New to all of this

Hi all,

I have read this board for a bit. My story is so similar to a lot of you. My burning pain started about 9 months ago. I went to various doctors (Urgent care, GYN, dermatologist) and they all looked at me as if I was crazy since they did not see anything abnormal. I swore that I had an STD even though I have never had sex because I have only ever heard of pain down there because of an STD. I had a biopsy which was quite painful and only thing it said was a mild inflammation. I finally found a Pelvic Pain Specialist who diagnosis me almost immediately with V and I think I found a doctor who actually understands what I am going though (who would of thought it would be a male). I am so thankful for the nva.org site for helping me find a specialist who finally diagnosis me with something. He put me on estrogen cream which helped a bit and now trying an estrogen/testosterone compound. I think this cream made the burning worst again, but I have another appointment this month. The burning pain is bad, but the emotional impact of this is far worst. I am happier when around friends, but when I am alone, the pain increases with sadness.

I am looking for a bit of support and I have to say just being able to read posts of this forum has been a lifesaver. I thank all of you for having the courage to share your stories.

Anna

Hey Anna,

Im so glad you found this forum. Its a blessing for us V ladies.

My experience is quite similiar to yours. I had in the first months of my Vulvodynia just the most disturbing burning and acid like pain in my vulvar area. I went to regular docs, once even an emergency room, dermatologists...again alot of them made me feel like I was crazy and several implied that I may be a basket case. Finally, a specialist told me that I have neuropathic pain of the vulva. Basically, some sort of nerve irritation which manifested itself as burning, searing, acid like, stinging PAIN.

I am currently on Amitriptyline. Although I am not 100 % ...I am better these days. Still, have to limit myself at times...no bike riding or trousers. Oh well.

I have looked into physio for the pelvic floor muscles...just need to find the time to book an appointment. Quite difficult as I work full-time and barely have time to go for groceries.

There are alot of very knowledgeable ladies on here. I have gained alot from reading their stories and posts. We are the experts.

Never would I have thought a condition like this to exist. But life throws curve balls at you sometimes. Its a matter of coping and self-management for me with my vulvodynia. I am not looking for a cure or easy fixes. Its going to be a long road, but I have come so far when I look back at the pain I was in a couple of months ago.

Anna, if you are on meds make sure to give them time to work and build up in your system. Also, you need to find out what dosage gives you pain relief. The Amitriptyline gave me results at 50mg. So as you can imagine, it wasnt an overnight thing. It took a good couple of months.

So, yeah, this is a journey for us ladies. In so many respects....emotionally, mentally, physically, and spiritually we are being tested to the max.

Anywhoo....welcome.

You are in good company here !

Hi Anna and welcome, has your pelvic pain specialist looked at the pelvic floor muscles? They can be the cause of this or at least a massive contributor.

Hi Anna and welcome to the forum!

Glad you found a dr who cares..thats a brilliant start. I havent tried hormone creams. Was put on various birth control pills which did nothing and just made me dry so that didnt help

I am on Pregabalin (anticonvulsant) 300mg and also trying biofeedback pelvic floor therapy (currently having to take a break from the biofeedback till I recieve the new sensor) I found good pain relief with both approaches but had a flare up last week and think its either due to the sensor being mental or that fact that I started eating more sugar products again or both who knows!

Deff look into the pelvic floor thing, discuss it with your dr and see what he says

Yes I find the time I am alone I feel the worst..get very anxious and desparing...but we are here for you and understand what you are going through

Hi all,

Thanks so much for all the replies! I haven't talked to my doctor yet about pelvic floor exercises, but I know that is on his list of things to try with me. His theory is you need to find the right combination of medication/PT/natural remedies/diet to help you heal. He says that the same thing does not work for each patient which is quite annoying, but seems to be true with what I read. Hopefully, my appt. next week we will find something to at least start to reduce the pain (I am mainly concerned about getting through finals first ).

Again thanks for the replies. I'm glad I have a place to come and discuss as I feel my friends and family don't quite understand it.

Hugs,

Anna

Hi Anna and welcome!

I'm glad you have found a Dr who at least knows what vulvodynia is - the diagnosis really just means pain in your girl bits but it's better than being treated like a fool. We've all been there!

I have burning pain (generalised unprovoked V.) I also had an increase in pain with moods/stress etc. I've come to understand that lifestyle choices have a huge impact. SO diet modification is big in my world. I went sugar free!!! It's hard to imagine life with sugar in it now. It made a significant difference to my pain every day. I also meditate, try to control stress, have pelvic floor physio, limit coffee (that also made it worse) and alcohol. And I have a therapist to blurt out all my crap to. I try for feel good stuff, it doesn't always work but I want to be in control.

Good luck in your search for answers, we are all to offer support and encouragement xx.

Hi Anna,
I thought it would be reassuring for you to know that the most recent research coming out of the US supports starting with hormonal treatments for V and then progressing to other meds like ami or gaba (in addition, as your thoughtful dr. mentions, to lifestyle/PT). This research comes out of the 'When Sex Hurts' book by Dr. Goldstein et al. Do you know if you have generalized vulvodynia or provoked vestibulodynia? Usually hormonal treatments are for provoked v., but no harm trying it for either! When I go back to my gynae I'm going to ask if I can try it too!
Best,
Katie

I have generalized V so it hurts all the time in random places all over. I have been reading a few other posts and was wondering if you could tell me what a flare-up is?

A flare up for me is when the pain gets really bad. I have provoked V and, potentially, generalized too. What I mean is, penetration feels like burning/searing ripping at the opening but I also have days, usually when I try to wear jeans, when there is just irritation everywhere with some stabbing pain or weird crawling feelings thrown in just for fun. When that happens to me, I call it a flare up. I think it's generalized because it's not at the vestibule only, and it can happen when there's no provoking (i.e. when I wake up and I'm only wearing a t-shirt).
Some ladies seem to have the irritation & pain all the time, so it's like a constant flare up. For others the flare up is just when the pain goes from 2 to 8. It's all individual I guess.
How about you?

Zazu wrote:A flare up for me is when the pain gets really bad. I have provoked V and, potentially, generalized too. What I mean is, penetration feels like burning/searing ripping at the opening but I also have days, usually when I try to wear jeans, when there is just irritation everywhere with some stabbing pain or weird crawling feelings thrown in just for fun. When that happens to me, I call it a flare up. I think it's generalized because it's not at the vestibule only, and it can happen when there's no provoking (i.e. when I wake up and I'm only wearing a t-shirt).

I have this exactly, sometimes if I can manage to avoid wearing any tight fitting clothes for a few days I start feeling better then optimistically try jeans and then get what you describe above, tingly crawling feelings...

A flare up is when the pain gets really bad and intense

For instance I can have moderate or low pain days and then wham! serious pain that makes me wana just cry and retire to bed...

The only thing I can say to myself during these days (having flare up day today) is that it will pass and ease up..

Keep positive..I know it can be so difficult but try and remember you can vent on here!