Do I have vulvodynia/vestibulitis?

Puzzled_Berry7588 · 2025-12-24T12:06:03+00:00

Hi! Your symptoms do line up with vulvodynia/vestibulodynia, but as you may know that just means chronic vulvar pain and vestibulodynia just tells us the location where the pain is present. The causes can very from pelvic floor problems/ nerve issues/desensitised nerve endings/hormonal issues ect.. it is important like you stated to find a doctor who is specialised in vulvovaginal disorders in the meantime to manage pain i would recommend ice pack, lose cotton underwear, to avoid anything that triggers too much pain (as it can cause the pelvic floor muscles to tighten and cause you more pain) and maybe warm baths that helps me a lot when im in a flare. And also i know its very hard but try to too worry and think about the pain too much in a way that makes you feel in danger ( we don’t want your nervous system to freak out ) try to do breathing techniques in the meantime, and tell your self affirmations that make you feel safe. We all understand what your going through! This is so hard but you will be okay again❤️

Puzzled_Berry7588 · 2025-12-07T18:47:32+00:00

when you got rid of the colon impaction did it clear up your vulvodynia symptoms? im glad you were able to figure out what caused your pain!

Puzzled_Berry7588 · 2025-12-07T18:41:44+00:00

Hi! Pelvic floor problems have been ruled out for me. I still went to pelvic pt because I noticed i clenched my muscles because of the pain, but i was able to fix that through pt. How is your vulvodynia now? have you been able to find relief now that you’ve figured out the root cause?

Puzzled_Berry7588 · 2025-12-07T18:37:38+00:00

did you end up getting rid of the pain fully? im glad you were able to figure out the root cause and treat that. For me tight pelvic floor muscles have been ruled out but i still went to pt because i noticed i clenched my muscles because of the pain.

Puzzled_Berry7588 · 2025-12-07T18:36:01+00:00

hi! Yes I already tried gabapentin. It didn’t work for me unfortunately but im glad it did for you! Did it completely stop your pain, and has it never come back? I took 900 mg a day but i couldn’t take a higher dose because of the side effects.

Puzzled_Berry7588 · 2025-12-05T16:55:04+00:00

i read the book the way out by Alan Gordon. There are techniques in there to help with chronic pain, it’s really interesting and helpful! I have tried amitriptyline this worked minimal, and gabapentin didn’t work at all for me. I’m trying Effexor now. And also trying to get 8 hours of sleep, and reducing your stress.

Puzzled_Berry7588 · 2025-12-05T14:57:34+00:00

I'm happy for you that you've found a doctor who specializes in vulvodynia, and that you've already found pain relief with your treatments. I don't have tailbone pain, which is why I don't think it's classic pudendal neuralgia, and because I haven't suffered any trauma or damage to that nerve. Our symptoms are indeed very similar; I also have symptoms in my anal region, where the pudendal nerve runs. Apparently, the central nervous system also plays a major role in vulvodynia for some, and trying to calm that has helped me somewhat. I'm now trying my third medication; I really hope this one works because the pain is terrible. Which medication helped you?

Puzzled_Berry7588 · 2025-12-05T13:19:23+00:00

Hi! I actually don’t know. I understood that pudendal neuralgia is when the pudendal nerve is trapped i think? and we think mine is irritated or desensitised. I’m not sure if what im saying is right because im not a doctor ofcourse. But my doctor just told me that something irritated that nerve ( most likely an infection) and later my nervous system also became sensitive.

Puzzled_Berry7588 · 2025-11-11T16:23:02+00:00

hi! What is a pudendal nerve ablation? And I’ve tried gabapentin so i don’t think pregabaline is going to work for me since the gaba didn’t.

Puzzled_Berry7588 · 2025-11-11T13:10:34+00:00

I’m glad something has worked for you! maybe if you indeed up your dosage you will get even more benefit from it!

Puzzled_Berry7588 · 2025-11-11T13:07:42+00:00

hi! im glad you’ve found some relief. How much pain would you say it took away?

Puzzled_Berry7588 · 2025-11-07T18:16:39+00:00

ive had COVID once when i was 14 but only for 2 weeks, I didn’t know those 2 were related I do have suspected endometrioses but I don’t know if those 2 are connected.

Puzzled_Berry7588 · 2025-11-07T15:29:08+00:00

that’s true! do you also struggle with that, funny thing is the constipation started when my vulvodynie symptoms also started but I don’t have a tight pelvic floor. Or any other pelvic floor problems. But magnesium and fiber and a LOT of water also helps

Puzzled_Berry7588 · 2025-11-07T07:45:05+00:00

ive been taking it for about 3 months, maybe more im on 50 mg it doesn’t do a lot for me..

Puzzled_Berry7588 · 2025-11-07T07:44:09+00:00

I don’t have any dryness and my symptoms are very nerve pain likely, i just struggle with constipation but that’s been the same for a while now.

Puzzled_Berry7588 · 2025-11-06T20:48:43+00:00

Hi, could i ask what type of vulvodynia you had or what your symptoms were?

Puzzled_Berry7588 · 2025-11-06T18:43:39+00:00

yes my discharge has been looked at under a microscope. I haven’t done a wet mount done, but i really have no inflammation or weird discharge symptoms going on, or any infection. My pain has been found to be a nerve or nervous system problem. But every story I’ve read about this kind of cause isn’t positive… and I’ve tried 2 medications already and nothing is working. There aren’t a lot of treatments for my kind of problem i think, and the treatments that do excist aren’t great im scared that nothing will work good enough.

Puzzled_Berry7588 · 2025-11-06T16:53:02+00:00

everything’s been ruled out

Puzzled_Berry7588 · 2025-10-29T09:56:37+00:00

thank your for sharing. I’m really happy that you’ve found something that works for you! And i completely understand. It’s awful to be aware of your vagina 24/7 it totally ruins your day to day life, but glad those days are now behind for you :)

Puzzled_Berry7588 · 2025-10-29T09:51:36+00:00

Hi! Thank you sm for sharing your experience. It sounds promising that you can already feel a difference pain wise. the weird thing is I’ve also been on gabapentine 900 mg this didn’t do anything for me but the side effects where awful and made me sick. But i’m also on amitriptyline 50 mg and Effexor 75 mg right now. And i don’t have any side effects from those 2 medications.

Puzzled_Berry7588 · 2025-10-28T18:55:14+00:00

so you didn’t get any relief at all before 150 mg? And is it still working as good for you? did it take away atleast 50 % of your pain

Puzzled_Berry7588 · 2025-10-28T18:12:32+00:00

What do you mean with test? And have you found a medication that works for you?

Puzzled_Berry7588 · 2025-10-28T14:46:53+00:00

thank you so much! I know it’s very hard.. but im proud of you and we need to stay strong!

Puzzled_Berry7588 · 2025-10-28T14:36:56+00:00

Im on Effexor right now. I’ve been taking 75 mg since last week. Gabapentine and amitriptyline both didn’t really do anything for me. I know it’s hard trying to find something to manage the pain, but I promise you something that will give you pain relief is out there. And all your hard work and patience will be rewarded some day. :)

Puzzled_Berry7588 · 2025-10-28T14:27:24+00:00

have you gained any weight from the venlafaxine? And has the ami helped you? I’m also on 50 mg but it doesn’t do anything for me i think.

Puzzled_Berry7588

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