Post-Op

Content Warning: surgery discussion, period discussion, medical talk, photos of internal organs

Dear reader,

Four weeks ago, I had my first major surgery of my life! It was a robotic, laparoscopic surgery, where the doctor is using those tiny little robot hands and looking at a screen, using controls to do the work. Which is good, because they had to cut open my stomach to do it. It’s not the first surgery that’s ever happened to me, though. A few years ago I had a knee surgery that was also the robotic, laparoscopic thing, but that was an even shorter, easier process. We knew exactly what was wrong and how to fix it. This surgery was exploratory and was a bit like searching for a light switch in an unfamiliar basement.

What happened, you might be asking yourself?

Well, as you know, I was assigned female at birth (AFAB) because I have a uterus and vagina. Because I have those sexual organs, I am prone to any medical issues that others with those parts deal with as well, such as menstruation - aka periods.

As I mentioned last time, I have had some of the worst periods you can imagine - being stuck in bed for days each month in excruciating pain. Well, this surgery was a look to see if I had endometriosis. What is endometriosis, dear reader? It is when the uterine lining that occurs during the period is thicker than normal AND it can grow on the OUTSIDE OF OTHER ORGANS! Sometimes, if a case is REALLY REALLY BAD, this can be seen on imaging such as a CT scan or a MRI. But those cases are usually what is called Stage 4, where giant cysts or tumor-like things, called endometrioma have grown to a size big enough to see on imaging. 

Usually, you have to have surgery in order for endometriosis to be seen and therefore to be diagnosed, because the spots are pretty small. Which is exactly what happened in my case! After 2 years of having an idea of what direction to take these symptoms, I now have an answer! 

I was diagnosed with Stage 2 Endometriosis.

That sounds scary, right?

They use the same wording for the big c word - cancer. But it’s not cancer. At least, not all of the time. Endometriosis can lead to endometrioma cancer, if it gets out of hand. In my case, I should be pretty far from cancer. Besides just going in to see if I had this disease, my surgery also was to clean out any spots of disease that were found and they were then removed. There are two ways that this could be done - ablation (burning away of the cells) or excision (cutting out of the cells). My doctor does the latter, as this also allows to cut out some of the surrounding area and therefore promotes regrowth of the healthier cells. 

Here is my own version of drawing out where Endometriosis was found on the reproductive organs during surgery. Both ovaries had cysts in/on them, the right fallopian tube had endometriosis as well. So all of that got cut into. But more importantly, Endometriosis isn’t restricted to this area, like in my case. Endometriosis, like in those lowest spots, had caused my colon (bowels) to fuse to my abdominal wall, on the backside of all this. It is possible I have had it higher up on my stomach and it has resolved on it’s own as well, but currently, it has stayed low. 

These are some of the images captured of the Endometriosis during my surgery. The first image is of a spot that was found and second photo is that same area after it was removed.

The issue with that fusion is that it causing gastrointestinal problems. Endometriosis has been found on literally every organ, across the hundreds of thousands of people that suffer from this disease. It can go up to the lungs and even the brain. I say people because it turns out, not just people with uteruses get this disease either! People with penises get endometriosis too! It is more rare, as far as we know, but that could simply be lack of diagnosis. 

Endometriosis can cause some serious trouble with conception as well. About 1 out of 10 people are estimated to have endometriosis. 1 in 8 couples struggle with fertility issues. You do the math. 

And so even though I’ve never really wanted children of my own, I’ve always been of the mindset that I would NEED to adopt anyways. I think I always knew that I wouldn’t be able to have children. But I’m okay with that. There are far too many children that need love out there. Not that I am in any position to adopt a child right now anyways. 

I have been healing well, and am feeling great, a month out. My incisions are larger than I expected, and they still hurt or pull a little here and there, but I had a follow-up 2 weeks after surgery and my doctor said everything looked fantastic. There is still some other things to look at, though so that is all in the works.

But finally having an answer, and knowing exactly what my issues were - I had guessed that the bowel fusion had occurred - just is nice, in a weird way? Because being AFAB, medical doctors still have this weird mindset of not listening to me the first time. So that I was listened to, an answer was found, and it turns out that I was right, it’s just all a little overwhelming but also just nice. Now, I look to the future, because it turns out, that might not be the only issue, but it’s a big part of it!

Until next time—