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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


UK based vestibulitis sufferer

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UK based vestibulitis sufferer

Post  MysteryMe on Sat Aug 13, 2011 12:31 am

I am 26. I was diagnosed with vestibulitis yesterday; until then I had never heard of it. Once it was explained to me it made perfect sense, though until that point I merely thought I had vaginismus. Now I understand that I suffer from both conditions, though obviously I am in the very early stages of diagnosis and I don't really know what will happen next so I am trying to find as much information and support as I can.

To give you a few details I have had this condition all my life, it only affects me when someone or something tries to penetrate me - when that happens I experience searing pain. I have had some sexual contact though sexual relations have always been painful and often distressing.

Psychologically I think I have blocked a lot out and it is going to take an awful lot to come to terms with this - especially as I don't feel I can talk to family or friends. I guess this is a common theme? My doctor has told me that I will receive psychosexual counselling which I am pleased about, though I know from my experiences with "regular counselling" that I am a tough nut to crack and once an idea is entrenched in my head it will be hard to shift it. On that basis I am considering hypnosis. Have any of you had experience of this?

I feel like a complete idiot as I know virtually nothing about a condition that has plagued my adult relationships. I am just so thankful that I have the NHS, for one thing, and that I have found a place where others have had similar experiences.

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Re: UK based vestibulitis sufferer

Post  Sebby (Admin) on Mon Aug 15, 2011 12:27 pm

Hi and welcome to the forum

I too have had vaginismus & vulvodynia for as long as I can remember.

It has always effected my sex life and the ability to be examined and use tampons. The pain got more constant for me a few years back (dont panic this does not mean this will happen to you) and this was when I sought treatment. I just thought that prior to this I was just anxious.

I am now doing pelvic floor biofeedback when I can (its been a bit difficult lately) and am on Pregabalin 400mg

Things are up and down but I am getting periods of less and low pain so am thankful for that. I am also able to have a sex life again which is something I thought I couldnt do over the last few years.

Keep strong and read up as much as you can about the condition. This will help you decide which course of treatments you would like to explore and what you think could be a cause of your condition

As you have had vaginismus and pain on penetration for most of your life then I would suggest looking into the Pelvic Floor theory, I got my info from Dr Glazer's site www.vulvodynia.com - you can also ask to be refered to a womens physio or look for one yourself (make sure they have worked with this condition before if you can) Do not dismiss other theories though as a holistic approach is beneficial

Also you are not an idiot, I had no idea what was going on for years and this is what happens to many women. Many of us found that GP's knew nothing about it and many had not even heard of vulvodynia! There is not enough education and awareness even within the medical community. Lets hope this changes soon!!

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Re: UK based vestibulitis sufferer

Post  Aussie on Tue Aug 16, 2011 1:34 am

I have had hypnosis for depression. Cured it Smile

I also went back when V started, did not help with pain but stopped the anxiety associated with it.

As sebby said, biofeedback! for sexual pain it is the best thing ever. I have 24/7 pain and also sex pain but with biofeedback and physio the sex pain is way way better. I can even orgasm now! The problem is wanting sex, when I am in pain there so start with.

Hope this helps

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Re: UK based vestibulitis sufferer

Post  MysteryMe on Tue Aug 16, 2011 7:33 pm

Thanks to both of you for the replies - it is so good to speak to someone who understands...I cannot even think about talking to a friend about it.

I have heard lots of people talk about biofeedback but I don't really know what it is. I'll do some research, thank you. My doctor told me "You can get help with this and we can make things better for you", which sounded amazing at the time. By reading your posts I am getting a much more realistic view of what to expect.

My sexual desire has never been a problem, which in a way makes my failure in sexual relationships even more frustrating. My boyfriend has been amazingly patient but I think really he has written off ever having amazing sex, or even satisfying sex, with me which is really upsetting and is at the root of a lot of unhappiness that I can't even begin to go into with him. I would love to change so that sex can be a major and successful part of our relationship. I'm terrified of losing him. Hearing that you can now orgasm has made me realise that I won't necessarily not do so myself. Thank you.

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Re: UK based vestibulitis sufferer

Post  Aussie on Wed Aug 17, 2011 12:00 am

Yeah if my daily pain level is low (ie 2/10) I can usually get past it and get in the mood, If my clit isn't sore that day than thats how I orgasm. If I orgasm prior to sex it loosens everything else up and I am able to really enjoy it. But if my clits sore it doesn't work as well cos I can't orgasm first and I get the burning afterwards. Seem to be doing ok maybe twice a week. Hes good about it though If I am having a bad few weeks it's a no go. I always know how I am going to be based on the daily pain.

You will get there! xx

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UK based vestibulitis help

Post  Suffering on Thu Oct 06, 2011 9:36 am

Hi,

I was hoping someone could recommend a doctor who knows about vestibulitis. I am convinced that is what i have, all my symptoms match, sex is very painful, always has been, i suffer from Vaginismus also but i believe that the tightness in my muscles is a secondary problem cause by the initial pain.

I have seen a couple of doctors who are all pretty clueless, i tried raising this with them but they have never heard of Vestibulitis and the only treatment they will offer me is counseling.

It is driving me mad trying to find someone who will listen and actually offer me practical help. If anyone knows a specialist doctor in the UK that i can approach please let me know.

I am based in Bristol but willing to travel if i need to.

Thanks! x

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Also uk vestibulitis but with cuts and sores also

Post  Ukvestibulodynia on Thu Oct 13, 2011 5:02 pm

Hi I am also in my twenties (22 next month)and a newly diagnosed vestibulodynia sufferer and wondered what symptoms you get. Is it just pain? As I stated in a recent post I also get cuts and grazes after having sex but the dermatologist said this was not the cause if my pain and it was nerve related. Do u get and visible signs or just feel the pain and can't pysically see any reason for it.

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Re: UK based vestibulitis sufferer

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