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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


Diagnosed on Friday

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Diagnosed on Friday

Post  Sesquipedaisy on Mon Sep 12, 2016 2:54 pm

Hi, everyone,

I'm twenty-five years old, like to have fun but am very mature for my age (I'm two years out from getting my Ph.D.), and previously was very proud to just have non-monogamous casual sex relationships--but I suspect that last part will change now.

It's been a difficult summer. My first gynecologist had me on topical and oral diflucan for a yeast infection I didn't have and the antibiotics ampicillin, doxycycline, and ciprofloxacin for other infections I didn't have.

On Friday I got a second opinion and before looking at me the doctor said my symptoms didn't sound like an infection, and after performing the Q-tip test he said he thinks I have vulvar vestibulitis. He printed out a bunch of research, most of the 2000s, for me to look over and also a pamphlet for a support group. I've started on Montelukast (aka, singulair), which acts as a mast cell inhibitor.

After doing my own research, the description that fits best is secondary provoked vestibulodynia presenting with moderate erythema, dyspareunia, frequent urination, urgent urination, and a feeling of incomplete emptying with urination. In other words, I have had pain-free penetration, but sometimes penetration or contact with my genitals sets off a pain episode that results in a burning feeling, redness, swelling, painful penetration, and urinary symptoms.

I realized after getting the diagnose that the symptoms I'd been experiencing this summer, which I thought were an infection, were similar to symptoms I experienced last year. In 2015, after having sex that was too rough with a partner who was too big for too long, I was in pain for months and no doctor could figure out why. It eventually just went away on its own. I didn't notice that my pain episode this time began immediately after sex (I'd had sex in May and then my symptoms became apparent in June), but it does very much feel like the same thing all over again.

I want to get more tests done to rule out or confirm a hormonal imbalance (my symptoms get worse just before and at the beginning of my period) and interstitial cystitis (IC) (because of the urinary component). I recognize that I could have these issues in addition to vestibulodynia, as women who have it also frequently have at least one other chronic condition (comorbidity).

Regarding the treatment options my doctor suggestions, it looks like recent research has not confirmed their efficacy, but he said that I will be in charge of my treatment and appreciates that I do my own research into my conditions. I'm definitely open to surgery, although he views that as a last resort.

So I just wanted to introduce myself. I'm sure I'll be on here a lot.

Sesquipedaisy

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Re: Diagnosed on Friday

Post  emalita on Mon Sep 12, 2016 5:27 pm

Hi Sesquipedaisy!

I'm so sorry to hear that you're having to go through this, and I hope with time you are able to find lasting relief Very Happy

emalita

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Re: Diagnosed on Friday

Post  Sesquipedaisy on Mon Sep 12, 2016 8:18 pm

emalita wrote:Hi Sesquipedaisy!

I'm so sorry to hear that you're having to go through this, and I hope with time you are able to find lasting relief Very Happy

That will be the goal of treatment, but I know that this may last forever.

I've found that different people have different approaches to dealing with a diagnosis like this. When I entered my twenties, my mom was diagnosed with a rare chronic, degenerative neuromuscular disease, of which there are two types: one that can be cured and one that can't be.

Her doctor told her that she had the kind that couldn't be cured, and I drove with her to Mayo Clinic to get a second opinion. For a lot of the drive up there she was talking about how her doctor might not know what he was talking about and she had been praying to God about it and she believed that the doctors at Mayo would give her better news.

And the whole time I wished she would stop, because, like I said, I'd rather assume the worst and be surprised than hope for the best and be disappointed.

Mayo did indeed confirm that her disease is incurable, and I won't be surprised if my condition isn't either. And accepting that is part of how I cope.

Sesquipedaisy

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Re: Diagnosed on Friday

Post  emalita on Mon Sep 12, 2016 11:18 pm

I agree that sometimes assuming the worst is better than wishing for the best, but just know that with vulvovaginal issues beyond simple yeast and BV, doctors know VERY little. Most I've found are quick to blame the pain on overactive nerves, which, in my opinion, seems to be the knee jerk response of specialists who don't know how to look any further.

I've seen over 10 doctors for my pain, and I've had varying responses. Some were convinced it was a tough infection, some blamed nerves, some blamed imbalanced flora, some blamed lack of estrogen, etc. It's all a guessing game at this point, and I believe that's because the cause of vulvodynia varies as much as each individual woman.

Anyway, what I'm trying to say is don't give up all hope of being rid of your pain. Don't rely on a doctor to diagnose or heal you. If I would have, I wouldn't be making the huge improvements that I am today (no matter how slowly Wink ).

emalita

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Re: Diagnosed on Friday

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