Vulvodynia

[verity]

Hi all

This will be the first time I have opened up on here about my pain condition but i'm starting to tell myself that I dont have to be ashamed

I have Vulvodynia, which is a pain condition involving the vulval area. Bascially the outer part of the vagina including the vagina entrance.

I have always had pain upon penetration or inserting tampons. This is called provoked Vulvodynia or Vulvar Vestibulitis syndrome. I have had relationships and intercourse but sex has always caused me pain. I thought for a long time it was just anxiety due to a sexual assult now I know I have had this condition since I was a teenager and prior to the sexual assult. Research has shown that this condition is not caused by anxiety or any other mental health condition.

over 2 year ago this pain became constant. Vulvodynia pain can be stinging, soreness, rawness or burning.

It is painful to sit, can only wear soft leggings or skirts etc

I have since started pregabalin as its also used for neuropathic pain and am doing pelvic floor biofeedback home training. It will be many months before I know if it helps.

I set up a forum for Vulvodynia sufferers and have met many wonderful women and help me to feel I am not alone with this and that has helped so much

This condition has really made me feel hopeless at times and coupled with anxiety I feel like I cant deal with day to day life very well.

I feel completely abnormal and broken. Not a full women and not a full person. Just a shell of pain and anxiety.

Im trying to stay strong but there are days like today (I didnt sleep well due to anx) where I just dont understand why this has to be my life

I hope and pray for healing

[Mo B]

Hi Verity

Although not yet officially diagnosed I am beginning to think that I am suffering with this condition also. It started a couple of months ago with what I thought was cystitis after a 4 hr plane journey. Treated with antibiotics but repeated urine tests were all normal. Vaginal swab also normal and everything looks normal according to doc. I am also suffering from anxiety and depression and have been put on an anti depressant. Its mainly this condition which is upsetting me as sometimes the pain really gets me down although ive noticed the anti d is helping with this. My symptoms can vary from slight burning only to pain in urethra area and a raw feeing with stinging.Mostly standing and walking are ok. Everything feels so sore!! Sitting down is very uncomfortable . Nothing hurts to touch and all topical creams ive tried just seem to make it burn more. Sometimes I can get relief by taking a couple of painkillers and using a tens machine on another part of my body which seems to interrupt the pain signals. I am 59 and so mine is probably connected with menopause or something. Ive tried eostrogen cream but burnt me and also gave me cramps which i didnt like so stopped using it. Im about to go on another holiday next week (flying again!) and im dreading the flight. Its to celebrate my long suffering husbands 60th and our Ruby Wedding and our son and family are coming too. Have you any ideas for coping with this, sitting etc or do you know of any soothing creams that work for you. It does get considerably worse when Im anxious also so ill be prepared for that. Any advice will be appreciated. if no better when I return from hols i will ask to be referred to someone who can maybe help.

[crystal17]

Didn't Charlotte from Sex and the City have this? "My vagina's depressed!"

I feel like I may have this too, I've had what I thought was cystitis after a long journey where I couldn't go to the toilet for ages, then 2 back to back courses of antibiotics for something else, both caused very bad thrush and since then I just dont feel 'right' down there and dont want to have sex or let my partner anywhere near me. It feels just as psychological as it does physical. Anyway I can relate to both you ladies, I hope we can find ways of managing these horrible symptoms, whether it is vulvodynia or something else

[Magic]

Having read these posts. I think i may be suffering from the same thing.
I have never heard of this condition, but from what you have discribed I will mention it to GP next time i go. It comes and goes with me.
I am grateful for the information . Thank you

[snowwhite]

Oh wow...I am so glad I saw this forum! Okay, I think I'm dealing with the same thing. About 6 weeks ago, I started with a UTI, they put me on Cipro, and I could only tolerate that for 3 days, after which I took the natural route, taking colloidal silver,cranberry pills, cranberry juice, and lots of water...........BUT, not only does this seem to be hanging on, but NOW I've got burning, slight itching, and actually, just plain PAIN in the vulva area....it actually seems to be deep inside the vulva walls, like over on the sides, on the walls of the vulva........everything all of you described, I have ....... this is awful. Yes, no matter what I do, I am in pain there.....I'm on my way out the door at the moment, I need to get some Monistat, and Replens...Replens USED TO help me, so let's see if it'll do the trick now.........but see, this goes deeper than just the surface skin...like I said, it's just plain PAIN, deep within the walls....ugh! All I've been doing is taking pain killer, such as Advil and Tylenol....and to be honest, it doesn't help all that much either. It seems to be worse when I have bad anxiety though, and I DO think anxiety and stress definately contributes to this condition, as it does to almost all conditions really! It IS very depressing, because you're always in pain, then that starts up the fear and anxiety, which in turn, makes this worse! I hope we can all find some relief from this monster, we shouldn't have to suffer with this!

[mary jane]

I have this as well, except in my case there is no burning pain, however the whole area feels like an electric fence, can't stand pressure or touch to it :(
my vulva hurts so bad, stabbing pain. I fear I have some damaged nerves there

[nicolag84]

I think iv got this to .iv got a burning uncomfortable feelin round the opening of my vulva .iv had swabs done and they were clear had this for about 2 months now and bin told everything down there looks fine just very uncomfortable and burning and it comes and goes .

[Rebecca___p]

Hi girls, I've had this pain for as long as I can remember (I'm 17 due to the pain being sometimes unnameable and just made me so fed up nothing could be done). I've been to 2 gynaecologists 1 of which helped me out so much and can thank my treatment for. I didn't even realise I had this until he told me, and was shocked that my previous gynaecologist did not see this. Vulvar vestibulitis (aka vulvodynia) is caused mainly by having thrush multiple times, making the nerves in the vulvar more sensitive. He told me that he had a treatment and I was so happy. -I am easily susceptible to thrush:((-
He prescribed me Atarax (an anti anxiety medication) it has been succesful in treating my discomfort. He first prescribed me 10 millagrams as he wasn't sure how I would be with the side effects/will cure my VVS with this low dose, (which are just drowsyness but can be managed by taking in at night -I didn't get any of the side effects-) it helped out my VVS but not treated it completely (I only took this for 28 days). He then prescribed me a higher dose of 25mg (which I am currently on for 3 months till my next check up). If that has treated it I will have to take the pills for 6 months for it to go. However if I still have it I will have to move to 30mg. But he is so helpful and said either way we are treating it. I hope this helped girls. It's hard to find a good gynaecologist that knows what vulvodynia is and how to treat it well.

[Leslie735]

Just want to throw this out there as I've been dealing with vulva pain for the past couple months, myself. TMS = tension myoneural syndrome or tension mind syndrome. Its a mindbody syndrome. Pretty much your mind (subconscious) is protecting you from something and it comes out in pain in your body. The pain is very much real but your brain is creating it. I highly suggest reading Dr. Sarnos MindBody Presctiption and Claire Weeks Hope and Help for your Nerves. Both of those have been amazing! I dealt with urinary issues 3 years ago and was so scared I have IC. I practiced the work I read about and it was gone within a couple of weeks. Basically, you repress emotions from past traumas or even day to day stress and this is how your body deals with it. If there is no physical cause that be found, rest assured, its caused by TMS. I'd post a link to the forums but I don't think nomorepanic allows you to. So good TMS forums. Its amazing, I promise you won't regret it!

[mary jane]

Hi girls, I've had this pain for as long as I can remember (I'm 17 due to the pain being sometimes unnameable and just made me so fed up nothing could be done). I've been to 2 gynaecologists 1 of which helped me out so much and can thank my treatment for. I didn't even realise I had this until he told me, and was shocked that my previous gynaecologist did not see this. Vulvar vestibulitis (aka vulvodynia) is caused mainly by having thrush multiple times, making the nerves in the vulvar more sensitive. He told me that he had a treatment and I was so happy. -I am easily susceptible to thrush:((-
He prescribed me Atarax (an anti anxiety medication) it has been succesful in treating my discomfort. He first prescribed me 10 millagrams as he wasn't sure how I would be with the side effects/will cure my VVS with this low dose, (which are just drowsyness but can be managed by taking in at night -I didn't get any of the side effects-) it helped out my VVS but not treated it completely (I only took this for 28 days). He then prescribed me a higher dose of 25mg (which I am currently on for 3 months till my next check up). If that has treated it I will have to take the pills for 6 months for it to go. However if I still have it I will have to move to 30mg. But he is so helpful and said either way we are treating it. I hope this helped girls. It's hard to find a good gynaecologist that knows what vulvodynia is and how to treat it well.

This is the absolute first time I find info on treating vulvodynia with anxiety medication! Wow!! ok, it makes sense since pain involves fight or flight I guess....so interesting it works for you!!

I had it in 2013 with paresthesia and electric shocks, mine was bad but responded to amitriptyline and lyrica very well....I had 3 pain free years and even a long time without medication which was heaven.
It returned for me 2 months ago sadly, I had a period of very high stress and anxiety and got it again..my doctor wants me to see a therapist apart from medication so maybe if I treat my anxiety this too will stop. thank you for posting !

---------- Post added at 19:26 ---------- Previous post was at 19:07 ----------

Just want to throw this out there as I've been dealing with vulva pain for the past couple months, myself. TMS = tension myoneural syndrome or tension mind syndrome. Its a mindbody syndrome. Pretty much your mind (subconscious) is protecting you from something and it comes out in pain in your body. The pain is very much real but your brain is creating it. I highly suggest reading Dr. Sarnos MindBody Presctiption and Claire Weeks Hope and Help for your Nerves. Both of those have been amazing! I dealt with urinary issues 3 years ago and was so scared I have IC. I practiced the work I read about and it was gone within a couple of weeks. Basically, you repress emotions from past traumas or even day to day stress and this is how your body deals with it. If there is no physical cause that be found, rest assured, its caused by TMS. I'd post a link to the forums but I don't think nomorepanic allows you to. So good TMS forums. Its amazing, I promise you won't regret it!

Hi, thanks for posting this, I also read the TMS forums....
The thing is for me, medication works so well that I can't bear to stop it and fully do the TMS work, but I do believe mine has an anxiety component in it,years of stress and random pain problems as a result ...

I do mindfulness now and take magnesium and read books on mindbody disorders ..but I do believe TMS can be a possibility