Log in

I forgot my password

Latest topics
New diagnosis, any advice whilst I wait for a specialist

Wed Oct 25, 2017 1:47 pm by Julesyjules


I'm new here and wanted to ask for some advice whilst I wait to see a specialist nurse.

After urinary problems which lasted 7 weeks, I finally saw a urologist, who on examination discovered significant inflammation and called in a gynaecologist, who diagnosed vestibulitis. They referred me to a nurse who specialises in vulvar skin issues. That was 5 weeks ago, and I'm still waiting for the …

Comments: 1

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: 2

Vulvodynia help

Tue Nov 14, 2017 4:27 pm by Katiej

Hi guys new here and newly diagnosed. So I had bv and then after alot of antibiotics and home remedies I still continued to have weird symptoms despite swabs being negative. Two seperate gynes have told me I have vulvodynia as a result of the area being overwhelmed. So first gave me lidocaine which xidnt do much. No I am on amitriptyline for the past 5 days. Seems to be kicking in a little (im a …

Comments: 3

New w/ Secondary Provoked Vestibuldynia

Wed Apr 26, 2017 11:46 pm by Birdy

Hi everyone,

I'm here because I'm pretty sure I have secondary provoked vestibuldynia, even though my gyno is still "optimistic" it is not.  My problem started six months ago when I got my second UTI in as many months (after going 25 years of life without one) and then ended up with a bad yeast infection (also my first one ever) thanks to the antibiotics.  Ever since the yeast …

Comments: 4

Newly diagnosed

Tue Oct 10, 2017 8:37 pm by Brevispink

Hello everyone. I have recently been diagnosed with unprovoked vulvodynia and would really appreciate some advice and support. I have had a chronic urine infection for 16 months and was on antibiotics for 9 of those months. I have been very uncomfortable for the entire time, but now I have absolutely unbearable stinging and burning all day with itching too. The infection has just about gone, …

Comments: 9

Recent "Poke" Pain - So Confused/Losing My Mind

Thu Oct 12, 2017 9:26 am by kelseybeth23

Long Story, but I am losing my mind and getting really depressed, so if I tell the full story maybe someone can help me.

Back in August I started to get an itch down there. Normally, in the past, when this would happen, I would change the way I wore my clothes, take more baths instead of showers, and use Monistat. This time, after about two weeks of no relief, I started to get concerned. I was …

Comments: 5

Does anyone else experience this?

Sat Oct 14, 2017 5:21 pm by Angelmegs

Hi— im new here. Im incredibly desperate so if anyone has any suggestions i would greatly appreciate it. Im a 20 year old female with vulvodynia and vaginismus. I was on the birth control pill (junel fe lo estrin) from age 13-18 because of severe menstrual pain. I used the xulane patch for a few months when i was 18 but eventually stopped BC altogether because it interferes with my med for …

Comments: 0

Post Full Vestibulectomy - 5 Years Later - Please Read

Tue May 02, 2017 6:18 pm by jen007

Hi All,

It's been awhile since I've written a new topic on the forum. Wondering if any of the same ladies are still here. I've come back to update you all on my post vestibulectomy results. I can't remember if I've done an update on my current state, so forgive me if this is repeated information... I can't remember how to view my old posts! Anyway, let me get on with my update.

For 4 years post …

Comments: 4

Do you ever worry that you're making it up?

Fri May 27, 2016 6:50 am by Lucci


I was diagnosed with Vaginismus and Vulvar Vestibulitis 10 years ago. I was 18 and scared and moving across the country for college, but luckily was able to find a doctor who specialized in 'Women's Health' who immediately put me into physical therapy. Long story short, I've been in and out of the system ever since.

A few years into treatment, I had the diagnosis of PTSD added on for …

Comments: 7

I'm New and need my fellow V's

View previous topic View next topic Go down

I'm New and need my fellow V's

Post  nanmark3 on Fri Apr 11, 2014 3:16 am

Hi Ladies, I’m so glad to know I’m not alone in this journey! For 24 years I’ve had signs of V, but just here and there.
26 months ago it felt like my body totally turned on me! I had slowly built up to walking 5 miles, so proud of myself! Then my world crashed! **My vulva and inner thighs were so painful and swollen! **My fibromyalgia flared big time! **My painful feet all of the sudden had big, painful lumps in the middle of my arches. **My seborrhea dermatitis erupted all over my face.
So here I was, it was too painful to walk or stand, too painful to sit, too painful to wear panties let alone pants, no more sitting like a lady with my knees together not even in a dress! Sad to say, that’s still my story, though I‘m not still falling apart emotionally.
After various doctors and a lot of research… mine is Generalized V. -constant vulva pain often times into the inner thighs. Painful sex is more common now and dryness, which I use Coconut oil for. Mine stems from 24 yrs. of unresolved hip and pelvis pain, I’m doing 2 treatments that are showing promise and the low oxalate diet. (because with the FM I had IBS for 22 yrs.) which has lessened the extreme V pain by 1/2 so far. My heart goes out to all of you dear women! I hope I'm not going on too long for my intro! Nancy


Posts : 6
Join date : 2014-03-24

View user profile

Back to top Go down

Re: I'm New and need my fellow V's

Post  Delilah1 on Fri Apr 11, 2014 9:02 pm

Hello Nancy! Welcome to the forum. You are not alone. There are many wonderful ladies on here. Read through all the posts and I'm sure you will find inspiration, hope and comfort in that we all understand what you are going through. What treatments are you doing that have helped? I too found that coconut oil was helpful. Now I use Crisco which is a little more emollient which makes it last longer.


Posts : 55
Join date : 2013-04-24

View user profile

Back to top Go down

Re: I'm New and need my fellow V's

Post  tinkerbelle2 on Fri Apr 11, 2014 9:40 pm

hello Nancy! Sorry to hear you have been suffering too and for so long! I currently can't say anything has substantially helped me.. yet ! Trying to stay hopeful x

Posts : 302
Join date : 2013-09-28
Age : 25
Location : Brighton, England, UK.

View user profile

Back to top Go down


Post  nanmark3 on Sat Apr 12, 2014 1:05 am

Thank you so much for your replies Delilah and Tinkerbelle Smile Yes, I've been reading for weeks, gaining knowledge and strength. Delilah the two therapies that I've started are by the same practitioner, 30 minutes of PRRT (pronounced 'pert') Primal Reflex Release Technique then 30 min. of Bowen Therapy. PRRT because of previous unresolved trauma causing my pelvis and sacrum to constantly rotate out. They are both forms of soft tissue massage but so much more. I'm pleasantly shocked at how powerful they each are! If you look into Bowen at Bowen directory .com thoroughly look into their training, the 2 in my area both had the same title "advanced training" though looking into their schools programs - one had only basic training and mine had the most extensive training at a different school. It's the first time I've had real hope for relief in this old system for so long!!!
The only downside - the very evening after my first treatment I broke out with an extreme rash where my vv connects to my inner thighs. I've never seen anything like it, not painful - since 95% of the time I'm in bed but after Castor oil not clearing it up I tried Fluocinonide until she told me it was my body releasing toxins so not to try to get rid of it but to let it run it's course with natural oil to sooth it. That gave me a lot of peace, I have no doubt that is the most toxic area of my body especially with all of those sharp oxalate crystals and what a big sign of how quickly it's working on my stubborn system. I've had other major signs of their having good work in me too. How good to be able to share therapies and encouragement!!!
xo Nancy


Posts : 6
Join date : 2014-03-24

View user profile

Back to top Go down

Re: I'm New and need my fellow V's

Post  Sebby (Admin) on Thu May 08, 2014 1:35 pm

Welcome to the forum  Smile 
Sebby (Admin)

Posts : 750
Join date : 2009-12-03
Age : 36
Location : London UK

View user profile http://vulvodyniasupport.forumotion.net

Back to top Go down

Re: I'm New and need my fellow V's

Post  Sponsored content

Sponsored content

Back to top Go down

View previous topic View next topic Back to top

- Similar topics

Permissions in this forum:
You cannot reply to topics in this forum