r/vestibulodynia • u/Better-Temporary1951 • 17d ago
How were you diagnosed?
I have been dealing with pain around the vaginal entrance (internally) for a few years now. I am 26 years old. Previously, I had no issue as far as pain during intercourse. I have been on the pill for 8 years (levonorgestrel 0.15 mg-ethinyl estradiol 30 mcg). When I went in for an annual pap (my first & very very late I know), I informed my NP that I was having pain during intercourse. She said, "good news!, I can fix it." and prescribed estradiol 0.01% (1g weekly) and said it was vaginal dryness from being on the pill. That has not seemed to be the case and this has not helped the pain. She did not ask about bleeding afterwards (which I do have). The bleeding is very light, and from my research is likely due to posterior fourchette tearing. The pain I have during intercourse is worst at 6 o'clock but is felt from 3 o'clock all the way to 9 o'clock. And the pain is pretty severe, and I often bite down on a blanket during intercourse. The pain can subside after a few minutes, but not always.
I have a follow up with the same provider in a few weeks and called today to confirm my appt time, and that with my further research of my symptoms, to ask if the NP would be suitable to treat this or if there was someone in the office that would be better for me to see. The nurse was pretty dismissive and said it was my choice and that the NP could treat the issues I am having.
What all hoops did you have to jump through to get diagnosed, and what do you recommend? Has anyone had a similar experience and/or symptoms? Considering I am speculating and do not have a formal diagnosis of vestibulodynia yet, if anyone has any advice or thoughts I am all ears.
1
u/scottsdaleswim 13d ago
Just wanted to say I’m 28 and was just diagnosed today (also a long term BC user). Doctor prescribed me the estradiol 0.01% as well. But I’m also going to start pelvic floor therapy as I’m probably tensing up anticipating the pain before sex.
I’m hoping this works. Sucks to be dealing with this in the prime of our lives
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u/catouthebag 12d ago
I had to read through my urgogynocologists notes. She told me I had blushing around the entrance, but reading through her medical notes there was an actual diagnosis.
I have never had a great experience with gunocologists, the urgogyno I’ve seen is much better. They are more educated on pelvic dysfunction/ pain.
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u/Bakingsomecake 17d ago
I went to all the gynecologists, dermatologists, pelvic floor therapists, tried all the biopsies, steroid creams, estrogen creams, etc. It was all garbage. Note, I'm in the San Francisco area and have PPO insurance, so some of these doctors went to Stanford and such. These aren't bad doctors.
I gave up and called Irwin Goldstein's office. Drove 16hrs and paid ~$1600. They had all the answers I needed and I'm getting treated now. I should've gone years ago. (Both hormonal vestibulodynia and neuroproliferative vestibulodynia.)
FYI, the vestibule tissue is unique ("endoderm") and has mainly androgen receptors, so hormonal vestibulodynia is usually an issue with testosterone, and the treatment includes testosterone. It's very common for gynecologists to hand out estrogen cream for people like us, but tbh I think it's a sign that they severely lack information. I don't think they teach about these conditions in typical medical school.
I hope this helps. I have more to say about the technical aspect of your symptoms, but at the end of the day I think you're gonna need a doctor who knows this stuff. Also, get the book When Sex Hurts. Seriously, read it.