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» What's next?
Yesterday at 4:01 pm by jennyk2

» Pain management - what works for me
Yesterday at 3:41 pm by Jo44

» Share your Vulvodynia Story and become a member of the Global Anthology!
Mon Apr 23, 2018 10:44 pm by smyerskelley

» If it helps anyone else
Mon Apr 23, 2018 6:36 pm by VH7797

» Cured, cyst in foot
Mon Apr 23, 2018 4:06 pm by Guest

» HELP!! Topical cream?
Sun Apr 22, 2018 5:44 pm by emalita

» The pain CAN get better - What's worked for me
Sun Apr 22, 2018 5:32 pm by emalita

» Custom made leggings?
Sun Apr 22, 2018 4:52 am by CatJones

» Please tell me this can get better
Sun Apr 15, 2018 11:31 am by amf329

I'M NEW - Do I listen to my gyno who I feel has it wrong?

Fri Mar 09, 2018 6:17 pm by Tunes25

Hello!

I am a 25 year old woman and wanted to share my story here as I feel frustrated by the suggestions of my gyno and am hoping for some advice.

To give the context for this: in September 2016 I moved in with my long term boyfriend after living abroad a year and (nearly) abstaining from sex. Within a few weeks I had got a yeast infection which I treated myself successfully, but then 2 weeks …

Comments: 4

I cured myself 100% of vulvodynia twenty years ago--I hope this helps someone

Mon Mar 12, 2018 4:33 pm by totallycured

Hi,

Every so often I'm reminded of the constant, persistent, horrible pain I was in two decades ago, and I reach out to try to help others who are suffering. If someone had offered me a solution during that terrible time, I'd have jumped at it. I hope this helps someone.

Yes, I did have terrible vulvodynia. It felt like someone poured acid all over my vulva. My doctor confirmed it and was …

Comments: 3

Hi Im from Australia :)

Sat Jan 08, 2011 1:08 am by emma

Hi girls... I live in Australia.
I am currently undergoing a new treatment for vulvodynia. Just wondering if anyone else here has tried it. It's Endep in the form of cream to apply directly on the area. I dont know if anyone else has tried this but so far evidently it has had a 50% success rate.
Anyway i feel at a loss. This new treatment is exciting but at the same time i just dont feel like …

Comments: 35

Somebody please help me...

Fri Nov 24, 2017 8:05 am by Andlag

Hey everyone,

since I started being sexually active i often experienced burning in my vagina which was often worse during sex /around the time of my period or when using lubricants. I was never able to use tampons because the one time i tried putting them in it felt like acid was poured on my skin. Fast forward to 2 months ago when I got a UTI and an allergic reaction in my vagina. I thought it …

Comments: 14

Lidocaine with condoms?

Wed Mar 21, 2018 10:44 pm by AEM1

Hi everyone! My doctor just prescribed me a topical lidocaine to administer before sex, but I forgot to ask if it is okay to use with condoms. Has anyone else used this before and know it is safe to use with condoms? Thanks! Very Happy
Unrelated, but I just started Lyrica a few weeks ago...no changes yet, but I'm hopeful something will come out of it. 3 years with vulvodynia and unable to have sex …

Comments: 1

Constant pain, I want to die.

Fri Jun 02, 2017 4:29 am by Meggiemay

I posted on here a few years ago but my symptoms went away with the inflammation. I didn't get so lucky this time.

For over three months, i've had terrible rawness, burning, soreness in the urethral/vestibule area and pressure/hypersensitivity in the clitoral area. I've also had some lower abdominal pressure and burning on my butt. I can barely walk! My gyno hasn't been much help. I'm on …

Comments: 23

Recently Diagnosed which has motivated my research study

Tue Mar 06, 2018 4:54 pm by ebclose2free

Hi everyone,

My name is Eliza Barach and I was diagnosed with vulvodynia in October of 2017. I'm also PhD student at the State University of New York at Albany. I work several professors at SUNY, but one in particular, Dr. Mitch Earleywine researches marijuana and its possible efficacy as an alternative treatment. Our previous examined cannabis and symptoms of PMS/PMDD and found that women …

Comments: 0

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 …

Comments: 3

New and desperate for advice

Sat Mar 03, 2018 2:37 pm by srbry

Hi everyone,

I'm new here and was told to find a support group because this is all getting a bit much really...

I lost my virginity when I was 18 and it hurt - that was normal. Loads of women had told me that it hurt so that was fine I didn't question that. I was with the same guy for a couple of months and each time after that it was uncomfortable and not great. I didn't tell him because I …

Comments: 3


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!

jungleclover

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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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Amytriptaline

Post  M z f on Fri Mar 02, 2018 12:52 pm

Hi lovely

So sorry you are experiencing this.

I developed vulvodynia seven years ago. It was constant and excruciating and I could hardly sit down. I was prescribed amytriptaline in tablet form in a gradually increasing dosage and have been taking it ever since.

It has really helped reduce my pain and improved my quality of life. The first few weeks I took it I felt really groggy, exhausted and slow. However this stopped and I think I generally feel pretty normal. I do think it has contributed to me putting on a bit of weight but not loads and the pelvic pain in itself means I can't do the kind of high impact exercise I used to do although I can be quite active (fast walking, looking after my toddler, doing low impact exercise) so that's positive for my health/weight.

I initially needed to take 60mg a day so a medium high amount for pain (although it is used in much higher dosages for depression) but during pregnancy I reduced this to 40mg. I was very worried about whether I could take it during trying to concieve/pregnancy and breastfeeding - but I was advised by my consultant that it was generally believed to be safe and I have a healthy daughter. Not sure if that's relevant to you at the moment but I'd always hoped to be a mum and worried about needing to take medication that wouldn't enable me to.

I have had physio and counselling alongside taking amytriptaline and that had helped reduce my pain level although not to a point where I can come off the tablets - I am able to miss taking them every so.often or take a lower dose sometimes and feel ok. I see Deborah Boyle at the Royal Free in London (vulval clinic in colposcopy) in case you are near London/uk!

I was also in a very stressful/unhealthy relationship when I first started getting pain and sex was very painful and often felt pressured into sex. My current relationship is much better and I've been able to enjoy generally pain free sex whilst taking amitryptaline.

Much luck and love xxxx

M z f

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Re: Amitriptyline given for vulvodyina pain

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