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

Fri May 27, 2016 6:50 am by Lucci

Hello,

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

Clitoris Issues

Tue Apr 28, 2015 8:17 pm by January

I am going crazyyy trying to figure out what's wrong. Please does anyone else have an issue similar to mine? I'm only 22. So, basically when my clit is lightly rubbed, there is no feeling. However, when rubbed vigorously and directly, the burning and tingling sensations shoot down my legs and feet as if coming to the end of an orgasm but with no good feeling leading up. It's so strange. What …

Comments: 2

Cured of Vulvodynia

Wed Aug 17, 2016 1:39 am by angelique2016

I used to post on this forum a long time ago and told everyone of how I was cured of my vulvodynia by a (Melbourne Australia) female dermatologist, she put me on very low doses of Nortriptyline (Allergron) for pain management about 10mgs I believe it was, and she also had me use Advantan Fatty Ointment (not the cream) (although I saw the cream for sale on ebay from germany) so it might help, as …

Comments: 10

Vulvodynia and IVF? Anyone done this? What does it do to the vulvadynia?

Sun Jul 30, 2017 1:03 am by Carolyn4

Hi everyone,

I have had vulvodynia since age 27--I am now 43 and it has been in pretty good remission.  I control it with acupuncture and herbs, and some cranial sacral therapy.  I have a 5 year old, had a pretty uneventful pregnancy which ended in a c-section.  My VV worsened after that, and I have worked hard to get it back under control (it took over a year to get it back into pretty good …

Comments: 1

Partial Vestibulectomy

Mon Jul 31, 2017 6:44 pm by JGD13

Hi all i am new here.
I had a partial vestibulectomy 21/7 for my provoked vulvodynia.
After a painful few days and feeling quite uncomfortable it seemed to get better. 1 week after i noticed some white stuff and gloopy discharge, it wasnt smelly or itchy but i got a check up at the gp surgery and the doctor said the stitches looked fine and i could just have a touch of thrush. He said this is …

Comments: 6

Post Vestibulectomy

Thu Aug 03, 2017 6:15 pm by infinitelywondering

Heya,

I had my vestibulectomy (full) about a day and a half ago. I was very sick and poorly just after the op and experienced intense pain down there Sad

However, today I came home and have done the following things:

-washed with warm water
-applied manuka honey to the area
-ensured I wash at least 3 times a day and dab the area dry gently
-use frozen peas to stop the swelling

As of now I am …

Comments: 1

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: 3

Anyone from the PNW?

Sat Aug 05, 2017 7:54 am by jungleclover

I'm located near Portland and I would be really cool to actually meet someone with this issue. I think my roommate in college technically had this problem. She had an overgrown hymen removed and can't deal with penetration as a result. But she is gay so it seems like it hasn't been a huge problem for her (although we didn't talk about it much so there was possibly more to it than she let on). …

Comments: 0

Constant pain, I want to die.

Fri Jun 02, 2017 4:29 am by Meggiemay

I posted on here a few years ago but my symptoms went away with the inflammation. I didn't get so lucky this time.

For over three months, i've had terrible rawness, burning, soreness in the urethral/vestibule area and pressure/hypersensitivity in the clitoral area. I've also had some lower abdominal pressure and burning on my butt. I can barely walk! My gyno hasn't been much help. I'm on …

Comments: 22


Another Limey!

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Another Limey!

Post  *Cat* on Thu Sep 02, 2010 6:26 pm

Hi Guys...so glad to have found a forum like this cos boy am I suffering!! I'm Cat, 29 next week and I'm from Swindon, England. Ok so, I haven't had an official diagnosis of this condition but in my desperation and bafflement from GP's I'm kind of at the pont of guessing the problem. For the last two months, I've been going in the docs complaining of burning, stinging, rawness and irritation...dripping feeling - and it's pretty much constant. My story is this, it came out of NOWHERE! I've gone over so many things in my head of what it could be. It's not a STI because I'm not with anyone and haven't been just before this or during. I'm not allergic to anything (used the same products for years and don't use anything perfumed down there anyway). It's driving me insane and has led me to be in tears most days. I can only think that it's hormone related and somehow, I've managed to upset the balence of the flora and fauna down there. I felt low as in depressed before this started and this has just made me feel a whole lot worse.

I've had a swab and urine samples taken (both clear! Rolling Eyes ) Initially I thought I had cystitus or thrush...but the treatments didn't work. Been on anti-biotics....nowt! Caneston cream.....rubbish and makes burning worse. Went to doc again yesterday...he had a look (Lovely...pass the bag for my head) Was sore in some points but looked at me and said 'Even though the swabs are clear I'm going to treat you for thrush again because thats what it looks like'. So got a pessary thing to try and he's shoved me on anti-depressants. I can bet you a tenner right now, I'll be back in two weeks. I was dying to say....WHATS VULVODYNIA, but why should I? He's the bloody doctor and it's a crime that this isn't more well known.

I can just about put a pair of baggyish jeans on.....but it looks like I can wave the skinnys goodbye.

What a biatch!!

*Cat*

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Re: Another Limey!

Post  Sebby (Admin) on Thu Sep 02, 2010 9:09 pm


Hi Cat..Welcome to the forum!

Firstly I would say you need to be careful about the overuse of thrush creams as they have been linked to making vulvodynia worse as well as long term use of antibiotics. If I do get thrush I take the oral pil.

I pretty much had to diagnose myself and just had that confirmed by the gynea..u will be suprised to learn how many drs have not even heard of Vulvodynia!

At the moment I am using Co-codermol 15mg x 2 tablets when the pain is bad as I am currently wating for a nerve block injection.

Ask to be refered to a Vulva clinic, not just a gynea...you want a consultant who has treated Vulva pain before. Most GPs know little to nothing about this condition.

The girls on here give great advice! They told me to also get refered to a Pain clinic and I did..there I met the first dr who not only knew what Vulvodynia was but had also treated women with the condition!

As for clothes, myself and most of us live in leggings! I thank God they are in fashion! I wont wear jeans at all!

I have also been advised too see a women's physical therapist as there are treatments regarding bio-feedback and pelvic floor exercises that are suppossed to help.

There are a lot of avenues to go down but keep fighting and keep in touch

Godbless

Sebby (Admin)
xxx

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Re: Another Limey!

Post  jules on Fri Sep 03, 2010 5:29 am

Hi Cat,

Welcome and sorry reading our stories make you sad. That's how i felt when i first surfed the web to research Vulvodynia. I'm with Sebby. I would not use any more creams. I have read studies that show creams can actually make the nerves more sensitive. What you all call Thrush, we call a Yeast infection in the U.S. I was treated for over two months for a yeast infection and i didn't ever have a positive pap smear for yeast. My doctors just didn't know what else to treat me for. When i used at least 9 different creams over a period of time, my symptoms got way worse. I would agree to only use oral medication if you do, in fact, truly have thrush (yeast infection). I had a doc who had been a doc for nearly 30 years. He treated me several months for something i didn't even have. You are going to want to rule out any skin condition. That can be done by having a biopsy of your skin taken and/or by seeing a dermatologist of the Vulva area. Your UK friends can help you navigate the UK system. I am usually lost when i read their stories..ha ha..not really. You should get to a vulvar specialist. also, note: gynocologist do not know how to treat women for pain. a pain clinic or family doctor can do a better job. you want a pain pill w/ opiates...if you plan to take some. i have had much success w/ the medication Neurontin and Lyrica. some of the gals there are on Amitriptyline. we all have different results with different meds. Dont' give up hope. there is a lot you can do. Some of us are doing physically therapy, nerve blocks, botox etc. you have a lot of options. But, you do need to rule out other things as well. keep in touch. you are all sounds asleep and i am getting ready to go to bed in the U.S. Good night! and Good morning to you!

jules

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Re: Another Limey!

Post  Sarah001 on Fri Sep 03, 2010 12:38 pm

Hi Cat and welcome. I'm with Julie and Sebby I'd avoid thrush creams if you can, I found they made my skin much worse. You sound alot like me thinking it might be a UTI or thrush but turning out to be neither, that's exactly how mine started and antibiotics took away a little bit of the UTI type pain but nothing else. It often starts out of nowhere.

The reason GPs don't often use the term vulvodynia is because it's not really a diagnosis as such, the word just means "pain in the vulva". If you're not happy with your GP pop along to your GU clinic and get them to examine you, they will swab for everything and probably send you away with a tube of hydrocortisone cream as a first course of action and if that doesn't work they can refer you to a dermatologist so you don't need to keep wasting time going to the GP who will keep treating for thrush when that isn't the problem (mine did that too). If you want to try hydrocortisone before you go to the GU clinic just buy some from the chemist then you can save time by having already used it. It should work in a week if it's going to.

The GU clinic can also prescribe you pain relief and if that works they can write to your doctor (with your permission) to get those medications put on repeat prescription.

If you want to try pelvic floor retraining (there's a huge link between a high resting tone of the pelvic floor and vulvar pain) it's better to ring some Women's Health Physios privately, there aren't many on the NHS so you'd wait months to see one that way and as you only need to go in once a month it isn't hugely expensive to pay for it yourself (about £35 a month). You need one that uses a biofeedback machine so they can test what your pelvic floor is doing and teach you how to get it working correctly.

If you have sore skin oestrogen treatments have worked for some women so that's another option to help the skin along but definitely do something, you're very new to the problem and the earlier it's treated the better the outcome so draw up a plan of action so you keep trying things.
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Re: Another Limey!

Post  Mouse on Thu Sep 09, 2010 12:59 am

Hi Cat,

I'm also new and have only been on this adventure since I had surgery down there in February.

The gynaecologist who preformed my surgery had no clue what I had or what to do about it! She treated like I was a freak and left me hanging for months while I got more despondent and depressed.

Then I got mad...!!! Have you heard of the saying "And that's when the fight started". I researched and found out what I thought I had and got busy trying to find answers. Anyhoo very long story short I found a specialist in vulval pain in another city, flew there for a day (on my own ahhhh had to wear my big girl pants that day) and was diagnosed immediately. I think I love her, if it was appropriate I would have hugged her... but that would have created another awkward problem Laughing She told me most people she sees have been told they are mad at some point.

So my lovely, as other people have said find a vulval pain specialist. There should be a clinic at any major hospital. They do this thing all the time so don't be embarrassed either. Find a pain clinic also. I have a therapist who helps me make sense of this shizzer and that's really helpful as well. xx. late for work now!

Mouse

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Re: Another Limey!

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