u/imcircasurviving

I’ve had pain my whole life. Had a vestibulectomy with Irwin Goldstein in 2018 and he decided to also remove the 12:00 area, which completely worsened my pain. From my understanding, the surgery has since changed and he doesn’t do the 12 o’clock procedure the way he did mine. I felt like a guinea pig in his experiment.

I’m in pain every day. I have tried fucking everything. My urethra burns, the entire area under my clitoris burns. Over the past year, my mons pubis and outer labia are now in daily pain (doctors have no answers).

I’ve been in PT for years-no difference. I use estradiol/testosterone cream daily. No nerve medication has EVER made a dent in my pain. Currently on lyrica and it’s done nothing. The only thing that helps is icing with an ice pack.

I’m not sure where to go from here. Nothing takes away my pain. I’m 27 and I hate being alive. I hate being a woman. I hate myself. I hate the doctors that failed me. I hate my body. My stupid, fucked up body. I’m going to feel this way forever.

27F. Basically as the title states. I’m so bummed and unhappy with my life. I have chronic pain and recently lost the ability to walk comfortably. Food is the only thing that brings me joy. It’s all I think about.

But it also brings me misery. I need to eat until I feel disgustingly full, otherwise I’ll just keep thinking about food until I eventually binge. It’s not like this all the time though– I’ll have three good weeks of safe calorie counting and I’ll feel really good, but then I crash and burn.

I’ve struggled with this for years, but it’s gotten worse since my pain has worsened. I went to therapy and my therapist suggested weight loss meds, despite me not being clinically overweight. I need to lose 15 pounds and I feel like I will never get there. I don’t know what to do and I’m so sad.

I’ll preface this with saying that I’ve had vulvodynia (congenital vestibulodynia) all my life–I’m 27 now. So this may be another shit symptom of my condition, but I need some relief.

For the past few years, I’ve had pubic hair discomfort. I need to be completely shaved down there or else I have extreme mons and labia pain. Even two days after shaving, it hurts. There are no visible ingrown hairs or irritation, so I don’t know what’s causing it. I’d like to try and grow it out completely to see if the pain stops, but I can’t get to that point because it’s unbearable. It’s so bad, I can’t even go for brief walks.

Things I’ve tried;
- Shaving frequently (causes irritation, but I need to do it)
- electric trimmer (doesn’t help since I need to be completely bare down there)
- pelvic PT (no difference)
-nerve medications (no difference)
- icing (helps temporarily)
-have been on a daily estradiol/testosterone cream for 8 years (no difference)
-bleach free TP + loose cotton underwear + wearing no underwear (no relief)
-spinal imaging and pelvic MRI to rule out any disc/hernia/cyst issues (no abnormal findings).

I have a hormonal IUD to mitigate the increased burning around my period. My doctors want to rule out endometriosis and pelvic venous congestion. I’m not convinced it’s either of those. Any suggestions are greatly appreciated!!!

TLDR; intense mons pubis & labia pain unless I’m completely shaved bare.

Edit; I am okay and safe. Thank you to everyone who reached out. I called the 988 hotline and I’m more calm. I’m safe and in my house. Thank you to all.

TW: Long story short, my vagina burns 24/7. It’s something I was born with but gets worse as I age. New symptoms keep arising. I have no treatment options left. I have tried absolutely fucking everything, with zero relief. I’m overwhelmed. I can’t talk about this with anyone because it’s embarrassing. I still live at home, and I’m unemployed. I’m a fucking loser. Had a botched surgery. The pain gets worse as I age. Can’t grow pubic hair without it feeling like needles in my skin. I can’t have sex. I can’t sit comfortably. I can’t even go on fucking walks because of how much irritation it causes. I have nothing to offer. The best part? I have to act like I’m okay. No one would ever know I’m going through this because of how well I hide it. Life keeps moving, and I’m forced to do the same.

I have an exit plan but I’m afraid of it not working. I wish I was braver. I’ve just endured so much pain and the last thing I want is more pain.

I hate my birthday, as it’s a reminder of another year older and another year in forever pain.

TLDR; chronic vulvar burning makes me want to leave this cruel world

My doctor started me on 75mg, twice daily, for nerve pain. Is this too high for a starting dose? After doing some research, it seems like 25mg is the norm for beginners. I haven’t taken my first dose yet.

I’d like to talk to her about this but she would require another appointment and I’d really like to avoid the $75 copay 😟 Should I just start off with once a day? Thank you kindly in advance.

I’m about a week and a half into taking 10mg nortriptyline for chronic nerve pain. I take it at night as instructed, but it seems to be causing horrific sleep issues. I take it a few hours before bed, and I’m wired. Heart racing, thoughts spiraling, full body chills. When I finally fall asleep after hours of laying there, I only get a few hours in before waking up again.

Should I take this medication in the morning instead? I emailed my doctor but she’s isn’t replying. I feel so horrible.