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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


Gabapentin - and other questions around this

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Gabapentin - and other questions around this

Post  Antaea on Wed May 11, 2016 8:29 pm

Today I was diagnosed with generalized vulvodynia and I shall start with Neurontin, 1 tablett 300 mg at night. But I am very afraid of the side-effects. I have to drive 2300 km to Southern Scandinavia on June 15th, returning to Hammerfest two months later. And have to prepare the caravan for the travel in a couple of days. No possibility to take a plane. I have cats with whom I travel with. They need special treatment which only I can give them. And the stage on Gotland is more than a holiday. My sister and I have to discuss a lot of issues around my moving to Gotland next year. This cannot be done by chatting and skype only.
Therefore my questions: When I start taking Gabapentin, can I stop when I feel I will not manage to drive to Gotland? Or must this treatment last for a long time?
How long does it take until I can drive? Can I stop taking the drug if it does not work, or the side-effects are still dominant after two weeks. My doc told me that they will last so long.
Would it be better not to take the drug in this situation? My sister cannot visit me. She has the same problems with her cats. None can take care of them.
What are the most common side-effects you experienced? In the Norwegian catalogue I found an aweful and frightening lot of them.
I told the doc of my trip and that I must do it, but he is young and inexperienced. His superviser too meant I should start with Neurontin. But he does not care about his patients. He is brilliant but does not communicate at all.
I feel very concerned about starting a treatment which I cannot finish in case. Or where the side-effects makes it impossible to drive and to work over a period longer than 2 or 3 weeks. Then the pain would be easier to manage than not travelling to Gotland at all.
Thank you all for your opinion.
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Antaea

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Re: Gabapentin - and other questions around this

Post  emalita on Wed May 11, 2016 9:20 pm

I'm not sure if this would be available where you live, but my doctor prescribed gabapentin in a compounded cream that I was to use directly on my labia. I would highly suggest looking into having it put in a compounded cream because that could greatly reduce the side effects.

I personally chose not to use it because I know my issue is not nerve related, but my doctor said that some people get to a point of relief and can wean themselves off of it. Unfortunately there are others that are on it for life. I have read that some women have relief for several months and then the pain returns. So everyone's experience is different.

I hope it works for you!

emalita

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