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I'm new to this forum and would love some advice! :)

Tue Jun 05, 2018 4:13 am by anikita

Hi lovely gals!

I'm honestly hoping to get any bit of advice anyone might have to offer. I go from bouts of sobbing hysterically in my boyfriend's arms to feeling confident that I can beat this.

I haven't been actually diagnosed with vulvodynia but EVERYTHING under the sun has come back negative. I started having sex 4 years ago after starting Lo Loestrin, with my first and current boyfriend …

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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 …

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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.

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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 …

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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 …

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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 …

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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 …

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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


Finding the right medication.

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Finding the right medication.

Post  ria on Thu Apr 28, 2011 1:52 pm


I have dysesthetic vulvodynia 4 horrid years of my life........................... Today is a bad day as the Nortriptyline tablets I was on 75mg did help but had a reaction to them, so then I was prescribed efexor 37.5 mg starting dose did nothing pain pain pain right back where I started went up to 75mg still no good also doing biofeedback with Dr Glazier. I am either having baths doing yoga biofeedback breathing nothing seems to work at the moment. When I started with this I saw 10 consultants urologist gyn hormone specialist, dermatologist, no one really knows what to do. the dermatologist told me to go and have a couple of drinks of wine I could quite happily put my hands around her throat ( I didnt) just carried on with severe burning trying to walk and act as if everything will be ok. Sad Sad Sad Sad Sad Sad Sad Sad Sad Sad Sad I no I am rabbling but its the pain had biopsy blood test all the usual nothing Sad Sad Sad Sad Sad Sad Sad Sad So then I went to my local GUMed they are fantastic as I say got relief with the Nora but back where I started pale pale pale pale pale pale So now going to GUMed Tuesday what do you all think is the best drug for releif I know we are all different stupid question but hey I am clutching at straws pale pale pale pale pale pale You know whats funny Laughing Laughing Laughing Laughing Laughing I hate taking tablets now I am becomming an expert on medication like choosing a fine wine Very Happy Very Happy Very Happy Very Happy Very Happy Very Happy In my previous life 4 years ago I would say oh I never take tablets boy did I get a big bite on the bum Embarassed Embarassed Embarassed Embarassed Embarassed Embarassed

ria

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Re: Finding the right medication.

Post  Zazu on Thu Apr 28, 2011 2:39 pm

Hi there!
Well, I've been on the med merry-go-round too, so here's my two cents. First of all, I'm wondering if you've ever tried amitriptyline (Elavil)? It's similar to nortriptyline but a little different, so wondering if maybe you won't have the same reaction? I'm sure you've already considered that but just throwing it out there. I tried ami a couple of months ago and it didn't go well with me but that's because I seem to be hypersensitive to seratonin - any class of anti-depressants makes me a complete insomniac (and it doesn't matter if 99% of people become drowsy and sleepy- not me). Effexor is a completely different type of anti-depressant which uses a different mechanism (it's an SSNRI which you can google and read all about). It isn't usually prescribed for peripheral nerve pain, which is what you've got going on, hon.
Your next best line of attack is to ask for gabapentin or pregabalin. These are anti-seizure medications often prescribed for nerve pain- they reduce nerve excitability and pain. They are similar, like amitriptyling and noramitriptyline are to each other. There's lots of studies out there supporting the use of gaba meds for vulvodynia, so get some good research and go to your dr. asap!! They can also do a topical gabapentin/lidocaine cream which might help as well.
Good luck!

Zazu

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FINDING THE RIGHT MEDICATION.

Post  ria on Thu Apr 28, 2011 5:28 pm

Thank you soooooo much for your reply sometimes even when I sit on the net reading other peoples stories I still feel like I am the only one with constant knawing pain in my vulva Sad Sad Sad Sad Sad Sad Sad but your reply has helped thank you. I could not take the ami it just sent me to sleep. I know efexor has been used by some vulvodynia patients but hey I think your right I need to go and try something else. I am seeing the GUMed doctor tuesday If I had one wish I would wipe this from all women the sad thing is there is no answers biofeedback has not taken it away Sad Sad Sad On the up side Razz Razz Razz Razz Razz Razz I am going to get better its just that with the flare up I am well cheesed off its like a bloody curse Mad Mad Mad Mad Mad Mad Mad Mad Mad again sorry for the rant I hope you are feeling better and if you want to rant and rave I am here for you.

blessings to you

Ria (uk)

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Re: Finding the right medication.

Post  noni on Fri Apr 29, 2011 3:38 am

Hey Ria,

My heart goes out to you...no one deserves this misery.

Like someone said, theres Lyrica that you could try. I have a friend who had neuropathic pain in the legs and hands, shes diabetic, and it helped her. So presumably it could help vulvar neuropathic pain. I was diagnosed with neuropathic vulvar pain and I am taking Ami 50mg for it...Im not 100 percent....but I can function fairly well these days...some days are still crap though! :/

I believe in meditation, physio and all those things being thrown at vulvodynia...however, with those of us who have neuropathy I think the meds are a big part of our treatment.

I have heard of ladies trying Zoloft and having some success there.



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Re: Finding the right medication.

Post  lisa98 on Fri Apr 29, 2011 9:29 am

I'm on amitriptyline and it didnt seem to have an effect for the first few months (except to make my fat and constipated. good times.) but at the same time I have been doing physio and meditation, improving my diet, using sea buckthorn oil to moisturise the area and trying to be less stressed out, and have been steadily improving. I know others have reacted badly to amitriptyline but I have found the side effects are okay- once I eased onto it and had been on it a while. My approach is throw as many things at the condition as possible and hope some of them work.

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FINDING THE RIGHT MEDICATION.

Post  ria on Fri Apr 29, 2011 12:10 pm


Thank you all its so interesting to hear what others are using. Well I have moved my efexor dosage up from 75mg to 150mg feel like things might be settling. I always get afraid to say oh I think its gone because it might come back Sad Sad Sad Sad Sad Sad Sad Sad
I believe very much in Holistic therapies but my lesson in life is that we have to use what ever we can to be pain free. Over the past 4 years all I have researched is vulva conditions doctors and female anatomy I find myself looking at other women and thinking have you got this are you alwright, and I often wonder if any celebrities have it and wouldnt it be great if they spoke out. As I said I have the Biofeedback from Dr Glazier it hasnt worked on its own for me but I use it with the medications, he said there was no need to take tablets, well its easy to say when you are not feeling the pain. Today I am watching the Royal Wedding Prince William and Kate, I was thinking how wonderful they both look Very Happy Very Happy Very Happy Very Happy Very Happy Very Happy Very Happy Very Happy Very Happy Very Happy Very Happy Very Happy Very Happy Very Happy its like a fairy tale wedding here in the UK something for us all to enjoy. I send love and light to all you ladies and whatever works for you is the best way forward but it is good to read how others cope.

Thank you lovely ladies

Ria Mad Laughing Laughing Laughing Laughing Laughing Laughing Laughing I love you I love you I love you I love you I love you Laughing Laughing Laughing Laughing I love you I love you I love you I love you

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Re: Finding the right medication.

Post  Mouse on Fri Apr 29, 2011 8:58 pm

Hi Ria,

When I was watching Kate I was thinking I hope she doesn't have vulvodynia! I don't think this asshole condition would discriminate.

I tried Ami and Gaba but I'm not a great candidate. I have a low tolerance for everything so went mad on it. Well a wee bit more mad than I already was. I think like Lisa said throw everything at it!

Have a crack at holistic healing. What have you got to lose? I tend to say to myself the diet restrictions are temporary. It's a bit of a detox getting rid of sugar affraid but it's well worth it.

I planned for months to have easter eggs AND boy did I have easter eggs. Unfortunately I was also a wee bit stressed, started a new job which meant upping the coffee intake, my physio has been on holiday for a month, I got out of the habit of meditating and I got my period. So relapse time for me! Before that I was about 90% pain free.

I'm back on track now, a week later and the pain is tapering off - I think. I have the constant burning as well. In fact at one stage this week I had it in my backside - fun times!

I think try everything you can, we are all different. But certainly take control of the things that you can. It's very empowering Very Happy

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finding the right medication

Post  ria on Fri Apr 29, 2011 9:22 pm

Hi Mouse,

Just read your e mail whilst watching the re run of the Royal Wedding. Can you imagine if Kate did have this condition, sitting on ice when the fire is burning. All the best Doctors would be brought in to treat her and then maybe like Princess Diana she would talk about it (bullimia Diana raised awareness) and let everyone know the hell we all go through , and the Doctors we have seen who look at us like we have a slate missing.

I have increased my medication from 75mg to 150mg and things seen to be settling I was doing well on 75mg Nortriptyline but had an allergic reaction, been in pain trying to get control with meds. GUMed is our free hospital clinic for anyone with sexual diseases, Yes I was shocked never thought I would be going there but they were fantastic understanding this condition and then referring me to a vulva clinic, I am trying venlafaxine effexor so we will see how it goes. Hey Mouse hope you are well its just a pain when Med go wrong and you are back to square one.

take care

Ria
Laughing

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Re: Finding the right medication.

Post  jules on Sat Apr 30, 2011 3:05 am

Hi Ria, glad to hear you are settling in a little bit. I am of the philosophy that we try 'EVERYTHING' to kill the pain. i have tried it all and i am moving forward. I am currently on Gabepentin and have been for over a year. i am on 3600 mgs..(the max). I am also on Lyrica, 150 mgs. (was up to 300 mgs, but didn't like the weight gain), and i'm on Cymbalta, 6o mgs..but plan to increase in a couple of weeks. I have had 4 nerve blocks (no relief), physical therapy, behavioral therapy, tried a tens unit, take Vicodin (3x per day), have used lidocaine gel along w/ every cream and gel there is (they all burned my skin). I stopped P.T. in November, but started back again this week. NOW, the big plan: i plan to have a Neurostimulator implanted under my skin (battery is implanted in upper butt cheek area). feel free to look it up. my doc will surgically inplant wires in my spine. i will have a one week trial period. i will have a remote control which will send signals (vibrations) that interrupt the pain messages i the nerves to the brain. The doc told me my vulva will be vibrating and that may be a weird feeling..even stimulating. (hmmm, can't imagine that at work). If it works, i will have it implanted permanently (at first the device is on the outside). so, i continue to move forward. i have had some success w/ the combination of gabepentin and Lyrica. but, after awhile, i needed to add something else. it's a matter of finding the right combination of meds. hope you're still doing well.

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Re: Finding the right medication.

Post  noni on Sat Apr 30, 2011 5:15 am

Hey gals,

I share the same sentiment...throw as much as possible at Vulvodynia (within reason ofcourse)...

When I first started out with Amitriptyline it took a good four weeks to see ANY improvement...now at 50mg I can finally function!

I also use the dilators to help with the vaginismus...muscle spams in the pelvic region etc..

I have decided that if my pain returns I will try Lyrica.

In the past I was totally anti-prescription/pills/meds...however, with a pain condition...especially of this nature i say to hell with that mind set! Im telling you five months ago I was DESPERATE!

Im just relieved that this forum exists and we are able to support eachother.

Sending love,

Noni
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FINDING THE RIGHT MEDICATION

Post  ria on Sat Apr 30, 2011 11:49 am

Hi Ladies,

The more I read all your heartfelt ways to live as normal life pain free, I am wondering if a pain clinic would be better than the vulva clinic for me as the doctor is a gyn and not really that up on vulvodynia other than prescribing pain management so I wondor if a pain clinic would be better. You know kill the pain whatever it takes then the nerves heal and bobs your uncle Razz Razz Razz Razz Razz Razz Razz Razz The effexor is an snri and I have read it is used for peripheral pain so this is the one I am on now I was on 150mg yesterday doing ok just free my clothes sensitive on my lady bits but not burning. I follow Dr oz and he did a programme on vulvodynia I only saw a bit on you tube but again pain management was all he spoke about antideppressants.......................Oprah should do a programme on it like she did for BioIdentical Hormones maybe get Suzanne Somers on the case? Ah well lets keep our fingers crossed you never know whats around the corner bounce bounce bounce bounce bounce bounce bounce bounce bounce


Keep Smiling

Ria

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Re: Finding the right medication.

Post  jules on Sat Apr 30, 2011 1:50 pm

Ria, i highly recommend a pain clinic. Gynecologists do not know how to treat nerve pain. I went to a world renowned medical facility to get my diagnosis of Vulvodynia. Once i was diagnosed, my doctor there had no idea what to do for me to treat the pain. She told me she didn't know what more she could do for me after i had no relief at 1800 mgs of Gabepentin. I then went to another doctor and asked for a referral to a pain clinic. Also do the other things...P.T. and any natural things you want to do. I did have a lot of relief for quite some time. Good luck and have a great day!

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Re: Finding the right medication.

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