My Story of living with Vulvadynia/ Vestibulitis

Hi Everyone I joined this forum last night after I was lying on my bed in tears again
I am so sick of it now like all the rest of you it started as an infection UTI then thrush but kept coming back and the so called doctors don't know ANYTHING about it until I asked to see a specialist. All this happened over 3 and a half years ago and in a way it was a relief to put a name to the condition that wasn't going away.
I was put onto antibiotics then the Ametripine one... and another as they never really helped. So then I decided to try the natural approach. I do still use Hydromol ointment which desensitises the area it looks a bit like vasaline but has helped. I normally use it and press down hard with my finger to get the area used to touch and it is a lot better now for that. I also use pure aloe vera from the plant and that doesn't sting because it's cooling and healing. I only wear 100% cotton knickers now NEVER jeans but skirts and baggy joggers or leggings. I find that since having spiritual healing and taking Acid Redux tablets it has helped and now drinking the oxygen water too which is good for a whole number of conditions... I sometimes take codeine if in REAL pain but I really do think it is improving it's worse in the anus area now I always feel like it moves about a lot do you? I can't stand the feeling when it's in the anus as it's deep and tight and you feel lower back pain too with it and all around the hips....
I do believe that STRESS is a major trigger with this condition which is why I ended my relationship back in June last year as he wasn't making me happy and I'm also not happy in my job which I am looking to change currently. Maybe when I am really happy with my life will this then go away. I know it will go as I have read articles of women who have got rid of it. It's just living with it when you have it feels so lonely and miserable as no one really understands. I am so glad I can talk to people on here who know what it's like so I don't feel so alone with it. I have lost friends over this as having to cancel on plans last minute due to the pain I was in where you literally just want to lie down and cry. I have had the occassional one who understands but it's not easy.
Well thanks for reading this and I ask the healing angels and for a miracle cure for us all to have a normal feeling body again.
Love and Light
Nadja xxx

Hi Nadja and welcome to the forum

Mine too started with what I thought was recurring thrush infections and a few must have been.

I was on antibiotics for acne for years as a youngster and since have found out that the long term use of antibiotics are thought to be a possible trigger for vulvodynia and re-ocurring thrush.

I was going through a great deal of stress too when I developed it but as I have had long term anxiety since I was a teenager im not sure if this was the major cause..I believe mine was due to a combination of the long term antibiotic use and pelvic floor dysfunction as I also have had vaginismus since I was a teenager.

Im currently sorting out getting refered to a womens health physical therapist, and using dilators and soon bio-feed back. Maybe this is an area you could look into?

As for losing friends the ones you keep are the real friends!

You have us to talk to and we do understand as we are going through the exact same thing. I have had a horrible flare up and have just come on my period so am so going to try to have an early nite with some co-codermol and the radio..

Take care

Sebby
xx

Hi Nadja, welcome!

My vulvodynia started after a small surgery on my bartholins glands, it was nastier than I expected and my therapist says my body may be revolting because of the intrusion. Well whatever it's doing it's time to stop!

I've been trying a more natural approach as well. I have a water ioniser which produces higher PH water, is that what yours is? I've looked at reducing acid foods, sugar, coffee and alcohol - besides the temptation to just get drunk Stress is definitely a trigger. I'm now not working as well. I went down the drug route last year and found working impossible.

I'm now trying really hard to improve my mental health. Unfortunately this also involves exercise ahhhhh I've never been keen. But exercise releases the natural feel good chemicals and they are free I think the only way to have the energy to beat this to be mentally strong enough. Even if the exercise is a 5 minute walk. I'm also working on face time with friends, it's bloody hard because I'd rather be a hermit.

As for friends not getting it, you're right. My husband gets it but still doesn't understand that it's all day every day. So I guess we go on forums to vent and get support from people who are living this and forgive our friends a little. I wouldn't have understood the impact this has before I got it. I describe it as a chronic pain condition though and that tends to be self explanatory.

I also have pain in the backside sometimes. Depending on what type of vulvodynia you have, there are some theories that the pudendal nerve is the culprit. That runs a course from front to back. Have you had physio? I'm going this afternoon for the first time and I'm bricking it. I have most of my pain of the left side and the specialist said I have bunched up muscles there. Yaaayyy I can't wait for those to get a working over.

We are all here to talk too! A lot of us have potty mouths so feel free to vent if you like
Take care
Vicki

Big hug Nadja.

"potty mouth" Mouse? talk for yourself!! heehee just messing!

Yeh feel free to vent away...I know I do and I'd go mad if I didnt!

Have you been the the john radcliffe in oxford?...Ive done the rounds and been there...got the tshirt

Im near (ish) you, about an hour away in Cheltenham.

pleased to meet you xxxx

Heyyyy so you are Naomi. Would you want to meet up sometime for a drink we could drive half way?

Hi Nadja

Ive just read your story and can really relate to what your saying.

I cant bear to part with my jeans, they are all I wear! do you find it really helps? It hurts when I wear them sometimes if im sat down and they are tight in my crotch.

Have you found anything else that helps ease the pain?