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» Anyone have pain with urination?
Yesterday at 9:55 am by Gaby

» New member - just looking for feedback
Mon Oct 15, 2018 5:40 pm by mertzwl

» Will I ever be able to wear jeans?
Sun Oct 14, 2018 4:14 pm by Npage14

» Amitriptyline Success and new-found love
Thu Oct 11, 2018 8:29 pm by megaanx

» Diagnosed recently, looking for advice
Wed Oct 10, 2018 2:30 pm by wuhujen

» Dose HAVING VULVODYNIA MEANS YOU HAVE LUPUS?? HELP IM FREAKING OUT!
Wed Oct 10, 2018 2:01 pm by pussycat

» From a concerned husband
Wed Oct 10, 2018 1:46 pm by shope610

» Had this for 5 years, looking for people who understand
Wed Oct 10, 2018 1:55 am by Npage14

» 6 year sufferer but I’ve found some hope
Wed Oct 10, 2018 1:33 am by Npage14

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

From a concerned husband

Thu Jul 12, 2018 10:45 pm by ConcernedYorkieHubby

Hello everyone,

This is probably a little unconventional, but I’m a man who is here because his wife has been diagnosed with vulvodynia. The poor girl has been suffering with vulva pain for around 10 years now, and I’ve been by her side through the pain and tears and doctors misunderstandings the whole way, and we’re both exhausted and terrified by the whole experience.

I’m sure a lot …

Comments: 4

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: 2

6 year sufferer but I’ve found some hope

Wed Oct 10, 2018 1:33 am by Npage14

Hey, ladies! I’m new to this support group, I’ve thought about doing something like this for a while so I wanted to try this out! I’ve had vulvodynia for 6 years now, I am self diagnosed. I’m 20 now and the pain started when I had my first encounter with sexual contact when I was 14(I still remained a virgin though it was fingering). For a couple years the pain was so bad I could hardly …

Comments: 0

Hurting, Burning, Itching, and Worn Out

Thu Aug 09, 2018 10:55 pm by donnambr

This vulvodynia that I'm currently suffering with is so cruel. I hurt, I burn, I itch. When I first got this several years ago, before the internet, I though I was the only one with this awful disorder. Doctors couldn't figure it out. I felt so alone and devastated. Somehow it disappeared for a few years and now I'm suffering again. This dreaded V misery is back and I feel like I will be with …

Comments: 5

Hi girls! New in this forum

Fri Jul 13, 2018 2:31 pm by Gaby

Hi everyone!

Also joining the V club, Here my story:

It all started last year in september with a very bad throat infection for which i had to take antibiotics for about a month. This cause several yeast infections (candidia albicans).... one after the other!. I had them every month from october 2017 till march 2018. During this period i use an incredible amount of anti-fungal creams and …

Comments: 1

Newbie and feeling helpless

Wed Jul 11, 2018 1:52 pm by Taylor1

Hi, I found out a few weeks ago that I have this condition, started off at the end of April as a uti took strong antibiotics then got a thrush infection and now this.. My doctor has tried me on amitriptyline and gabipentin and both made me so poorly I couldn't take it plus I have seen what long use of these drugs has done to my mom for pain and its not good. I am using coconut oil which does …

Comments: 3

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: 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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