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» Acupuncture advice please
Yesterday at 11:27 pm by infinitelywondering

» Please tell me this can get better
Mon Feb 19, 2018 2:10 am by anon99

» Lichen Sclerosus
Fri Feb 16, 2018 2:47 am by ryn207

» MAY HAVE FOUND A CURE- PLEASE READ
Thu Feb 15, 2018 10:04 pm by infinitelywondering

» my rock bottom, psychological effects of vulvodynia, I told him he can leave me
Wed Feb 14, 2018 6:43 am by renegade_magdalena

» Some interesting information about nerve pain in general
Wed Feb 14, 2018 3:58 am by Athena

» Sore after using dilator for first time in a year
Wed Feb 14, 2018 3:45 am by Athena

» What helped me
Wed Feb 14, 2018 3:38 am by Athena

» NO PAIN DURING SEX
Wed Feb 14, 2018 3:33 am by Athena

MAY HAVE FOUND A CURE- PLEASE READ

Thu Feb 15, 2018 10:04 pm by infinitelywondering

Dear all,

Today has been the day I've been waiting for. The day something FINALLY makes sense.
I've been told countless times that I've got nerve damage or a muscular condition, yet none of the specific treatments have helped me. My GP suggested attacking this from a different angle so referred me to a dermatologist specialist


after having a vestibulectomy with no success, I decided to visit …

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NO PAIN DURING SEX

Sat Feb 10, 2018 12:18 am by rockylife

I HAVE NO PAIN DURING SEX, BUT I FEEL THIS BURNING SENSATION ALL DAY JUST BESIDE THE VAGINAL OPENING. DO I REALLY HAVE A VULVODYNIA? I'M CONFUSED.

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Newby not sure where to turn

Thu Feb 01, 2018 3:32 pm by Cerjo87

Hi this is all very new to me , well the talking about it bit is , the pain while having sex and also the uncomfortable feelings after and feeling like I have  sistitus most of the time I’m very used to , I’ve suffered for 7 years now I’m only 30 . Finally after all this time the doctors or should I say my gp has said I have Vulvodynia and have givin me gabapentin to try .i told her I’d …

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Looking for a friend..... and new problems

Sat Jan 06, 2018 11:38 pm by infinitelywondering

Hi everyone,

I hope you're doing well.

I hate to say this, but I feel beaten down and terribly alone. I had a vestibulectomy surgery about 6 months ago and I was absolutely praying it would work. It didn't.

6 months later and here I am, sitting on my bedroom floor crying my eyes out because I know I'll never be able to have painfree sex. I don't know what to do and just need a friend Sad



Comments: 8

Newbie to the site

Sun Jul 30, 2017 12:16 am by Ksa

Hello. Thank you for this wonderful site. I'm currently under the care of a dr in Phoenix that specializes in vaginal disorders. I will probably be on a suppository of estridol the rest of my life and I am currently on medications for a rare form of vaginitis that's pretty unheard of for my age. My vagina literally hates me. I've struggled with vulvadynia for 20 years, the duration of my …

Comments: 4

Vulvodynia from #metoo media coverage

Thu Jan 25, 2018 9:01 pm by dooleyhornberg

I am wondering if anyone else in this forum has experience an increase or flare up in their vulvodynia as a result of the coverage of the sexual abuse scandals in Hollywood, DC, and the recent gymnastics scandal. I have definitely had a flare up.

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So frustrating!!

Thu Jan 04, 2018 1:15 am by Hannah77

Well I'm back in pain after 7 years of pain free days.
I was diagnosed with vulvodynia when I was 17. I suffered for three years with horrible burning all day, painful sex with my boyfriend and just pure misery Sad I went into a spontaneous remission when I was 20. I'm still not sure how the pain stopped but all the sudden I could go an entire day without thinking of my vagina, sex started to …

Comments: 3

Looking for suggestions or encouragement

Sat Jan 13, 2018 12:10 am by ryn207

Hi there. I'm 25 and have been dealing with this for over a year and a half and I'm really starting to lose hope this will ever stop.

In July of 2016 I had a yeast infection. When Monistat didn't work I went to my gynecologist who prescribed Diflucan. When the itching didn't stop she retested me and found that my yeast infection was gone, but I now had a bacterial infection. After taking the …

Comments: 4

Amitriptyline given for vulvodyina pain

Tue Oct 24, 2017 2:46 pm by katycrawford

Hi there,

After years of being misdiagnosed etc as most women have on this forum I have finally been diagnosed with vulvodynia (yay) and have been given the lowest dose of an antidepressant called Amitriptyline. Has anyone been on this before and has any positive (or negative) news to give me? Im feeling down already and I've only been taking it for a few days, I don't have much hope of it …

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Amitriptyline given for vulvodyina pain

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Amitriptyline given for vulvodyina pain

Post  katycrawford on Tue Oct 24, 2017 2:46 pm

Hi there,

After years of being misdiagnosed etc as most women have on this forum I have finally been diagnosed with vulvodynia (yay) and have been given the lowest dose of an antidepressant called Amitriptyline. Has anyone been on this before and has any positive (or negative) news to give me? Im feeling down already and I've only been taking it for a few days, I don't have much hope of it working and I'm terrified of the symptoms as i know many women complain of significant weight gain. I am only 21 years old and have been having these symptoms since i as about 16, I can't bear the thought of having to deal with this for the rest of my life.

Any kind words or advice would be hugely, hugely appreciated.

katycrawford

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Re: Amitriptyline given for vulvodyina pain

Post  JCW on Thu Oct 26, 2017 4:52 am

Hi there,

I am so sorry to hear what you are going though. I was prescribed Amitriptyline-Baclofen in a cream form (ABC) to be used topically about 3-4 months ago. My specialist informed me that she could prescribe the Amitriptyline in a pill form, but she felt that using it as a topical cream may be more beneficial for me and would cause fewer side effects. I honestly felt that I did not notice any difference after using the cream, however, I have not used the cream in a few days and the pain is unbearable to the touch. So maybe it was helping.

If you are already feeling down about the medication, I would suggest talking with the doctor who prescribed it to you. I completely agree with you about the thought of dealing with this for the rest of your life—this feeling is so unfair, but if any medication is making you feel worse, talk with your doctor.

I was recently diagnosed about 6 months ago although I have been experiencing symptoms for about 5 years now. I wish I talked about it with my doctor sooner. I love how everyone is so supportive on this forum. You are not alone—wishing you the best!

JCW

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Re: Amitriptyline given for vulvodyina pain

Post  jungleclover on Sat Nov 18, 2017 3:52 am

I’m 23 so I️ completely get where you’re coming from. I’ve tried an antidepressant before but in pill form. It didn’t seem to help. I’ve heard the cream is more effective. Don’t worry about getting fat. The amount of antidepressant they are giving you is a lot lower than if you were taking it for psychiatric reasons. It won’t affect your weight. Just focus on feeling better. Sending you all the best!

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Re: Amitriptyline given for vulvodyina pain

Post  WVR00 on Sat Nov 18, 2017 11:33 pm

Hello. I’m sorry you are going through this. I️ have it too. I’ve been prescribed the same cream. It’s amtrip, bac and nerontin. I’ve been using t for about a month now and it is helping a bit. Has anyone used this cream and had to completely make it go away? I was told that this is a better option since it delivers it right to the area.. I’m just so frustrated... i want to feel back to normal again. My specialist told me it could take 6 weeks... just wondering if anyone had any success with the cream vs. oral pill.

WVR00

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Had enough

Post  feeling desperate on Tue Jan 02, 2018 4:24 pm

I was diagnosed 2 months ago after getting what I thought was acute cystitis on holiday in October. Apparently it wasn't a UTI but often still feels like it with the burning vulvar pain but now I have really bad low down pain in my abdomen and bad aching in my vagina. Estrogen cream provoked period-like pains but I'm past the menopause and don't want to use it even though my doc says the vaginal tissue is very thin. I was prescribed amitriptyline and took it for 3 nights before Christmas but was desperately nauseous and just had to give up. Now taking an anti-depressant because, guess what, I'm depressed ! Right now I can't cope, haven't been anywhere but the doc and the supermarket for 3 months. Christmas was difficult to cope with as I was trying to act normal with my husband who has a progressive neurological disease and grownup children and not upset them but now I just feel I can't do this for the rest of my life and they would all be better without me.

feeling desperate

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Re: Amitriptyline given for vulvodyina pain

Post  Olivia3110 on Tue Jan 02, 2018 10:27 pm

Hi, feeling desperate! I have had almost identical symptoms to you and have also dealt with depression as a result and I just wanted to share with you the things that have helped ease my symptoms (even though they’re not completely gone):

- Cranberry juice works wonders for the UTI symptoms. I tend to drink Ocean Spray.
- I also use Vagisil (medicated cream) as it has 2% lidocaine and as such, doesn’t burn as much as the doctor 5% lidocaine gel that the doctor can prescribe.
- I also use emuaidMAX (maximum strength). However , this cream does burn upon application but it honestly eases the burning symptoms once it has been given a chance to sink in. It has quite a hefty price tag of £20.95 on Amazon for a 0.5oz tub.

I really hope this provides some ease for you

Sent from Topic'it App

Olivia3110

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Re: Amitriptyline given for vulvodyina pain

Post  sarisbaris on Wed Jan 03, 2018 4:41 am

I read you post. I can't any offer any advice on the anti-depressant. I battled V for 15 years. I consider myself cured now. When my vagina was burning like a mofo, I was depressed.

Instead, I would like to offer advice on ending the burning and getting your health back. No joke. I am cured. I have a husband. We have crazy sex. I have a son. My vagina doesn't burn. So now I spend my spare time helping others shorten their battle with V. No one should battle it as long as I did.

Here's my blog. Let me know if you have any questions.
Sarah
sarahcamp20@gmail.com

http://myvulvodyniacure.blogspot.com/

sarisbaris

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Re: Amitriptyline given for vulvodyina pain

Post  mary jane on Wed Jan 03, 2018 10:14 am

Olivia3110 wrote:Hi, feeling desperate! I have had almost identical symptoms  to you and have also dealt with depression as a result and I just wanted to share with you the things that have helped ease my symptoms (even though they’re not completely gone):

- Cranberry juice works wonders for the UTI symptoms. I tend to drink Ocean Spray.
- I also use Vagisil (medicated cream) as it has 2% lidocaine and as such, doesn’t burn as much as the doctor 5% lidocaine gel that the doctor can prescribe.
- I also use emuaidMAX (maximum strength). However , this cream does burn upon application but it honestly eases the burning symptoms once it has been given a chance to sink in. It has quite a hefty price tag of £20.95 on Amazon for a 0.5oz tub.

I really hope this provides some ease for you

Sent from Topic'it App

emuaid max sounds like a great product, I google their ingredients. Thanks for sharing ! Smile
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Thank you

Post  feeling desperate on Wed Jan 03, 2018 11:40 am

Thank you Olivia and WVROO
I saw my GP this morning and just fell apart when she asked how I was. It all seems to be about getting me on stronger antidepressants. I keep asking to a) see a gynaecologist and b) get something to deal with the pain and soreness but she has never heard of the amitrip/bac/neurotin cream. It looks like our NHS hasn't yet woken up to all the women suffering hell with vulvodynia. All she offers is Instillagel which doesn't help much. She has at last agreed to send me to a gynae clinic but doesn't know how long is the waiting list and apparently there are no private consultants in the north of Scotland, where I live, the nearest being 120 miles away - sometimes I can't even drive a mile to Tesco :-(

feeling desperate

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Re: Amitriptyline given for vulvodyina pain

Post  mary jane on Wed Jan 03, 2018 6:34 pm

feeling desperate wrote:Thank you Olivia and WVROO
I saw my GP this morning and just fell apart when she asked how I was. It all seems to be about getting me on stronger antidepressants. I keep asking to a) see a gynaecologist and b) get something to deal with the pain and soreness but she has never heard of the amitrip/bac/neurotin cream. It looks like our NHS hasn't yet woken up to all the women suffering hell with vulvodynia. All she offers is Instillagel which doesn't help much. She has at last agreed to send me to a gynae clinic but doesn't know how long is the waiting list and apparently there are no private consultants in the north of Scotland, where I live, the nearest being 120 miles away - sometimes I can't even drive a mile to Tesco :-(

Hello, I'm really sorry to hear your GP is being unhelpful. If it helps, I use Lidocaine ointment produced in UK by TEVA, it's 5% strength and makes the area numb, although it may burn for 10 minutes but this should go away the more you use the cream. Instillagel is very light and doesn't do much.
Try and refuse stronger antidepressants and ask for Lyrica instead. The reason GPs give out antidepressants is because they want to reduce costs and the pain protocol is to give a patient antidepressants and only if these don't work to give anti seizure medications. ADs take months to work so it's hard to know when to increase dosage if at all.
You are a tax payer and you deserve adequate treatment.
I also advise against regular OBGYNs, they don't know anything. If you can, try and see a UROGYN or go directly to Wendy Reid in London if you can afford the travel and consulation.
It's true the baclofen cream exists only in the Us and not UK.

It's hard to say what can help since vulvodynia presents itself differently from woman to woman. It can be treated or controlled however, so don't lose hope !
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Re: Amitriptyline given for vulvodyina pain

Post  lindsey_taylor on Sat Jan 06, 2018 10:06 pm

Hello there. I was prescribed this at 10mg back during my first bout of vulvodynia. It didn't help, and was titrated up to 30mg. Still no help. I finally just came off of it, stopped taking my birth control, and then got better. However, now it's back. Sad

Are you having any luck?

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Re: Amitriptyline given for vulvodyina pain

Post  ryn207 on Sat Jan 13, 2018 1:39 am

I've been on Amitriptyline for about a year now. I'm on 25mg and while it didn't take all the pain and itching away, I did feel like it helped to take the edge off of it. Everyone is different, but I didn't experience any weight gain. My dermatologist started me off at 10mg and then we later raised it. The only side effect I had was hair loss. For whatever reason my hair started thinning for about the first 3 months. I have really thick hair so it didn't make a huge difference (except for having to vacuum my apartment more). Eventually it stopped so I am still on it. I haven't found anything that removes my symptoms 100%, so Amitriptyline is just one of the many things I'm currently taking.

I really hope the Amitriptyline works for you!

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Re: Amitriptyline given for vulvodyina pain

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