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» What helped (and practically cured) my Vulvodynia
Today at 4:43 pm by Katiej

» How I cured my Vulvodynia!
Today at 8:24 am by Katiej

» Amitriptyline given for vulvodyina pain
Sat Nov 18, 2017 11:33 pm by WVR00

» Needing some reassurance
Sat Nov 18, 2017 12:28 pm by Katiej

» Amitriptyline Success and new-found love
Sat Nov 18, 2017 12:24 pm by Katiej

» New diagnosis, any advice whilst I wait for a specialist
Sat Nov 18, 2017 3:57 am by jungleclover

» Vestibulectomy today and no pain
Fri Nov 17, 2017 3:28 pm by Dsrt16

» vestibulectomy success
Thu Nov 16, 2017 12:41 am by Hopeitworks

» MY STORY & Vestibulectomy 2/8/17
Thu Nov 16, 2017 12:06 am by Jgreen81

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 …

Comments: 3

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 …

Comments: 1

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 …

Comments: 3

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 …

Comments: 4

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 …

Comments: 0

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


so happy to find you guys!!

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so happy to find you guys!!

Post  Nic on Tue Apr 10, 2012 6:37 pm

just wanted to say hey to everyone, cannot explain how happy I am to find this forum. I'm 25 and have had provoked vulvodynia for over 6 years now. The pain began when I became ill and was treated for months with antibiotics for glandular fever. I was first treated for severe thrush but when this went away and the pain remained, I was sent to the GUM clinic several times , everytime being told I was fine. After about 2 years I decided to go private and saw a bupa gp who told me I had a chronic fungal infection and advised me to change my diet. because of this I saw a nutritionist who put me on the anti-candida diet, this helped a little but still sufferring I decided to go back to my gp. I was then referred to a counsellor who after a few sessions was the one who recognised my symptoms and referred me to my local gyno David Nunns who diagnosed me with provoked vulvadynia. Since then I feel like I have tried everything - all the creams anti - depressents, lidocaine, dilators, I saw the physio but on the session i said that I felt it was helping slightly ( to me this was from pain that was making me cry my eyes out to pain i didnt cry as much!) I was told that was all she could do and I was being discharged. The only thing I feel that has helped me the most was acupunture but I just cant afford to carry this on at the moment. When I was referred to my gyno I was so pleased someone believed that I was having pain and that there was even a name for it, after researching I found that he was also involved in a lot research. However (might just be my experience) but I have not been to the hospital for over a year now as I feel like I'm not really listened to and have been asked several times if theres anything Iv seen on the internet (is it not his job to tell me whats available?!)
I feel so up and down with vulvadynia its ridiculous, iv accepted that iv got this condition and have been in a relationship for 7 years with the most supportive boyfriend i could ask for but at the moment I feel like I'm starting on the down again. Everything else in my life is the best its ever been at the moment apart from my vulvadynia which seems to be at its worst. I have a new job as an air hostess and I'm not sure if its that my body is under a lot of stress and tiredness that this is effecting it but I'm worried that me and my boyfriend are going back to not being physical at all because I know its going to be so painful again. I just dont know what to do anymore, I'm so sick of trawling the internet looking for something to take this away. I'm so sorry this has turned out to be quite a long post, got a abit carried away with typing to people that understand, can feel so alone sometimes! but anyways, hi everyone, its not great that we've all got this crappy thing but its fab to have finally found you all!! xxx

Nic

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Re: so happy to find you guys!!

Post  Sarah001 on Tue Apr 10, 2012 7:23 pm

Hi Nic and welcome. I'm really glad you posted that about David Nunns, I was supposed to be referred to him but it went to pain management instead and I've been mulling over whether to push for an appointment but conversations with my physio about what can he offer me that I can't get closer to home and your post have decided it for me and I'm not travelling hours to see someone who doesn't have anything different on offer, I too thought he'd be good because he's involved in research but seems he's maybe just a bit more interested but not better informed. Anyway, I was wondering if you had alot of physio or if you were given the 6 sessions then out that alot of hospitals have now? It seems a very odd point to stop physio if it started to help a bit! Did the physio look at your posture, gait, alignment as well as focus on your pelvic floor? I'm very interested in the physio side of things as that's what I'm currently pursuing but I have a couple of other complicating conditions that are making it very difficult and long winded! Have a good browse and again welcome.
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Re: so happy to find you guys!!

Post  naomi on Tue Apr 10, 2012 9:23 pm

Hello Nic and welcome to the forum!

Ur condition sounds v similar to mine. Provoked vestibulodynia/vulvodynia, all started from yeast infections, anti's.

I've been round the block regards specialists, I think David nunns was my 8th or 9th. He was useless, I saw him twice and I knew that using vibrators to stretch my vagina wasn't the way forward...tried telling him its pure agony, the skin cracks and bleeds. I gave up on him!

Was meant to have vestibulectomy tomorrow but had it cancelled today as I realised (after more painful prodding) that the sore areas were more than he was going to remove with a partial vestibulectomy. Also a part of me still thinks the doctor crandall yeast theory still gives a good fight for the reason I am where I am!

Glad u found us! I think I would have gone loopy by now without the forum and our Facebook group!
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Re: so happy to find you guys!!

Post  Sebby (Admin) on Fri Apr 20, 2012 8:02 am

Welcome to the forum, I hope you find the support and advice you need here. You said that accupuncture helped. Is there no way you can get this on the nhs? Might be worth digging around to find out if there is a legal loophole where they have to fund it if its the only thing that's helping?

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hello

Post  chanel825 on Wed Apr 25, 2012 7:50 am

Sorry you are suffering but please know you are not alone. My vulvodynia was so bad I could not have intercourse and with the nerve block Marcaine helped me alot. I dont know if you would like to ask your doctor about that. What I still have in no pain with intercourse but a lot of discharge and burning that has not gone away. It is very gross and very uncomfortable. God is great hope u get better

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Re: so happy to find you guys!!

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