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» Finally found a place for me...
Today at 4:08 am by mtsp

» UK Vulvodynia Clinics
Yesterday at 9:58 am by katycrawford

» 8 years and struggling
Thu May 17, 2018 11:22 pm by Kezz

» Vestibulectomy recovery question!
Thu May 17, 2018 11:11 pm by Kezz

» Gabapentin Gel. or other topical creams
Thu May 17, 2018 11:55 am by Rosie21

» What has been helping ME (much less pain over time!!)
Wed May 16, 2018 3:43 am by leoscc

» There is hope after all!!
Wed May 16, 2018 2:50 am by Cbrimer28

» Getting to the point of wanting to End Everything ADVICE NEEDED
Mon May 14, 2018 6:49 pm by fairlight10

» Looking for advice!
Thu May 10, 2018 8:50 pm by KB365

Gabapentin Gel. or other topical creams

Thu May 10, 2018 9:43 am by Rosie21

Hi I have been suffering for some years with this abominable pain. I have tried most of the systemic drugs , I asked specialists and Doctors if I could at least try a topical treatment but because this requires a special prescription have been refused Has anybody had a chance of trying these? Thank you I will try to put a link on to some of the research into Gabapentin Gel. Thanks.

Comments: 1

What has been helping ME (much less pain over time!!)

Wed May 16, 2018 3:43 am by leoscc

Hello everyone! I vanished for quite some time as my life became consumed by not only this but other daily responsibilities as well. Shortly after my diagnosis, my boyfriend f 3 years left me as he did not want to deal with this. It left me broken for a while but also gave me time to figure out what the heck was going on. So, I will write out a quick list of my symptoms and what helped me.

1. I …

Comments: 0

I cured myself 100% of vulvodynia twenty years ago--I hope this helps someone

Mon Mar 12, 2018 4:33 pm by totallycured

Hi,

Every so often I'm reminded of the constant, persistent, horrible pain I was in two decades ago, and I reach out to try to help others who are suffering. If someone had offered me a solution during that terrible time, I'd have jumped at it. I hope this helps someone.

Yes, I did have terrible vulvodynia. It felt like someone poured acid all over my vulva. My doctor confirmed it and was …

Comments: 4

I'M NEW - Do I listen to my gyno who I feel has it wrong?

Fri Mar 09, 2018 6:17 pm by Tunes25

Hello!

I am a 25 year old woman and wanted to share my story here as I feel frustrated by the suggestions of my gyno and am hoping for some advice.

To give the context for this: in September 2016 I moved in with my long term boyfriend after living abroad a year and (nearly) abstaining from sex. Within a few weeks I had got a yeast infection which I treated myself successfully, but then 2 weeks …

Comments: 5

Condoms Less Painful?

Mon May 07, 2018 3:35 am by stillinpain

I'm just curious, has anyone found using condoms to be less abrasive to the skin than without? I just got off birth control and haven't stretched myself out enough post surgery to try sex yet, but when I do I am wondering how trying it with condoms with affect the sensation. I feel like for me the skin to skin sensation creates pain, not just at my entrance but internally, too, since I also have …

Comments: 0

Will there be an end?

Fri Apr 27, 2018 12:06 am by Krista2828

I go in and out of being okay and not being okay with this condition. I question often why me? I am a problem solver by nature and I feel so defeated that after tons of research and trial and error and doctors and tears that there still is no answer.

I am in my 20's.. it shouldn't be this way.

Id love to know what all has worked! I am willing to try anything to get my life back. I am curious …

Comments: 6

you can be healed so easy and quite fast.

Thu Apr 26, 2018 11:46 pm by pussycat

Hello everyone,
i am new to this forum. I wanted to share my personal "journey" with V with you and to give you a real hope you can be totally healed/recovered from V. Many years ago i was struck with V, it was painful and got worst and worst, eventually i could not sit, could not stand, could not walk, could not swim in a swimming pool anymore. I was becoming bedridden, it frightened …

Comments: 4

Hi Im from Australia :)

Sat Jan 08, 2011 1:08 am by emma

Hi girls... I live in Australia.
I am currently undergoing a new treatment for vulvodynia. Just wondering if anyone else here has tried it. It's Endep in the form of cream to apply directly on the area. I dont know if anyone else has tried this but so far evidently it has had a 50% success rate.
Anyway i feel at a loss. This new treatment is exciting but at the same time i just dont feel like …

Comments: 35

Somebody please help me...

Fri Nov 24, 2017 8:05 am by Andlag

Hey everyone,

since I started being sexually active i often experienced burning in my vagina which was often worse during sex /around the time of my period or when using lubricants. I was never able to use tampons because the one time i tried putting them in it felt like acid was poured on my skin. Fast forward to 2 months ago when I got a UTI and an allergic reaction in my vagina. I thought it …

Comments: 14


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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