Vulvodynia Support
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» Hope to all my suffering ladies
Sorry -- another ami question. EmptyFri Oct 23, 2020 12:04 am by ringostarr26

» Please tell me this can get better
Sorry -- another ami question. EmptySat Jul 18, 2020 7:38 pm by sammykramer

» By no means cured, but doing much better!
Sorry -- another ami question. EmptyMon Mar 16, 2020 1:26 pm by tinkerbelle2

» How I cured my Vulvodynia!
Sorry -- another ami question. EmptySat Dec 07, 2019 11:54 am by Millie

» 7 months since the diagnosis
Sorry -- another ami question. EmptyWed Aug 14, 2019 2:38 am by agtoronto

» Gabapentin Gel. or other topical creams
Sorry -- another ami question. EmptySat Jun 15, 2019 5:22 pm by mary jane

» IMPORTANT FOR UK SUFFERERS
Sorry -- another ami question. EmptySat Jun 15, 2019 5:21 pm by mary jane

» Help New Diagnosis
Sorry -- another ami question. 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!
Sorry -- another ami question. 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


Sorry -- another ami question.

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Sorry -- another ami question. Empty Sorry -- another ami question.

Post  lolainslacks Sat Nov 12, 2011 1:55 am

Assuming you're taking amitriptyline for pain but not for depression or anything, and it's the only medication you're taking, what's the highest dosage you can be given? In the UK.

I'm taking 20mg, and I think it may be working, but only very slightly, not enough to stop penetration from hurting. The difference in pain is definite, but it's miniscule. So I'm wondering if it's possible to taking a higher dosage? Or if this is as high as GPs are willing to go?

lolainslacks

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Join date : 2011-04-18

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Post  Mette Sat Nov 12, 2011 7:33 am

I don't know how it is in the UK, but when I started ami I took 25 mg a day. I later found out that 10 mg is the best balance of pain relief and side effects for me, but I'm pretty sure that my doctor would have let me go up to 50 mg or higher if it helped me.

I don't think that there is a difference if you take it for pain or for depression, except that you usually don't need as high a dosis to treat pain.

I think the best idea is to ask your GP, because it probably depends on the doctor.

Mette

Posts : 13
Join date : 2011-09-14

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Post  Sarah001 Sat Nov 12, 2011 1:01 pm

Oh good lord no! 20mg is still very low, I'm on 50mg for pain reasons and I was given the option of going all the way up to 100mg a day if I wanted to and I could have stood the side effects, it just wasn't helping me though so I stopped at 50mg.
Sarah001
Sarah001

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Post  grassy Wed Nov 16, 2011 9:05 pm

I have been on it for years and years. I was on 50 mg in the begining for face pain. Didnt even dent it. But what i wanted to tell you is this. I went to this very expensive gyno. He laughed that I was taking 10 mg. He said TENNNNNN?????? So ten is low. I think the higher the dose, the more chance of side effects. But it helps some, tiny bit. It makes a person get a good night sleep. 25 mg is a normal dose. thats here in the states. cindy

grassy

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Post  lolainslacks Thu Nov 17, 2011 3:44 am

Thanks guys. I have my next gyn appointment on December 5th, and I'll ask her then about raising my dosage. My GP is reluctant to do it without word from my gyn as she doesn't know much about vulvodynia so she doesn't really understand how to treat me. I'm looking forward to taking a higher dosage, as the ami really does seem to be helping, it's just not nearly enough yet.

lolainslacks

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Post  ButterflyLiz Wed Nov 23, 2011 5:32 pm

Hi, glad to hear the ami is helping a bit, long may it continue. Well, I can tell you that back in the day I went all the way up to the giddy heights of 150mg per day. Unfortunately it did little if anything to counteract my pain, but I wanted the peace of mind of knowing that I had tried the highest dosage possible. My doc was also slightly reluctant so I took in my copy of "The V book" (highly recommended reading) and underlined in red the bit where the author says that ami may be increased up to 150mg per day. I don't think I could have stayed on that for long though -felt very weird and spaced out. However, as you are seeing some improvement already, hopefully you will see results at a lower dose than 150. Just wanted to reassure you that you have lots of room for manoeuvre. Good luck! x
ButterflyLiz
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Post  lolainslacks Thu Nov 24, 2011 5:05 pm

Thank you Liz! Yes the ami still seems to be working, just is not nearly enough as I need. I used my dilators yesterday, and got all the way to the largest one whilst using my numbing lidocaine gel, and usually when I do that I end up in a lot of pain later when the lidocain wears off, because of all of the activity in that area. But yesterday I was left with no pain at all. Also, usually when I have my period my pain is intensified, and I can't have anything at all touch me there. And on the second or third day I get this horrible dull ache down there when I stand. But my most recent period was a breeze, with virtually no burning and no aching.

So it is definitely helping. The reason I say that this dosage is not enough is because when I don't use the lidocaine penetration with anything larger than one/two fingers is still very very painful. So it's like it's taken the edge off and improved some situations, but I'll need something stronger for the more serious pain. I'm looking forward to talking to my gyn about this. I will ask her to put some info on different dosages into my file so my GP can see it and I can get it raised quickly when I need it. Because my gyn has a waiting list so long I have to wait four to six months each time before being able to see her.

Thank you for the book recommendation, I will definitely look into getting hold of that.

lolainslacks

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Post  ButterflyLiz Sun Nov 27, 2011 11:52 am

Good luck with it all, it's a great idea to get some notes about dosages put in your file as it would be really frustrating to wait all that time just to get confirmation that you can go up again each time.

Yes the V book is fab, it's a complete overview of the "Vs" (vulva, vagina & vestibule). There is a chapter about vulvodynia, where I got the ami info. However, do bear in mind that a lot has probably changed / been discovered since it was published in 2002. Saying that, I do refer to my copy often.

Liz x
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