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Do you ever worry that you're making it up?

Fri May 27, 2016 6:50 am by Lucci

Hello,

I was diagnosed with Vaginismus and Vulvar Vestibulitis 10 years ago. I was 18 and scared and moving across the country for college, but luckily was able to find a doctor who specialized in 'Women's Health' who immediately put me into physical therapy. Long story short, I've been in and out of the system ever since.

A few years into treatment, I had the diagnosis of PTSD added on for …

Comments: 7

Clitoris Issues

Tue Apr 28, 2015 8:17 pm by January

I am going crazyyy trying to figure out what's wrong. Please does anyone else have an issue similar to mine? I'm only 22. So, basically when my clit is lightly rubbed, there is no feeling. However, when rubbed vigorously and directly, the burning and tingling sensations shoot down my legs and feet as if coming to the end of an orgasm but with no good feeling leading up. It's so strange. What …

Comments: 2

Cured of Vulvodynia

Wed Aug 17, 2016 1:39 am by angelique2016

I used to post on this forum a long time ago and told everyone of how I was cured of my vulvodynia by a (Melbourne Australia) female dermatologist, she put me on very low doses of Nortriptyline (Allergron) for pain management about 10mgs I believe it was, and she also had me use Advantan Fatty Ointment (not the cream) (although I saw the cream for sale on ebay from germany) so it might help, as …

Comments: 10

Vulvodynia and IVF? Anyone done this? What does it do to the vulvadynia?

Sun Jul 30, 2017 1:03 am by Carolyn4

Hi everyone,

I have had vulvodynia since age 27--I am now 43 and it has been in pretty good remission.  I control it with acupuncture and herbs, and some cranial sacral therapy.  I have a 5 year old, had a pretty uneventful pregnancy which ended in a c-section.  My VV worsened after that, and I have worked hard to get it back under control (it took over a year to get it back into pretty good …

Comments: 1

Partial Vestibulectomy

Mon Jul 31, 2017 6:44 pm by JGD13

Hi all i am new here.
I had a partial vestibulectomy 21/7 for my provoked vulvodynia.
After a painful few days and feeling quite uncomfortable it seemed to get better. 1 week after i noticed some white stuff and gloopy discharge, it wasnt smelly or itchy but i got a check up at the gp surgery and the doctor said the stitches looked fine and i could just have a touch of thrush. He said this is …

Comments: 6

Post Vestibulectomy

Thu Aug 03, 2017 6:15 pm by infinitelywondering

Heya,

I had my vestibulectomy (full) about a day and a half ago. I was very sick and poorly just after the op and experienced intense pain down there Sad

However, today I came home and have done the following things:

-washed with warm water
-applied manuka honey to the area
-ensured I wash at least 3 times a day and dab the area dry gently
-use frozen peas to stop the swelling

As of now I am …

Comments: 1

New w/ Secondary Provoked Vestibuldynia

Wed Apr 26, 2017 11:46 pm by Birdy

Hi everyone,

I'm here because I'm pretty sure I have secondary provoked vestibuldynia, even though my gyno is still "optimistic" it is not.  My problem started six months ago when I got my second UTI in as many months (after going 25 years of life without one) and then ended up with a bad yeast infection (also my first one ever) thanks to the antibiotics.  Ever since the yeast …

Comments: 3

Anyone from the PNW?

Sat Aug 05, 2017 7:54 am by jungleclover

I'm located near Portland and I would be really cool to actually meet someone with this issue. I think my roommate in college technically had this problem. She had an overgrown hymen removed and can't deal with penetration as a result. But she is gay so it seems like it hasn't been a huge problem for her (although we didn't talk about it much so there was possibly more to it than she let on). …

Comments: 0

Constant pain, I want to die.

Fri Jun 02, 2017 4:29 am by Meggiemay

I posted on here a few years ago but my symptoms went away with the inflammation. I didn't get so lucky this time.

For over three months, i've had terrible rawness, burning, soreness in the urethral/vestibule area and pressure/hypersensitivity in the clitoral area. I've also had some lower abdominal pressure and burning on my butt. I can barely walk! My gyno hasn't been much help. I'm on …

Comments: 22


Crohn's Disease

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Crohn's Disease

Post  joannebond360 on Wed Dec 28, 2011 7:53 pm

Hi
Just thought i would share my story encase anyone can relate to it and doesnt miss a diagnosis like i have for 15 months.

I have swelling and severe inflammation of the vulva, 15 months ago i stupidly left a tampax in for too long and thought this was all a reaction to that. Was on lots of antibiotics in hospital and was really poorly from what they thought was an infection.

Came out of hospital and continued to have this swelling and inflammation to the point of not being able to walk or sit. Would burn, throb and itch. I have seen various doctors and was finally refered to a vulval specialist at guys and st thomas's in June of this year. She put me on antibiotics thinking it was a low grade celulitis still lingering from the tampax. After 3 visits with her she refered me then to st georges to a lymphedema specialist who deals with swellings. After a few visits with him he started asking questions about having bowel problems, loose stools etc (which i dont) and mentioned crohn's disease but ruled it out because i didnt have loose stools. When i got home i looked into it and every other symptom i have, flu like aches, growling tummy, extreme tiredness and have the urge to go to no 2's also which comes in bouts, got to the point now where i am ill and exhausted every day now. I told this info on my last appointment and he seems to think this is what i have. Also had a biopsy of the skin down there which just came back with the tissue being full of fluid. He doesnt think it is anything to do with the tampax or infection.

Crohns disease can cause this irritation down below and in the back passage also. It is a immune system problem which attacks the bowel and causes irritation which can continue into the skin of the vagina, vulva and perinium.

So if anyone has any of the symptoms i have mentioned it might be worth looking into it. Cant beleive a problem in the bowel could cause this awful pain in my vulva!

Just wanted to share this to be able to help anyone.

I am now awaiting a treatment plan with drugs to supress the immune system and hopefully this will stop all the irritation and swelling.

Living with anything ongoing and long term is definitely a challenge....... but have to keep strong and keep smiling Very Happy

joannebond360

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best to you!

Post  sadone on Wed Dec 28, 2011 8:21 pm

I have a friend with Chrohn's, and he has been able to successfully manage his condition. He has flare-ups and then long periods (years) with no symptoms. So, it makes sense to go on the meds to get your symptoms to calm down. This is what he has done during flare-ups. Just wanted to let you know that once you get the symptoms to calm themselves, you may be able to go off the meds for a while until the next flare-up. Have you been tested (q-tip test) for vulvodynia? Wishing the best for you!

sadone

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Re: Crohn's Disease

Post  joannebond360 on Thu Dec 29, 2011 2:39 pm

Oh wow thats promising! Thank you for that. Heard the same from a few people, didnt realise how many people live with it.

Yes had the q tip test and was ok. The skin is sensitive due to the inflammation and swelling but dont have the pain there when touched like alot of people mention.

Know it wouldnt relate to alot of people on here but i read an article to say that people with conditions and pain there shouldnt rule out Crohn's. I didnt have any bowel symptoms until the last two months just this swelling and inflammation and periods of feeling a bit flu like. Very strange!

joannebond360

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keep us posted!

Post  sadone on Fri Dec 30, 2011 8:01 pm

Hi Joanne, That's really good news that you didn't respond to the q-tip test! I've heard from the pain doc I saw for a while that a lot of these conditions are related, and he thinks are expressed on a certain gene: fibromyalgia, TMJ, vulvodynia, migraines, ibs... just to name a few, so it could very well be that Chrohn's may be intertwined as well. Good advice to get tested for that, if symptoms warrant it. I really hope you get some relief soon, and the meds start to kick in quickly for you. Take care!!

sadone

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Re: Crohn's Disease

Post  joannebond360 on Mon Jan 02, 2012 8:07 pm

Thank you for your advice and support.

Just amazes me how many people are suffering with conditions down there! When i sit in the waiting room at the hospital to see the vulval specialist i cant beleive the amount of people waiting and how long you have to wait for an appointment! Shocked Surely there needs to be more specialists and more recognition! Crazy.....

joannebond360

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Having similar issues

Post  rhiannon75 on Sun Jan 13, 2013 12:26 am

I am finally putting two and two together about the relationship between Crohn's Disease and female health. There are tons of gynecological manifestations, especially if its missed for years like mine may have been.

rhiannon75

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Re: Crohn's Disease

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