Vulvodynia Support
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» Hope to all my suffering ladies
Vulvodynia diagnosis...now what? EmptyFri Oct 23, 2020 12:04 am by ringostarr26

» Please tell me this can get better
Vulvodynia diagnosis...now what? EmptySat Jul 18, 2020 7:38 pm by sammykramer

» By no means cured, but doing much better!
Vulvodynia diagnosis...now what? EmptyMon Mar 16, 2020 1:26 pm by tinkerbelle2

» How I cured my Vulvodynia!
Vulvodynia diagnosis...now what? EmptySat Dec 07, 2019 11:54 am by Millie

» 7 months since the diagnosis
Vulvodynia diagnosis...now what? EmptyWed Aug 14, 2019 2:38 am by agtoronto

» Gabapentin Gel. or other topical creams
Vulvodynia diagnosis...now what? EmptySat Jun 15, 2019 5:22 pm by mary jane

» IMPORTANT FOR UK SUFFERERS
Vulvodynia diagnosis...now what? EmptySat Jun 15, 2019 5:21 pm by mary jane

» Help New Diagnosis
Vulvodynia diagnosis...now what? 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!
Vulvodynia diagnosis...now what? 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


Vulvodynia diagnosis...now what?

4 posters

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Vulvodynia diagnosis...now what? Empty Vulvodynia diagnosis...now what?

Post  Lancslady Wed Jul 04, 2012 6:13 pm

Hi there all!

I am a newbie here as I have just been diagnosed with Vulvodynia. It has been a long journey, and involved some experiences with consultants who are less than helpful.

Initially I was relieved to finally see a consultant who seemed to believe what I was telling her and actually had a 'name' for what I have been suffering. But now I am in the minefield of information and am not sure what to do or where to turn first. I have been prescribed a low dose of Amitriptyline but I am nervous about taking this due to the side affects, what experiences have any of you had with this? I would appreciate any feedback?

I suffer from pain on touch and therefore intercourse. I have been with my partner for 10 years, and we got married this year, which is fab, but our sex life is suffering due to this condition. I am lucky, he is very helpful and understanding but I just want a normal sex life. I have suffered with this for about 5 years, but it has got increasingly worse in the last 2 years - and it is very draining. I suffer from intense burning and aching after intercourse and at times have an unexplained pelvic ache teamed with stabbing pains at other times - not a result of intercourse.

Do any of you have suggestions for help? I have read about the gels that numb the area etc, how useful is this? We are going on our honeymoon next month and I was really hoping to be able to try and have some form of a normal sex life Smile

Please share you advice with me, I would truly appreciate it! Very Happy

Lancslady

Posts : 2
Join date : 2012-07-04
Age : 43

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Post  April lily Wed Jul 04, 2012 8:33 pm

Hi my name is April

I am also fairly new to this forum too but it has been a great help i have gained some really good help, advise and support from it. It just a nice feeling to know that you are not alone feeling this way and can chat and relate to people, it has been very good for me and i really hope it helps you too Smile

I am very similar to you in the symptoms that you have shared.
When i first got diagnosed they started me off on a low dose of Amitriptaline too, i am now taking 75mg. My side affects are very mild i just feel a bit more drowsey at times but it is nothing major. It has controled most of my inner pain whilst having intercorse, it still hurts at times but it has helped the over all pain alot.

I tried the lidocaine 5% gel, i got it prescribed by my Dr. as i have pain out side to even the slightest touch is painful especially around my clitoris area it is awful. It seemed to work for the first few times of using it it really did make a difference, i just appyed it 30 mins before i had intercorse (which isn't very romantic unfortunately it had to be planned! but needs must) So may be give that a try it may work for you and help you.
Although for some reason after a few times of using it it started not to agree with me it felt burning and saw and itchy so i told my Dr. and she gave me a lower percentage i am now using its called Vagisil it has 2% of lidocaine in it, which i find excellent as it helps with soreness and itching after sex too.

Also i use Yes lubricant which i find really good and effective as when i used other lubricants from supermarkets they made me sore and itchy afterwards which wasn't nice.
I buy the disposable applicators which are really handy because it sends the lubricant inside the vagina instead of just around it which i find helps the pain also.
The Yes lubricants are for patients with Vulvodynia it says why it is good for patients etc. on the website we are advised to use the 'water based lubricants' that's what i have and i have had no problem with them i think they are fab!

I hope this has been helpful too you and hopefully some of the products that have helped me will work for you too.

Take Care x

April lily

Posts : 7
Join date : 2012-06-08
Age : 30

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Post  April lily Wed Jul 04, 2012 8:34 pm

PS. Here is the link to the Yes lubricant website if you want to have a look Smile http://www.yesyesyes.org

April lily

Posts : 7
Join date : 2012-06-08
Age : 30

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Vulvodynia diagnosis...now what? Empty Thanks

Post  Lancslady Wed Jul 04, 2012 10:30 pm

Hi April

Thank you so much for you reply and the advice you have given me, it is, as you say, comforting to have a place to discuss this horrid condition and know that people understand.

I am certainly going to try the lidocaine gel and the 'yes' lubricant, it seems a good place to start. I still have concerns about the Amitriptaline, but then I suppose I really can't cope with it much longer so maybe I should try anything available.
I really appreciate your help and ideas, having found this forum from the advise of the consultant I now have lots of reading to do to understand how to try and control things, but just knowing that I am not abnormal and not alone in this counts for so much.

Will keep you informed of progress. Very Happy

x

Lancslady

Posts : 2
Join date : 2012-07-04
Age : 43

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Vulvodynia diagnosis...now what? Empty Amitriptaline

Post  blessed Wed Jul 04, 2012 11:36 pm

Hi there.. after 6 months of unanswered questions and extreme torment, i was diagnosed last week with vulvodynia. the doc said there is no cure, no hope..but he gave me Amitriptaline to try and get some relief. so far its been 4 days and though i have to give it some time to work, its doing a number on the rest of my body. i have terrible headaches, nightmares and i feel drowsy and dizzy during the day though i take it at night...i hope after a while these effects would wear off and the pain would subside.. but time will tell..

blessed

Posts : 10
Join date : 2012-03-09

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Vulvodynia diagnosis...now what? Empty Right there with ya!

Post  jmcmil Sat Jul 07, 2012 4:00 am

Hey, I take Amitryptaline and it does have some side effects, particularly drowsiness. Give it a few days to get into your system and the side effects should go away. Good luck and we are here to support you!

Jackie

jmcmil

Posts : 10
Join date : 2012-06-27
Location : US

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