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Sat May 26, 2018 5:21 pm by Aquaben

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» Cleveland Clinic - Pain Management, Weston, FL
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Mon May 21, 2018 4:08 am by mtsp

» UK Vulvodynia Clinics
Sun May 20, 2018 9:58 am by katycrawford

» 8 years and struggling
Thu May 17, 2018 11:22 pm by Kezz

» Vestibulectomy recovery question!
Thu May 17, 2018 11:11 pm by Kezz

» Gabapentin Gel. or other topical creams
Thu May 17, 2018 11:55 am by Rosie21

» What has been helping ME (much less pain over time!!)
Wed May 16, 2018 3:43 am by leoscc

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: 1

What has been helping ME (much less pain over time!!)

Wed May 16, 2018 3:43 am by leoscc

Hello everyone! I vanished for quite some time as my life became consumed by not only this but other daily responsibilities as well. Shortly after my diagnosis, my boyfriend f 3 years left me as he did not want to deal with this. It left me broken for a while but also gave me time to figure out what the heck was going on. So, I will write out a quick list of my symptoms and what helped me.

1. I …

Comments: 0

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: 4

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: 5

Condoms Less Painful?

Mon May 07, 2018 3:35 am by stillinpain

I'm just curious, has anyone found using condoms to be less abrasive to the skin than without? I just got off birth control and haven't stretched myself out enough post surgery to try sex yet, but when I do I am wondering how trying it with condoms with affect the sensation. I feel like for me the skin to skin sensation creates pain, not just at my entrance but internally, too, since I also have …

Comments: 0

Will there be an end?

Fri Apr 27, 2018 12:06 am by Krista2828

I go in and out of being okay and not being okay with this condition. I question often why me? I am a problem solver by nature and I feel so defeated that after tons of research and trial and error and doctors and tears that there still is no answer.

I am in my 20's.. it shouldn't be this way.

Id love to know what all has worked! I am willing to try anything to get my life back. I am curious …

Comments: 6

you can be healed so easy and quite fast.

Thu Apr 26, 2018 11:46 pm by pussycat

Hello everyone,
i am new to this forum. I wanted to share my personal "journey" with V with you and to give you a real hope you can be totally healed/recovered from V. Many years ago i was struck with V, it was painful and got worst and worst, eventually i could not sit, could not stand, could not walk, could not swim in a swimming pool anymore. I was becoming bedridden, it frightened …

Comments: 4

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


getting pregnant and vulvodynia

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getting pregnant and vulvodynia

Post  londonlady on Mon Jul 02, 2012 8:35 pm

Hi Ladies,

Before I started getting V about a year and a half ago, I sadly lost a baby at 16 weeks. She was a surprise baby when I was 23 and had just started seeing someone, but we both wanted to keep her and were excited about the pregnancy, so it was a massive loss which has left me wanting to be a mum much earlier than I had thought before.

I often think about trying for another baby. Although it is not the right time financially at the moment, I hope that in a couple of years it will be something we will do.

However, at the moment the only thing which seems to help me is a relatively high dose of amytriptaline, which is not safe in pregnancy. I tried reducing it recently but the pain was too much. although I am hopeful about physiotherapy, I really worry that I won't ever be able to come off it and try for a baby.

I wondered what other people have done when faced with this and if anyone can share any positive stories about trying for a baby with vulvodynia.

I know I should try and focus on the here and now but it feels like a weight hanging over me sometimes!

thanks
xxx


londonlady

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Re: getting pregnant and vulvodynia

Post  Azraella on Wed Jul 11, 2012 9:28 pm

Hello,

I am so sorry to hear about your loss.

I am 27 years old 26 weeks pregnant and have had V for four years now, tried many treatments including surgery..twice. I have not found ONE thing that helps with the pain.

My partner and I have been together for 6 years and sense I got V we have sex very little so I am oddly lucky to have gotten pregnant.

I worry all the time that I will not be able to give 100% into being a mom because I am in constant pain...I am very excited and happy, don't get me wrong but it is hard being in so much pain all the time.

But if I can do it anyone can do it! So please never give up on your dreams of being a mommy because of V. Good luck to you when you do decide the time is right.

Also I have never tried anitripdylin (mspelled) I wonder if when I have the baby if it is something I should try? My pain is constant and unprovoked, it gets worse after sex(like the next morning) and it is a STRONG burning feeling. Is yours anything like that? Just asking because I might ask my Doctor if I can try this medication after pregnancy.

Azraella

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Re: getting pregnant and vulvodynia

Post  londonlady on Sat Jul 14, 2012 9:25 am

Hi Azraella,

Thanks for your message and congratulations on your pregnancy!

I'm sure it must be worrying thinking about being a mum and still being in pain, but I'm sure that you will do it! Pain can make me feel really anxious about not being able to do things but I am always surprising myself by doing those things anyway.

It could be worth trying Amitryptaline once the baby arrives (although I would think you probably can't mix it with breastfeeding, but I'm not sure). It has definitely helped me to live a more normal life with much less pain on a daily basis/when having sex.

It is actually an anti-depressant, but prescribed in lower dosages for pain relating to nerves (vulvodynia but also other types of chronic pain) which don't respond to other pain killers. You have to start it at a low dosage and then increase it slowly (i.e. each week) until you get to the dosage that blocks your pain.

It does have some side effects which I don't like: it can make you pretty drowsy and a bit foggy, and you get a dry mouth. some people also find it makes them put on weight, but I haven't had that, and have been taking it for about a year. You can't drink as well if you are taking it.

I found these side effects (especially feeling drowsy) were much worse when I first started taking it - but after about 6 weeks (which I know is a struggle!) they stopped affecting me so much and I could get on with my life almost normally. I take them at night so that I mostly sleep through the time they make me drowsy and just feel a bit more tired than usual in the day.

A physio also said that gabapentin could help - this is another drug which relates to nerve pain.

None of these pills are cures but they make the symptoms more manageable while I look for a way to tackle the problem.

Also, have you tried physiotherapy at all for your pelvic floor muscles? Mine is very tight with lots of trigger points (muscle knots) and I am seeing a women's health physiotherapist to learn how to relax it and essentially do some deep tissue massage to help.

Good luck - and take care in your pregnancy

xxxxx



londonlady

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Re: getting pregnant and vulvodynia

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