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classic vestibulitis look gone, but pain remains
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TOPIC: classic vestibulitis look gone, but pain remains

3 years, 1 month ago #23852
  • kate2009
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classic vestibulitis look gone, but pain remains

So after the testosterone/estrogen cream, pelvic floor rehabilitation, removal of irritants, stopping of birth control pills, and the taking of anti-convulsants and anti-depressants among various other years worth of treatments.....the skin looks much better in the vestibule (in response to the testosterone/estrogen cream), but the burning pain remains and the entrance to the vagina still hurts.
What now? Does that mean the pain is nerve related and if so, why don't the anti-convulsants and anti-depressants work? I have been taking them for years.

Please help.
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3 years, 1 month ago #23853
  • rformas
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Re: classic vestibulitis look gone, but pain remains

Hi Kate,
I have also tried creams, oral medications, and physical therapy and have not had pain relief. I'm having a vestibulectomy in May for treatment of vestibulodynia (for the burning pain).

If your pain is due to nerves, medications (like anti-convulsants and anti-depressants) work for some people and not others. It would be up to your doctor to determine whether or not surgery would be a good choice for you. I just know from all that I've been through, some people respond to creams or oral medications, and others don't at all. Unfortunately I haven't, and if you exhaust your medication resources as well then surgery might be a consideration.

You asked for costs in another message but it really just depends on the doctor. I called Dr. Goldstein's office when I was first looking for a surgeon and they were able to give me the prices of everything from the first appointment to the surgery, etc. So if you have a doctor in mind, just give them a call and I'm sure they will be able to help you out.

Good luck!
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3 years ago #23854
  • kate2009
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Re: classic vestibulitis look gone, but pain remains

Cheeky,
Thanks for the information. Is Dr. Goldestein your doctor? That's who I was thinking about seeing. If so, you had said you did not respond to creams and medications...what was the cause of your vestibulodynia?
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3 years ago #23855
  • rformas
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Re: classic vestibulitis look gone, but pain remains

Dr. Goldstein is my doctor but I haven't seen him yet because I live in Colorado. My doctor here recommended surgery and there was no one that had extensive work in the area of vulvar pain that I could find in colorado, so I decided to take drastic measures and go see a doctor on the east coast. My surgery is in 3 weeks and basically I'll have my new patient appointment on a Tuesday and then on Thursday have surgery.

My doctor that I had here never said what was causing my pain. I was diagnosed with a yeast infection originally but treating that didn't get rid of the pain. I had a vaginal laceration about 1.5 years ago but I had shortly before lost my virginity....so either the tear initiated the pain or I was born with an overabundance of nerve endings. Having spoken with Dr. Goldstein he suspects that I have too many nerve endings and in that case surgery is supposed to be really successful. He won't be able to say 100% whether I need surgery until he sees me but likely I will. If you want I'll keep you posted on my appointments and what not when the time comes in 3 weeks.
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3 years ago #23856
  • kate2009
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Re: classic vestibulitis look gone, but pain remains

Cheeky,
That would be fantastic! Please do keep me informed. My email address in my profile. I am just at a loss and feeling hopeless.
The best of luck to you:)

Kate
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