Vulvodynia Support
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    » Hope to all my suffering ladies
    Crohn's Disease EmptyFri Oct 23, 2020 12:04 am by ringostarr26

    » Please tell me this can get better
    Crohn's Disease EmptySat Jul 18, 2020 7:38 pm by sammykramer

    » By no means cured, but doing much better!
    Crohn's Disease EmptyMon Mar 16, 2020 1:26 pm by tinkerbelle2

    » How I cured my Vulvodynia!
    Crohn's Disease EmptySat Dec 07, 2019 11:54 am by Millie

    » 7 months since the diagnosis
    Crohn's Disease EmptyWed Aug 14, 2019 2:38 am by agtoronto

    » Gabapentin Gel. or other topical creams
    Crohn's Disease EmptySat Jun 15, 2019 5:22 pm by mary jane

    » IMPORTANT FOR UK SUFFERERS
    Crohn's Disease EmptySat Jun 15, 2019 5:21 pm by mary jane

    » Help New Diagnosis
    Crohn's Disease EmptySat Jun 15, 2019 5:07 pm by mary jane

    » 6 days post Vestibulectomy - Is this normal?? please tell me about your postop healing process!
    Crohn's Disease EmptyTue Jun 11, 2019 12:56 am by VVSSufferer

    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: 2

    Putnams 'bony parts' cushion or Putnams 'Dr Huff' cushion - which is best?

    Sat Aug 01, 2015 4:17 pm by Fielder

    Hi everyone,

    I'm a newbie.  I live in the UK.  

    I'm trying to work out the best cushion to get for my vulvodynia.  I suspect that I could have pudendal nerve involvement (the aching and burning pain is from vagina to clitoris) and I have rectocele and some tailbone pain too.

    I have seen some good reports on older threads regarding the Putnams pressure relief cushions....with some ladies …

    Comments: 11

    An absolute success story- please read!

    Fri Mar 08, 2019 10:57 pm by Persevere1990

    Dear All,

    I posted on here back in March 2017 having just got a diagnosis of vulvodynia after a few months of relentless and acute pain. I was desperate, I was hurting, I was scared I would never know life without pain there again.

    I tried creams, acupuncture, numbing gels, frozen pads, baths with various internet recommended concoctions- convinced myself I had lichen sclerosus, herpes, thrush- …

    Comments: 0

    I'm sorry im rambling

    Thu Feb 21, 2019 5:49 am by Jet227

    hey, im 19, ive been struggling with this almost a year. The first week I became itchy I went in to check about a yeast infection another week later. I have been to 10 different doctors a total of about 15 appointments for this problem for the past 11 months. I have been tested for everything including having a biopsy. I was first told basically to just go home and use hydrocortazone, then I went …

    Comments: 1

    New member need advice please

    Thu Feb 28, 2019 11:33 pm by PANDORA123

    Hello, I have just been diagnosed with unprovoked vulvodynia. Im really scared and worried. It burns a lot and it hurts to sit down. I have been prescribed amitriptyle 10mg. Can anyone give me some hope that I can get better from this condition. Feeling low and depressed.

    Thanks

    Comments: 5

    MonaLisa Touch

    Fri Feb 08, 2019 7:35 pm by rl2091

    Hi All,

    I'm wondering if anyone has any experience with the MonaLisa Touch treatment for Vulvodynia? My pain started when I went on HRT(pill) for anxiety mainly and my pain abruntly stopped when I stopped HRT. However, when I started on the HRT patch (at my dr's suggestion), the pain returned and has never left. That was 7 years ago. I found MonaLisa Touch on the internet purely by accident …

    Comments: 3

    Diagnosed Recently

    Tue Jan 08, 2019 3:55 pm by flissyg

    Hi All,

    I’m so glad I’ve found a place where there are others who understand how I feel!

    So this is my story:-

    I’m 36,  and 4 months ago, whilst innocently sitting in bed reading I experienced a very sharp stabbing pain in my clitoris. It last only a few minutes and then subsided as quickly as it came on. It put it down to “one of those things”.  The following morning I woke up …

    Comments: 4

    New and need advice and help

    Wed Dec 05, 2018 3:26 pm by Cin124

    Hi everyone,

    About three months ago, I started having vaginal and vulval itching. Then, about two months ago, my vulva started to feel painful and look swollen, so I went to the doctor. I was tested for herpes, chlamydia, and gonorrhea which all came back negative. I also had to do a vaginal swab test and the only thing that came back positive was yeast infection. I was prescribed hydrozole …

    Comments: 6

    New here would very much appreciate advice at the end of my rope

    Wed Jan 09, 2019 9:09 pm by Jma990o

    This might be a little long but it's been such a long time I've even been able to talk about my problems openly thank you in advance for any helpful advice.
    So ok I'm 24 I've been having this problem for over two years seen quite a few doctors and obgyns alike and nobody will take me seriously I have had a few utis and yeast infections and even bv once and this all started after one of the utis …

    Comments: 3


    Crohn's Disease

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    Post  joannebond360 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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    Post  sadone 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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    Post  joannebond360 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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    Post  sadone 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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    Post  joannebond360 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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    Crohn's Disease Empty Having similar issues

    Post  rhiannon75 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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