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» New here would very much appreciate advice at the end of my rope
Fri Jan 11, 2019 1:46 am by Jma990o

» Diagnosed Recently
Tue Jan 08, 2019 3:55 pm by flissyg

» Looking for suggestions or encouragement
Thu Jan 03, 2019 11:09 am by Gaby

» Clinical Trial for Vulvodynia Treatment
Wed Dec 19, 2018 7:13 pm by wramirez

» New and need advice and help
Thu Dec 13, 2018 9:48 am by Derry59

» Things that have worked for me
Tue Dec 11, 2018 11:32 am by Amethyst

» Found relief after more than 15 years of pain!
Tue Dec 11, 2018 11:17 am by Amethyst

» I'm new to this forum and would love some advice! :)
Tue Dec 11, 2018 3:06 am by Cin124

» I think I know what causes vulvodynia-it's the memory of pain
Sat Dec 08, 2018 1:24 pm by foxysugarpants

New here would very much appreciate advice at the end of my rope

Wed Jan 09, 2019 9:09 pm by Jma990o

This might be a little long but it's been such a long time I've even been able to talk about my problems openly thank you in advance for any helpful advice.
So ok I'm 24 I've been having this problem for over two years seen quite a few doctors and obgyns alike and nobody will take me seriously I have had a few utis and yeast infections and even bv once and this all started after one of the utis …

Comments: 2

Diagnosed Recently

Tue Jan 08, 2019 3:55 pm by flissyg

Hi All,

I’m so glad I’ve found a place where there are others who understand how I feel!

So this is my story:-

I’m 36,  and 4 months ago, whilst innocently sitting in bed reading I experienced a very sharp stabbing pain in my clitoris. It last only a few minutes and then subsided as quickly as it came on. It put it down to “one of those things”.  The following morning I woke up …

Comments: 0

Looking for suggestions or encouragement

Sat Jan 13, 2018 12:10 am by ryn207

Hi there. I'm 25 and have been dealing with this for over a year and a half and I'm really starting to lose hope this will ever stop.

In July of 2016 I had a yeast infection. When Monistat didn't work I went to my gynecologist who prescribed Diflucan. When the itching didn't stop she retested me and found that my yeast infection was gone, but I now had a bacterial infection. After taking the …

Comments: 6

New and need advice and help

Wed Dec 05, 2018 3:26 pm by Cin124

Hi everyone,

About three months ago, I started having vaginal and vulval itching. Then, about two months ago, my vulva started to feel painful and look swollen, so I went to the doctor. I was tested for herpes, chlamydia, and gonorrhea which all came back negative. I also had to do a vaginal swab test and the only thing that came back positive was yeast infection. I was prescribed hydrozole …

Comments: 4

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 …

Comments: 13

Hello. Happy to have found this group.

Fri Dec 07, 2018 9:01 pm by foxysugarpants

I am new here and hope to gain some insight into my vulva pain. I suffered for a long time not realizing that there are ways to feel better. I saw the Dr. yesterday and I am starting P/T pelvic and valium suppositories. queen

Comments: 0

Had this for 5 years, looking for people who understand

Sat Oct 06, 2018 9:46 pm by blackberrie

Hey all. I'm really struggling to find anyone in real life who can really understand what I'm going through. I've had vestibulodynia for 5 years now and I'm single. Obviously it has completely affected how I approach dating and sex and the fact that I can't really talk to people irl about it has made me feel very lonely. I've found that a lot of the women who have this problem are married and …

Comments: 3

Anyone have pain with urination?

Tue Oct 16, 2018 2:35 pm by mertzwl

Hi everyone - I can't believe I've been dealing with this for almost 10 years and an appointment scheduler at a urogyn office is the one to suggest I look into vulvodynia. Honestly, I don't care, I just thankful I might have an answer.

I have pain in one specific spot right around the urethral opening so it always coincides with urinating (it's not a uti). Does anyone else deal with pain …

Comments: 6

Diagnosed recently, looking for advice

Sun Sep 02, 2018 12:51 am by Cloudberry

Hi everyone,

I'm so glad I found this forum! I was diagnosed with vulvodynia/vulvar vestibulitis (still not sure about the difference between all the different terms) a couple of months ago and I could do with some advice. This is probably going to be a lot of text because I just want to get everything off my chest, so please bear with me.

I’m a woman in my late 20s. Before getting diagnosed …

Comments: 4


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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