Mar 3, 2024
“There’s two types of people: those who have hit their head in the OR monitors, and those who eventually will.”
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“There’s two types of people: those who have hit their head in the OR monitors, and those who eventually will.”
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I recently had a diagnostic laparoscopy because my doctor and I were sure I had endometriosis. None was found (although I’m not entirely convinced it’s not the problem but I’m no expert) but what was found was just… So much scar tissue. Things were stuck to other things and I had an organ twisted out of place. The biggest thing for my long term health (I think) that was found- and this might be TMI but really is anyone going to read this?- my fallopian tubes are completely blocked. Meaning I can’t have children unless I either get that treated or use IVF. I didn’t particularly want to have children, at least not by using my body. But it’s weird knowing that it’s not even really an option for me. I’m not sure I’ve really processed this information; I just feel numb about it. Apparently blocked fallopian tubes are a fairly common cause of infertility. Infertility. Is that something I have to identify with now? Do I have to say I’m infertile? I’m really adding to my list of adjectives over here. Chronically ill, disabled, mentally ill, lesbian, nonbinary, neurodivergent… infertile? I guess I am. It’s such a strange feeling. I don’t know what to do with it. Oh, and we don’t know exactly what caused the scarring. My doctor’s best guess was some sort of infection but I don’t remember ever having any kind of infection that would cause this. I thought this would give me answers but I feel just as confused as before. But I’ve deemed “fixed” and he said I only need to be seen for routine screenings anyone my age would get. Maybe I’m supposed to be satisfied with that. Maybe I want too much out of my doctors, I don’t know. All I know is I don’t really… have anyone to talk to about this. Not anyone who knows what to say. It’s fine though, I don’t even know what I want to hear.
I think I’m more scared of them not finding anything during surgery than I am of them not. Which is such an odd feeling to have because at the end of the day, I don’t want a chronic illness…
But I also need answers for my agonising pain.
I need my surgeon to look me in the eyes and tell me that all the medical gaslighting was wrong and I was right. I need to feel that relief of knowing, although not curable, a diagnosis would change everything for me.
So I've had a laparoscopy on Wednesday - that's a minor operation where the surgeon cuts into your belly. In my case to see if I have endometriosis.
And it turns out I do indeed have endometriosis, and, more importantly, adenomyosis, which is kinda the same thing except the "bad" tissue is inside the uterus rather than outside of it.
I've been back home since Friday morning and everything is healing well and practically not hurting anymore.
And now I finally know what's wrong with me - and that there IS something wrong with me. That my constant exhaustion and tiredness, my chronic pain, my being unable to do so many things and my struggling to do so many others does have an actual reason, an actual source. People will finally have to take my problems seriously. And maybe, there's even something to be done to improve things.
I can't even begin to say what an incredible relief that is. What that's doing to my emotional state. How incredibly happy and hopeful I am. Or rather, how incredibly defeated and hopeless I've been until now, which is only becoming properly apparent now in comparison.
At the same time I'm also angry. It's been a damn long journey to get to this point. And yet I know that in comparison, I'm fairly lucky and got my diagnosis relatively early. Many others need to search and fight to be taken seriously a lot longer than I have.
Research on endometriosis has made great steps forward in recent years, but there's still a lot of details that we straight up don't know. Starting with what causes endometriosis and is it something you're born with or something you develop at some point?
I guess I just...needed to yell all that out into the void.
Maybe some day I'll make a post about all the things I learned along the way and what resources would have helped me if I'd already known about them at the beginning of my journey.
Had my fallopian tubes removed
It feels odd having an incision in my belly button
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Doctors: You can't have sex at least six weeks after surgery
Me, who hasn't had sex in [redacted]: Easy peasy lemon squeezy.
After five years of begging and waiting, I'm finally having a diagnostic laparoscopy for endometriosis in two weeks! Any advice?
hi friends.... it’s been quite the month.
I’m so scared I won’t be able to raise enough funds for my surgery bc I haven’t gotten many donations and idk what to do and I’ve cried every day.... I’m so damn scared.... idk what to do...