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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: 7

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

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


Returning Member

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Returning Member

Post  Coop on Sun Aug 28, 2016 10:46 am

Hi all,

I joined this forum a few years ago but left after I found myself getting a little too caught up. I think a lot of us can fall into the trap of seeing others find a cure & then getting hopeful that their cure will be ours but I think I started trying too many things all at the same time. Anyway I have decided to come back , as I think it will help me to talk about how it's making me feel.

I have had vulvodynia for 7 yews now. It has been a long, frustrating journey. There are a few triggers that I think may have started this. I think this started in a very typical fashion, I had a very strongly scented bath one night, and think it caused me to develop thrush. The I visited the dr to get some thrush treatments, they didn't help, I visited the dr again, and have to say I think she was a bit abusive. She was running late, and I was going to be late for work, so I acted a bit annoyed when she called me in: I told her off, so when she did a spectrum exam, she was a bit rough. Now you'll all know that when you have a spetrum exam, the dr is usually quite delicate, but this dr inserted the spectrum, opened it until I gasped, then opened it further. She then proceeded to twist it really agressively, until it brought tears to my eyes. I told her in a pained voice how painful it was, but she continued to twist. It was a horrible experience. Part of me has always wondered if that was the clincher that made me develop full blown vulvodynia...

It took me around a year to be seen by a specialist, she diagnosed vulvodynia and put me on amitriptyline, local anaesthetic, and change to toiletries. I saw her around 3 times before moving for work. When I moved, the new area I lived in didn't have a vulval clinic, so the dr passed me from pillar to post. I sawa gynaecologist, who didn't believe in Vulvodynia. She tried estrogen, thrush treatment. She did a biopsy and diagnosed 'contact allergic dermatitis'. I then asked to see a dermatologist to find out what I was allergic to. The dermatologist scoffed 'a biopsy can say dermatitis, it can't say it's an allergic reaction', but we ran an allergy test and tried steroid creams, but he said the pain I feel could not be dermatitis pain, so he referred me on to a leading specialist in london. She was fab - after 3 years of being passed about, sheconfirmed the original diagnosis, although said it was vestibulodynia. She gave an action plan, putting me back on steroid creams, local anaesthetic, amitripyline, and basically reassured me that we'd find something that could work.

She suggested I see a pain clinic, and that's where I am now. The pain clinic is trying me on some other anti-trycyclic anti-depressants, and also wants me to see a psychiatrist. The theory is that it can help to talk about our pain.

The pain clinic feels the pain might be linked to abuse I suffered as a child - when I was , a girl in our street (around 4-5y.o.) was sexually abusing other kids on the street. My sister came forward about it, and I was there when she met with the social services. When she was telling them about the stuff this girl did to her, I realised she had been doing the same stuff to me, but I hadn't realised it was bad. I don't remember anything she did now, I was too young at the time, but I do remember it happened. The thing is, I know I also made up some of the stuff she did, it was merely saying that some if the worse stuff she had done to my sister, she had also done to me. The best way to describe it is that she was grooming us, and she was just further along the path with my sister.

My parents took us on holiday, and when we came back, this girls parents had told the whole neighbourhood that my sister and I were the abusers, and suddenly we were ostracised. Not long after though, other kids in the street came forward to say this girl had abused them too, but my sister and I still found kids were wondering why 5 minutes earlier, my sister and I were so bad, and those friendships never quite recovered.

I don't think this is the cause, like I say, I don't remember it, but the specialist does want to investigate it with a psychiatrist.

The thing that I find hard is that I'm now at an age where I want to think about kids and marriage, but I can't until I'm better. I can't manage sex at all.... I've been with my OH for 8 years, and we are getting lots of questions about when to expect wedding bells and hints that 'my clock is ticking' (I'm 27!). It just makes me feel awkward having to evade these questions... I'm half tempted to say I can't have kids because of a medical condition, and we're waiting until I'm better before deciding whether yo wed (so I don't tie my OH to a childless future).

Coop

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Re: Returning Member

Post  Coop on Sun Aug 28, 2016 11:00 am

Sorry that did end up being a bit long... I thought it would be good to go into full detail, as my theory is that if it's emotional causes, and I put them out there, it might start my brain healing process...

I should have said my symptoms haven't improved, but I hope that might change!

Coop

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