I have always been fond of music, especially when I'm feeling down. Now, I don't think there's enough popular songs about disability and how we struggle each day. But I stumbled across a song the other day that, while it's not about disability, I've been listening to quite often when I feel like I failed somehow. When all that's happening is really just me struggling and making it through another day, for better or for worse, I like to remind myself that I am perfectly incomplete, but I am good the way I am. I hope that maybe it helps you too.
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I got my diagnosis today. Like I always feard, I have endometriosis and according to the images, it's really bad. It's not like I didn't know that already, but having the diagnosis doesn't give me any vindication. The biggest issue is that they told me that I will need to use hormonal therapy if they're going to treat me, which means estrogen blockers or the pill. Having taken both before, I honestly think I'll just stick with living in constant pain. The pain is excruciating and debilitates me for roughly a week each month, but knowing how I react to hormonal supplenents and blockers, I think I'd rather keep eating painkillers.
It just makes me so fucking sad and hopeless. A hysterectomy is off the table as well, as I'm "too young" (sexist bullshit argument) and it apparently has too many side effects (the pill doesn't tho lmao).
Thank you sweetie
Sorry the medics are being such utter c****s as always. I don't blame you at all for not wanting to take that hormonal rubbish. I'm worried I'll be in the same situation as you when my appointment finally comes and they'll try and push drugs on me instead of a hysterectomy. What side effects did they say a hysterectomy has?
well you see it means you cant have a baby, and we all know anybody with a uterus' only purpose is as an incubator (societal commentary)
Ironically, this time they explicitly asked if I want kids and since I had my partner with me, we both firmly said no, never, so they immediately ruled out the treatment that is for incubators (which excludes hormonal therapy actually!)
The problem with a hysterectomy is that apparently, you still need to take hormonal drugs, especially if they remove the ovaries as well. The side effects without hormones are immediate menopause as well as bone density issues bc estrogen is needed to keep your bones intact and strong (alternative is testosterone). The side effects of a hysterectomy without removing the ovaries is, in my case, no end to the endometriosis, but apart from that, it also causes the bladder to dislocate quite often and the can make your innards fall forward and into unhealthy positions, which includes the colon and kidneys. It's not something they like doing in general, as the pelvic floor seems to suffer the most and thus makes all the other issues happen.
Thank you for the shared rage, sweetie
I feel very much cheated, but then again, I knew treatment wise we aren't at a point where I can get rid of endo without hormonal therapy.
I didn't know all that. I thought a hysterectomy would help my bladder issues but it sounds like it might make them worse!
Anyway sorry to hear you don't have any good options. Medical science is still so primitive.
It can help as much as it can cause further damage, but the alternative is usually hormones, so... I don't know if I'd recommend any of the options. I think it's mostly a weighing of pros and cons. And depending on what you want to get rid off, removing the uterus may help, but I am no doctor, so this is just me speculating.
Especially when it is about female reproductive health
There are never any good options in life!
For what its worth, as a male, I once had a female partner who was told the same thing about the hysterectomy. When they went to different OB's, they were told different opinions, and one said they'd do it. Might be very worth searching your area for other widely regarded OB's to see if you can get another opinion.
Thank you
I can certainly try that, but it won't solve the underlying issue of endometriosis unfortunately. There's certainly someone who's willing to do a hysterectomy, but ultimately, I don't think it'll help with the disease. I want the blasted thing gone obviously but I do need hormones. Heard someone once say that transitioning was what saved them from endo, and I'm a bit jealous that I'm not trans. Would make this a lot easier 🥺
Yes she had tried many alternatives, and knew she didn't want kids, so she opted for the full roto-rooter treatment. Her quality of life improved dramatically. Obviously, this is person specific, but what I've learned above all else, through my MANY different doctors treating me for obscure injuries and long covid, is that most doctors are complete and total assholes that have no idea how to think outside of a straight line diagnosis.
Amen to that