r/vulvodynia • u/Big_Total_1416 Provoked vestibulodynia • Apr 05 '26

Vent Giving treatment one more year

I think I'm going to give treatment another year before getting surgery. I have had pelvic pain (from endometriosis and vaginismus) for the last 5 years. I don't want to drag this out anymore than it has to. My gynecologist hasn't been listening to me and pelvic floor therapy has been the biggest waste of time. This condition is so isolating and depressing, I don't know how long I can stand it.

4 Upvotes

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3

u/vicariouslyhaunted Apr 05 '26

What have you tried? Also, this is very isolating. It sucks

2

u/Big_Total_1416 Provoked vestibulodynia Apr 05 '26

Over a year of pelvic floor therapy, dilators for over a year, estrogen and corticosteroid cream, yoga, external and internal massages, hyaluronic acid suppositories, gabapentin 300 mg x 3 daily, TENS machine, moisturizing and anti inflammation gels. Nothing has put a dent in my pain 

2

u/geekyloser Apr 05 '26

I’m on low dose naltrexone and while it hasn’t cured me it HAS helped my daily pain

2

u/Safe-Veterinarian-56 23d ago

Hey how long did it take to start helping ur pain? And what dose? I just started two weeks ago and nothing yet

1

u/geekyloser 22d ago

I would say around 2 or three weeks? Can’t remember? My pain still gets worse around ovulation

2

u/vicariouslyhaunted Apr 05 '26

I've seen some people have success with ABG (amitryptaline, baclofen, gabapentin) combo. Idk if that would be worth trying. The other thing right now is ketotifen or cromolyn for the mast cells in the vestibule

3

u/geekyloser Apr 05 '26

I also started ketoftefin about a week ago… can report back here for OP if it ends up helping

2

u/vicariouslyhaunted Apr 05 '26

That rocks. I've been wanting to get on ketotifen too. What kind of doctor prescribed it?

2

u/geekyloser Apr 05 '26

I’m lucky my dad is a Doctor. A naturopath did prescribe me topical cromolyn though (topicals just don’t seem to work for me though)

3

u/vicariouslyhaunted Apr 05 '26

Ahh I've found that luck plays a big part in getting help with this

1

u/Big_Total_1416 Provoked vestibulodynia Apr 06 '26

Thanks y'all! I was wondering about the other treatments I have not tried yet. I also have vaginal dryness that has not let up

2

u/vicariouslyhaunted Apr 06 '26

The dryness could be a hormonal issue. You may need to go on an estradiol/testosterone cream

1

u/Big_Total_1416 Provoked vestibulodynia Apr 07 '26

I think its the best step. Half of the problem with this condition is fighting what doctor's think is the problem. It is not surprising to me that pft and estrogen didn't fix me 

3

u/AfterAd4616 Apr 06 '26

Invasive question: has a doctor checked your testosterone levels? I’m wondering about what might be causing the dryness.

1

u/Big_Total_1416 Provoked vestibulodynia Apr 07 '26

No and it has frustrated me that she told me to retry estrogen cream instead of trying something else 

2

u/AfterAd4616 Apr 07 '26

Ooh, so galling. Definitely worth at least checking. That’s something any PCP or gynecologist could order for you - it’s just bloodwork. Also, if your doctor truly hasn’t checked your hormone levels yet, if you can, I’d shop around for someone else.

2

u/LibrarianExcellent80 Apr 09 '26

Yeah I would get those checked! I had a vestibulectomy with Dr. Irwin Goldstein and like the first thing he did was check my testosterone. He’s very thorough but also doesn’t waste your time on doing treatment for a year. A year SUCKS that’s a long time, Dr. G gave things like 3 months at most! And from his research and book I read it seems like conservative measures seem pretty ineffective as of now from the treatments we know of :( I had provoked acquired neuroproliferative vestibulodynia.