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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


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Post  infinitelywondering on Thu Feb 15, 2018 10:04 pm

Dear all,

Today has been the day I've been waiting for. The day something FINALLY makes sense.
I've been told countless times that I've got nerve damage or a muscular condition, yet none of the specific treatments have helped me. My GP suggested attacking this from a different angle so referred me to a dermatologist specialist

after having a vestibulectomy with no success, I decided to visit a dermatologist! She tested my skin by scratching my back and diagnosed me with dermograhism and eczema. She suggested that this may be what is causing my vulval pain because I have extremely sensitive skin!

She also noted that most women who suffer vulvodynia or vulvodynia-like symptoms will also have this condition. Whenever you can, try it: on your bare leg or thigh, scratch yourself gently down a line and if you come up red quickly, you may be very sensitive too.

She's recommended I take some tablets and cream. For the eczema, she has suggested I use nothing other than Vaseline or Coconut Oil and massage gently into the area to prevent soreness and dryness.

I really hope this helps me out and also helps you ladies! Maybe this could be another thing that is causing our soreness ?

I will update you on how my treatment is going, very soon

Lots of love always,

Ellie x


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Post  Peachy92 on Fri Mar 02, 2018 8:50 pm

Good evening,

Thank you for this post, it had given me some hope.

I too had a partial vestibulectomy (at the age of 23) 3 years ago, with little success. It treated pain during sex/tampon use, but the awful vulval itching and sore/scratchy feel remains, and appears to be getting worse. I too got referred to a vulval dermatologist. A biopsy was done, as the external skin is generally very red and sore in appearance. It came back clear of everything, other than mild eczema, which baffles me.

I feel I have exhausted all avenues. I am on noratryptiline (only 10mg) have had a long course of fluconazole (in case of thrush reoccurring), vagisil, lidocaine 5%, various strength steroid creams. Nothing helps the terrible itch!

Any advice would be amazing, and greatly received. Do you know the name of the pills and creams your dermatologist prescribed?

Thank you taking your time to read this.
I hope to hear from you Smile


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Post  infinitelywondering on Mon Mar 05, 2018 10:30 pm


Yes, I was given EMLA cream which is basically a numbing cream. I've had great success using it and I'm sure it would be good for itching too. The pills I'm taking are cetirizine and fexofenadine: both are antihistamines that help with the swelling.

Your itching may be being caused by an allergy as that is a really common symptom. Cetirizine can be easily bought over the counter. Also, I'd recommend trying aloe vera gel and vaseline that will really soothe the area and prevent any chafing.

I really hope this helps,

All my love and support x


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Post  Peachy92 on Mon Mar 05, 2018 10:43 pm

Thank you very much for your reply! I really appreciate it Smile any advice is fab- I’m very desperate to find something that will atleast ease this itching a bit.

I have taken an antihistamine this evening, in the hope it’ll help a little. Have also taken my usual noratrityline also.

I shall look into the creams Smile

Thanks! Take care

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