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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


Where do I go from here?

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Where do I go from here?

Post  sailor_moon on Sun Jul 05, 2015 5:43 am

Hi ladies.

I had a laproscopy at the start of the week to see if there were any internal causes of my vulvodynia.

Nothing the doctor could see would be causing it or my messed up hormones Sad

But...he did find endometriosis on the back of my cervix and treated it. He also found a weird discovery. ..my bowel is 7-9 inches longer than it should be! He said he isn't a bowel specialist but he does work in conjunction with one so he is going to send the photos to this guy and consult with him and we will chat about everything in 6 weeks. God, they

In the meantime where the hell do I go from here? I take Lyrica 150mg. ..can up it to 300mg and it still does nothing! Tried every lotion and potion available and they irritate me even more, steroids make it worse. I have not tried Amitryptilene so maybe that's next? But if Lyrica does not work I can not see why ami would....I know they work differently but you would think if it was nerves Lyrica would have helped a bit.

I am scared when I go back the doctor is going to tell me he can't help me and ship me out the door Sad I am trying everything. ...nothing works. My marriage is really starting to feel it too.....

I am currently trying a mixture of Evening Primrose Oil applied topically mixed with some Manuka Honey...has helped a bit with my itching. This combo has been much better for me than coconut oil, which doesn't do much for me except irritate.

Another thing, from being in hospital, the bastards put my frigging back out, now I am getting nerve throbbing pain in one vestibule all the way down my buttons cheek and my thigh...any suggestions on what could help with this? I had this nerve thing which comes and goes about 3 times a week, now it's constant almost. It is driving me insane.

For those who haven't followed my story, my main symptoms are itching all over, every day just about, with inflammation and vestibule burning that comes and goes and rawness.

Sorry for any misspelled sentences, I'm on my mobile.

Any advice would be so so appreciated. I feel like I am losing my mind. Sad
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