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Diagnosed recently, looking for advice

Sun Sep 02, 2018 12:51 am by Cloudberry

Hi everyone,

I'm so glad I found this forum! I was diagnosed with vulvodynia/vulvar vestibulitis (still not sure about the difference between all the different terms) a couple of months ago and I could do with some advice. This is probably going to be a lot of text because I just want to get everything off my chest, so please bear with me.

I’m a woman in my late 20s. Before getting diagnosed …

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Hurting, Burning, Itching, and Worn Out

Thu Aug 09, 2018 10:55 pm by donnambr

This vulvodynia that I'm currently suffering with is so cruel. I hurt, I burn, I itch. When I first got this several years ago, before the internet, I though I was the only one with this awful disorder. Doctors couldn't figure it out. I felt so alone and devastated. Somehow it disappeared for a few years and now I'm suffering again. This dreaded V misery is back and I feel like I will be with …

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Hi girls! New in this forum

Fri Jul 13, 2018 2:31 pm by Gaby

Hi everyone!

Also joining the V club, Here my story:

It all started last year in september with a very bad throat infection for which i had to take antibiotics for about a month. This cause several yeast infections (candidia albicans).... one after the other!. I had them every month from october 2017 till march 2018. During this period i use an incredible amount of anti-fungal creams and …

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Newbie and feeling helpless

Wed Jul 11, 2018 1:52 pm by Taylor1

Hi, I found out a few weeks ago that I have this condition, started off at the end of April as a uti took strong antibiotics then got a thrush infection and now this.. My doctor has tried me on amitriptyline and gabipentin and both made me so poorly I couldn't take it plus I have seen what long use of these drugs has done to my mom for pain and its not good. I am using coconut oil which does …

Comments: 3

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: 6

From a concerned husband

Thu Jul 12, 2018 10:45 pm by ConcernedYorkieHubby

Hello everyone,

This is probably a little unconventional, but I’m a man who is here because his wife has been diagnosed with vulvodynia. The poor girl has been suffering with vulva pain for around 10 years now, and I’ve been by her side through the pain and tears and doctors misunderstandings the whole way, and we’re both exhausted and terrified by the whole experience.

I’m sure a lot …

Comments: 3

I'M NEW - Do I listen to my gyno who I feel has it wrong?

Fri Mar 09, 2018 6:17 pm by Tunes25

Hello!

I am a 25 year old woman and wanted to share my story here as I feel frustrated by the suggestions of my gyno and am hoping for some advice.

To give the context for this: in September 2016 I moved in with my long term boyfriend after living abroad a year and (nearly) abstaining from sex. Within a few weeks I had got a yeast infection which I treated myself successfully, but then 2 weeks …

Comments: 10

Gabapentin Gel. or other topical creams

Thu May 10, 2018 9:43 am by Rosie21

Hi I have been suffering for some years with this abominable pain. I have tried most of the systemic drugs , I asked specialists and Doctors if I could at least try a topical treatment but because this requires a special prescription have been refused Has anybody had a chance of trying these? Thank you I will try to put a link on to some of the research into Gabapentin Gel. Thanks.

Comments: 1

What has been helping ME (much less pain over time!!)

Wed May 16, 2018 3:43 am by leoscc

Hello everyone! I vanished for quite some time as my life became consumed by not only this but other daily responsibilities as well. Shortly after my diagnosis, my boyfriend f 3 years left me as he did not want to deal with this. It left me broken for a while but also gave me time to figure out what the heck was going on. So, I will write out a quick list of my symptoms and what helped me.

1. I …

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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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