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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 …

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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


Lost and depressed

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Lost and depressed

Post  Elc88 on Sat Jul 20, 2013 1:24 pm

I have completely reached the end of my tether with this...

Four years ago, I was given a bath bomb. I had a really lovely bath, which turned bright blue with all the dye in the bath bomb. The next day, my bf and I were n bed, and it was like being with a cheese grater. Of course, I thought it was thrush, I tried the creams, they didn't work, went to the Dr, they gave me more creams and pills, went back to the Dr was given more thrush treatment... 6 months later they spiced things up with eumovate (steroid) cream, then they went back to the thrush treatments. After a year, I was referred to the vulva clinic, after 15 months, I finally saw a specialist an was diagnosed with vulvodynia. The Dr told me that on average it lasts 18 months, an I though 'great, only 3 more months of this hell'.

My first appt with the vulva clinic, I left with emulsifying ointment, anti-depressants, anaesthetic, instructions to cut out just about everything, and a whole lot of leaflets, and I was pretty happy that it would be over soon. I was referred to a physiotherapist to teach me pelvic floor exercises, an given cones to help stretch my muscles. Nothing helped.

I saw that specialist for 2 years before I moved to a new city 300 miles away and was referred to a new gynaecologist. This came with a whole new set of tests. I was told I had thrush again, I had swabs taken, and I was told that I had a collection of lumps around the vestibule which she thought were warts. Of course, I'm sure most of you have jumped on any new possibility that it might not actually be vulvodynia - I went to the sexual health clinic for tests, knowing that if I tested positive for anything, it would mean my boyfriend had cheated on me, but at least I'd be clear of this hell. It wasn't warts. It also wasn't thrush.

Six months ago, I thought perhaps it was a hormone defficiency, so I started to take herbal supplements for menopause (I'm 24), and waited until I went back to the gynaecologist. The gynaecologist decided to try me on estrogen supplements, which were horrible - I took them for a month and nothing helped, but coming off it again, I started to feel really depressed and tearful.

Five months ago, I decided it was an allergy to sulfates, and cut out everything that contained even a hint of them.

About 4 months ago I returned to the gynaecologist, and she said we had two options -steroid cream and come back in 3 months for a biopsy if that didn't work, or just go for the biopsy. I decided I had had enough and opted for the biopsy. I hadn't realised it would be a deep tissue biopsy, so I had only arranged to leave work for an hour, and had to go back afterwards (ouch!) but I didn't mind because it was finally going to give me some answers! Three months ago, I got the answer - contact allergic dermatitis!

I was so pleased I had an answer - there it was, finally, in black and white, it's not vulvodynia! There's a cure! I was so relieved, but I was trying so hard not to get my hopes up. I applied the cream every day for 2 weeks, then stopped for a week, applied it again for another 10 days before I got concerned it was causing everything else to feel swollen. I switched to a non-steroidal herbal equivallent, used that for 3 weeks, but that hasn't worked either.

I stopped using it 2 weeks ago now, and just feel really helpless. I finally had an answer and a way forward, but now it's back to this in-explainable pain, and I have no idea where to go next. The only light on my horizon is an allergy test next month, but I've stopped using everything I can possibly think of, and I'm just back in this horrible situation again.

I'm still with my boyfriend, and we've been together for nearly 4.5 years, but we haven't been together for 4 years now. I'm 25 in 6 weeks, and I'm starting to reach the age where I'm thinking about the possibility of getting married, having kids down the line, but I just don't know how I'm supposed to be able to do that! I can't get married because I can't consummate it, and I definitely can't have kids. Although I love my boyfriend, this is not fair for him - he's young, and should be able to enjoy his life, and I can't escape that horrible feeling like I'm just holding him back, and he's only here out of obligation. I can't speak to anyone about it, because it's impossible. I told my closest friends about this problem 2 years ago, but they haven't mentioned it since, and I think they have assumed it's all better now, because why wouldn't it be.

My current job has me 300 miles away from home, and I've been so lonely, that when I came off estrogen, it threw me into depression. I started to get out from under my cloud, but the failure of this latest cure just has me spiraling back down to my lowest ebb, and I have no one to help support me through it - even my boyfriend is 300 miles away. All I want to do is cry, I haven't got a clue how to go forward, and I'm just drowning in it all.

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Re: Lost and depressed

Post  Sarah001 on Sat Jul 20, 2013 5:24 pm

If it is contact dermatitis have you tried any anti-histamines? I would have thought if it was allergy based that would be the place to start if you haven't already, I'm not sure which one would be the best for it as they all work better for different problems but it might be worth a try? There are also anti-histamine creams but I think I'd start with tablets. Also I think I would look up all the ingredients in a bath bomb if that started it and see where else these things could be, it might lead nowhere but it's something I would do just in case. When I went to a GU clinic to get checked out the dotor there was telling me about a lady who had contact dermatitis behind her V and they just couldn't figure out why because she'd stopped using soaps etc and finally it emerged her husband was reading a newspaper before going to bed then he'd touch her and she was allergic to the newspaper print so it could be any number of things causing your symptoms. If you haven't tried anti-histamines though I would at least give that a shot.
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Re: Lost and depressed

Post  Elc88 on Sat Jul 20, 2013 6:52 pm

Sarah, thanks for the suggestion, that is an unusual but good idea. It's definitely not newspaper ink, but over 4 years, I can't think of anything I haven't stopped using for at least a little while... I wondered if there was a chance it's something I'm eating as well. But also can't help but shake that feeling that, while the biopsy found a problem, maybe there is more than one.


I meant to say in my post -I'm sorry for the incredible length, I'm so frustrated it kind of ran away with me! My one bit of advice for others would be to ask their gynaecologist whether they think a biopsy is something they will be offered eventually. Despite the pain and intrusiveness, I wish I had had mine 3 years ago - it would have saved me so much time, money, energy and tears chasing false possibilities.

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Re: Lost and depressed

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