Vulvodynia Support
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» Hope to all my suffering ladies
I need advice please.  EmptyFri Oct 23, 2020 12:04 am by ringostarr26

» Please tell me this can get better
I need advice please.  EmptySat Jul 18, 2020 7:38 pm by sammykramer

» By no means cured, but doing much better!
I need advice please.  EmptyMon Mar 16, 2020 1:26 pm by tinkerbelle2

» How I cured my Vulvodynia!
I need advice please.  EmptySat Dec 07, 2019 11:54 am by Millie

» 7 months since the diagnosis
I need advice please.  EmptyWed Aug 14, 2019 2:38 am by agtoronto

» Gabapentin Gel. or other topical creams
I need advice please.  EmptySat Jun 15, 2019 5:22 pm by mary jane

» IMPORTANT FOR UK SUFFERERS
I need advice please.  EmptySat Jun 15, 2019 5:21 pm by mary jane

» Help New Diagnosis
I need advice please.  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!
I need advice please.  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


I need advice please.

5 posters

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Post  EviE°Bee Fri Oct 04, 2013 2:06 am

I need some advice, im really stressed and, frankly, paranoid about this. I have a gyno appt in a few days and I need advice on what I should ask for. My gyno isnt very agressive with treatment, whatever type attitude.

I was never prone to yeast infections but i am now. I seem to get one every other month. I use clotrimazole 1% which causes irritation but it seems to help.

How do i differentiate yeast infections from VV?? with VV there is irritation that feels like lemon or salt was sprinkled on my vulva. With yeast it feels more like a sun burn and it seems to spread up the vulva. All in all very bad feelings.

Ive read that a regimen of diflucan/ fluconizole can cause more irritation. I need to know what others have experienced so i can try something more aggressive.

Thanks thanks thanks.

EviE°Bee

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Age : 40
Location : Southern Cali

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Post  mushroomvisionlala Fri Oct 04, 2013 1:07 pm

if your getting yeast infections every month, it means the infection is still there. Believe me, I know this. Its very common for a women to get a yeast infection every month after or before her period, but once my yeast problem was under control, I didnt get yeast infections anymore around that time. I used to think sex CAUSED yeast infections for me, so I spent the majority of my life either avoiding it, Or only doing it when I felt "good" down there. Now I can do it everyday, five times a day, and not have burning and irritation after, for days after. (not that I do it, that much, LOL Smile

mushroomvisionlala

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I need advice please.  Empty VV, BV, yeast

Post  mushroomvisionlala Fri Oct 04, 2013 1:09 pm

VV, BV, and yeast are all similar, so its hard to tell

mushroomvisionlala

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Post  EviE°Bee Fri Oct 04, 2013 5:48 pm

Im leaning more towards yeast because the clotrimazole works, just not good enough.

What do you use to get rid of it?

Whenever they test me, all negative cultures, tissue looks normal.

EviE°Bee

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Post  Leslieg Fri Oct 04, 2013 7:25 pm

Evie cod you be allergic to something? What soaps are you using?

Leslieg

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Post  Alana3 Fri Oct 04, 2013 7:29 pm

I mean yeast typically itches smells like crap and has a white clumpy discharge and bv usually has a disgusting discharge do you have any of that and are they actually sending it out to a lab or juat looking and saying yeast?

Alana3

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Post  EviE°Bee Fri Oct 04, 2013 8:58 pm

I had a yeast infection for 8 months, the dr couldnt figure it out. No discharge, no foul smell, no normal yeast symptoms. Dr thought it was dermatitis, It turned out to be a yeast infection.

The current symptoms im having feels like it did during those 8 months, and it makes VV symptoms feel worse.

I use dove sensitive skin bar. No frarance. Its the only soap that doesnt irritate me. Im sensitive to everything.

Im gonna have the dr check on monday but i need to know if nothing shows up on the culture or visually, what should I ask for? I get an appt every 3 months, I wanna make it count :-\

EviE°Bee

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Post  Leslieg Fri Oct 04, 2013 10:08 pm

Keep searching. We can beat this. I asked about allergies because I just had the North American patch series allergy test. They test for chemical irritants. I switched to dove sensitive skin care bar soap 5 years ago after a stubborn yeast infection. Yeast gone but symptoms stayed. My docs said to stop using dial antibacterial because it can disrupt vaginal flora. This made sense to me so i made the switch.
I got the results from my allergy testing yesterday and come to find out I had one significant allergic response (out of 100+). The chemical is cocamidopropyl betaine . It's the 2nd or 3rd ingredient in dove sensitive skin soap and in my shampoo as well. I have mild itchy scalp at times but nothing more. I do however have daily vulvar sx sometimes mild sometimes horrific. I have survived with lidocaine for many years.
I've obviously stopped using the soap and shampoo. The doctor said it can take 6-8 weeks to heal if this is the cause. I'm hoping I will heal. I'll keep you posted. I was astonished that it would take that long to heal. In the paperwork they gave me it stated that it can take 3-6 months if exposure was heavy. I've been using the soap for 5 years. I tried to use minimal soap but that was always hard for me. Maybe that's why my symptoms varied in intensity. The long healing period makes it so difficult to rule out allergies on our own. I realize its difficult to get allergy testing done. I was lucky my doctor referred me and my insurance covered it. I hope my story will help someone. I'll let you know if I feel better in time. For years I thought I had lichen planus so I never pursued much treatment but homeopathy and steroid ointments. my foctor now days i font have ghat. Smile))Love and healing to all the ladies here.....

Leslieg

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Post  Leslieg Fri Oct 04, 2013 10:10 pm

iPhone autocorrect.....ugh! Smile)

Leslieg

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Post  EviE°Bee Sat Oct 05, 2013 2:00 am

Wow! So what soap do you use to wash yourself now?? I shampoo my hair upside down because i figured it would cause irritation from the perfume alone.

EviE°Bee

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Post  Leslieg Sat Oct 05, 2013 2:19 am

I just bought cetaphil gentle cleanser. It comes in a bar version. This is still all so new.... The new soap is weird but ill try anything at this point. I also wash my hair upside down. It was very difficult to find shampoo without the ingredient. It seems to be in everything. Thankfully many conditioners don't have it. I'm trying to remain positive but trying not to get my hopes up. The doctor said she wasn't sure if this was the answer but it definitely wasn't helping matters. I'm in prayer mode now. Wait and see I guess. I had a mild week for symptoms but suddenly feeling not so good which bursts my bubble for sure. I hope you find answers soon. Never give up. I'll keep you posted. I forgot to mention that the doctor does give a huge list of products that are safe to use.

Leslieg

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Post  EviE°Bee Sat Oct 05, 2013 2:50 am

Oh poor baby :-( i understand. Are you on any meds??

I would imagine the soap is probably not too bubbly. What sucks is everything is a factor. Its hard to pin point the irritant. Is your bladder or urethra effected at all?

EviE°Bee

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Post  EviE°Bee Mon Oct 07, 2013 6:30 pm

A little update which freaked me out big time. I have been using clotrimazole for 3 days and 10 mins after insertion i felt little pin pricks all over my body. Ive also been experiencing more irritation with the cream. Im confused as all heck. My gyno appt is today, im going to ask for diflucan 150mg but i want her to examine me first of course.

Im either allergic to the creme or my body is warning me that there is something more serious going on.

Ill update after my appt.

Thanks,
Evie bee

EviE°Bee

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Post  EviE°Bee Mon Oct 07, 2013 7:34 pm

A little update which freaked me out big time. I have been using clotrimazole for 3 days and 10 mins after insertion i felt little pin pricks all over my body. Ive also been experiencing more irritation with the cream. Im confused as all heck. My gyno appt is today, im going to ask for diflucan 150mg but i want her to examine me first of course.

Im either allergic to the creme or my body is warning me that there is something more serious going on.

Ill update after my appt.

Thanks,
Evie bee

EviE°Bee

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Post  EviE°Bee Tue Oct 08, 2013 12:08 am

Was given 4 150mg of diflucan, no exam.

Was told there was nothing else she could do as far as VV was concerned. Referred me to different doc who doesn't have a good track record.

I feel crushed.

EviE°Bee

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Post  Leslieg Tue Oct 08, 2013 2:52 am

I'm sorry. There's nothing more frustrating than a doctors appointment that doesn't offer help. How come she wouldn't examine you? Did she offer insight into the pin prick feeling? Hang in there .....answers will come. Have you used clotrimzole before?
I hope you feel relief from diflucan. I'm wondering if she didn't do exam or culture because the medicine would mask the results. Have you seen a vulgar specialist yet?

Leslieg

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Post  EviE°Bee Tue Oct 08, 2013 3:04 am

She said it could be fibromyalgia but she said she was stumped. She said to stop the clotrimazole for 2 days then start again to see if it happens again. She seemed unintereted.

Ive used the cream a couple times before and it never irritated me like this before. Im not gonna use anything right now, im just going to take the diflucan and cross my fingers.

I have to find a gyno that has more experience with VV.

Thanks for responding,
Evie Bee

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Post  EviE°Bee Tue Oct 08, 2013 3:05 am

Muah Les!

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Post  Takver Wed Oct 09, 2013 8:08 am

I use Oliva soap, which is just saponified olive oil, as basic as you can get. It's a brand sold in the UK. I don't know about brands used abroad. I have terribly sensitive skin and it's the only soap I can tolerate, including washes prescribed by the dermatologist.
Takver
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