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» I'm sorry im rambling
Today at 5:49 am by Jet227

» Diagnosed Recently
Thu Feb 14, 2019 6:35 pm by davesjen

» New and need advice and help
Wed Feb 13, 2019 12:42 pm by feeling desperate

» New here would very much appreciate advice at the end of my rope
Wed Feb 13, 2019 12:33 pm by feeling desperate

» MonaLisa Touch
Sat Feb 09, 2019 3:46 pm by Julquint

» New member desperate need of other vulvadynia sufferers
Sat Feb 09, 2019 10:09 am by Tfc13

» The pain CAN get better - What's worked for me
Sat Feb 09, 2019 8:17 am by Ginger

» Remission and relapse and again and again
Thu Feb 07, 2019 1:10 pm by mary jane

» Long term pain after partial vestibulectomy?
Wed Feb 06, 2019 1:56 pm by mary jane

I'm sorry im rambling

Thu Feb 21, 2019 5:49 am by Jet227

hey, im 19, ive been struggling with this almost a year. The first week I became itchy I went in to check about a yeast infection another week later. I have been to 10 different doctors a total of about 15 appointments for this problem for the past 11 months. I have been tested for everything including having a biopsy. I was first told basically to just go home and use hydrocortazone, then I went …

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Diagnosed Recently

Tue Jan 08, 2019 3:55 pm by flissyg

Hi All,

I’m so glad I’ve found a place where there are others who understand how I feel!

So this is my story:-

I’m 36,  and 4 months ago, whilst innocently sitting in bed reading I experienced a very sharp stabbing pain in my clitoris. It last only a few minutes and then subsided as quickly as it came on. It put it down to “one of those things”.  The following morning I woke up …

Comments: 4

New and need advice and help

Wed Dec 05, 2018 3:26 pm by Cin124

Hi everyone,

About three months ago, I started having vaginal and vulval itching. Then, about two months ago, my vulva started to feel painful and look swollen, so I went to the doctor. I was tested for herpes, chlamydia, and gonorrhea which all came back negative. I also had to do a vaginal swab test and the only thing that came back positive was yeast infection. I was prescribed hydrozole …

Comments: 6

New here would very much appreciate advice at the end of my rope

Wed Jan 09, 2019 9:09 pm by Jma990o

This might be a little long but it's been such a long time I've even been able to talk about my problems openly thank you in advance for any helpful advice.
So ok I'm 24 I've been having this problem for over two years seen quite a few doctors and obgyns alike and nobody will take me seriously I have had a few utis and yeast infections and even bv once and this all started after one of the utis …

Comments: 3

MonaLisa Touch

Fri Feb 08, 2019 7:35 pm by rl2091

Hi All,

I'm wondering if anyone has any experience with the MonaLisa Touch treatment for Vulvodynia? My pain started when I went on HRT(pill) for anxiety mainly and my pain abruntly stopped when I stopped HRT. However, when I started on the HRT patch (at my dr's suggestion), the pain returned and has never left. That was 7 years ago. I found MonaLisa Touch on the internet purely by accident …

Comments: 1

New member desperate need of other vulvadynia sufferers

Fri Feb 08, 2019 6:55 pm by Tfc13

Hi there hope some1 reading this is going through the same shit as me!, I'm new to this so don't really know where to start , I'm Teresa , I've just been diagnosed with vestibular vulvadynia , after countless appointments with GPS being misdiagnosed, tested for god knows everything , eventually under my gynochologist ,who done all her necessary tests, I now have been given a diagnosis I'm in …

Comments: 5

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: 7

I'm new to this forum and would love some advice! :)

Tue Jun 05, 2018 4:13 am by anikita

Hi lovely gals!

I'm honestly hoping to get any bit of advice anyone might have to offer. I go from bouts of sobbing hysterically in my boyfriend's arms to feeling confident that I can beat this.

I haven't been actually diagnosed with vulvodynia but EVERYTHING under the sun has come back negative. I started having sex 4 years ago after starting Lo Loestrin, with my first and current boyfriend …

Comments: 13

Hello. Happy to have found this group.

Fri Dec 07, 2018 9:01 pm by foxysugarpants

I am new here and hope to gain some insight into my vulva pain. I suffered for a long time not realizing that there are ways to feel better. I saw the Dr. yesterday and I am starting P/T pelvic and valium suppositories. queen

Comments: 0


My story so far!

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My story so far!

Post  tinkerbelle2 on Sat Sep 28, 2013 10:20 pm


Hey everyone Smile 

I'm so pleased that I have stumbled upon this site, I now already feel more hopeful and know that at least I am not alone. People seem so kind and supportive.

Will give you the background info of my own experience with vulvodynia:

I first started having what can best be described as a burning feeling just inside my vaginal opening and the vestibule at 17, back in 2009. To my memory it came on randomly. I think one day I just woke up and it was just really sore and remained sore, but I can't really remember.

I don't remember any obvious trigger, maybe there wasn't one,  but over the course of a few months before the pain started, I went on the Pill (yasmin i think?) I hadn't had sex yet but requested to try the pill due to acne and very painful periods. In 2009 I also had a urine infection, went on antibiotics for the uti and had a thrush infection (not caused by the antibiotics as it was a few months after)

I'm thinking maybe one of those things or a combination of them set up sensitivity and disrupted the flora and fauna of the vagina...who knows. All I know is I was perfectly fine before and wasn't aware of my vagina every second of the day. Luckily I have been fortunate health wise and have never had any serious conditions. I am of a healthy weight and eat a balanced diet.

When I was treated for the thrush and urine infections, any irritation cleared up temporarily. I was fine for a few months after which is why it's so puzzling! scratch 

After the soreness started, I did go back to my doctor and she suggested trying a different form of birth control. I went on a different kind of pill. No change. About 2 months later, in early 2010, I had my first sexual relationship. Sex with this burning feeling wasn't extremely pleasant but i had never known any different, and it wasn't always extreme pain. I then went on the contraceptive injection, and had 3 bouts of that.

Across 2010, 2011 and 2012 I just got on with it! Sometimes the pain was unbearable, sometimes it wasn't so bad. I had got tested for every STD under the sun several times, had blood tests etc. Everything was fine. When the sexual health nurses and my G.P examined me they always thought everything looked normal and health except ocasionally they said it looked a little red and 'angry'. cherry 

Finally at the beginning of this year my G.P referred me to a gynecologist. I had to wait 2 months for the appointment and when I finally did have it, she was also confused! She did the cotton bud test which didn't cause me excruciating pain. My pain isn't really provoked, it's just always there. I know some of you have the pain upon physical contact.

I was prescribed Gabapentin but it did little or nothing to alleviate the pain. I took it for about 6 weeks but had to stop as it was giving me severe headaches and slightly blurred vision (it is a major drug used to treat epilepsy! ) I had been told that it was brilliant for some and didn't work so well for others. Am now awaiting my follow up appointment to see what other options I can try.  

Also, sex is sometimes okay or even good, and other times I am not in the mood at all. I have been with my boyfriend for nearly 2 years. Luckily he is understanding and lovely. He has also recently developed epididymitis (inflammation of the testes and epidymus) , so we are kind of going through a similar thing. I wondered if it could be related but GP says that's unlikely..

Throughout the day my pain can vary at random.

I am finding this whole thing very debilitating and it is worrying that doctors seem to know so little about it. It is just so confusing to sometimes be in such pain and not know the cause. I have tried many creams to no avail. Some days I just want to scream and cut the whole area off! Sometimes I can't get off to sleep because of it.

Has anyone had any relief from biofeedback, botox or acupuncture? I am concerned that because my pain is slightly INSIDE the vagina that they would have to insert needles and things IN me. pale The idea of a vestibulectomy is also frightening but not something I would rule out if it would help!

So glad to hear that some of you have got cured. That is brilliant! cheers 


Last edited by tinkerbelle2 on Thu Nov 21, 2013 9:20 am; edited 6 times in total
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Re: My story so far!

Post  tinkerbelle2 on Sat Sep 28, 2013 10:41 pm


Things I do/have tried: - Cotton undies only, none at night - No tampons -, using condoms, not using condoms - No shower products only aqueous cream - Canesten,Vagisil - Lidocaine - rePhresh - e45 - cetraben cream - sylk gel - baking soda bath (I read it somewhere?!) - I have even tried inserting yoghurt and garlic cloves (crazy or what?!..it didn't help..) I am quite desperate! Feel free to post any ideas or questions. I am happy to give anything a go!


Last edited by tinkerbelle2 on Mon Sep 30, 2013 2:42 pm; edited 2 times in total
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Re: My story so far!

Post  tinkerbelle2 on Sat Sep 28, 2013 10:46 pm


Crying or Very sad 


Last edited by tinkerbelle2 on Mon Sep 30, 2013 2:42 pm; edited 1 time in total
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Re: My story so far!

Post  tinkerbelle2 on Sat Sep 28, 2013 10:53 pm

I am half asleep as I write this via my mobile and the battery is about to die so will edit this post tomorrow ! Night all X


Last edited by tinkerbelle2 on Mon Sep 30, 2013 2:45 pm; edited 1 time in total
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Miserable with my burning vagina

Post  Sunflower82 on Mon Sep 30, 2013 5:47 am

Hi,
Your story sounds very familiar! However when they did the q tip test on me I think I nearly jumped off the bed! I have provoked and unprovoked pain, which can be just inside the vagina. It's normally extremely painful around the entertance and just inside. I was prescribed trimocate cream which u can't really use inside but I was told I could use it just inside, and the time it was a little red a sore it didn't bring down the inflamation but didn't really help with the pain and I was a little concerned about using it as it a steroid cream. I would suggest you see a women's health Physio therapist, they seem to know more about this kind of thing than any gynochologist I have seen and I must have seen 3 by now, the other option is to research gynochologist in your area who have skills in vulvar pain.

Where are u based ?

Kt

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Re: My story so far!

Post  tinkerbelle2 on Mon Sep 30, 2013 10:08 am

Hi,  thank you so much for replying! Very Happy  I am in Brighton,  England (about 50 minutes from London).

I have also tried steroid creams like hydrocortisone cream and put a little inside but I didn't notice an improvement! :/

Ah thanks! I will research a local women's health physio! Have you found the pain more manageable since starting or is it still early days?
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Re: My story so far!

Post  tinkerbelle2 on Mon Feb 01, 2016 9:02 pm

bumping up my original post as still in pretty much the same position like 3 years on, and in case anyone else's in the same boat. Xxx
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Re: My story so far!

Post  meelie on Tue Feb 02, 2016 6:19 pm

Warm soaks in epsom salts (magnesium) help me when I have time to do it.

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Re: My story so far!

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