The Truth About My Hysterectomy

As most women with endometriosis know now (thanks to the huge community and amount of resources we have), a hysterectomy does not cure the disease.^1,2 In fact, just removing the uterus could easily not help any pain at all, if the woman doesn’t have adenomyosis. Adenomyosis is a disease where endometriosis is in the muscle of the uterus therefore a hysterectomy does cure it. Referred to sometimes as “sister diseases”, it’s not uncommon for women to have both.³ The fact that I had adenomyosis definitely influenced my choice to have a hysterectomy at age 24, though there were other factors as well.

First, hysterectomy isn’t for everyone

When I tell people that I had a hysterectomy, I’m always so nervous I’m giving them incorrect information about treatments for endometriosis. I wouldn't want them to tell the friend they know with endometriosis that they know a woman who just because they had a hysterectomy now feels relief. There are many different forms of treatment that have gotten me to the point where I am now- which is a much better place than I was in when I had my uterus, and more importantly, when my body was filled with endometriosis.

My decision

So, I’d like to explain what got me to make that choice, other than knowing it would cure my adenomyosis. I had already had five surgeries in only two years. I lost part of my bowel due to it being stuck to my uterus, and not only would my bowel stick to it, but other organs would follow the lead. I remember hearing a surgeon of mine relating endometriosis to being like a super glue. But it was true, everything inside of me kept getting glued together. In March of 2017, I hit a point where my pain levels were so high, my periods landed me in the ER every time, and I spent my days either in bed or the bath. The only thing I had going for me was that I had an IUD, which can be very successful in helping eliminate the heavy bleeding due to adenomyosis and endometriosis. After a few months of adjusting, I only spotted once a month, but even the slightest drop of blood from spotting was enough to send me over the edge.

A never-ending equation

I was at the point where I was spending countless hours going through everything in my head. It was almost like a math equation. If I have this surgery where they do this, and then I start doing this specific treatment, and after, maybe this pain will get better. Or if I don’t remove my uterus but I do this, maybe that will get better. It was exhausting. And that doesn’t even begin to explain the emotional process. That wasn’t a math equation, it was a lifelong commitment.

What if…

I knew if I did have a hysterectomy, I would keep my ovaries. This was for a few reasons. I was young and didn’t want to be on hormone replacement therapy at that age. I also wanted to have pain relief with the option of still being able to freeze my eggs, if that was something I wanted. But I will tell you, that doesn’t make the choice easier either. So, there I went, still spending hours stuck in questions and fears. What if I don’t have pain relief, and I’ve decided to take away my choice to carry a child and have to live with it forever? What if the surgery helps, but years later when I try to freeze my eggs, none of them take? What if, what if, what if…

Eventually, within a month, I knew my answer. I knew my answer because I wasn’t just choosing what surgery I wanted. I was choosing what would give me the highest percentage of feeling better. I knew my answer because I felt I would rather sacrifice that choice, than risk going back to the life I was currently living. The surgeon not only would perform a hysterectomy, but he would also use proper excision surgery and cut out every piece of endometriosis to guarantee the maximum amount of pain relief.

Here I am

And here I am, over a year later, and here’s the truth about my recovery: Living without periods, as anyone with endometriosis would imagine, makes my life with chronic pain a lot easier. But pain I used to think was my uterus, ended up not being it. As much as I do believe we know our pain and often where it is stemming from, sometimes more than professionals, we are not always right. That being said, my pain is pelvic floor dysfunction pain and being in pelvic floor PT has done wonders. I get ovarian cysts pretty often and they can sometimes send me to the ER. I also still have a cycle, so I do have ovulation pain, which I almost feel like is having a little period that thankfully doesn’t land me in the ER.

A change for the better

So, did a hysterectomy stop my pelvic pain? No, not at all. But did it make my life better? Yes. It’s not for everyone, because everyone’s body is different. But just because it’s not a cure doesn’t mean it can’t be part of your treatment. At the end of the day, I believe we also know what’s best for our bodies. We usually know what medications just don’t feel right, and what foods we should probably be avoiding. Some of us chose surgery and some respond better holistically. My body has responded really well with both. And in all honesty, I’ve had flares where I think to myself, “Oh my god, did I make a mistake?” But then I look at how much I’ve been able to do this year, that I couldn’t do for over two years, and how much freedom, I’ve had given back to me. I’ll look in the mirror, smile, and think, “Damn girl, you did it.”