Vulvodynia Support
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» Hope to all my suffering ladies
Happy Birthday to me! EmptyFri Oct 23, 2020 12:04 am by ringostarr26

» Please tell me this can get better
Happy Birthday to me! EmptySat Jul 18, 2020 7:38 pm by sammykramer

» By no means cured, but doing much better!
Happy Birthday to me! EmptyMon Mar 16, 2020 1:26 pm by tinkerbelle2

» How I cured my Vulvodynia!
Happy Birthday to me! EmptySat Dec 07, 2019 11:54 am by Millie

» 7 months since the diagnosis
Happy Birthday to me! EmptyWed Aug 14, 2019 2:38 am by agtoronto

» Gabapentin Gel. or other topical creams
Happy Birthday to me! EmptySat Jun 15, 2019 5:22 pm by mary jane

» IMPORTANT FOR UK SUFFERERS
Happy Birthday to me! EmptySat Jun 15, 2019 5:21 pm by mary jane

» Help New Diagnosis
Happy Birthday to me! 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!
Happy Birthday to me! 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


Happy Birthday to me!

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Happy Birthday to me! Empty Happy Birthday to me!

Post  Mouse Wed Sep 22, 2010 7:44 am

Well this week I'm getting another birthday. Besides the numbers getting big and scarey (beats the alternative of course) I'm not getting that loving feeling. My husband has been pestering me for present ideas - his training is complete in that area... I just don't give a crap. I don't want parcels (I may change my mind) I just want the achey bits to stop aching so I don't have to double my dose of amitriptylene pale

It took a couple of weeks to get over the dizziness, headaches and spaced out feeling. I'm still as grouchy as a bear. And now I have to do it all over again.

Whinge over!

Mouse

Posts : 303
Join date : 2010-09-09
Location : New Zealand

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Post  jules Sat Sep 25, 2010 5:35 pm

Sorry you're not celebrating your birthday w/out pain. it sounds like you are down and that is to be expected. the idea of sex and wearing sexy things can actually be pretty stressful. have you considered trying something other than Amitrip.? if you are already on it and double it, i would think you probably would not experience the side effects since your body has already adjusted to the meds you're on. i have increased my meds (neurontin and lyrica a few times w/ no added side effects.) my experience w/ meds has been that you experience the side effects when first going on. i have not tried Amitrip for this disorder. however, i tried it several years ago for headaches. i felt like i was a zombie and in a dream for two weeks. i could barely do my job. i went off of it right away. i never had that problem w/ my current meds. However, if Amitrip has helped somewhat, i'm thinking it will help if you increase it.

has it helped at all? if so, how? just curious. hope you could enjoy your birthday a little. king happy birthday!

jules

Posts : 225
Join date : 2010-03-17

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Post  Sarah001 Sat Sep 25, 2010 6:13 pm

I'm now up to 50mg a day of Ami, the first 10mg made me totally woozy for 3-4 weeks but you have to give it a month to see if it will suit you. Going from 10 to 20mg made me woozy again, then 20 to 30mg made me slightly woozy but from 30mg upwards I've been fine. As long as you increase the dose gradually and give it time for side effects to settle in the early days it gets easier to increase it. Unfortunately it isn't working for me as well as I hoped, it removes burning for me but doesn't touch the soreness I get from my inflamed skin so I'll need something else on top of it next appointment I have.
Sarah001
Sarah001

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

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Post  Sarah001 Sat Sep 25, 2010 6:20 pm

Forgot, happy birthday! I didn't celebrate mine at all this year I just felt too shit to care much!
Sarah001
Sarah001

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

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Post  Mouse Sat Sep 25, 2010 10:03 pm

Well I flicked the amitriptylene! Horrid stuff. Out of desperation I went to my GP on Thursday. She said I have the look of someone in chronic pain - good spotting! I now have Gabapentin, I stopped listening when she read out the side effects, they were pretty grim but the first few days have been fine. She also said the twitches I've been experiencing are the bodies response to pain ie being on full alert. Nice to know I thought I was in for something else.

I had a lovely birthday dinner with my friends last night. I still didn't care enough to need parcels from hubby but he's been a wonder through all of this and the illness I had last year, the surgery and every other flaming thing that's come along since. So I consider myself pretty lucky.

Thank you for your responses. It's incredible that ami in such a low dose can be so vile, I wonder how people cope with it as an antidepressent.

Jules, I have generalised unprovoked so I have constant pain which is now settling into a pattern of extreme ugliness at the start of my cycle and in the middle. My resting pain level seems to be decreasing. I was really hopeful this was a good sign but when my period arrived last week I had some of the worst days to date. So who knows??? Sarah, I'm sorry you didn't celebrate your birthday I know what you mean about not caring, after kicking the ami I seem to have come out of a fug and hopefully will find my happy place??????

I managed to find quite by accident a really lovely specialist who doesn't think I'm mad - huge bonus there and I have a great GP who has also seen vulvodynia before. My therapist is keen to get active in helping women find solutions faster. I guess I was pretty lucky with only being treated like a fool and ignored for about 4 months I know it's not that way for everyone. My specialist did her thesis on vulval pain, she's in another city but was well worth the added stress and expense of having to travel to see her. She is so confident these drugs will work I would hate to disappoint her! It was bloody government regulations that said I had to try the ami first - assholes!

Anyway by biggest problem today is dealing with my hangover! affraid Proving you should never mix your drinks! All of that water I mixed with 5 glasses of wine, 2 cosmos, 2 black russians and finished off with a couple of kahluas! You never know what's in the water!

Mouse

Posts : 303
Join date : 2010-09-09
Location : New Zealand

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Post  Sarah001 Sun Sep 26, 2010 11:59 am

I think Gabapentin is what I'm going to be given next, as far as I know it's a very effective medication but alot of people I talk to on another health forum have too bad side effects to carry on with it so it's another that some people can tolerate and others can't. I'm surprised I've got on ok with the Ami, normally I get every side effect going but apart from a dry mouth I'm fine, just a shame it doesn't touch the soreness.
Sarah001
Sarah001

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

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Post  Mouse Sun Sep 26, 2010 7:08 pm

Sarah, the gabapentin is going well so far! I have the dry mouth though, why is that? Early days to gauge any results. I seem to now be experiencing a cyclic pattern so the next ugly bit will be mid cycle. I should be well into the Gabapentin by then.

I know what you mean about reacting to everything, the ami knocked me on my ass. I was so doo lally I couldn't talk for days. I thought it best otherwise I'd still be apologising now.

Mouse

Posts : 303
Join date : 2010-09-09
Location : New Zealand

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Post  jules Sun Sep 26, 2010 8:29 pm

I have been on Gabepentin since January 2010. I started off at about 600 and over time increased the dose to 3000 mg. i had NO side effects at all. for me, the medication did not take away the pain until i was at least 1200 mgs. it helped a little, but over time i continually increased it. the most one can take is 3600 mgs. i finally made it to 3000 mgs and after awhile was still in pain (but, much less pain than without). then my doc added lyrica (i've mentioned this on this site before). over time, i decreased the Gabepentin. but, now i am still burning so, i am going back up a little to 2700 mgs. i was never offered Amitrip. for this disorder. In the US we start w/ the meds we and the doc agree on...(thank God for good health insurance..but, we pay for it). the Gabepentin helped me...i'm sure it will help cut the pain for you.





jules

Posts : 225
Join date : 2010-03-17

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Post  Mouse Sun Sep 26, 2010 11:54 pm

I tried to get the good drug first and offered to pay, against regs apparently FFS! We have good health insurance but sometimes I'm still stunned about how much things cost. I didn't get pre-approval when I went to my new improved specialist and nearly fell over when I was given the bill. My flights were also covered by insurance so I was pretty happy about that!

I'm having zero side effects thus far! I think I'm on 900 at the moment. Will keep you posted!

Mouse

Posts : 303
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Location : New Zealand

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Post  jules Tue Sep 28, 2010 1:20 am

glad you are not having side effects!!!

jules

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