r/vestibulodynia • u/cashewleaf • 21d ago
Vestibule pain reduces when aroused?
I'm 25F. I've had vestibule pain for as long as I remember, never been able to have penetrative sex. I've also never used any form of hormonal birth control. I'm currently trying to figure out what my vestibulodynia might be caused by, with my PT.
My pain is located in some spots in the vestibule around the vagina - largely between 3 and 9 o clock. The pain feels sharp and stinging, almost like a raw burning pain, 9/10 at its worst. I've been given desensitisation vestibular massage exercises - to gently touch the area with lube & do diaphragmatic breathing to get the area "used to touch". I've been doing this for 1-2 months with no real improvement.
I recently tried doing the massage/touch exercises on the painful spots while using a vibrator with my other hand to get myself aroused. Essentially distracting myself from the pain with pleasure. I was really surprised that it actually kinda worked? The area still felt super sensitive but it was not really as painful - it dropped from a 9/10 to maybe a 4/10. The pain also significantly went down for a while after an orgasm - so the whole area was much less painful. But the next time I tried the massage (unaroused, with lube) the pain was back to a stinging 9/10 pain.
Is this a common experience? I'm trying to understand whether this might be a pelvic floor issue or a neuroproliferative pain issue? Open to any thoughts!! Thank you!
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u/AcademicBlueberry328 10d ago
Honestly I think that many of us have some form of neuroprolipherative that we might not even know about.
Reading this I’ve realised that my vestibule has always been painful, unless aroused. As in if I push it or somehow stretch it. And even when aroused insertion has almost always been at least slightly painful.
Hadn’t thought about that before! I just thought it was the way it was supposed to be 🤦🏻
But I’ve also found out I’m hypermobile and neurodivergent … so maybe the whole nerve system is off?
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u/cashewleaf 10d ago
I'm also hypermobile and neurodivergent! And I feel very similarly, that my whole nerve-muscle system is off. My PT says that you're actually not supposed to feel ANY pain down there at all - which was news to me too.
How do you deal with the pain, if you always feel it? And have you been trying any treatments?
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u/AcademicBlueberry328 7d ago
Oh really! Wow, this really needs to be studied more.
Well … I haven’t really found anything that totally works. I had embolization for pelvic vein insufficiency half a year ago, and that helped some. But all veins weren’t closed off, so I’m starting to have new problems again. I use low dose naltrexone, Meclon Lenex topical cream, testosterone (as I was super low on free, but in I’m my early 40’s now), Gynevia to manage my local inflammation, and then I’m on weekly azols to prevent my yeast infection from coming back. I’m also trialing now H1 and H2 blocker (loratadine and famitodine) to see if that would help.
I also have weird issues with my GI system, hair falling off blah blah … it sort of started for me really bad after a borrelia infection and subsequent amoxicillin.
I have pain as well in my urethra, bladder and perineum. It sort of travels around, my pudendal nerve is somehow affected as well.
I hope you find something that works! I have better days and some days without almost any pain, and then randomly I feel pain creeping up on me again and I have a hard time peeing. I don’t know what causes it, and haven’t found any pattern.
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u/Murky_Bar_7067 20d ago
If I use a vibrator while I have sex I can tolerate it and the pain goes down significantly. I do use estradiol cream also that helps a little
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u/cashewleaf 20d ago
Thanks for sharing! Sounds like we have similar experiences. Have you identified the root cause of your vestibulodynia? Do you know if it's muscle/nerve/hormone related?
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u/Murky_Bar_7067 20d ago
I definitely think it’s nerve related and hormone related. I was having pain on my vulva and using estrogen cream help with that. I saw two doctors Dr. Moss in Washington DC and I saw a doctor Goldstein San Diego. She diagnosed me with hormonally mediated vestibulodynia. And Dr. Goldstein diagnosed me with Neuro proliferative vestibulodynia. His treatment option is to remove the tissue of the vestibule and even removed the tissue above the urethra and do a skin graft from your mouth. That sounded like way too much for me. I still am able to have sex somewhat pain free. But I do think the pain affects my muscles. So I go and see a pelvic floor physical therapist once a week.
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u/cashewleaf 20d ago
I'm also worried that mine might be neuroproliferative & I'm afraid of the surgery too. Haven't tried any creams yet, I've mostly just been doing pelvic floor exercises and desensitisation.
I've been looking into other ways to reduce pain & desensitise my nerves (Dan Buglio & Alan Gordon have a lot of content about the mind-body connection with chronic pain) - maybe that's something that may help you as well?
I hope you feel better very soon too!
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u/Ok_Deer3091 9d ago
Hello ! Same here, vestibule pain for as long as I remember. I’m struggling to find people who never used any form of birth control so your experience really relates to mine. Do you find that your vestibule is more painful post period ?
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u/cashewleaf 9d ago
I'm sorry that you're going through this too! I haven't seen any major differences with my menstrual/hormonal cycle necessarily. It's kind of a constant pain when provoked throughout. If the pain changes with your cycle, it might be at least somewhat hormonal maybe?
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u/Ok_Deer3091 9d ago
Interesting ! Personally my vestibulodynia is both provoked and unprovoked. The vestibule is always painful when touched during all my cycle. I’ve noticed that it becomes unprovoked post period (a few days after my period, my vestibule is painful when walking or bending for exemple). The unprovoked pain fades away a few days later, but the vestibule is still painful even during ovulation when touched !
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u/cashewleaf 9d ago
I see!! Mine is mostly only provoked. I get unprovoked pain only when I'm in a flare up (i.e. if I've touched the area in the recent past & it gets inflammated) but it gets better in a few days and has nothing to do with my cycle.
Have you been able to see a doctor for this?
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u/Murky_Bar_7067 18d ago
There’s also a book called The Way Out, which has been really good for pain. Using estradiol cream 0.03% has definitely helped me as well as pelvic floor Physical Therapy.
I would definitely try the estradiol cream. Originally they gave me estradiol cream and testosterone mix 0.01% for the testosterone and that helped me too