vulvadynia pain and advice

[Curly22]

Hello all,

i have been diagnosed with vulvadynia & just wondered whether anyone else has had pain in the muscle (not sure of what it's particularly called :s) just above the vagina. It's there when i sit down and walk, a taking gabapentin (300mg daily) at the moment but think i need to up the dose x

Update- Hello again ladies, i've been looking through my old hospital letters and i did have some success with a cream called TRIMOVATE. The itching and rawness did help me but my Consultant says that this isn't given to patients anymore. Is this right for all of the UK?

[Joolibee]

Sorry about your pain, Curly. I’m not sure which muscle you are referring to, but any pain can cause muscles to tense. This in turn can lead to increased pain, possibly pinching nerves. The pudendal nerve is the main nerve in the genital region and this can be linked to pain with sitting. Anxiety can exacerbate pain, so relaxation is important. You are on a very low dose of gabapentin and I’m guessing that your doctor will be able to increase it over time. I was on 900mg per day before I noticed any improvement at all. I don’t know what tests you have had, or if you know what caused your pain, but in my experience, the things that have helped most have been specialist pelvic floor physio, medication, gentle exercise and regular meditation. There are several books relating to pelvic pain and to pain management in general. A good starting point might be ‘A pain in the Pelvis’ by Amy Stein, but there are others. I hope you manage to find some relief soon.

[Curly22 in reply to Joolibee]

Thanks so very much for replying. Unfortunately i've had the pain since i was little, i remember going into the sea with the sea salt was so painful i couldn't play i there for long

Sorry to be confusing..... it's the area just below the urethra and above the vagina, i've tried to diagnose myself ( & have a look) as i've seen two consultants who specialise in this but it's been a fight to get any sort of treatment. I shall chase them again and try and up the dose of the gabapentin. Shall have a look at those recommended books too, what a hoohah lol! xx

[edythe in reply to Curly22]

Sorry to hear about your problems. Taking into account what you say about the sea salt and the fact that you've had the pain since childhood, maybe you should find a dermatologist to have a look at it. Otherwise I agree completely with joolibee as vulvodynia is connected to the pudendal nerve. A specialist physiotherapist often has more experience and knowledge than many doctors put together. I hope you find some real help soon.

Edythe

[Curly22 in reply to edythe]

Hello Edythe,

Thank you for your help. I'm seeing a Dermatologist but it's still difficult to get a diagnosis. When i mentioned that i can't sit for periods of time, she remarked that you shouldn't sit for periods of time in front of a computer! I know this but it's difficult when you'r job is in front of a computer. Hope to see a different Consultant next time, fingers crossed

[Curly22]

Hello, thanks very much for replying. Unfortunately i've had the pain since i was little, i remember going into the sea with the sea salt was so painful i couldn't play i there for long

Sorry it's the area just below the urethra and above the vagina, i've tried to diagnose myself ( & have a look) as i've seen two consultants who specialise in this but it's been a fight to get any sort of treatment.

[Konagirl60 in reply to Curly22]

It sounds like you have perineal pain? Sitting hurts to as does walking so leads me to believe the rectal branch of your pudendal nerve is agitated as well. Are you able to sleep normally without being woken up?

Is your pain electricution like sensations? Does it burn terribly? Is the area always loud and twitching? Do you feel like a stone is in your anus when you sit?

Vulvodynia is a term for pelvic pain when doctors cannot make a conclusive diagnosis. Have swabs of vaginal secretion(s) been sent for microbiologic testing? Did your doctor examine you for any genital rashes or intensely red and chafed genital tissue?

Suppositories with Valium and Lidocaine may help you if sleep is a problem. They must be prescribed and the are Custom made and Compounded. Good luck.

[Curly22 in reply to Konagirl60]

Thank you for your help, it's like a burning pain (like when you burn your hand) but definitely worse when sitting and have the pain when i'm lying down. I don't have electric type senses and it doesn't wake me up but i wake up with it in the morning when i go to work.

Yes swabs have been taken but no results found, not able to ride my back now either, literally a real pain. Shall ask my doctor about the valium and lidocaine. I'm not seeing my Dermatologist until December though Can i ask whether you are medically trained? It's so refreshing to get such great advice on here x

[Konagirl60 in reply to Curly22]

I am educated. I worked in the busiest acute care hospital where I live for 30 years. I am well read on medical issues and terminology. I have a diploma and a degree in Science.

[Hidden]

I tend to agree with the posts you've already had. I've started to see a women's Physiotherapist and I think she probably knows more than any specialist I've seen over the last 14or so yrs. and believe me I've seen some of the best.

[Curly22 in reply to Hidden]

Thank you so much, shall look into this now

[pieper]

you should up the dose, i take it 600 mg a day and it helps.

[hurtsmealways]

I have had the pain, and it is severe. At this time I am using a suppository which is

a muscle relaxant, pain and stress medication. It is a compound drug. Helps a little

but at times, pain is unbearable. My Dr. says he will find a way to manage the pain,

starting with pelvic therapy this week.

[Curly22 in reply to hurtsmealways]

Thank you and sorry to hear you're suffering too, i've upped the dose to 900mg daily so hope to see an improvement soon x

[Lolarufus123]

Has the gapapentin been working in the past? I am on Pregabalin and have been for the past 10 months. I was on 150mg a day and it stopped working so I upped it to 400mg and this is working now.

[Curly22 in reply to Lolarufus123]

Its the first time i've been prescribed but upped the dose to 900mg (still painful) but only done this a few days so will keep you posted x

[Lolarufus123 in reply to Curly22]

Good luck i hope it kicks in. I find it's the only thing that works for nerve pain. Even so it only really takes the edge off.

[Smollyholly]

Hi ask your gp for a referral to a gynaecologist that deals with skin complaints

[Curly22 in reply to Smollyholly]

Hi SmollyHolly, i'm already seeing one but even though she said she'd prescribe it she hasn't in the end