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Anyone have pain with urination?

Tue Oct 16, 2018 2:35 pm by mertzwl

Hi everyone - I can't believe I've been dealing with this for almost 10 years and an appointment scheduler at a urogyn office is the one to suggest I look into vulvodynia. Honestly, I don't care, I just thankful I might have an answer.

I have pain in one specific spot right around the urethral opening so it always coincides with urinating (it's not a uti). Does anyone else deal with pain …

Comments: 6

Diagnosed recently, looking for advice

Sun Sep 02, 2018 12:51 am by Cloudberry

Hi everyone,

I'm so glad I found this forum! I was diagnosed with vulvodynia/vulvar vestibulitis (still not sure about the difference between all the different terms) a couple of months ago and I could do with some advice. This is probably going to be a lot of text because I just want to get everything off my chest, so please bear with me.

I’m a woman in my late 20s. Before getting diagnosed …

Comments: 4

From a concerned husband

Thu Jul 12, 2018 10:45 pm by ConcernedYorkieHubby

Hello everyone,

This is probably a little unconventional, but I’m a man who is here because his wife has been diagnosed with vulvodynia. The poor girl has been suffering with vulva pain for around 10 years now, and I’ve been by her side through the pain and tears and doctors misunderstandings the whole way, and we’re both exhausted and terrified by the whole experience.

I’m sure a lot …

Comments: 4

Had this for 5 years, looking for people who understand

Sat Oct 06, 2018 9:46 pm by blackberrie

Hey all. I'm really struggling to find anyone in real life who can really understand what I'm going through. I've had vestibulodynia for 5 years now and I'm single. Obviously it has completely affected how I approach dating and sex and the fact that I can't really talk to people irl about it has made me feel very lonely. I've found that a lot of the women who have this problem are married and …

Comments: 2

6 year sufferer but I’ve found some hope

Wed Oct 10, 2018 1:33 am by Npage14

Hey, ladies! I’m new to this support group, I’ve thought about doing something like this for a while so I wanted to try this out! I’ve had vulvodynia for 6 years now, I am self diagnosed. I’m 20 now and the pain started when I had my first encounter with sexual contact when I was 14(I still remained a virgin though it was fingering). For a couple years the pain was so bad I could hardly …

Comments: 0

Hurting, Burning, Itching, and Worn Out

Thu Aug 09, 2018 10:55 pm by donnambr

This vulvodynia that I'm currently suffering with is so cruel. I hurt, I burn, I itch. When I first got this several years ago, before the internet, I though I was the only one with this awful disorder. Doctors couldn't figure it out. I felt so alone and devastated. Somehow it disappeared for a few years and now I'm suffering again. This dreaded V misery is back and I feel like I will be with …

Comments: 5

Hi girls! New in this forum

Fri Jul 13, 2018 2:31 pm by Gaby

Hi everyone!

Also joining the V club, Here my story:

It all started last year in september with a very bad throat infection for which i had to take antibiotics for about a month. This cause several yeast infections (candidia albicans).... one after the other!. I had them every month from october 2017 till march 2018. During this period i use an incredible amount of anti-fungal creams and …

Comments: 1

Newbie and feeling helpless

Wed Jul 11, 2018 1:52 pm by Taylor1

Hi, I found out a few weeks ago that I have this condition, started off at the end of April as a uti took strong antibiotics then got a thrush infection and now this.. My doctor has tried me on amitriptyline and gabipentin and both made me so poorly I couldn't take it plus I have seen what long use of these drugs has done to my mom for pain and its not good. I am using coconut oil which does …

Comments: 3

I'm new to this forum and would love some advice! :)

Tue Jun 05, 2018 4:13 am by anikita

Hi lovely gals!

I'm honestly hoping to get any bit of advice anyone might have to offer. I go from bouts of sobbing hysterically in my boyfriend's arms to feeling confident that I can beat this.

I haven't been actually diagnosed with vulvodynia but EVERYTHING under the sun has come back negative. I started having sex 4 years ago after starting Lo Loestrin, with my first and current boyfriend …

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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