though they can still vary from 27-40 days, they are typically around 31 days. However, the last few months I’m seeing an increase of what is best described as a “mini” period in between my “regular” periods. My bleeding gets so severe that I suffer from vertigo, iron issues, cold-like symptoms, and don’t get me started on the pain.
Oddly, or maybe thankfully, some of my periods are manageable, and I’m able to continue being a mom with the use of NSAIDs over the course of the first few days of my cycle. Some are much harder than that. All I’m able to do is get from the bed to the couch. These are the days that I’m especially thankful for Fredric. I know that I’ll likely need another one to two surgeries in the near future, which now that I’m a mother is even more scary.
I never wanted to be a woman with chronic pain. I certainly never wanted to be a mother with chronic pain. But I truly believe we’re all shaped by our experiences. The bad days help me appreciate the good days. My boys are learning how to be gentle with me when I’m feeling down-and seeing them learn to be nurturing is a reward on it’s own.
I’m just thankful that my good days still far outweigh the bad.
