Vulvodynia Support
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» Hope to all my suffering ladies
I am cured - Lyrica helped!!! EmptyFri Oct 23, 2020 12:04 am by ringostarr26

» Please tell me this can get better
I am cured - Lyrica helped!!! EmptySat Jul 18, 2020 7:38 pm by sammykramer

» By no means cured, but doing much better!
I am cured - Lyrica helped!!! EmptyMon Mar 16, 2020 1:26 pm by tinkerbelle2

» How I cured my Vulvodynia!
I am cured - Lyrica helped!!! EmptySat Dec 07, 2019 11:54 am by Millie

» 7 months since the diagnosis
I am cured - Lyrica helped!!! EmptyWed Aug 14, 2019 2:38 am by agtoronto

» Gabapentin Gel. or other topical creams
I am cured - Lyrica helped!!! EmptySat Jun 15, 2019 5:22 pm by mary jane

» IMPORTANT FOR UK SUFFERERS
I am cured - Lyrica helped!!! EmptySat Jun 15, 2019 5:21 pm by mary jane

» Help New Diagnosis
I am cured - Lyrica helped!!! 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 am cured - Lyrica helped!!! 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 am cured - Lyrica helped!!!

+8
Jo44
OBRN2007sms
sadone
sgw11
Jacky51
Sarah001
tinkerbelle2
Donna84
12 posters

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I am cured - Lyrica helped!!! Empty I am cured - Lyrica helped!!!

Post  Donna84 Thu Oct 03, 2013 9:24 pm

LYRICA HELPED!
I would like to share my story and try to help some women who also have this terrible disease. My vulvodynia started after I contracted Chlamydia from my first boyfriend, at the age of 20. I was treated for a different types of diseases, fungi, bacterial vaginosis…but there was no treatment which could help me on a long term basis. And I had a constant itching and burning. It lasted for years, with small periods of relief. But my sex life almost diminished. I did not have a firm relationship since then and did not enjoy sex, although I had it from time to time, thinking that maybe my problem is psychological and that it will go away by ignoring it. But it never did. And I forgot I am women.
At the peak of my depression, due to some other negative things which happened to me recently, I was hit by a car and was completely equivocal about will I live or die. Can you imagine that! So I decided to go to a psychiatrist. Previously I also tried this, and different tryciclic antidepressants and Tegretol, but it never gave any results concerning my vulvodynia or depression. I was sleepy, tired and still sore and itchy. This time, I did a research of my own. I talked with psychiatrist for an hour and she gave me escitalopram for depression and Lyrica (pregabalin) for vulvodynia. I started only with escitalopram. And depression went away…life gained meaning again and world was full of colors. I regained belief in people and world and hope that things will get better. But vulvodynia remained. Then I tried LYRICA. With the first pill of 75mg…it almost went away completely!!! I was so happy!!! Now I am 3 weeks on the minimum dose, no side effects and without pain!!! So try it out, nothing to lose and much to gain. I feel like a women again and look forward to sex!! Smile Keep trying and don’t lose faith! Try nerve pain medications – you have nothing to lose. I also had chronic pelvic pain which vanished with Lyrica as well!!!! I am so happy now. 

Donna84

Posts : 3
Join date : 2013-10-03

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Post  tinkerbelle2 Sat Oct 05, 2013 11:59 am

Glad to hear it! What is Lyrica and how do you get hold of it?

Belle
tinkerbelle2
tinkerbelle2

Posts : 303
Join date : 2013-09-28
Age : 31
Location : Brighton, England, UK.

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Post  Sarah001 Sat Oct 05, 2013 12:55 pm

I take Lyrica however I'm on 450mg a day which only helps the widespread burning and not the soreness and rawness. In the UK it's also referred to as Pregabalin and it is precsribed by any doctor however it is expensive and usually here they try you on Gabapentin first as it's much cheaper. Both are anti-convulsants and used for pain of the nerve variety.
Sarah001
Sarah001

Posts : 1164
Join date : 2010-06-11
Age : 50
Location : UK

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Post  Donna84 Sat Oct 05, 2013 4:54 pm

Sarah001 explained it very well. My doctor gave me a prescription which enabled me to get the med for free, otherwise, it is expensive in my country (East Europe) as well. Yes, it helps mostly with general burning, however, for me it was a small miracle. My never properly diagnosed pelvic pain - stopped, as well as the vulvar burning. I am very satisfied for now. But it doesn't help if I get bacterial vaginosis or a yeast infection of course, however with Lyrica, after use of proper vaginaletes, I feel healthy. Before Lyrica I used tons of medicines and nothing helped, I always had burning...

Donna84

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Join date : 2013-10-03

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Post  Jacky51 Tue Dec 10, 2013 11:40 pm

Hi Lyrica worked for me as we'll. 3 months of hell before I saw a pain consultant but within 48 hours the pain had completely gone. I no longer take it and thankfully the pain hasn't returned. Made me put on weight which I am finding hard to lose, but it gave me my life back x x

Jacky51

Posts : 18
Join date : 2010-11-15
Location : East London

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Post  Jo44 Mon Feb 16, 2015 9:02 am

I know this is an old post but I hope someone will answer my question, I started pregabalin last weds, so been on it for 5 nights. The burning I had experienced had gone several weeks ago but I am left with the redness & it's very sore below. I did have two/three days last week with no pain at all. I'm also using Dermovate cream twice a day but not sure if it's doing anything! I'm also on Amitriptilyne 50mgs which my Gyni wants me to slowly wean off.
What have you ladies found helps the soreness? Did you have it aswell as the burning?

I have bicarbonate of soda baths, wear cotton pants, never use perfumed things below & use sensitive washing powder.

I'd really appreciate some help! I see Sarah mentions Pregabalin helping the burning but not the soreness too. How are you now please?

Jo44

Posts : 35
Join date : 2015-02-10

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I am cured - Lyrica helped!!! Empty taking Lyrica; can't stand the side effects!

Post  OBRN2007sms Mon Feb 16, 2015 10:41 pm

I too just started Lyrica 75mg and I am only taking it once a day at night because I can't stand the side effects! I am so tired, dizzy and nauseated. It has helped with my symptoms though and I am able to have sex again. Has anyone else had these side effects and have them eventually go away? I am a RN and cannot work with this foggy brain; luckily I only work one day a week but my week is up and I still feel bad! I am contemplating calling off tomorrow or skipping my dosage which I know I shouldn't do.

OBRN2007sms

Posts : 12
Join date : 2015-02-10
Age : 55
Location : Alabama

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I am cured - Lyrica helped!!! Empty Was on lyrica 300mg, just got off it

Post  sgw11 Wed Feb 18, 2015 4:34 am

I was also on pregabalin (Lyrica) for about 4 months, taking two 150mg tablets per day. I didn't really experience the more common side effects such as fatigue and so on. Unfortunately it didn't change anything for the pain for me and I am now off it, however everyone responds differently so fingers crossed for you! I have been on amitriptyline cream now since my diagnosis of localized provoked vulvodynia (about a year ago), which initially made it go away completely, but after stopping the cream it came back again which is so frustrating. However I am able to have sex with mainly initial pain and minimal soreness after, which is why I am still taking the amitriptyline. Even if the lyrica isn't right for you, there are plenty of more treatment options available so hang in there!

sgw11

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Join date : 2015-02-18

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I am cured - Lyrica helped!!! Empty 300-450 mg of Lyrica

Post  sadone Thu Feb 19, 2015 7:57 pm

I take lyrica too. It keeps me out of pain in everyday activities, but I don't think sex.

I take it for anxiety now. It makes me high and more brave about taking risks like meeting someone new.

I wish it would work for sex.

Then my ex would come back?

sadone

Posts : 53
Join date : 2011-12-12

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I am cured - Lyrica helped!!! Empty taking Lyrica; can't stand the side effects!

Post  OBRN2007sms Fri Feb 20, 2015 5:53 pm

Some of the side of effects have gotten better, I am still nauseated on and off but my generalized symptoms are returning so I know I need to up my dosage which I am afraid will make the side effects worse! I think I will ask my doctor about this Amitriptyline cream I have an appointment on Tuesday. I wish this nightmare would just end all together! No

OBRN2007sms

Posts : 12
Join date : 2015-02-10
Age : 55
Location : Alabama

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Post  Jo44 Mon Feb 23, 2015 2:11 pm

Hi Sadone,

You say the Lyrica helps keep you out of pain in day to day activities. Can you please tell me did you just have burning pain or did you have soreness & redness too? Im on Lyrica too & don't have burning (which stopped before starting Lyrica) but have soreness & redness. I was diagnosed with Vulva Vestibulitis just over two weeks ago. The other thing is I seem to get better spells just before my period starts & will have about a week/ten days of feeling fine but then after my period stops & I start my pills again it seems to start to get sore again!! Has anyone else experienced this?

Thanks Jo x

Jo44

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Join date : 2015-02-10

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I am cured - Lyrica helped!!! Empty lyrica helps me as well but I hate the side effects

Post  BpCookie Tue Feb 24, 2015 3:55 pm

I take Lyrica twice a day. I take 150 mgs twice a day if the burning pain is bad but the side effects are horrible. My concentration is a mess, I can't think, I lose track of time as its ticking away. I also get horrible dry mouth. When my pain isn't as bad I take 100 mgs. Between my surgeries, procedures and Lyrica things are about 50% to 75% better. But all of a sudden its back with a vengeance. I am going crazy with burning and itching. My problem started over 3 yrs ago with horrible burning pain. Now I have burning pain, itching, redness and swelling. I don't know whats going on right now. Need to see my Gyno again to see what other magic tricks he may have.

hugs to all
Cookie

P.S. When I see my Gyno they always ask if a med. student may be in the room. I always tell them that they can bring in the entire class room because every Dr. in Az. has seen my vagina. My vagina gets more attention from Dr.s then my poor husband does.
BpCookie
BpCookie

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Join date : 2012-01-25
Location : Arizona

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Post  Zbrown Wed Feb 25, 2015 11:05 pm

Does medication ever take away the rawness entrance of vagina :/ its not as bad only odd time or start of intercourse or afterwards sometimes areas feel sore as bruised or raw but there not general.burning at a bare.minimum now zz

Zbrown

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I am cured - Lyrica helped!!! Empty Zbrown

Post  BpCookie Thu Feb 26, 2015 3:39 pm

There is one thing that I use before I have sex, its called Lidocaine Ointment USP 5%. You can only get it by prescription. You rub it on the entire area, but not inside, about 15 mins. before you have sex. It will numb the area. Make sure you get the ointment and not the gel. The gel is useless.

Good luck. hugs
BpCookie
BpCookie

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Location : Arizona

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Post  Mariek Tue Mar 10, 2015 3:50 pm

I too use a lidocaine 2.5 and a prilocaine 2.5 cream,
20 minutes before sex. It did work. They are mixed together in the same tube.

Mariek

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Join date : 2015-03-09

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Post  drivenbyambition Sat Mar 14, 2015 4:54 am

I am glad you have found relief. I have been prescribed a similar, but not the same, medicine. I just can't bring myself to take it because there is no long-term studies and can effect fertility. I also wonder how a pill can deal with my extreme redness and irritation. I just don't see that happening.

drivenbyambition

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