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» How I cured my Vulvodynia!
7 months since the diagnosis EmptyYesterday at 11:54 am by Millie

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

» Gabapentin Gel. or other topical creams
7 months since the diagnosis EmptySat Jun 15, 2019 5:22 pm by mary jane

» IMPORTANT FOR UK SUFFERERS
7 months since the diagnosis EmptySat Jun 15, 2019 5:21 pm by mary jane

» Help New Diagnosis
7 months since the diagnosis 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!
7 months since the diagnosis EmptyTue Jun 11, 2019 12:56 am by VVSSufferer

» Vestibulectomy next week in London!! - questions!!
7 months since the diagnosis EmptyWed Apr 24, 2019 8:32 pm by HedvigB

» Dating with Vulvodynia and Vaginismus advice
7 months since the diagnosis EmptyFri Apr 19, 2019 10:25 pm by Tartufo

» Research Participants Needed!
7 months since the diagnosis EmptyThu Apr 11, 2019 2:09 pm by PelvicPainProject

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


7 months since the diagnosis

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7 months since the diagnosis Empty 7 months since the diagnosis

Post  agtoronto on Tue Aug 14, 2018 11:43 pm

Hi everyone,

About 8 months ago, after going on antibiotics for a chest infection, I started to have signs and symptoms of a yeast infection. I don't get yeast infections often, but usually some over the counter antifungal cream helps to clear the infection. This time around however, I went for an Walgreens brand Miconazole 3 day therapy (higher strength drug) because I didn't want to deal with messy creams for 7 days. Man was that ever a terrible idea. An hour after inserting the cream I had THE worst vaginal burning/pain I have ever experienced. I tried washing myself and using ice packs, but the pain persisted. I went to the doctor and they diagnosed me as having bacterial vaginitis, gave me a prescription for metronidazole, and sent some swabs to the lab to rule out other infections. All my tests for infections came back negative and meanwhile I had some relief while on the metronidazole. After finishing the medication however, the discharge came back and so did the discomfort. I went back and received metrogel instead but nothing seemed to help. Some days its barely noticeable, others I feel like I can't sit down for more than 10 minutes at a time because of the pain and irritation. Its worse when I am stressed out, when I wear tight clothing, and when I eat spicy food (the pain will radiated into my thighs!).Since then I have seen another doctor who repeated all the vaginal culture and STD swabs, all still negative. She told me that the chronic pain I was having was likely vulvodynia. I haven't taken any medications for the pain since finding out about the diagnosis because I wanted to hold off unless it became unbearable. But I really don't know what else are options at this point. I can't use tampons anymore, if I wear a pad for too long I also get irritation, and sex is completely out of the picture. Has anyone else had a medication/antifungal chemical irritation that lead to the onset of their symptoms?

agtoronto

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Join date : 2018-08-14

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7 months since the diagnosis Empty Hi there!

Post  Gaby on Thu Aug 16, 2018 9:09 am

Hi Agtoronto,

My vulvodynia also started after several yeast infections. I've started with the non stop pain 6 months ago.
I've tried almost everything, i am currently on gabapantine cream 2 times per day. The first week of use it seemed to work (i even had painless sex!!) but maybe that was the placebo effect because now i have pain during sex and at this right moment i am sitting at my work place with an incredible pain!! Sad Sad .

I have also troubles with my urethra, every time after peeing i get an awful pain on my bladder, do you experience this too?

I am going back to the Gyne in the beginning of september, so i hope he can do something for me.
I am 34 years old an i am also trying to get pregnant, so this is really frustrating arghhh..

Hope you have better luck finding the correct treatment for you.

Greetz,
Gaby.

Gaby

Posts : 8
Join date : 2018-07-10

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7 months since the diagnosis Empty Re: 7 months since the diagnosis

Post  Macco on Wed Aug 22, 2018 6:52 am

Hi,

My vulvodynia pain started similar to both of yours. 10 months ago, I had a sore throat and was given antibiotics which gave me a yeast infection. I was diagnosed with a yeast infection and then a bacterial infection when the yeast infection medication did not help. I was tested for bacteria/STDs/yeast and it's all negative. I've used cream steroids, vaginal Valium, physical therapy, and gabapentin but nothing is working. I'm currently in a study for vulvodynia in which I'm receiving acupuncture but acupuncture is so painful! I'm so hopeless at this point. The pain is just becoming worse and I cannot have sex or use tampons anymore.

Thanks for listening,
Macco

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Macco

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7 months since the diagnosis Empty Re: 7 months since the diagnosis

Post  flower74 on Fri Aug 24, 2018 12:32 pm

Hello Agtoronto,

My symptoms also started after taking Flagyl for 12 days. I went in for a routine pap smear in December 2017 and was called two weeks later and told I had BV and need to take anti-biotics. I had no symptoms of BV. There was nothing wrong with me at the time of the pap. Within 24 hours of taking the fist Flagyl I developed this unbearable burning in my vagina. To make an incredibly long story short here I am almost 9 months later with this on again off again vaginal burning. I never go more than a week without a flare-up. I've been tested for STDs, yeast, BV, UTIs multiple times and nothing ever comes back positive.

I feel like my life revolves around my vagina. I am absolutely convinced this is the result of some kind of chemical reaction/irritation that has created a chronic inflammation.

flower74

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Post  Lovelyrey31 on Tue Aug 28, 2018 6:14 am

Miss agtoronto. I had the same situation. But my doctor diagnosed me chemical burn/injury.... Just stop anything u are using. Do u experience irritation during mens? Using lubricant which make u feel numb? It is on the skin injury from chemicals...

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Lovelyrey31

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Post  flower74 on Wed Aug 29, 2018 11:17 am

Lovelyprey,

I was also told by one doctor if was a chemical burn. What are you doing to treat or manage your symptoms. How long were you told it would take to heal? It's been 9 months the and sometimes I feel like it's never going to get better.

flower74

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7 months since the diagnosis Empty Very similar to my Story

Post  Grateful1 on Sat Sep 08, 2018 8:51 pm

Early summer 2016 I started having a burning sensation, similar to a bacterial infection. I had been prone to bacterial infections since having an IUD put in years before. I called my family doc and she called in a prescription for the bacterial infection. Fast forward a week and the symptoms are getting worse, not better. She does a swab and doesn't see any bacterial infection or yeast infection. She recommends I try something topical like Lotrimin and see if it helps. I do that-no help so right before July 4th, I got in to see my gynecologist. She swabs and says I now have a yeast infection and that maybe treating the bacterial infection (which I now think I never even had) kicked off the yeast infection. This cycle kept going-treating a yeast infection, then bacterial until eventually I tested positive with an infection called DIV-Desquamative Inflammatory Vaginitis-where the good bacteria has all been killed and nasty bacteria like Staph and Strep take over. Treated that for 4 long weeks, but the burning, itching pain and inability to sit comfortably was not improving. Gynecologist (Nurse Practitioner) still telling me that since i had a bad infection it would take time to get over it. Decided to have a 2nd opinion. Saw another Nurse Practitioner in Gynecology at a different hospital who specialized in Vulvar Pain. At our first meeting I told her my entire history, how many rounds of treatment I did for yeast, bacteria, then the DIV. She doesn't think I had any infection to start with. She thinks I had Vulvodynia from the beginning and then all the treating the infections caused the vulvodynia to get much worse, which caused my depression and anxiety to get worse, which made my vulvodynia more painful. Vicious cycle. She immediately put me on an antidepressant and started a topical steroid and increased my Gabapentin. That was in October. I also started seeing a holistic doctor in December who set me up with supplements and started accupunture. My gynecologist also added in low dose Naltrexone which has been shown to help with nerve pain in other medical conditions. So, I am writing to share my story, but also writing to give everyone hope. By March/April 2017 I was starting to feel better and was able to sit with less discomfort. By summer of 2017 I was feeling well enough to begin exercising again. I still (2 years after diagnosis) have some discomfort, but I would all it more of an irritation rather than the burning pain and no pain upon sitting. Exercise, especially when it's hot out, seems to be the thing that causes the most irritation. I am still on the anti depressant, low dose naltrexone and a topical Lidocain as needed. I no longer do accupuncture (very expensive!) but I think it played a big part of my stress reduction as well as doing mental health counseling at the same time. My goal is to try to manage my stress levels and keep this horrible condition from every coming back. It caused my severe depression and suicidal thoughts. I didn't think there was an end in site. So, if you are still suffering-please have hope. I think it just takes finding the right combination of medicines and stress relief.

Grateful1

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Post  agtoronto on Mon Sep 10, 2018 4:11 am

Lovelyrey31 wrote:Miss agtoronto. I had the same situation. But my doctor diagnosed me chemical burn/injury.... Just stop anything u are using. Do u experience irritation during mens? Using lubricant which make u feel numb? It is on the skin injury from chemicals...

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I believe since all the tests were negative that the chemical burn is what lead to my continuing symptoms. And yes! I have irritation during my menses, its really irritating to just wear panty liners. I dont know when I will ever be able to use tampons again Sad

agtoronto

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Post  agtoronto on Mon Sep 10, 2018 4:15 am

flower74 wrote:Hello Agtoronto,

My symptoms also started after taking Flagyl for 12 days.  I went in for a routine pap smear in December 2017 and was called two weeks later and told I had BV and need to take anti-biotics.  I had no symptoms of BV.  There was nothing wrong with me at the time of the pap.  Within 24 hours of taking the fist Flagyl I developed this unbearable burning in my vagina.  To make an incredibly long story short here I am almost 9 months later with this on again off again vaginal burning.  I never go more than a week without a flare-up.  I've been tested for STDs, yeast, BV, UTIs multiple times and nothing ever comes back positive.

I feel like my life revolves around my vagina.  I am absolutely convinced this is the result of some kind of chemical reaction/irritation that has created a chronic inflammation.  

Im so sorry to hear you have been going through the same thing. I too have on and off flare ups every week still, mostly during high stress times and always during my period. And I understand when you say that you feel like your life revolves around your vagina. Can't go swimming during menses because I can wear tampons and haven't even thought of dating in months just because I know there isnt even the possibility of intercourse anytime soon. Fingers crossed for you to feel better soon!

agtoronto

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Post  agtoronto on Mon Sep 10, 2018 4:19 am

Macco wrote:Hi,

My  vulvodynia pain started similar to both of yours. 10 months ago, I had a sore throat and was given antibiotics which gave me a yeast infection. I was diagnosed with a yeast infection and then a bacterial infection when the yeast infection medication did not help. I was tested for bacteria/STDs/yeast and it's all negative. I've used cream steroids, vaginal Valium, physical therapy, and gabapentin but nothing is working. I'm currently in a study for vulvodynia in which I'm receiving acupuncture but acupuncture is so painful! I'm so hopeless at this point. The pain is just becoming worse and I cannot have sex or use tampons anymore.

Thanks for listening,
Macco

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Hi Macco,
Im so sorry to hear the struggle you have been going through. Sounds like you have tried quite a lot of different options. Nothing has helped too greatly for me either except for eating low sugar and trying to keep my stress levels down. I think seeing my naturopath has also helped me but I still continue to have pain and havent used a tampon in months. I hope that something works for you soon. Don't give up hope!

agtoronto

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7 months since the diagnosis Empty Turns out my pain was secondary to an allergy?

Post  agtoronto on Wed Aug 14, 2019 2:38 am

So after multiple swabs for infections coming back negative and seeing multiple doctors, I finally was able to see a gynecologist who specializes in the labia and vulva. He told me the irritation and description of pain looked more like a systemic allergic reaction to something. He had me start taking 20mg of Reactine (antihistamine) and after 1 week of taking the Reactine nightly my symptoms decreased by 95%!! I eliminated all potential allergens as well (scented laundry detergents, switched to 100% cotton pads, scented body soaps). I discovered that Allergic Vaginitis is a thing! Basically the tissues in your upper respiratory tract are similar in structure to the mucosal tissue of the vagina/vulva and if you eat something or even inhale a potential allergen, much like the runny nose, burning throat, and irritation you get in your sinuses and throat, can appear vaginally. The stinging, raw feeling has subsided greatly and I find if I eat something im not supposed to, it will flare up. Im now down to taking 10mg daily of Reactine and most days of the week I have little to no symptoms. I would highly recommend that anyone else with this type of pain and irritation consider the possibility of an allergy being present!

agtoronto

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