Vulvodynia Support
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» Hope to all my suffering ladies
Just diagnosed / Aimtriptyline weight gain! EmptyFri Oct 23, 2020 12:04 am by ringostarr26

» Please tell me this can get better
Just diagnosed / Aimtriptyline weight gain! EmptySat Jul 18, 2020 7:38 pm by sammykramer

» By no means cured, but doing much better!
Just diagnosed / Aimtriptyline weight gain! EmptyMon Mar 16, 2020 1:26 pm by tinkerbelle2

» How I cured my Vulvodynia!
Just diagnosed / Aimtriptyline weight gain! EmptySat Dec 07, 2019 11:54 am by Millie

» 7 months since the diagnosis
Just diagnosed / Aimtriptyline weight gain! EmptyWed Aug 14, 2019 2:38 am by agtoronto

» Gabapentin Gel. or other topical creams
Just diagnosed / Aimtriptyline weight gain! EmptySat Jun 15, 2019 5:22 pm by mary jane

» IMPORTANT FOR UK SUFFERERS
Just diagnosed / Aimtriptyline weight gain! EmptySat Jun 15, 2019 5:21 pm by mary jane

» Help New Diagnosis
Just diagnosed / Aimtriptyline weight gain! 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!
Just diagnosed / Aimtriptyline weight gain! 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


Just diagnosed / Aimtriptyline weight gain!

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Just diagnosed / Aimtriptyline weight gain! Empty Just diagnosed / Aimtriptyline weight gain!

Post  Castle16 Sun Apr 17, 2016 2:44 pm

Hello:) So glad to find this online support group site! My symptoms started almost 6 months ago (Nov 2015). Woke up one morning with frequent urination (I've always had frequency since menopause) and never had a UTI before. Fast forward...after seeing urologists, a gynecologist, urogynecologist, NP who specialized in Interstitial Cystitis, 2 cystoscopies, many ecoli UTI's....I feel the final diagnose is correct - vaginal atrophy (started premarin cream 4 months ago) and vulvodynia (just diagnosed with this couple days ago by gynecologist). Symptoms went from frequent urination, to severe burning, to a CONSTANT horrible urge to urinate, to a steady burn (still some frequency, especially when another UTI) on a pain scale from 4-6. I couldn't tell if it was my urethra or my vagina where the burn was coming from! Gyno the other day said there was redness around the outside of my vagina most likely causing the burning (said urethra and vagina inside looked good). Vaginal was not sensitive to touch at all, but I was burning badly after the vaginal exam was over.

She prescribed a vaginal ring, liquid lidocaine that I am to soak in a cotton ball and sleep with it pressed against my vaginal opening at night, and she wanted me to continue on the aimtriptyline I was put on 2 months ago by the NP I saw. I told her NO WAY! Reason being, in 2 months I have already gained 14 lbs! It causes carb and sweet cravings and I am trying not to indulge, but I read that the weight gain from it could also be hormonal related. I know over 50% of women gain weight on aimtriptyline. After 2 months on it and still have irritation/burning (I have frozen ice down there 24/7) I don't think the aimtriptyline is even helping (other then I sleep great). She said it could take longer, but I would like to try the ring and lidocaine without the aimtriptyline because I refuse to gain any more weight! Has aimtriptyline really helped anyone with my kind of burning? Thank you!!

Castle16

Posts : 10
Join date : 2016-04-16

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Just diagnosed / Aimtriptyline weight gain! Empty Re: Just diagnosed / Aimtriptyline weight gain!

Post  emalita Sun Apr 17, 2016 4:44 pm

Hi and welcome!

Don't you hate that everything is so darn close down there that it is hard to tell exactly what hurts! I've had the same issue with not knowing if it was my urethra or vagina that was causing the symptoms. I refused antidepressants and anticonvulsants from my OBGYN. I was on them as a kid for migraines (including amitriptyline), and I hated the way they made me feel. So, unfortunately I can't speak to them for vulvodynia, but I know a lot of women have given them a try on here.

Have you ever tried a powder supplement called D-Mannose for prevention and treatment of your UTIs? Two of my Naturopaths recommended it to me when I was having UTI issues. It only works on UTIs caused by E coli, but there are studies on its effectiveness on PubMed. So it's not just fluff that only Naturopaths use. It is a little sweet and a little bitter but super easy to take (just mix it with a little water). I bought mine on Amazon for pretty cheap.

My current specialist has me on a bioidentical estrogen tablet vaginally every other night (among other things), but I'm only starting my 5th week of treatment. He said it will take about 2.5 to 3.5 months for me to feel a difference; so I can't comment on how well it's working yet.

I assume all of your tests come back negative for everything? The only thing that stopped my urethra/vaginal burn (also had a weird prickly feeling at my urethra as well) was boric acid suppositories. However, that did nothing for my current pain, but at least I can check one thing off my list.

I hope the ring and lidocaine relieve your pain!!

emalita

Posts : 249
Join date : 2016-03-29
Location : USA

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Just diagnosed / Aimtriptyline weight gain! Empty Re: Just diagnosed / Aimtriptyline weight gain!

Post  fairlight10 Sun Apr 17, 2016 5:08 pm

Castle 16 Go back to your doctor and ask to be put on nortriptyline 20mg at night.I have been on this since June 2012 with a diagnosis of vulvar vestibulitis. Your story is very similar to mine. It takes a longtime for these meds to work but eventually I hope you will notice a difference. Persevere with the side effects.

fairlight10

Posts : 72
Join date : 2016-04-17

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Post  Castle16 Sun Apr 17, 2016 6:29 pm

Thanks for your reply about nortriptyline - did you have weight gain from this med? I know it's just like aimtriptyline. I was hoping the vaginal ring and the liquid lidocaine/soaked cotton ball would be enough treatment because the weight gain has been emotionally upsetting Sad. Really appreciate your responding. I'm new to this site, so not sure how to navigate it all. Not sure if I'm supposed to re-type my subject line in the 'post title' section under Post a reply -so sorry if I didn't do this right! I hope you are feeling better Smile

Castle16

Posts : 10
Join date : 2016-04-16

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Post  fairlight10 Sun Apr 17, 2016 6:55 pm

Nortriptyline is a more advanced drug and more expensive than amitriptyline. It has far less side effects and suited me more than amitriptyline. I have been on 20mg until last September when my dr up it to 30mg to help with my migraines that I also have. That extra 10 has helped both conditions. I have put on a few pounds. Yes it does give you the munchies as someone else said on this forum.

fairlight10

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