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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, …

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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 …

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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


Vulva Specialist Given Up!

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Vulva Specialist Given Up!

Post  Sarah001 on Mon Dec 12, 2011 6:26 pm

As some of you know I've been seeing a Vulval Specialist who is also a Vulval Dermatologist and I've been back today for an update, my medications aren't working well despite being on nearly the full dose of Lyrica and 50 mg of Ami and she's admitted she doesn't think she can help me anymore. Apparently if meds are going to help they normally do so at much lower doses than I'm on and if they don't help she refers people elsewhere. Because I have a joint condition that affects pelvic stability she has decided to send me on to a gynae who has a team of vulval specialist physios working with him. Unfortunately it means I have to travel alot further which will require me to get a lift from someone (don't know who I can talk into that!) and I still have my appointment next week with a WH physio who is a bit closer to home so I'm feeling good in one sense that I'm going to get more help but terrified at the same time that I'm going to prove beyond anyone's scope because of my other problems. I told her I didn't think meds would help me but wanted to give them a try and she basically said she'd never seen a case as severe as mine that was also so resistant to medication which is scary. Fingers crossed someone out there can help me and I'll update when I get my appointment. Feeling a bit scared right now! pale
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Re: Vulva Specialist Given Up!

Post  skippypie23 on Mon Dec 12, 2011 8:03 pm

I'm so sorry Sarah Sad I've had so many doctors just misdiagnose me or say they don't know what I could have and give up, so it's at least a positive thing that you have been able to find some actual specialists.

I was thinking that perhaps medicine may not be the way to go for your body, and that you should look into some possible natural cures along with physiotherapy? I am currently looking into the raw food diet (a little harsh i know) and the yeast diet. It may have to do with your body's acid levels or your reactions to different foods. I'm actually going to try getting a food allergy test to see if I am allergic to yeast or anything else. I don't know if you have already considered these things.

Please don't give up; we shouldn't have to live like this or put up with it at all Razz


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Re: Vulva Specialist Given Up!

Post  lolainslacks on Tue Dec 13, 2011 12:02 am

I'm so sorry Sarah, that must have been such a blow to hear. Do not give up though. Just because this one person doesn't know how else to help you, doesn't mean there isn't anyone who can. I know this may not be a helpful suggestion, but have you tried acupuncture? I haven't yet ztried it but at my last gyn appointment she suggested it as an option. She told me that apparently there are many women who have been completely cured by acupuncture. I know it seems like an impossibility, but it's worth looking into I think. Wishing you all the best.

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diet

Post  Melissa777 on Tue Dec 13, 2011 2:59 am

you know- i think diet elimination is KEY
I tried the yeast diet for a year- did nothing for me

so im starting to think- this isnt yeast related, its pH related. I think the raw food diet makes sense... but its hard- start out slow and do it in baby steps

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Re: Vulva Specialist Given Up!

Post  Sarah001 on Tue Dec 13, 2011 12:26 pm

I came out of the appointment thinking at least I'm being referred on but on the way home started to worry about what if the next person can't help me either? Pain meds were supposed to be a last resort for me that I got talked into trying earlier because of the amount of pain I'm in so it's like I've had the rug pulled out from under me. Some of you members who've been here a while will already know about my other complications and diet isn't going to give me new ligaments so diet just isn't the answer for someone like me, I've already done the low ox diet with no help and the anti inflammation diet too which works on the principle of removing acid from the body and that didn't help either. Mine's definitely musculoskeletal and revolves around the pelvic problems I've had for many years and obviously an unstable pelvis along with a pelvic floor hanging on for dear life is going to be difficult if not impossible to rectify because treatment for one makes the other worse. I'm literally pinning all my hopes on the new physio I'm seeing next week (snow permitting) which means if she sends me on my way I'm going to be devastated. I'm sure my resting tone is up again because I've had the worst year of my life and so much stress I'm surprised I'm still ploughing on every day. It's a very worrying time and I can feel depression lurking over me.
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Re: Vulva Specialist Given Up!

Post  naomi on Tue Dec 13, 2011 5:47 pm

sod that sarah! theres no way we can give up now...we've come too far!!

I know its a blow when they pass you on to a new specialist. I think after my 10th I was thinking "shite!" but if I dont keep plodding onto the next then theres just no point in fight it and trying to get better.

have u spoken to alana (not sure what alanas nickname is on here, or if she is still on here re: ketamine. she uses this orally (i think) and has given her so many more days of less pain. She said its not the answer but is helping so much with pain relief.

hope ur ok chick! xxxxxx

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Re: Vulva Specialist Given Up!

Post  Sarah001 on Fri Dec 16, 2011 5:47 pm

I'm crossing everything the new physio I see next week will be good, she's had some rave reviews from various people I know but none of them had V so we'll see. Nervous...
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