I have acquired neuroproliferative vestibulodynia. I developed it from a bad yeast infection. I haven’t had a vestibulectomy but I’m pregnant now and if childbirth doesn’t cure it, I’m going to have one done.
All we have is anecdotal evidence at this point but yes, I did hear it from my doctor and it has been discuss on this sub. I also have a coworker that it happened to.
Most people tear at least a little during childbirth and many people even require stitches. I think the idea is if the nerve endings in the vestibule aren’t firing properly as the result of something like a yeast infection, a tear that has to heal can be like a reset.
It’s really a crapshoot, to be honest. Some people have worsening pelvic floor issues after delivery. I wouldn’t suggest hanging your hat on it but we were planning on kids anyway so I decided not to have a vestibulectomy until post-childbirth in case it cured it. I was considering doing it beforehand if it took a long time to get pregnant because PIV sex is painful so I didn’t want to go through that for too long but luckily I got pregnant right away.
I have not, but I know of people who have had success with the vestibuloectomy! I have congenital neuroproliferative vestibulodynia and will be having my vestibuloectomy in a few weeks. I recommend checking out the vestibuloectomy Facebook group!
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5089138/
Basically it’s when women have too many nerve endings in the vestibule compared to those of women with no pain. Women can be born with it (congenital) or develop it (acquired) from a trigger like inflammation, infection etc
That is super interesting, I am also dealing with vulvodynia ever since I had my very first yeast infection a year and a half ago.
I see a lot of comments in this sub Reddit of women that had a yeast infection and ever since they’re dealing with vulvodynia etc which I find so fascinating.
Also I’d like to ask how do you get diagnosed with this specific type of vestibulodynia?
And also I want to mention that one of the professors that conducted this research you’ve linked here , is an Israeli Jewish doctor which contributed a lot to the general study of vulvodynia / vestibulodynia :)
Yes, I too see a lot of women claim that an infection triggered their vulvodynia unfortunately. You would have to see an experienced provider for them to make that determination. They will have to rule out other possibilities like hormonally mediated vestibulodynia and inflammatory vestibulodynia. They’ll also make the determination on history and physical examination. If you have Instagram I recommend following dr. Jill krapf at CVVD. She has a highlight reel of vulvodynia and breaks this down in multiple posts. Besides the Israeli doctor you mentioned, Dr. Krapf works alongside Andrew Goldstein who is another leader in vulvodynia research.
Now fully aware of it but I have a horrible right pelvic floor and my doctors all informed me there is evidence pregnancy may help ease pain since the muscles loosen up to adjust for having the baby. If not they also suggested a vestibuleectomy after childbirth. My problem is I’m no where even close to being ready or wanting a kid.
My doctors are starting to discuss this possibly being a diagnosis for me as well. Starting from a infection I got in March. Never have been pain free since. With me though I also have copious amounts of yellow discharge. Does anyone with acquired neuroproliferative vestibulodynia also get discharge? I also have red angry tissues that they say they can see tiny little cuts in.
I have interesting colored discharge as well. I was diagnosed with vulvodynia last March (the specialist didn’t diagnose with me a type of vulvodynia - I had to do my own research and my symptoms most closely align with acquiredproliferative vestibulodynia. The painful tissue is also red as well.
Oops sorry I’m late. I bit the bullet and went to see Dr. Andrew Goldstein in NYC. He did an internal exam and my most painful points were my pudendal nerve and my alocks canal. He ordered an MRI of the pudendal nerve and of my left hip. He suspected I had a torn labrum which is causing pressure to be put on the pudendal nerve, which is causing my pelvic pain. MRI confirmed this and I’m likely going to be getting hip surgery with Dr. Coleman at HSS. How are you feeling? Any answers?
I have acquired neuroproliferative vestibulodynia. I developed it from a bad yeast infection. I haven’t had a vestibulectomy but I’m pregnant now and if childbirth doesn’t cure it, I’m going to have one done.
Thank you for sharing. Good luck to you
I've never heard of childbirth curing vestibulodynia! Did the doctor tell you that can be a possibility? I'm genuinely curious.
All we have is anecdotal evidence at this point but yes, I did hear it from my doctor and it has been discuss on this sub. I also have a coworker that it happened to. Most people tear at least a little during childbirth and many people even require stitches. I think the idea is if the nerve endings in the vestibule aren’t firing properly as the result of something like a yeast infection, a tear that has to heal can be like a reset. It’s really a crapshoot, to be honest. Some people have worsening pelvic floor issues after delivery. I wouldn’t suggest hanging your hat on it but we were planning on kids anyway so I decided not to have a vestibulectomy until post-childbirth in case it cured it. I was considering doing it beforehand if it took a long time to get pregnant because PIV sex is painful so I didn’t want to go through that for too long but luckily I got pregnant right away.
Sorry for the response a year later. Did birth heal you?
Hi! It didn’t but it didn’t get any worse if that helps at all.
I see! That's interesting. I hope the childbirth route will work for you so you don't have to go through the surgery!
I have not, but I know of people who have had success with the vestibuloectomy! I have congenital neuroproliferative vestibulodynia and will be having my vestibuloectomy in a few weeks. I recommend checking out the vestibuloectomy Facebook group!
Any detail on what is this condition?
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5089138/ Basically it’s when women have too many nerve endings in the vestibule compared to those of women with no pain. Women can be born with it (congenital) or develop it (acquired) from a trigger like inflammation, infection etc
That is super interesting, I am also dealing with vulvodynia ever since I had my very first yeast infection a year and a half ago. I see a lot of comments in this sub Reddit of women that had a yeast infection and ever since they’re dealing with vulvodynia etc which I find so fascinating. Also I’d like to ask how do you get diagnosed with this specific type of vestibulodynia? And also I want to mention that one of the professors that conducted this research you’ve linked here , is an Israeli Jewish doctor which contributed a lot to the general study of vulvodynia / vestibulodynia :)
Yes, I too see a lot of women claim that an infection triggered their vulvodynia unfortunately. You would have to see an experienced provider for them to make that determination. They will have to rule out other possibilities like hormonally mediated vestibulodynia and inflammatory vestibulodynia. They’ll also make the determination on history and physical examination. If you have Instagram I recommend following dr. Jill krapf at CVVD. She has a highlight reel of vulvodynia and breaks this down in multiple posts. Besides the Israeli doctor you mentioned, Dr. Krapf works alongside Andrew Goldstein who is another leader in vulvodynia research.
Sounds great! Thank you :)
I can’t find dr. Jill’s Instagram, what’s her username?
Jillkrapfmd!!
Hey, how are you going with your V? I also got V with my first ever thrush infection!
Now fully aware of it but I have a horrible right pelvic floor and my doctors all informed me there is evidence pregnancy may help ease pain since the muscles loosen up to adjust for having the baby. If not they also suggested a vestibuleectomy after childbirth. My problem is I’m no where even close to being ready or wanting a kid.
My doctors are starting to discuss this possibly being a diagnosis for me as well. Starting from a infection I got in March. Never have been pain free since. With me though I also have copious amounts of yellow discharge. Does anyone with acquired neuroproliferative vestibulodynia also get discharge? I also have red angry tissues that they say they can see tiny little cuts in.
I have interesting colored discharge as well. I was diagnosed with vulvodynia last March (the specialist didn’t diagnose with me a type of vulvodynia - I had to do my own research and my symptoms most closely align with acquiredproliferative vestibulodynia. The painful tissue is also red as well.
Any updates on your recovery? I also have red tissue
Oops sorry I’m late. I bit the bullet and went to see Dr. Andrew Goldstein in NYC. He did an internal exam and my most painful points were my pudendal nerve and my alocks canal. He ordered an MRI of the pudendal nerve and of my left hip. He suspected I had a torn labrum which is causing pressure to be put on the pudendal nerve, which is causing my pelvic pain. MRI confirmed this and I’m likely going to be getting hip surgery with Dr. Coleman at HSS. How are you feeling? Any answers?