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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 …

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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

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


New to forum and despairing with vulva pain

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New to forum and despairing with vulva pain

Post  Sap22 on Tue Dec 06, 2016 9:37 am

I am in feeling very down and in despair. I just can't see any light at the end of the tunnel. After months of bladder problems in August 2015 I got better then was diagnosed with Vaginal Atrophy in May 2016, which was improved by systemic HRT and vagifem. When I went to see my menopause specialist for follow up this September she diagnosed Lichen planus and told me to use steroid cream and vaseline. I didn't believe her (gut feeling!) and went to see another sexual health consultant in London who did an internal and gave me a good report regards the vaginal health (PH, no inflammation, VA or lichen planus etc). However, that caused a lot of delayed pain but improved after 10 days. Both she and the menopause specialist decided I should see a vulva dermatologist to definitely rule of LP as they disagreed. I saw her three weeks ago and although she can categorically say I do not have LP and is glad I didn't use the steroid cream, ever since she did the Q tip test I have had vulval pain/tenderness and it's getting me down so much. She diagnosed vulvodynia and secondary vaginismus. I can't use the vagifem I am supposed to use, as it makes it worse and this is worrying me because I don't want the atrophy coming back. Haven't used it for 14 days now. Last night I tried to gently put on a little barrier emollient to protect the area but I woke up in agonising burning pain at 2am. I am also having breakthrough bleeding (possibly from increased oestrogen) and will soon have an ultrasound, but I know I won't tolerate the transvaginal ultrasound, as I have significant touch tenderness now.

I just don't understand how the vulvodynia can worsen when I have used HRT and moisturisers recommended to treat the vaginal atrophy, and improved the situation enormously, but now am left with what I am told is neuropathic pain and cannot continue with local HRT treatment, or get on with life - just the simplest things like sitting is uncomfortable or wearing clothes down there is difficult. I am aware of it all the time and had to give up my job. I am just so depressed about it, as I can't get on with life. I started acupuncture (2 treatments) which I think helped with the prickly pain I was having, and am due to go this thursday but the touch tenderness is really bad.
I wondered if anyone else can identify with this and how they moved forward. Is it a question of time and not touching it. How can I move forward. Thank you for reading and sorry it's such a depressing post... xx

Sap22

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Re: New to forum and despairing with vulva pain

Post  PainBlogger on Tue Dec 06, 2016 4:33 pm

Have any drugs such as amitriptyline, pregabalin or duloxetine been mentioned to you? i.e. drugs used for nerve pain. These can be really helpful to some people. I'm doing really well on duloxetine. The cause of my pain is different to yours (http://vulvodyniasupport.forumotion.net/t2291-four-months-of-significant-improvement) but nerve pain is nerve pain, whatever the root cause.

Acupuncture can be good too. If you've had some success with that then I'd definitely suggest continuing with it.

I hope you soon feel more positive. This is a horrible condition, but it doesn't have to be forever.

PainBlogger

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Re: New to forum and despairing with vulva pain

Post  Sap22 on Tue Dec 06, 2016 6:35 pm

PainBlogger wrote:Have any drugs such as amitriptyline, pregabalin or duloxetine been mentioned to you? i.e. drugs used for nerve pain. These can be really helpful to some people. I'm doing really well on duloxetine. The cause of my pain is different to yours (http://vulvodyniasupport.forumotion.net/t2291-four-months-of-significant-improvement) but nerve pain is nerve pain, whatever the root cause.  

Acupuncture can be good too. If you've had some success with that then I'd definitely suggest continuing with it.

I hope you soon feel more positive. This is a horrible condition, but it doesn't have to be forever.

Hi and thanks for your response. I have the option of nortryptaline, as tried amitrityline but didn't like the side effects. Fortunately the burning pain has subsided but it's really hard to accept this condition and I will look up the duloxetine, so thank you x

Sap22

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Re: New to forum and despairing with vulva pain

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