Finding the right medication.

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. I no I am rabbling but its the pain had biopsy blood test all the usual nothing So then I went to my local GUMed they are fantastic as I say got relief with the Nora but back where I started 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 You know whats funny I hate taking tablets now I am becomming an expert on medication like choosing a fine wine 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

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!

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 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 On the up side I am going to get better its just that with the flare up I am well cheesed off its like a bloody curse 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)

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.

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.

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
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 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

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 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

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

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.

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

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 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


Keep Smiling

Ria

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!