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» 7 months since the diagnosis
Desperate for help - Need some support with this condition - driving myself mad!  EmptyWed Aug 14, 2019 2:38 am by agtoronto

» Gabapentin Gel. or other topical creams
Desperate for help - Need some support with this condition - driving myself mad!  EmptySat Jun 15, 2019 5:22 pm by mary jane

» IMPORTANT FOR UK SUFFERERS
Desperate for help - Need some support with this condition - driving myself mad!  EmptySat Jun 15, 2019 5:21 pm by mary jane

» Help New Diagnosis
Desperate for help - Need some support with this condition - driving myself mad!  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!
Desperate for help - Need some support with this condition - driving myself mad!  EmptyTue Jun 11, 2019 12:56 am by VVSSufferer

» Vestibulectomy next week in London!! - questions!!
Desperate for help - Need some support with this condition - driving myself mad!  EmptyWed Apr 24, 2019 8:32 pm by HedvigB

» Dating with Vulvodynia and Vaginismus advice
Desperate for help - Need some support with this condition - driving myself mad!  EmptyFri Apr 19, 2019 10:25 pm by Tartufo

» Research Participants Needed!
Desperate for help - Need some support with this condition - driving myself mad!  EmptyThu Apr 11, 2019 2:09 pm by PelvicPainProject

» Does anyone else have Endometriosis?
Desperate for help - Need some support with this condition - driving myself mad!  EmptyMon Apr 08, 2019 7:54 am by Jo44

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


Desperate for help - Need some support with this condition - driving myself mad!

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Post  JS007 on Tue Dec 15, 2015 1:53 pm

Hi, I am really keen to see if anyone can help me or give me some comfort!! I have finally been diagnosed with Vulvodynia after 5 months and have been put on Amitriptyline by the gyneo - at least she new about the condition when all the swabs came back negative!!! My trigger appears to be when I go to the toilet, after I have been for a wee or a BM the whole area starts kicking off!!! I feel like I have nappy rash and issues near the opening to urethra? Has anyone else experienced this??? I don't know what to do, such a normal function is becoming a nightmare for me...I just want to feel normal again?! I am on 40mg of A and have been told to increase gradually - does anyone know what the right dosage should be??
I am very anxious and have sadly been depressed over worrying what all of this is about - I just want it to stop and not be in discomfort everyday either waiting or going to the toilet! thanks Smile

JS007

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Post  PainBlogger on Tue Dec 15, 2015 3:45 pm

My main trigger is emptying my bladder (and sometimes emptying my bowels triggers the urethral irritation also). Not only do I often get pain, my bladder doesn't empty very well and it takes ages. I always try to make sure I drink loads of water and/or herbal (non-fruit) tea so that when I do go, there is always plenty to flush through and it's more dilute. Have you tried rinsing with cool water after emptying? Have you cut out all possible triggers for bladder and urethral irritation (such as caffeine, fizzy drinks, citrus fruit juices, acid foods like vinegar, artificial sweeteners, alcohol, and even decaf tea and coffee)? Some people find a low oxalate diet helps. Also sitting in a bath (or portable bidet - you can get these on Amazon and they sit on the toilet so you don't have to fill a bath) with sodium bicarb/baking soda or Epsom salts can help. My doctor told me to use Oilatum bath emollient in the bathwater - I get the kids one as it is fragrance free - again, 600ml bottle from Amazon works out cheapest.

As far as the right dosage of amitriptyline - it depends on the doctor and on how you get on with it. Anything from 10mg/day to 75mg/day is quite common for pain. My doctor wanted me to go up to 50mg but I had to stop it at 30mg/day as I got palpitations (but I'm on various other drugs that make side effects more likely). Ideally, you want to be on the highest reasonable dose that you can tolerate but the lowest dose that helps - if that makes sense.

PainBlogger

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Post  sarisbaris on Thu Dec 31, 2015 6:18 am

Please read my post in the 'vulvodynia info' forum titled 'cured from vulvodynia...' My trigger was different and when it flared last I was pregnant so the docs couldn't give me much because it would harm the baby. This forced me to keep looking for an alternative doc who finally fixed it. I've been pain free ever since and was able to give birth to my son without complications. I'm so sorry you're going through this. Please read my post.

sarisbaris

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Post  sarisbaris on Thu Dec 31, 2015 6:19 am

Although I did have constant urinary tract infections along with the vulvodynia that she fixed as well. FML. I've been pain free since then. Let me know if you have any questions.

sarisbaris

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