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I'm new to this forum and would love some advice! :)

Tue Jun 05, 2018 4:13 am by anikita

Hi lovely gals!

I'm honestly hoping to get any bit of advice anyone might have to offer. I go from bouts of sobbing hysterically in my boyfriend's arms to feeling confident that I can beat this.

I haven't been actually diagnosed with vulvodynia but EVERYTHING under the sun has come back negative. I started having sex 4 years ago after starting Lo Loestrin, with my first and current boyfriend …

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I'M NEW - Do I listen to my gyno who I feel has it wrong?

Fri Mar 09, 2018 6:17 pm by Tunes25

Hello!

I am a 25 year old woman and wanted to share my story here as I feel frustrated by the suggestions of my gyno and am hoping for some advice.

To give the context for this: in September 2016 I moved in with my long term boyfriend after living abroad a year and (nearly) abstaining from sex. Within a few weeks I had got a yeast infection which I treated myself successfully, but then 2 weeks …

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Gabapentin Gel. or other topical creams

Thu May 10, 2018 9:43 am by Rosie21

Hi I have been suffering for some years with this abominable pain. I have tried most of the systemic drugs , I asked specialists and Doctors if I could at least try a topical treatment but because this requires a special prescription have been refused Has anybody had a chance of trying these? Thank you I will try to put a link on to some of the research into Gabapentin Gel. Thanks.

Comments: 1

What has been helping ME (much less pain over time!!)

Wed May 16, 2018 3:43 am by leoscc

Hello everyone! I vanished for quite some time as my life became consumed by not only this but other daily responsibilities as well. Shortly after my diagnosis, my boyfriend f 3 years left me as he did not want to deal with this. It left me broken for a while but also gave me time to figure out what the heck was going on. So, I will write out a quick list of my symptoms and what helped me.

1. I …

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I cured myself 100% of vulvodynia twenty years ago--I hope this helps someone

Mon Mar 12, 2018 4:33 pm by totallycured

Hi,

Every so often I'm reminded of the constant, persistent, horrible pain I was in two decades ago, and I reach out to try to help others who are suffering. If someone had offered me a solution during that terrible time, I'd have jumped at it. I hope this helps someone.

Yes, I did have terrible vulvodynia. It felt like someone poured acid all over my vulva. My doctor confirmed it and was …

Comments: 4

Condoms Less Painful?

Mon May 07, 2018 3:35 am by stillinpain

I'm just curious, has anyone found using condoms to be less abrasive to the skin than without? I just got off birth control and haven't stretched myself out enough post surgery to try sex yet, but when I do I am wondering how trying it with condoms with affect the sensation. I feel like for me the skin to skin sensation creates pain, not just at my entrance but internally, too, since I also have …

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Will there be an end?

Fri Apr 27, 2018 12:06 am by Krista2828

I go in and out of being okay and not being okay with this condition. I question often why me? I am a problem solver by nature and I feel so defeated that after tons of research and trial and error and doctors and tears that there still is no answer.

I am in my 20's.. it shouldn't be this way.

Id love to know what all has worked! I am willing to try anything to get my life back. I am curious …

Comments: 6

you can be healed so easy and quite fast.

Thu Apr 26, 2018 11:46 pm by pussycat

Hello everyone,
i am new to this forum. I wanted to share my personal "journey" with V with you and to give you a real hope you can be totally healed/recovered from V. Many years ago i was struck with V, it was painful and got worst and worst, eventually i could not sit, could not stand, could not walk, could not swim in a swimming pool anymore. I was becoming bedridden, it frightened …

Comments: 4

Hi Im from Australia :)

Sat Jan 08, 2011 1:08 am by emma

Hi girls... I live in Australia.
I am currently undergoing a new treatment for vulvodynia. Just wondering if anyone else here has tried it. It's Endep in the form of cream to apply directly on the area. I dont know if anyone else has tried this but so far evidently it has had a 50% success rate.
Anyway i feel at a loss. This new treatment is exciting but at the same time i just dont feel like …

Comments: 35


My Story of living with Vulvadynia/ Vestibulitis

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My Story of living with Vulvadynia/ Vestibulitis

Post  nadja on Wed Jan 12, 2011 4:24 pm

Hi Everyone I joined this forum last night after I was lying on my bed in tears again Sad
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

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Re: My Story of living with Vulvadynia/ Vestibulitis

Post  Sebby (Admin) on Wed Jan 12, 2011 8:25 pm


Hi Nadja and welcome to the forum Smile

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

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Re: My Story of living with Vulvadynia/ Vestibulitis

Post  Mouse on Wed Jan 12, 2011 9:02 pm

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 Smile 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 Smile 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 Smile
Take care
Vicki

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Re: My Story of living with Vulvadynia/ Vestibulitis

Post  noni on Fri Jan 14, 2011 10:59 pm

Big hug Nadja.
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Re: My Story of living with Vulvadynia/ Vestibulitis

Post  naomi on Sun Jan 16, 2011 11:04 pm

"potty mouth" Mouse? talk for yourself!! Smile 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 Smile

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

pleased to meet you xxxx
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Re: My Story of living with Vulvadynia/ Vestibulitis

Post  nadja on Mon Jan 17, 2011 5:11 pm

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

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Re: My Story of living with Vulvadynia/ Vestibulitis

Post  Reader on Tue Feb 01, 2011 6:43 pm

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?
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Re: My Story of living with Vulvadynia/ Vestibulitis

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