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» Lichen Sclerosus
Fri Feb 16, 2018 2:47 am by ryn207

» MAY HAVE FOUND A CURE- PLEASE READ
Thu Feb 15, 2018 10:04 pm by infinitelywondering

» my rock bottom, psychological effects of vulvodynia, I told him he can leave me
Wed Feb 14, 2018 6:43 am by renegade_magdalena

» Some interesting information about nerve pain in general
Wed Feb 14, 2018 3:58 am by Athena

» Sore after using dilator for first time in a year
Wed Feb 14, 2018 3:45 am by Athena

» What helped me
Wed Feb 14, 2018 3:38 am by Athena

» NO PAIN DURING SEX
Wed Feb 14, 2018 3:33 am by Athena

» Coping with Vulvodynia
Tue Feb 13, 2018 3:55 pm by NaughtyNanny

» Newby not sure where to turn
Tue Feb 13, 2018 2:10 pm by sarisbaris

MAY HAVE FOUND A CURE- PLEASE READ

Thu Feb 15, 2018 10:04 pm by infinitelywondering

Dear all,

Today has been the day I've been waiting for. The day something FINALLY makes sense.
I've been told countless times that I've got nerve damage or a muscular condition, yet none of the specific treatments have helped me. My GP suggested attacking this from a different angle so referred me to a dermatologist specialist


after having a vestibulectomy with no success, I decided to visit …

Comments: 0

NO PAIN DURING SEX

Sat Feb 10, 2018 12:18 am by rockylife

I HAVE NO PAIN DURING SEX, BUT I FEEL THIS BURNING SENSATION ALL DAY JUST BESIDE THE VAGINAL OPENING. DO I REALLY HAVE A VULVODYNIA? I'M CONFUSED.

Comments: 2

Newby not sure where to turn

Thu Feb 01, 2018 3:32 pm by Cerjo87

Hi this is all very new to me , well the talking about it bit is , the pain while having sex and also the uncomfortable feelings after and feeling like I have  sistitus most of the time I’m very used to , I’ve suffered for 7 years now I’m only 30 . Finally after all this time the doctors or should I say my gp has said I have Vulvodynia and have givin me gabapentin to try .i told her I’d …

Comments: 4

Looking for a friend..... and new problems

Sat Jan 06, 2018 11:38 pm by infinitelywondering

Hi everyone,

I hope you're doing well.

I hate to say this, but I feel beaten down and terribly alone. I had a vestibulectomy surgery about 6 months ago and I was absolutely praying it would work. It didn't.

6 months later and here I am, sitting on my bedroom floor crying my eyes out because I know I'll never be able to have painfree sex. I don't know what to do and just need a friend Sad



Comments: 8

Newbie to the site

Sun Jul 30, 2017 12:16 am by Ksa

Hello. Thank you for this wonderful site. I'm currently under the care of a dr in Phoenix that specializes in vaginal disorders. I will probably be on a suppository of estridol the rest of my life and I am currently on medications for a rare form of vaginitis that's pretty unheard of for my age. My vagina literally hates me. I've struggled with vulvadynia for 20 years, the duration of my …

Comments: 4

Vulvodynia from #metoo media coverage

Thu Jan 25, 2018 9:01 pm by dooleyhornberg

I am wondering if anyone else in this forum has experience an increase or flare up in their vulvodynia as a result of the coverage of the sexual abuse scandals in Hollywood, DC, and the recent gymnastics scandal. I have definitely had a flare up.

Comments: 0

So frustrating!!

Thu Jan 04, 2018 1:15 am by Hannah77

Well I'm back in pain after 7 years of pain free days.
I was diagnosed with vulvodynia when I was 17. I suffered for three years with horrible burning all day, painful sex with my boyfriend and just pure misery Sad I went into a spontaneous remission when I was 20. I'm still not sure how the pain stopped but all the sudden I could go an entire day without thinking of my vagina, sex started to …

Comments: 3

Looking for suggestions or encouragement

Sat Jan 13, 2018 12:10 am by ryn207

Hi there. I'm 25 and have been dealing with this for over a year and a half and I'm really starting to lose hope this will ever stop.

In July of 2016 I had a yeast infection. When Monistat didn't work I went to my gynecologist who prescribed Diflucan. When the itching didn't stop she retested me and found that my yeast infection was gone, but I now had a bacterial infection. After taking the …

Comments: 4

Amitriptyline given for vulvodyina pain

Tue Oct 24, 2017 2:46 pm by katycrawford

Hi there,

After years of being misdiagnosed etc as most women have on this forum I have finally been diagnosed with vulvodynia (yay) and have been given the lowest dose of an antidepressant called Amitriptyline. Has anyone been on this before and has any positive (or negative) news to give me? Im feeling down already and I've only been taking it for a few days, I don't have much hope of it …

Comments: 11


hi all new possible diagnosis of vulvodynia

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hi all new possible diagnosis of vulvodynia

Post  princesst124 on Wed Jul 16, 2014 6:27 pm

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.

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Re: hi all new possible diagnosis of vulvodynia

Post  bvnh13 on Wed Jul 16, 2014 6:54 pm

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.Cool 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

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Re: hi all new possible diagnosis of vulvodynia

Post  princesst124 on Wed Jul 16, 2014 6:59 pm

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

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Re: hi all new possible diagnosis of vulvodynia

Post  Caropes on Wed Jul 16, 2014 8:00 pm

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.

Caropes

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Re: hi all new possible diagnosis of vulvodynia

Post  Alana3 on Wed Jul 16, 2014 9:20 pm

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?

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Re: hi all new possible diagnosis of vulvodynia

Post  princesst124 on Wed Jul 16, 2014 11:39 pm

Boston area.

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Re: hi all new possible diagnosis of vulvodynia

Post  princesst124 on Wed Jul 16, 2014 11:41 pm

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.

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Re: hi all new possible diagnosis of vulvodynia

Post  Alana3 on Thu Jul 17, 2014 12:42 am

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

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Re: hi all new possible diagnosis of vulvodynia

Post  princesst124 on Thu Jul 17, 2014 12:51 am

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

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Re: hi all new possible diagnosis of vulvodynia

Post  Leslieg on Thu Jul 17, 2014 1:27 am

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

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Re: hi all new possible diagnosis of vulvodynia

Post  Leslieg on Thu Jul 17, 2014 1:33 am

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

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Re: hi all new possible diagnosis of vulvodynia

Post  princesst124 on Thu Jul 17, 2014 11:06 am

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.


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Re: hi all new possible diagnosis of vulvodynia

Post  Alana3 on Thu Jul 17, 2014 3:04 pm

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!

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Re: hi all new possible diagnosis of vulvodynia

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