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New diagnosis, any advice whilst I wait for a specialist

Wed Oct 25, 2017 1:47 pm by Julesyjules

Hi,

I'm new here and wanted to ask for some advice whilst I wait to see a specialist nurse.

After urinary problems which lasted 7 weeks, I finally saw a urologist, who on examination discovered significant inflammation and called in a gynaecologist, who diagnosed vestibulitis. They referred me to a nurse who specialises in vulvar skin issues. That was 5 weeks ago, and I'm still waiting for the …

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Amitriptyline given for vulvodyina pain

Tue Oct 24, 2017 2:46 pm by katycrawford

Hi there,

After years of being misdiagnosed etc as most women have on this forum I have finally been diagnosed with vulvodynia (yay) and have been given the lowest dose of an antidepressant called Amitriptyline. Has anyone been on this before and has any positive (or negative) news to give me? Im feeling down already and I've only been taking it for a few days, I don't have much hope of it …

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Vulvodynia help

Tue Nov 14, 2017 4:27 pm by Katiej

Hi guys new here and newly diagnosed. So I had bv and then after alot of antibiotics and home remedies I still continued to have weird symptoms despite swabs being negative. Two seperate gynes have told me I have vulvodynia as a result of the area being overwhelmed. So first gave me lidocaine which xidnt do much. No I am on amitriptyline for the past 5 days. Seems to be kicking in a little (im a …

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New w/ Secondary Provoked Vestibuldynia

Wed Apr 26, 2017 11:46 pm by Birdy

Hi everyone,

I'm here because I'm pretty sure I have secondary provoked vestibuldynia, even though my gyno is still "optimistic" it is not.  My problem started six months ago when I got my second UTI in as many months (after going 25 years of life without one) and then ended up with a bad yeast infection (also my first one ever) thanks to the antibiotics.  Ever since the yeast …

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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: 9

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 …

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suffering for three years.

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suffering for three years.

Post  lisadoc on Wed Aug 03, 2011 8:55 am

hi i am a new member and so glad i found this website as it has given me hope, this is my story.
.
About three years ago i had thrush or so i thought, after using every threatment possible and going to the gum clinic and having all the tests done, everything was clear but i still had this burning stinging pain. I think my gp didn't know what to do with me so they referred me to a dermatoligist. they diagnosed possible ezcema as i have psoriasis elsewhere on body but no matter how many times i told them i felt the pain internally ( where i don't think u can get ezcema!!) they just prescribed one steriod cream after another, eventually i just stopped using them as they weren't helping anyway. anyway at this time i was so distressed as i had just go engaged and this was hardly a great start. I abstained from sex for a while but then felt so guilty about my partner i just carried on having sex even though most of the time it was so so painful. and to be honest i was pretty sore all the time even when there was no sex. one year later and we got married, the pain is still there and eventually i can't stand the pain anylonger. after sex sometimes i could hardly stand up and the pain would just lasts for up to three days. evenutually got seen by gyne only to be told there was nothing to see and would test me for thush, again i tried to tell them it was not thrush, ( swab clear!) but to no avail,. i came out of that app in tears and so frustrated, why would no one listen and why did no one seem to know anything about this. next thing i am pregnant thankfully, a great excuse for no sex, but during the pregancy the pain was so bad at times, i wondered how i would ever have this baby if i couldn't let anyone touch me, as it turned out i had to have section as my cervix wouldnt open, i often wonder if this was a physological thing to do with the pain?? now my baby is 4mths and i went private to see gyne( money talks in the uk!!!) i have been prescribed gabapentin, as yet i don't see great results but am currently upping the dose so here's hoping. if this doesn't work i don't know what else to do. i am still in pain most of the time, intercourse is still at times excruiciating and afterwards the same. this has taken over my life and worry so much like the rest of you about my relationship, my husband is great but he shouldn't have to live this this either. sometimes i just sit and cry and then i worry about my mental health, sometimes it's hard to stay strong, sorry if i have just rambled on, so good to write this all down as i don't really have anyone to talk to, i look forward to hearing from some of u
lisa

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Re: suffering for three years.

Post  Sarah001 on Wed Aug 03, 2011 7:40 pm

Hi and welcome. I don't know if it's possible for the pelvic floor to prevent the cervix dilating but if it is I'd definitely say go and get your pelvic floor tested for tightness. You need a womens health physio and a biofeedback machine for this so check they have the machine before you go as it's the only sure way to know what's going on. Please don't have painful sex either, your husband obviously loves you as he married you so it's not necessary to put yourself through hell just for penetrative sex, there are other ways to satisfy him. It also keeps the muscles tight if ou keep doing it when it hurts so take a break while you sort out what your cause is. Have you got any other health problems or musculoskeletal pain?
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Re: suffering for three years.

Post  lisadoc on Wed Aug 03, 2011 8:50 pm

hi no, no other complaints at all, perfectly healthly in every way thankfully, this just all started out of the blue

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Re: suffering for three years.

Post  Joolibee on Wed Aug 03, 2011 10:28 pm

Hi Lisa. Welcome to the forum. Many of us have stories similar to yours and we understand how frustrating and distressing it can be. I don't know how much research you have done, but there are several books worth looking at, e.g. When Sex Hurts, by Andrew Goldstein et al; Healing Pelvic Pain, by Amy Stein; The V Book (can't remember the author); Ending Female Pain, by Isa Hererra and The Vulvodynia Survival Guide, by Howard Glazer. They all give various suggestions re treatment and self help, particularly with regard to the pelvic floor muscles, which tend to tighten when we are in pain. I would not recommend having intercourse when it is so painful; it could make the pain worse and is likely to lead to psychological problems. Have you told your husband how much intercourse hurts you? I'm sure he would not want to be causing you pain. If you don't feel comfortable about sex without intercourse, it might be worth you seeing a sex therapist. Some of us have found that relaxation exercises such as yoga or meditation can help to manage the pain and negative emotions. With regard to medication, it can take quite a while to find out what works best. It isn't easy, but there is hope. Good luck.

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Re: suffering for three years.

Post  lisadoc on Thu Aug 04, 2011 8:36 am

hi
thanks for your reply. have ordered the, when sex hurts book to see if it helps in any way and thinking of going to a physio to see about my pelvic floor. so glad to have found this website. i had no idea so many people suffered from this as it's never talked about. my husband is great and he always says to stop if it hurts but it's usually me who says keep going as feel guilty if dont, but had a talk with him last night about all the advice i have found on here so we will lay off intercourse for a while, and no i don't mind other ways of keeping him happy, he maybe prefers that anyway lol. just hope i find some relief as really want to try for another baby next year, will be a bit hard if we can't have intercourse but i suppose time enough worrying about that then. thanks again
lisa

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Re: suffering for three years.

Post  Joolibee on Thu Aug 04, 2011 9:30 pm

So glad you spoke with your husband Lisa. I'm sure he appreciates your honesty. I made the mistake of continuing to have intercourse and didn't tell my partner properly, because I didn't want him to blame himself for my pain and I thought I could deal with it. It was a big mistake. In the end it became so painful that intercourse was impossible for quite a long time. This led to us both avoiding any contact that could be interpreted as a prelude to sex. Fortunately, we were able to talk about it and our relationship is as strong as ever. Just recently I have been able to have pain free intercourse a couple of times, but he is terrified of hurting me, so I have promised him that I will speak up immediately if I feel any pain at all. I hope you are able to find a way of managing this horrible condition and hopefully you will be able to have your second baby as planned. Smile Smile

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Re: suffering for three years.

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