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New diagnosis, any advice whilst I wait for a specialist

Wed Oct 25, 2017 1:47 pm by Julesyjules


I'm new here and wanted to ask for some advice whilst I wait to see a specialist nurse.

After urinary problems which lasted 7 weeks, I finally saw a urologist, who on examination discovered significant inflammation and called in a gynaecologist, who diagnosed vestibulitis. They referred me to a nurse who specialises in vulvar skin issues. That was 5 weeks ago, and I'm still waiting for the …

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Amitriptyline given for vulvodyina pain

Tue Oct 24, 2017 2:46 pm by katycrawford

Hi there,

After years of being misdiagnosed etc as most women have on this forum I have finally been diagnosed with vulvodynia (yay) and have been given the lowest dose of an antidepressant called Amitriptyline. Has anyone been on this before and has any positive (or negative) news to give me? Im feeling down already and I've only been taking it for a few days, I don't have much hope of it …

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Vulvodynia help

Tue Nov 14, 2017 4:27 pm by Katiej

Hi guys new here and newly diagnosed. So I had bv and then after alot of antibiotics and home remedies I still continued to have weird symptoms despite swabs being negative. Two seperate gynes have told me I have vulvodynia as a result of the area being overwhelmed. So first gave me lidocaine which xidnt do much. No I am on amitriptyline for the past 5 days. Seems to be kicking in a little (im a …

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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 …

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Newly diagnosed

Tue Oct 10, 2017 8:37 pm by Brevispink

Hello everyone. I have recently been diagnosed with unprovoked vulvodynia and would really appreciate some advice and support. I have had a chronic urine infection for 16 months and was on antibiotics for 9 of those months. I have been very uncomfortable for the entire time, but now I have absolutely unbearable stinging and burning all day with itching too. The infection has just about gone, …

Comments: 9

Recent "Poke" Pain - So Confused/Losing My Mind

Thu Oct 12, 2017 9:26 am by kelseybeth23

Long Story, but I am losing my mind and getting really depressed, so if I tell the full story maybe someone can help me.

Back in August I started to get an itch down there. Normally, in the past, when this would happen, I would change the way I wore my clothes, take more baths instead of showers, and use Monistat. This time, after about two weeks of no relief, I started to get concerned. I was …

Comments: 5

Does anyone else experience this?

Sat Oct 14, 2017 5:21 pm by Angelmegs

Hi— im new here. Im incredibly desperate so if anyone has any suggestions i would greatly appreciate it. Im a 20 year old female with vulvodynia and vaginismus. I was on the birth control pill (junel fe lo estrin) from age 13-18 because of severe menstrual pain. I used the xulane patch for a few months when i was 18 but eventually stopped BC altogether because it interferes with my med for …

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Post Full Vestibulectomy - 5 Years Later - Please Read

Tue May 02, 2017 6:18 pm by jen007

Hi All,

It's been awhile since I've written a new topic on the forum. Wondering if any of the same ladies are still here. I've come back to update you all on my post vestibulectomy results. I can't remember if I've done an update on my current state, so forgive me if this is repeated information... I can't remember how to view my old posts! Anyway, let me get on with my update.

For 4 years post …

Comments: 4

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

Fri May 27, 2016 6:50 am by Lucci


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

Crohn's Disease

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Crohn's Disease

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

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


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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!


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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!


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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!!


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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.....


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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.


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Re: Crohn's Disease

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