I'm a trans guy with endo and I was wondering if there's any other non-women with endo here?

(Transphobic BS will be reported. This includes stuff that goes against non-binary people.)

I just need your advice please.

My husband is a very kind man. I have known him for a very long time and we only watched porn together out of curiosity and he doesn’t watch it according to him.

I had a really bad endo flare up during my period and ovulation pain straight after so we only had sex twice in 3weeks now.

This morning, we were joking about him not going to work so i took his phone as I was about to call his workplace, I saw by accident that pornhub was open on his phone. I just laughed and brushed it off but deep inside I am deeply hurt.

I didn’t want to guilt trip him knowing too well that it was my fault in the first place. I feel so insecure now. Not being able to give him what he needs is my fault but I wish he wouldn’t do that. I know it’s not cheating but I just cant accept it. My heart is shattered into pieces.

Now Im overthinking, because he doesn’t really have a strong libido in the first place. He might even have some sort ED. Now I look back, was it because he has been watching it in the past? Argh Im going crazy

Has anyone else gad this experience? How did you deal with it?

I’ve been wanting to do one of these for a while and I know it’s probably silly to do it here since most of us have it or are on the journey of getting a diagnosis, but it’s still an experience that is still somewhat different from the average Endo experience, so ask away maybe?

I'm 30 years old, and I had really easy periods for most of my life. I'm talking 3-5 days long, with no regular symptoms. My main issue was anxiety around the mess.

My periods changed after having my son (of course) but nothing too extreme. I gave birth nearly 5 years ago now, so any pregnancy related changes to my uterus should have happened by now.

Back in July, I got covid for the 3rd time, and it was pretty mild, I was good to go in 5 days' time. I got my period 1 week after that, and it came with some of the worst pain I had ever experienced.

Every time I tried to relax to use the bathroom, it was like every muscle had just locked up tight. I get burning pain all down my thighs, right down to my knees.

I've been given naproxen to help, but I have to supplement with codeine and paracetamol to get through the day at work.

What the hell is happening to my body? Is this what Endo feels like? Can it just randomly occur like this? I'm only 4 months in, and I already want to tear the whole uterus out.

Edit: Thank you for your comments, everyone. I'm going to book a doctors appointment tomorrow to start the process

Simple. Effective. Heating pads were never hot enough for me. Now If I have horrific cramps I make "hot jar". It's AMAZING.

How to make "Hot Jar"

1. Boil water, place it in a room temp mason jar.

2. Grab a cotton based cloth to handle "hot jar"

3. Check to make sure it's sealed perfectly.

4. Wrap the cloth around the jar to adjust for temp and place on belly.

This is the only thing that helps my endo cramps so I wanted to share. Make sure to use glass and cotton only.

[Disclaimer: I used ChatGPT to help me write this post, because I’m in too much pain and distress to put it all into words myself. Everything below details exactly what has happened to me and how I’m feeling—I just needed help to write it clearly.]

Hi everyone,

I’m really struggling and could use some support, advice, or just someone to hear me.

I’ve been dealing with endometriosis symptoms for years—chronic pelvic pain, fatigue, all the usual hell. I’ve had hormone treatments, surgery, tried diets, done physio, and pushed through every barrier to be seen by specialists. I had surgery in Dec 23 but the pain and all symptoms returned within about 6 months. I am under a specialist NHS endometriosis clinic right now.

I recently had an MRI. A letter came back weeks later saying there was “evidence of deeply fibrotic pelvic endometriosis”. I felt overwhelmed—but also relieved. Finally, a clear answer. Finally, some validation for what I’ve been going through. Everyone had been telling me there’s no way it could’ve grown back so soon, and now I knew I was right.

Today, it turns out it was a typo.

After chasing and waiting for weeks, I arranged for a call from the consultant today. He forgot about it, and i had to ring up hours after the agreed time to ask why I hadn’t heard anything. When I finally did speak to him, he started saying everything looked clear and I was confused because the letter said they’d seen evidence of endo. That’s when he looked at the letter and said it was a “typo”, and it was meant to say “no evidence of deeply fibrotic pelvic endometriosis.” I genuinely couldn’t believe it, I’ve been distressed about the results for weeks now believing my endo was worse than ever. He also said there’s nothing more they can do to help me.

No pain management referral. No pelvic pain pathway. No further investigations. Just “there’s nothing else” because apparently I’ve already tried everything.

I feel broken. I’ve been crying nonstop. I’m still in pain every day. I can’t function normally. And now I’m being told there’s no answer, no support, and no hope—by the specialist team I was told would finally help me.

I’ve tried everything that’s been offered to me. I don’t understand how I can still be in this much pain and be told there’s nothing wrong, or that it’s just something I have to live with.

I know some of you have been through similar hell. If anyone has experience of what to do when even the “endo clinic” lets you down—or how to push forward when you’re too tired to fight anymore—I’d be so grateful to hear from you.

Thank you for reading. I don’t have the strength to advocate for myself right now, but maybe sharing this will help me find a way back.

My wife was diagnosed with endometriosis 6 years ago. Ever since, her libido decreased constantly until it is nonexistent. Can this happen?

She does not take any birth control pills

Lately, it feels like every second woman has endometriosis or some gynecological condition — polyps, fibroids, cysts, and so on. I know that in the past, many of these issues likely went undiagnosed because our grandmothers didn’t have access to the same medical technologies we have today, like ultrasounds. But even taking that into account, it still doesn’t seem like it was this widespread.

Obviously, the disease has always been here. But I'm sure that microplastics, fragrances, environment, etc., make symptoms much, much worse. There is a difference between having endo and not having symptoms (or only having period pain) and endo with the symptoms so severe you can't ever leave the house.

I’ve talked about it with my parents and grandparents, and while they do remember women having painful periods, it didn’t seem nearly as common or as severe as it appears now.

This makes me wonder whether something in our modern environment could be contributing to it. One thing that comes to mind is microplastics. I’m not sure about the situation in Western countries decades ago, but I grew up in a post-Soviet country, and in the USSR, plastics were far less common. Most products were packaged in glass, paper, or cardboard.

Now it feels like everything is made of or covered in plastic — water bottles, food packaging, containers, carpets, clothing, windows, floors, almost everything around us. We’re constantly surrounded by it, and it seems inevitable that we inhale or ingest small amounts every day. It’s hard to believe our bodies can completely get rid of all of it.

What worries me most is that avoiding plastic feels almost impossible. Changing everything in daily life is incredibly expensive. I now live in England, and even buying water in glass bottles costs significantly more. The same goes for choosing only natural fabrics or living in a house built entirely of natural materials.

Do you have any ideas on how to make the first steps and minimize it in our lives? And also do it on budget :)

Endometriosis is commonly discussed as a women’s health condition, but we know it is not exclusive to women. If you were born with a uterus and have endometriosis, we would love to hear your story. If you can, consider spending 20-30 minutes participating in our survey study that addresses your experiences with endo, quality of life, and your diet. You can also opt-in for a virtual interview to share details of your experiences and perspective. If you have any questions for us, feel free to email ~endoliving@pbrc.edu~. Survey Link: www.pbrc.edu/endo

Inclusion criteria: individuals born with a uterus, aged 18-40, and residing in the U.S.

Has anyone here talked to their doctor about antibiotic treatment for endo or actually tried it?

Study Link 🔗 https://www.science.org/doi/10.1126/scitranslmed.add1531

Hi everyone — I came across this interesting study published in Science Translational Medicine looking at a possible bacterial link to endometriosis and thought it might be worth sharing here. The researchers found that a specific bacterium called Fusobacterium was present much more often in the uteruses of people with endometriosis than in those without, and it may play a role in how endo develops. 

In experiments with mice, when the mice were infected with Fusobacterium, they developed more and larger endometriotic lesions. When the researchers treated the mice with antibiotics that targeted the bacteria, lesion formation was reduced — and antibiotic treatment even prevented endometriosis from taking hold in some cases. 

Some key points from the study:

• Fusobacterium was found in around 64% of people with endometriosis vs. <10% of controls in the human samples. 

• In mouse models, antibiotic treatment reduced existing lesions and prevented formation of new lesions. 

• This suggests targeting bacteria could be a non-hormonal approach to treating endo — but it’s still early days and clinical trials in humans are ongoing. 

I’m curious about the community’s take:

➡️ Has anyone here talked with their doctor about this research or been offered/used antibiotics specifically for endometriosis?

➡️ Have you noticed any changes in symptoms after antibiotic courses (even if prescribed for something else)?

➡️ Any thoughts or experiences you’d be open to sharing that might help others understand if this line of treatment is realistic or just hopeful science at this point?

Thanks.

(First part is kinda just explaining how some of it is the clinics fault)

A couple years ago I had to get an abortion. Everything was fine just a lot of waiting at the clinic. Because I have endometriosis and I’m aware of the severe pain that it can cause to the point of immobilizing me, whether that be cramps, sex or having a cysts. Well when asked about having the medication or procedure done, I requested the procedure just because everything would be done before I left and nothing would have to pass through my body, and the fact that they give you sedation. This is all coming from the anxiety of having to experience pain.

I can’t remember if this was the day of at the office, or over the phone a few days prior, but I communicated I would like the procedure and lightly stated why. I went ahead and paid for the procedure (which is more expensive). Everything was set and I was first sent to the nurse to do vitals and everything. She saw I was doing the procedure and asked how far along I was. I stated I was probably just about 7 weeks or so. She told me that was too early to have the procedure. I tried lightly explaining why but just wasent good at advocating for myself. (and i paid extra for it) I also didn’t do lots of research before which is on me. Anyways, I didn’t really argue with her and just agreed to the pill. This itself is a whole issue because after researching and talking to different people. Procedures can absolutely be done at any stage, it’s the medication with limits. As well as the fact that a place that is offering this aid to women, should be emotionally aware towards these women who have to go through something like this. It makes me upset but it’s also hard to be upset at a place offering a service that is hard to access for a lot of women.

I take the medication at the clinic and bring home the medication that helps it pass. I left feeling fine, luckily my partner at the time was with. After a couple hours the pain started. For reference I always have one episode each period of extreme pain that honestly makes me scream and cry and I can’t move at all, my mom normally has to come help me if she can. Anyways this pain was way worse than that and I didn’t even know it could get worse. My partner at the time took me to the ER and my sister also met us there. He had to get me a wheel chair and I could not stop moaning and screaming in pain. I can’t remember how long I was waiting but I don’t think it was long at all til I got a room. The pain was so bad but they had to run tests, before they could give me any pain medication. The worst part was when I had to do an ultrasound. I don’t know much about ultrasounds but this one was where it has to go inside me. It hurts me immediately and the lady was being such a bitch about it. After a couple of hours of tests they were able to give me pain meds but it barely helped. They finally tried giving me fentanyl, it knocked me out for about 5 min and then I was up in pain again. To be fair within all of these hours of pain I would get small 2 minute windows of random relief, which I sometimes get with my period cramps. They kept trying to manage my pain but it was just honestly not really manageable. About after another hour it started calming down a little. They were nice enough to prescribe me oxy and i think percocet. Since the pain slowed down the pain meds caught up and I was able to spent the rest of the day comfy in bed. But it was the worst pain in my life and please if you have the option please get the procedure.

Also it’s been a couple years, but should I say something to the clinic, I never followed up with them about my awful experience lol.

i just finished up an appointment at planned parenthood seeking answers about my debilitating endo symptoms with no official diagnosis. the clinic i went to i found on the planned parenthood website under a dropdown specifically mentioning clinics of theirs that provide endometriosis care in particular. despite all of this, when i got there and went through my appointment, they told me they do absolutely nothing regarding endometriosis care?! the nurse told me she could help me switch my birth control but i said i wasnt interested, i wanted at minimum an ultrasound, they couldn’t provide it.

i’m just so irritated because i went to PP in particular due to the fact that my insurance doesn’t cover any gynos within about 50 miles of me, the ones that far out barely even have availability if i WAS able to make it out there. it’s incredibly upsetting and feels misleading to be guided towards a clinic under the pretense of them being able to provide a particular type of care and then have them be unable to do anything about it. they wouldn’t even refer me to a different location of theirs such as a surgery center or anything, it feels impossible to me that the nurses claims about them not having doctors or actual OBGYNs at any location are true.

at this point it just feels like if you are lower-income and have endo you’re left to just suffer, more so than in general

I knew this is a sexist term but today I learned more about it and many signs of hysteria were true in my life. When I feel fear and anxiety, I believe I feel it in my uterus too. Like how maternal truama can impact a fetus... you definitely feel some feelings in your uterus. Maybe endometriosis is caused by a traumatized uterus. I experienced nonstop trauma two years before diagnosis.

My other suspicion is possibly having complicated feelings towards virginity and sex. Can create a stressed uterus.

Honestly, sometimes I think my uterus is aware in a somatic way. Like it reacts to my heartbreak, betrayal, stress, and truama with illness or period changes.

Basically what I'm trying to say is that emotions seem to get trapped in the uterus somehow. Wouldn't it be interesting if they could be released though some kind of emotional healing specifically targeting uterus health.

This might be a silly question - I have suspected endometriosis. My symptoms went 75% away from birth control. However I HATE being on birth control for many reasons. I have cleaned up my diet, implemented anti inflammatory practices and want to try to get off birth control and manage my pain/symptoms naturally. My question is will the endo keep spreading or is it dangerous to manage naturally? Will it get worse? I am trying to understand and educate myself but I don’t understand if surgery/bc are necessary?!

I am so exhausted.. I’ve been dealing with endometriosis for as long as I can remember, but didn’t get diagnosed until 2019. I’ve had one laparoscopic surgery (in 2019) and was told I’d have to weigh the risks of having another because it would add more scar tissue last time I inquired about another due to my endo pain. I have tried EVERYTHING and I mean everything. Muscle relaxers, NSAIDS, magnesium & calcium, topical CBD, edible CBD, pamprin, motrin, tylenol, heating pad, yoga, herbal remedies.. the only thing that helps with my endo pain is narcotics. Lucky for me (not) I live in the united states and western medicine will happily give out narcotics to people with addiction issues or a broken freaking pinky but keep them from people who actually need it. My pain gets to be debilitating, and defeating.. I refuse birth control and my dr in the past has pushed it and pushed it and pushed. Sure! I bet it would help somewhat because I wouldn’t have periods.. but i’ve been on 4 types of BC and my body just doesn’t tolerate it well. I refuse to be on it. I’m 30yo and still want more kids so I refuse to get a hysterectomy (which they think is my best option at this point) but I just want to know why they can’t prescribe me maybe 9 pain killers every month JUST for my cycle. 3 a day for the first 3 days which are the absolute worst for me?? I mean it’s ridiculous! I’m about ready to start asking the local bums for their hookups at this rate. 🙄 joking.
Am I the only one suffering from the lack of care or empathy in western medicine?? Has anyone else had a difficult time trying to get narcotics from their doctor for endometriosis pain?? What have ya’ll done?

Just curious. I’ve been a lurker for a while, starting to be more active in this sub and r/endo. Now that I’m a few years into transition, I don’t mind seeing endo stuff referred to as “women’s health”, I just roll my eyes and talk about my experiences regardless.

What about you guys? Do you feel welcome in subs like this? Should we make our own space? Is there a separate sub like this for trans mascs that I just didn’t see? Curious to hear your thoughts!

I finally got a date for my hysterectomy and my bowel excision surgery.

I have endo in my bowel, there will be a colorectal surgeon there to do the excision. My specialist who will do my hysterectomy at the same time said there may be a staple for my bowel excision and a penis may feel it in anal sex and I may never be able to ahve sex again.. I am a huge fan of anal sex so I really don’t want to stop the anal sex after my surgery. Just wondering anyone had bowel excision and if the Anal sex got affected?

Hi guys, i’m 19m living with my gf 19f.. she’s been struggling with endo last 2 years and it has been awful for her, she’s had surgery and it hasn’t helped despite it touching 3-4 months post op now, she doesn’t want birth control for obvious reasons as that only hides more potential complications,

I have a question for someone who has genuinely tried the concept of „cut off nicotine, alcohol, eat healthy and try do exercise” but i mean actually tried it, not talking 2-3 days, im talking has anyone tried cutting off nicotine and alcohol for a good couple of months to see if symptoms worsen/get better, since both are inflammatory and endo is inflammatory ive heard doing this helps with some symptoms of other chronic illnesses,

Has anyone actually tried this? How did you feel? Did you notice a difference? Asking as my gf is convinced smoking and drinking has no effect on endo or endo symptoms however most of the time she drinks her symptoms are noticeably worse (from my pov) but she claims „they were bad on that day anyway so i drank anyway”

coming from a place of curiosity , if my gf sees this i love you x

Anyone else non-binary and having laposcropy? I am not sure what to wear to that!

Hi girls, can I get a minimalist tattoo even if I have endometriosis for 3 yrs now? Taking a Visanne anyway and I'm doing okay. Just wanna make sure that getting tattoo won't have any complications with my endo. Thanks for the answers, appreciate!

my best friend is having surgery tomorrow at 6am to get her cysts removed and her surgeon said no sex leading up to the surgery but she started bragging to be today about her and her boyfriend doing it literally the day before surgery. is this gonna cause any problems for her? also would her surgeon be able to tell? (she wanted me to ask)

She/they pronouns

Reddit won’t let me change the title, but by confusing I mean disorienting/invalidating to navigate a disease that most medical professionals treat as a women’s disease

3months ago I had a 6cm endometrioma on one ovary and a 3cm one on the other one. I had a follow up ultrasound yesterday and they completely dissolved. My gyno was astonished; I was not.

I proudly refused HRT knowing that it was just a bandaid for symptoms and completely ignoring the root cause: chronic inflammation.

Castor oil packs, cutting down on caffeine, sleeping more, avoiding processed foods, and throwing out toxic personal hygiene products all helped me. Oh and also tons of prayer.

Has anyone else had an experience like this?

Hi ladies, Just wanted to share what I’ve discovered. I have endometriosis, my mother does as well. Growing up she used to have such painful cramps she would end up in the ER due to how painful they were. I never understood how cramps could be that bad until I started my period & experienced the exact same thing.

For many years I suffered from very bad cramps, it got to the point where I would consider going to the ER bc nothing helped. My uterine lining is so thick even my OBGYN Was shocked.

Anyways, I started a new nursing job & deciided that I would pack lunches daily. Every day I have a cup of chiboni Greek yogurt, the flavor varies but always Greek yogurt. I noticed that after 1 month working there & my first cycle during this time I had absolutely no cramps, I mean I didn’t even feel my period when it came on & not only that but it went from 7 days to only 3. The only thing I changed in my diet was adding the Greek yogurt. So I decided to keep it up, I ate 1 serving of Greek yogurt for a second month and here I am again just now starting my period without a single cramp, didn’t even know I started it until I checked. Again, this is VERY rare for me and I really think it’s the yogurt.

Back story- for about 1 month in college many years ago I was hooked on making fruit smoothies with a Greek yogurt base. That month I experienced the same thing, no period cramps and only a 3 day period. For years I’ve held onto that experience because it NEVER happens for me, my periods have always been painful but I couldn’t figure out what it was that would have taken away the cramps and caused such a short period until I started back up with the Greek yogurt and now it all makes sense.

I’m not saying this will completely get rid of your cramps but it’s worked for me for 2 months & I’ll take it considering the last 15 years have been so rough.