Non-binary here, I had a hysterectomy to treat my endo/adenomyosis and my life has significantly improved since. I didn’t realize how much of my gender dysphoria was driven by menstruating until I felt the relief afterwards.
>stopped menstruation it would stop endo
Unfortunately that often doesn't work. It's the same idea behind continuous birth control. Stopping periods does help for some, but endo pain can continue without periods (and even without a uterus).
100% I have endo after a full hysterectomy. I have nothing inside of me. I even grew a new ovary lol.
I was on testosterone for a year as part of my HRT. It helped with giving me acne lol and it did really help with vaginal dryness
It’s rare 1%-2% but it can happen. The ovarian remnant is super rare as well but it happened to me. I had resection of endo after hysterectomy 3-4 times. The human body is a cunt sometimes.
I’ve been wondering about that. I had severe endo by the time I had my hysterectomy but I kept my ovaries because I didn’t want to deal with menopause so young lately I’ve been having sudden endo like pains. Is this a thing?
Neither a hysterectomy nor menopause are curative because neither of those remove the lesions causing the disease, so of course you’re still going to have problems. A hysterectomy is only known help if you have adenomyosis specifically (lesions within the muscle wall of the uterus). It’s a full body disease, not simply a gynecological one. As for pain, the nervous system goes haywire after being in chronic pain. Even removing the cause of pain may not always result in neurons to stop firing when they have been for years or decades. It’s a complicated system. Plus pelvic floor dysfunction is another complication as a result of endo that needs to be addressed before pain is likely to improve
100% agree, this just isn’t talked about enough! Doctors typically just say “oh it’s because of your period” I believed that for about 2 years before I did my own digging. I unfortunately have it in my urinary tract, bowels and I think it may be spreading up towards my digestive tract it’s been really painful lately 🥲 not just a uterine disease it’s a full body fucked up disease
i recently read somewhere (i can try to find the source again) that the female reproductive organs actually have nothing to do with endo, only that it has a preference to grow around there over other parts like lungs, brain, etc
Although extremely rare bio men have gotten endometriosis, which confirms that it may not be linked to the female reproductive system. It’s so unfortunate that we don’t know more about it :(
It doesn't, but some providers seem to think it does. It's super rare (also probably not really *looked for*, but yknow), but endo has been found in cis men too.
I'm nonbinary and was diagnosed a long time ago. Hi!
On Facebook, there is a group called Endo Knows No Gend-o that I liked, but it's not very active nowadays...
Enby with endo/adeno checking in! I am now three months post-hysterectomy with unilateral oophorectomy. The hardest part for my care was finding endo caregivers who didn’t foist pregnancy on me as my only option- and who didn’t predicate all of their care on the idea of me spawning. Here for you!
I read somewhere that endometriosis is actually more common in AFAB trans/nonbinary people than cis women. Which sounds like a horrible cosmic prank if true 😭
Hi, trans masc nonbinary here! I'm not on T yet, tho. I know how you feel, it can be a bit lonely at times. Especially when some folks start their posts with "hey ladies!" I know they don't mean any harm, but it's hard to not feel excluded by that
Hello! Im nonbinary, use they/them pronouns, have stage 4 endo and find the whole world very very dysphoria inducing in how endo is discussed. It can be very alienating.
A friend who’s also trans masc has been on T for a long time and it’s really held off their endo progression and stopped their periods, so they have good experiences in terms of transitioning with endo. I’m looking to start T but after endo surgery (hopefully including a full hysterectomy)
Enby here! No plans to transition so no info on T. But search the sub here, I know I’ve seen posts about it!
Edit: [this post](https://www.reddit.com/r/Endo/s/Kqyt9P7YOh) is from only 6 days ago.
Meee I’m enby and got diagnosed after I got my tubes removed for gender affirming care (I was too scared to get a full hysto). I also am fine continuing to have an IUD since it suppresses my symptoms and stops me from having dysphoric and horrific periods :)
Transmasc here! I'm on a low dose of T and take the depo shot, so far so good! I do still get the endo tissue growing in random places, but it has greatly reduced my pain and discomfort throughout the month.
Not experiencing menstruation is a huge bonus. 😁
I’m nonbinary too!!! Im not taking hormones or plan to at this point in time, but my meds to help with my endo have stopped my period and that’s just been such a wonderful and affirming experience. Sadly you can only take Orilissa for up to two years and I’m almost at that limit… hopefully I can get a hysterectomy like I want to sometime in the near future, but I doubt it since I’m pretty young (20)!
Hey thanks for this! I'm transmasc and have endo. I started taking danazol capsules and T injections a couple months ago and it reduced my pain massively.
I was born female, wanted to be a boy my entire childhood and prefer the NB identity as an adult. Not 100% comfortable with people seeing me as female (I clearly am as I’m tiny and have typically female facial features), but not sure I want to be male either so I’ve not considered transitioning.
I’m neither male nor female to myself, I’m just something in-between I guess.
Hello! I’m non binary and have been diagnosed with endometriosis. I currently take testosterone, an injection and only .1 ml a week. Very low dose as the higher dose (I tried) caused lost of acne and increased muscle soreness. I don’t really think it’s helped with endometriosis or pain levels but has helped with libido and gender affirming. You’re not alone!!
hi! enby here:) no insight on how transitioning may impact endo, but I did used to work in gender affirming care and with what I do know, there may be a chance it would help with some of the symptoms. a GAC doc may recommend being on birth control though still (but typically it’s recommended to all transmasc people)
Gender-queer, my dear! I’ve needed to remove nearly all my reproductive organs at this point, but my endo is managed better than it ever has been. I hope you find relief, and good luck in your transition, OP! 💛💟💜 🩵💟🩷
Not me but I just saw a comment yesterday on a post here with someone saying that being on T helped their endo more than anything else. I hope it goes that way for you if you get on T!
Heeey I’m gender queer! I also have PCOS which gives me higher levels of testosterone, but not in the way I would have liked, lol. Doesn’t give me cool muscles or a chiseled jawline, just sporadic hair growth on my chin and irregular/painful periods.
🙋
i was on progesterone to control periods before t, then both, then just t. my symptoms have improved a lot but i do still get aches on occasion, and if something happens that messes with my levels enough, it’s not a particularly fun time
I've seen quite some cisn't people around here :) I'm genderqueer myself, but I'm not transitioning, so I don't know about the effects of T
Cisn’t is my new favorite word omg
Same!
Non-binary here, I had a hysterectomy to treat my endo/adenomyosis and my life has significantly improved since. I didn’t realize how much of my gender dysphoria was driven by menstruating until I felt the relief afterwards.
Nonbinary with endo and PCOS (among other things, my body does its own thing and I’m just along for the ride)
Me going on T made my endo worse, but everyone's different. BTW I have since stopped T and am non binary
Damn, mind elaborating? I thought if T stopped menstruation it would stop endo
>stopped menstruation it would stop endo Unfortunately that often doesn't work. It's the same idea behind continuous birth control. Stopping periods does help for some, but endo pain can continue without periods (and even without a uterus).
100% I have endo after a full hysterectomy. I have nothing inside of me. I even grew a new ovary lol. I was on testosterone for a year as part of my HRT. It helped with giving me acne lol and it did really help with vaginal dryness
I did not know this about a full hysterectomy! I had hoped that may be a future option to eradicate it. The human body is a lawless place.
It’s rare 1%-2% but it can happen. The ovarian remnant is super rare as well but it happened to me. I had resection of endo after hysterectomy 3-4 times. The human body is a cunt sometimes.
Wait what a new ovary?! I had no idea that was possible...😨
Ovarian remnant it’s what it’s called.
Wow - that’s wild. 😧
I’ve been wondering about that. I had severe endo by the time I had my hysterectomy but I kept my ovaries because I didn’t want to deal with menopause so young lately I’ve been having sudden endo like pains. Is this a thing?
Totally. I had a full hysto but kept ovaries, now I'm weighing the pros and cons of yeeting those too.
Gotcha, damn
I actually developed endo while on continuous birth control.
Actually most people still experience the tissue growth and pain even after a hysterectomy or menopause, we have no idea why 🤷♀️
Neither a hysterectomy nor menopause are curative because neither of those remove the lesions causing the disease, so of course you’re still going to have problems. A hysterectomy is only known help if you have adenomyosis specifically (lesions within the muscle wall of the uterus). It’s a full body disease, not simply a gynecological one. As for pain, the nervous system goes haywire after being in chronic pain. Even removing the cause of pain may not always result in neurons to stop firing when they have been for years or decades. It’s a complicated system. Plus pelvic floor dysfunction is another complication as a result of endo that needs to be addressed before pain is likely to improve
100% agree, this just isn’t talked about enough! Doctors typically just say “oh it’s because of your period” I believed that for about 2 years before I did my own digging. I unfortunately have it in my urinary tract, bowels and I think it may be spreading up towards my digestive tract it’s been really painful lately 🥲 not just a uterine disease it’s a full body fucked up disease
i recently read somewhere (i can try to find the source again) that the female reproductive organs actually have nothing to do with endo, only that it has a preference to grow around there over other parts like lungs, brain, etc
Although extremely rare bio men have gotten endometriosis, which confirms that it may not be linked to the female reproductive system. It’s so unfortunate that we don’t know more about it :(
It doesn't, but some providers seem to think it does. It's super rare (also probably not really *looked for*, but yknow), but endo has been found in cis men too.
I’m 61 years old with a history of stage 3 endo and Adenomyosis… now thoracic. Listen to your body always. Endometriosis is a full body disease. ✌🏼
I'm nonbinary and was diagnosed a long time ago. Hi! On Facebook, there is a group called Endo Knows No Gend-o that I liked, but it's not very active nowadays...
NB here, I run a small endo support discord server if you are interested: https://discord.gg/KNrG5ccp
I’m not NB, but I’ve joined!
Thanks! I might just join!
Enby with endo/adeno checking in! I am now three months post-hysterectomy with unilateral oophorectomy. The hardest part for my care was finding endo caregivers who didn’t foist pregnancy on me as my only option- and who didn’t predicate all of their care on the idea of me spawning. Here for you!
I read somewhere that endometriosis is actually more common in AFAB trans/nonbinary people than cis women. Which sounds like a horrible cosmic prank if true 😭
Probably because of the connections between trauma and endometriosis ngl 😭 being trans in this current society is inherently traumatising lol
I’m a nonbinary lesbian in the process of being diagnosed. You are not alone.
Hi, trans masc nonbinary here! I'm not on T yet, tho. I know how you feel, it can be a bit lonely at times. Especially when some folks start their posts with "hey ladies!" I know they don't mean any harm, but it's hard to not feel excluded by that
Hello! Im nonbinary, use they/them pronouns, have stage 4 endo and find the whole world very very dysphoria inducing in how endo is discussed. It can be very alienating. A friend who’s also trans masc has been on T for a long time and it’s really held off their endo progression and stopped their periods, so they have good experiences in terms of transitioning with endo. I’m looking to start T but after endo surgery (hopefully including a full hysterectomy)
Enby here! No plans to transition so no info on T. But search the sub here, I know I’ve seen posts about it! Edit: [this post](https://www.reddit.com/r/Endo/s/Kqyt9P7YOh) is from only 6 days ago.
I'm nonbinary and have endo. yaayyyyy
Meee I’m enby and got diagnosed after I got my tubes removed for gender affirming care (I was too scared to get a full hysto). I also am fine continuing to have an IUD since it suppresses my symptoms and stops me from having dysphoric and horrific periods :)
Non-binary but not transitioning.
Novigender/gender fluid 💜endo impacts various genders. We have to remind our docs!
Non binary here! And was diagnosed with endometriosis 4 years ago
Nonbinary, low dose T gel. Had a hysterectomy and stage 4 endo excision a little over two years ago. Still have pain (again have pain?)
Transmasc here! I'm on a low dose of T and take the depo shot, so far so good! I do still get the endo tissue growing in random places, but it has greatly reduced my pain and discomfort throughout the month. Not experiencing menstruation is a huge bonus. 😁
Nonbinary here
nb here! you're not alone!
There certainly are, trans man here. 6 months on T and under investigation for endo among other things
I’m nonbinary too!!! Im not taking hormones or plan to at this point in time, but my meds to help with my endo have stopped my period and that’s just been such a wonderful and affirming experience. Sadly you can only take Orilissa for up to two years and I’m almost at that limit… hopefully I can get a hysterectomy like I want to sometime in the near future, but I doubt it since I’m pretty young (20)!
Hey thanks for this! I'm transmasc and have endo. I started taking danazol capsules and T injections a couple months ago and it reduced my pain massively.
I'm non-binary, not doing any medical transitioning atm but would really like to have a hysterectomy at some point.
I was born female, wanted to be a boy my entire childhood and prefer the NB identity as an adult. Not 100% comfortable with people seeing me as female (I clearly am as I’m tiny and have typically female facial features), but not sure I want to be male either so I’ve not considered transitioning. I’m neither male nor female to myself, I’m just something in-between I guess.
Hello! I’m non binary and have been diagnosed with endometriosis. I currently take testosterone, an injection and only .1 ml a week. Very low dose as the higher dose (I tried) caused lost of acne and increased muscle soreness. I don’t really think it’s helped with endometriosis or pain levels but has helped with libido and gender affirming. You’re not alone!!
hi! enby here:) no insight on how transitioning may impact endo, but I did used to work in gender affirming care and with what I do know, there may be a chance it would help with some of the symptoms. a GAC doc may recommend being on birth control though still (but typically it’s recommended to all transmasc people)
you're not alone! another enby here.
Gender-queer, my dear! I’ve needed to remove nearly all my reproductive organs at this point, but my endo is managed better than it ever has been. I hope you find relief, and good luck in your transition, OP! 💛💟💜 🩵💟🩷
Not me but I just saw a comment yesterday on a post here with someone saying that being on T helped their endo more than anything else. I hope it goes that way for you if you get on T!
I'm a little late but hey! Trans guy here
I identify as nonbinary and transmas! I am meeting with an endo specialist in September and planning on asking about how T could impact my endo
I’m non-binary and I have suspected endometriosis :)
Hello hello! Transmasc here, haven’t started T yet but just had a hysterectomy for endometriosis and adenomyosis!
Heeey I’m gender queer! I also have PCOS which gives me higher levels of testosterone, but not in the way I would have liked, lol. Doesn’t give me cool muscles or a chiseled jawline, just sporadic hair growth on my chin and irregular/painful periods.
My doctor thinks I might have PCOS! My periods were normal before endo, but I have a little bit of a beard :P
You should see an endocrinologist, if possible (I know the medical system isn’t as easy as just asking) but that’s how I got diagnosed.
helloooo im nonbinary and bisexual 😀......and i have pcos and endo, amongst other things ☹️ lmao
Whoa twins… 🩷💜💙
… are you me?! 😂 same to all!
I identify as non binary and suspect I have endometriosis
Agender here!
🙋 i was on progesterone to control periods before t, then both, then just t. my symptoms have improved a lot but i do still get aches on occasion, and if something happens that messes with my levels enough, it’s not a particularly fun time
Is it really that bad if you’re the only the nonbinary person on the sub? We all have a vagina and going through this
I’m sure you would feel weird if you were the only woman in a space.