r/vulvodynia • u/AutoModerator • 18h ago

Weekly progress check-in

A weekly thread to let us know how you're doing!

Feel free to share how you're feeling, how your treatment is going, or any questions that you might have about it. Anything that you're doing for the vulvodynia counts as treatment, whether it's making an appointment, seeing a specialist, self-care measures or anything else.

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u/vicariouslyhaunted 18h ago

I managed to get an appt with a specialist who does vestibulectomies. It's not until August, but I'm hoping he can give me better insight and that he gives me the okay for surgery

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u/justagirl_7410 Provoked vestibulodynia 4h ago

Broke down at my PT appointment last week while trying to explain how discouraged I feel. My PT is gonna try to be more focused on my vulvar symptoms and prioritizing a few long term home exercises. She really wants me to do desensitization which I have very little faith in, but I am doing it. 

She also did a total reeval and noted my vulva was more red than usual, asking about my cycle (her go to). I thought initially it might be because I had sex the day before, but after ruminating on it uncontrollably realized I might be having an irritant or allergic reaction to saginil, the quercetin topical I was hoping would put a dent in any mast cell activation. what am I supposed to do if I can’t handle topicals or oral meds? I fully freaked out and cried that day, applied hydrocortisone, prayed I wouldn’t get a yeast infection from the irritation/steroid. It reminded me of how I felt when I was first sick, like I’m blindfolded and striking out at anything that will get my out. It’s frantic and desperate, like I would give anything for a parent or partner or doctor to swoop in intervene. But I just have to live through it, do what I can and keep living into the next moment. A friend I texted reminded me of that. 

I think my vulva is less red now, and I’ve been having the most insanely horny few days of ovulation I’ve had in a long time. Sex is very hit or miss, and when I need it this badly it puts me in an emotionally vulnerable place to disappointment. 

My work continues to be exhausting, and my other body parts keep falling apart. I saw an old mentor from college recently and was telling him that my goal is still to get through this and have it make me more kind, have me feel more loved by my community and God. Some days it feels like I can only become more bitter and alone.