u/Western-Ninja9256

I have really severe hirustism. Literally anywhere you could think of. My whole body is covered. I haven’t showed my skin since I was about 11 years old, I’m 21 currently. It’s been a whole life of hiding basically. I am terrified of relationships and they’ve always ended because I just can’t show them my body like this. I’ve lasered, I’ve waxed, I’ve shaved, naired, my skin just doesn’t look hairless even when I try to remove everything. And it takes hours. Are there really men who won’t care about this? It’s literally everywhere and I can’t just shave quickly and look hairless, I have a 5 o clock shadow everywhere. The last guys I’ve dated didn’t like hair, I would slip it into the conversation without saying I had hirsutism, and they all hated body hair, despite seeming like great guys otherwise. I just don’t know how I’ll ever go about dating or sleeping with anyone. It ends every time because of this. On top of this I also got endo and cant physically have sex with them either anymore, I’m mad I didn’t do it when I could without pain. But this body hair insecurity was in the way. I feel trapped!

Visanne has given me vaginal atrophy, which has worsened my pelvic floor issues because now my vagina is extremely dry and the skin hurts to touch. Is it possible estrogen vaginally could make endo pain come back? Or make it spread? I know they say it’s not systemic, but anytime I’ve used any suppository or anything vaginally, I have felt the effects. So I find this hard to believe. My prolactin is also super high and I don’t know if this would not be good to take? But I’m suffering with the drop in estrogen. It’s hard to get through pelvic floor therapy because my vagina has like zero elasticity now.

I feel broken. Ive been on visanne for two years and it has decreased the pain to the point im not completely non-functional, but I’m still in a lot of pain everyday. Constant back, pelvic, leg, and abdominal pain. The visanne gave me vaginal dryness and it makes the tissue in my vagina more painful. But without this medication I’m in the ER every week and can barely get out of bed everyday. I feel confused when anyone can put anything inside their vagina with this condition. Tampons, Pap smears, ultrasounds, sex, I don’t get it. Especially when they aren’t on any hormonal suppression. It feels like blades and knives are going into my vagina and my entire pelvis if I try to do any of that, nothing even goes in anymore because I got vaginismus from all the constant pain, so anything that tries to enter hits a wall.

Why is this so severe for me? I’ve never met anyone unable to actually insert things, they just say it hurts but they’re still able to manage it somehow? And even when I was able to I would end up in the hospital afterwards. Like I’ve heard people say it’s painful but they’re still able to do it a few times a week or so. I don’t understand? I’m worried because I cannot have sex, so I avoid relationships. I’m in pelvic floor therapy, I have been for months and there’s no difference. My bowel issues are pretty bad as well and affect me daily. The pain is still non stop it’s just not as severe as it was without hormones. And my pelvic floor is extremely tight with constant spasms, so the pelvic floor is a big issue.

If I’m still this bad even with the pill, how will I ever complete medical exams? Or have sex? I really worry about my life with this issue specially. A finger feels like it’s killing me. I don’t get how anyone manages to do this. I feel broken. I have a super high pain tolerance but I literally can’t put anything in my vagina. I can’t even image attempting to have sex. Even if I orgasm myself (clitoral) I get so much back and pelvic pain and bowel cramps.

Edit: I’m also scared to try estrogen vaginal, because I’m worried it’ll make the endo pain worse again.

Ever since my endo symptoms randomly took over my life two years ago, I have developed chronic pelvic, back, and leg pain, as well as bowel issues. I have pain every single day even though visanne has suppressed my periods and ovulation, mostly because my pelvic floor has become unbelievably dysfunctional to the point I’m having constant spasms and constantly clenching involuntarily, which causes the pelvic and back pain to persist.

I now deal with vaginismus and cannot complete transvaginal ultrasounds, and internal work with a pelvic floor therapist hurts so bad even though it’s just her finger. Having low estrogen from visanne has also made my vagina very dry and makes the tissue thinner and more sensitive, which adds a new kind of pain. I’m so irritated because by helping one thing it makes another thing worse it seems.

This pisses me off the most because the disease causes more than enough pain but now my muscles stay clenched 24/7 even in my sleep and I literally don’t know what will make it relax. I wanted to keep an eye on things, especially because I was prone to cysts and I also have polycystic ovaries. But now I can’t because the probe literally won’t go in anymore and it causes excruciating stabbing pains. Literally feels like broken glass in my vagina.

I’ve tried Valium, ketamine, and baclofen suppositories. I’ve also tried flexeril and weed, nothing unclenches it. It doesn’t feel psychological to me either, so I don’t know what else to do because it’s like the muscles have a mind of their own. Perhaps estrogen cream vaginal can help but estrogen gives me pain so I’m scared even though it’s not supposed to have systemic effects. I’d anyone else dealing with this terrible loop?

I really wish we could find out what causes endo, I’m assuming estrogen issues play a big role but I just want a solid cause. And the fact that there are multiple diseases that involve tissue of other organs growing where it’s not supposed to (splenosis, nasal glioma, endocervicosis, ectopic pancreas tissue, ectopic thyroid tissue, cell metaplasia such as barretts esophagus, and dermoid cysts to name a few) is quite insane.

And of course there is adenomyosis, endosalpingiosis, fibroids etc. Like it’s just the same issue in different fonts it seems? I just want to understand how this forms, and why there’s similar variations of it in the human body with different organs.

Does anyone else have black, coarse hair covering their legs, buttcheeks, back, stomach, butt crack etc.? I have so much hair you literally can’t even see my skin under it. I have a bush going down my abdomen. I have high androgens and polycystic ovaries, my DHEAS is high and my prolactin is very high as well. This started very young when I was like 4 years old, so I’m suspected to have NCAH instead of actual PCOS, but still waiting to see. I’ve also ruled out a prolactinoma but it’s still super high so I may need to check again. Does anyone else have it to this extent? I always see creators on TikTok and ig who will have hirsutism on the face but have super thin or basically non existent hair on the body. I feel confused because I don’t get how I grow it everywhere but some only have it on their face or certain patches on their body. Anybody like me literally covered in black thick hair everywhere? It’s literally impossible for me to remove it properly because it’s SO thick and there’s so much everywhere.