hi all new possible diagnosis of vulvodynia

I just went to my GYN nurse and she believes I have nerve pain and she wants me to see a vulva specialist. I am B R O K E! We live in the US , have insurance through my husband's work but it's minimal. The last time I had female pain it was constant cramps and they said I had a weak lower pelvic floor. I went to a female physical therapist.  The out of pocket expense was over $700! I knew I most likely would need a female pt again after giving birth. What did you all do for vulva pain? Any tips even if sexual/gross, would be appreciated.

My Vulvodynia is nerve related..I did not relief until my ObGyn prescribed me Lyrica and Elavil....The Lyrica is very expensive its over 500$ , theres no generic yet. Im lucky that i have great insurance that will pay for it. Other things is I eat a low Oxalate diet, take vit e/a/b12/b6/zinc, omega fish , grapeseed extract/aloe capsules/calcium citrate/magnisium and potasium. I drink only high PH water (8. and wear white cotton underwear only. Aveeno oatmeat baths help too. I also get acupunture every week. Im about 90% pain free now and if I start to get irratated Its like 2/10 and doesnt last long at all...hope you get relief soon

I would prefer not to take lyrica! Can't do the other stuff you mentioned either .

Hey Princesst124. Where in the u.s. Do you live? How long have you had problems? What is your history. I was recently diagnosed and am still in the process of finding treatment.

I live in the states and finally had surgery to get rid of it but you have to jump thru hoops for that. Where do you live?

Boston area.

Caropes

I thought I replied to you. not sure if it didn't post or got deleted for some reason. I have polycystic ovarian syndrome, hyperthyroid, obesity caused by the previous, endometriosis, and anxiety.

Dr Goldstein is a good doc if you haven't already seen him

Thanks Alana but I got a recommendation for someone in Burlington. I live closer to there.

Hi Princess, I go to the specialist in Burlington, ma too. I hope you're pain free soon.

While you're waiting for an appointment, the standard stuff is:
Minimal soap there, only water; cotton underwear only; rinse w/ little water bottle after urinating; ice packs or frozen peas (20 min); warm water soaks; loose fit clothing.
Monitor pain to determine triggers....
Some girls have tried coconut oil to soothe. If its truly nerve pain....ice packs will be your best friend. xo

Leslie,

Luckily it's only when touched. So it's got to be nerve pain. I do wear cotton panties, I never use soap inside unless I feel gross from menstruation / discharge. I have noticed I'm itchy though alot lately is that part of it? I still have my water bottle from giving birth , I could rinse with that. And I LOVE ice for muscle pain. It will be interesting to see what she can do. I would prefer not to take any meds if possible maybe just before intercourse would be ok. The topical sounds interesting but I don't want it getting on my husband.

When I was going thru vulvodynia, I used a baking soda and water combination made it into a paste and put it down there for about ten minutes and washed away with warm water.  Supposedly baking soda allows your pH to become a little more normal and I will tell you I had INSTANT relief.  I did it twice a day and it allowed me to get thru my day a little better.  Also, massage and/or acupuncture helped me a lot.  If yours is only when touched, you sound a lot like me!  Mine started to get worse towards the end because my muscles were compromised as well at that point.  I also tried physical therapy- before and after my surgery and got relief both times.  My doc made me a compound of amitriptyline/gabapentin/lidocaine which I applied 3 times a day.  This was so I wouldn't get any of the side effects common with the oral drugs.  I would apply it right to the area for 6 weeks.  It unfortunately didn't work for me, but my doc has gotten a good response about 65% of the time.  So it's something to maybe try!