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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


Vestibulectory removes 85% of pain, Birth removes 15%

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Vestibulectory removes 85% of pain, Birth removes 15%

Post  pangea on Sat May 27, 2017 8:27 pm

I was diagnosed in 1999, at 21 years old, right when my sexual life was starting.  I'm pretty sure it started after a reaction to spermicide on a condom, which I thought was a yeast infection, so I treated with a lot of creams. It was too much for my skin. It is strange to write these words now, at 40, and revisit what was a very depressing, painful part of my life.  To get to the point, after years of trying everything under the sun and the redness and papercuts getting progressively worse, I decided to get a vestibulectomy after 10 years of VV.  The surgery removed 85% of the pain, which is a great success.  I could have sex, and for the first time enjoy it without needing a lot of alcohol to numb the pain.  After a year of good sex, it was time to make babies, I've made two!  Because of the lack of skin to stretch, I tore significantly, but that was like booster surgeries each time when getting stitched back up.  These free 'booster' surgeriges 'reorganized the skin again, and actually removed the remaining 15% of pain, and now I actually have trouble NOT orgasming.  It all seems so normal now, that I forget to terrible 10 years of my 20's.  So that's the short version, here's additional information.

Though I live in Phoenix where a vuvlar specialist lives, I opted to fly to Portland and get the surgery done by a very experienced female doctor at the teaching university there.  She has been doing these surgeries longer than most any other gyn, and I liked that she probed me gently as I feel a good surgeon should, and was a female. I kindof like that, emotionally.  Even after flight and hotel it was cheaper than doing it locally.  I stayed at a hotel there one week with my mom as I recovered

Equally important in my recovery is the associated intolerance of wheat, milk, and eggs, which if I eat for two weeks continuously will make me go down in a ball of pain on the floor after urinating and for the next 5 hours, even if I'm at a mall, I discovered.  Just like the scene with Tom Hanks in the move The Green Mile.

Well, my babies are home so I have to run! But isn't that nice to read!? My babies that I made by having sex without pain and whose birth led to an even better sex life are home!  

It took me a long time, but it gets better. Keep at it, keep researching, and it'll happen for you, too!

Be strong and stay away from negativity.

Love,

S.R.

pangea

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Re: Vestibulectory removes 85% of pain, Birth removes 15%

Post  sj17 on Tue Jul 04, 2017 10:55 pm

Hi Pangea,

Did you have a full vestiulectomy or partial? Also is your pain generalised or provoked?

sj17

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Re: Vestibulectory removes 85% of pain, Birth removes 15%

Post  Tired89 on Wed Jul 05, 2017 10:28 pm

Wonderful story! I'm so happy that this terrible journey is over and that you can have a normal life...something all of us ladies with this condition dream about. I also have the same questions as Sarah too though. I have vestibulodynia with provoked pain. It seems I've always had it. I'm curious about the outcome of surgery when the condition is like mine.
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Tired89

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Re: Vestibulectory removes 85% of pain, Birth removes 15%

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