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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: 7

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


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

Clitoris Issues

Tue Apr 28, 2015 8:17 pm by January

I am going crazyyy trying to figure out what's wrong. Please does anyone else have an issue similar to mine? I'm only 22. So, basically when my clit is lightly rubbed, there is no feeling. However, when rubbed vigorously and directly, the burning and tingling sensations shoot down my legs and feet as if coming to the end of an orgasm but with no good feeling leading up. It's so strange. What …

Comments: 2

Cured of Vulvodynia

Wed Aug 17, 2016 1:39 am by angelique2016

I used to post on this forum a long time ago and told everyone of how I was cured of my vulvodynia by a (Melbourne Australia) female dermatologist, she put me on very low doses of Nortriptyline (Allergron) for pain management about 10mgs I believe it was, and she also had me use Advantan Fatty Ointment (not the cream) (although I saw the cream for sale on ebay from germany) so it might help, as …

Comments: 10

Vulvodynia and IVF? Anyone done this? What does it do to the vulvadynia?

Sun Jul 30, 2017 1:03 am by Carolyn4

Hi everyone,

I have had vulvodynia since age 27--I am now 43 and it has been in pretty good remission.  I control it with acupuncture and herbs, and some cranial sacral therapy.  I have a 5 year old, had a pretty uneventful pregnancy which ended in a c-section.  My VV worsened after that, and I have worked hard to get it back under control (it took over a year to get it back into pretty good …

Comments: 1

Partial Vestibulectomy

Mon Jul 31, 2017 6:44 pm by JGD13

Hi all i am new here.
I had a partial vestibulectomy 21/7 for my provoked vulvodynia.
After a painful few days and feeling quite uncomfortable it seemed to get better. 1 week after i noticed some white stuff and gloopy discharge, it wasnt smelly or itchy but i got a check up at the gp surgery and the doctor said the stitches looked fine and i could just have a touch of thrush. He said this is …

Comments: 6

Suffering for 10 months

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Suffering for 10 months

Post  Juliaprincess on Mon Mar 19, 2012 11:36 pm

My pain started 10 months ago and I thought I had a urine infection. I got antibiotics but it didnt clear up and then test showed I didnt have any infections. I went to the GUM clinic and got tested for everything and it was all clear. I saw a skin specialist 2 weeks ago and they diagnosed my with Vulvodynia. I was told to take Nortriptyline at night time. I have taken 10 mg for 2 weeks and now as of tonight I have been told to up it to 20mgs increasing by 10 mgs every two weeks until a max of 40mgs a night if I can tolerate.
I did take amatriptaline before but this had side affects for me.
I have pain all the time. My pain is mostly on the left hand side inner labia and also occasionally on the clitoris.

I hate to have this pain all the time and often take pain killers most days to get through the day. Some days I can tolerate the pain. I have had to have councelling due to a family problem and I am also talking to the councellor about the pain. I have found out that I have been abused as a child and also read this could be one of the reasons for suffering with Vulvodynia. I also have head aches which have eased since taking the Nortriptyline. I am hoping that with the increase in medication I will see some lessoning of the pain below.

Its affected my relationship now. I met someone 6 months ago and I am really happy in the relationship but I have had to tell him about the pain and he is very understanding. Sometimes I can have sex and other times the thought of having sex with the pain puts me off. For me luckily sex is not painful but having the pain has made me enjoy sex less and also put me off. I dont like being touched now as I did before.

The pain affects every aspect of my life. I have trouble concentrating at work now. I have a few close friends who know I suffer but its not easy to tell people and people dont understand anyway.

I have read others stories and feel so sad for myself and them.

I have recently changed to cotton underwear. I am contemplating using vasaline as I havent tried this yet but someone recommended it.

I have been referred to a pain specialist and am now waiting an appointment. I have read about the pudendal nerve affecting pain and am interested to get a doctors opinion on this

I have to say this is the worst pain I have ever suffered and I wouldnt wish this on anyone else. I am only 39 and have been quite sexually active in my life but havent settled down and had children. I have always wanted to but having this now makes me think I will never do this.

If anyone has any new advice then please pass on through this website. Really keen to help myself and others with this awful diagnosis.

One of my relatives thinks I have somatization disorder. Has anyone else heard of this or been told they have this?


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