u/lts_daria

I recently found out that I have endometriosis, and it seems to have started around the exact time my pain began. I had an MRI before my pain started that showed nothing, but now that I've been experiencing pain, my MRI shows endometriosis and multiple adhesions, like between my uterus and rectum, my ovaries and intestines, and other areas.

My doctors believe the endometriosis is causing so much inflammation that it may be irritating nerves such as the pudendal nerve, especially because of all the adhesions.

Has anyone been in a similar situation, had surgery, and experienced improvement?

Hello everyone. I wanted to share that after 8 months, I finally felt one day that my fissure had healed, but it left behind a hard scar along the entire length of the fissure.

The problem is that it's been 2 months since the scar formed, but it still becomes inflamed and irritated very easily. Sometimes I can go many days without any inflammation or pain, and then suddenly, after cleaning myself, I irritate the scar and I'm left with a feeling of irritation.

I'm not really sure how to treat the scar. Does anyone have any recommendations?

Hello!

I would love to know who is generally considered the most respected surgeon with the best or most consistently positive outcomes. I've read a lot about Irwin Goldstein, but I've also come across some negative reviews, so I'm curious to know who people in this group would recommend the most nowadays.

Thank you!

Hi everyone. Im looking for a good doctor! Almost every gyno that i met, has no idea of this condition or the types of vulvodinya. If anyone can recommend me a doctor i would apreciate it.

Hello. Three years ago I started having vulvar pain. Pain when sitting, etc. Neurologists told me it was pudendal neuralgia, and gynecologists said it was vulvodynia. The pain started 3 months after a urinary tract infection that was so severe it hurt my entire vagina and even my anus, with bladder spasms so intense they were unbearable. Well, 3 months later, out of nowhere, I woke up with terrible vulvar pain.

During these 3 years, I tried everything. I did 2 full years of pelvic floor physical therapy and improved a lot. Almost all the pain went away, and the remaining pain completely disappeared after using lidocaine daily for a couple of weeks.

I think those were the best 6 months of my life because, for the first time in 3 years, I had no pain. Until suddenly I got another severe urinary tract infection. The pain I get from UTIs is the worst I’ve ever felt in my life. My bladder spasms on its own like a cramp in a leg, but imagine that happening inside your lower abdomen—it’s extreme.

During this last infection, the urethral pain was horrible and extremely intense. Along with all this, I started to feel a pain I hadn’t had in these 3 years: pain in the anterior vestibule, in the area just below the urethra and at the vaginal entrance.

Usually, my bladder takes at least 2 months to recover after a UTI. That is, the infection goes away but the bladder remains irritated and painful.

My bladder has already improved, but the vestibular pain hasn’t. I’ve had this new pain for about 2 months now, and it’s constant (24/7). It hurts to the touch—I can’t even dry myself properly after urinating. Even contact with underwear or surfaces causes pain. My bladder and urethra are now pain-free, but this vestibular pain remains.

I’m currently taking amitriptyline and applying lidocaine.

My doctor’s theory about when I was “cured” during those 6 months was that the lidocaine managed to desensitize the pain—that it was due to overactive nerves.

Right now, lidocaine is not helping me heal anymore. I don’t know what to do.

I live in Latin America and there are no expert doctors. I could travel, but I don’t know what I should do.

I spent 3 years fighting this, managed to recover, and now it feels like the infection inflamed and damaged the nerves all over again.