Hello,Ive had fibro,ic for 25yrs..plus pelvic problems and HORRIBLE vulvadenia Im in pain 24/7 cant go anywhere. Ive had lots of meds thru

the yrs and have tried pt twice maybe 3 times each time they told me I might as well quit Id get some relief while laying down but then just as soon as I sat up it all came back.When I pee its like hot acid in me and out.everyone that sees me says u r soo red but all they do is lidocaine or to use olive oil,it doesnt help.I sting so much it hurts to walk.IM DESPERATE!! Any ideas?

20 Replies

  • Hello helpinNashville, have you asked to be referred to see a Gynacologist? I do understand in away what your going through as I suffer with a problem down below since coming off my HRT it gets dry and splits so when I pee it burns like it does with you! I usually use thick nappy type cream to soothe it which helps also, and wash with Aqueuss cream this is very good, your doctor can prescribe it for you or you can buy it in a Chemist. I do hope I've been of some help? I really feel for you, and hope you get some relief or someone else can give you some advice. Love Aisha x

  • Where do u get nappy cream? Ive seen my gynocologist for yrs and my urologist,went last weel and they said the redness was from the vulvadenia,got a rescue solution,and trigger point injections..thought I was goona pass out I screamed my muscles r so tight,going to start seeing a pelvic therapist again,put me on Elavil and gave me baclofen cream which doesnt do a damn thing and then when I pee Im in agony. How do u use this nappy cream where do I get it!? Thanks for responding.

  • Aisha,what kind of thick nappy cream and do u put it on every time u pee? Thank u for responding my uro said to use Crisco.but no relief there

  • So sorry I know the feeling the acid burning was so bad for so long I wanted to die. The pain was everywhere and unbearable. This is what worked for me after much experimenting and a hundred doctors. Drink only water,lots. No chemical soap, magnesium vitamin, flexaril for the pelvic muscle spasms, walking for better blood flow to the area, nortriptyline was my life saver, its for nerve pain, no processed food, no citric acid, stress reduction is super important, try to distract yourself, I know its hard but try to break the cycle of pain. If your depressed address it with your doctor because your mood greatly effects your pain level. Watch comdies ,try to laugh. Research chronic pain, stay educated..seek out a urogynocologist. By the ic and vulvodynia survival guides used from the internet. Amy steins healing pelvic pain is good too. Keep your body clean, zero junk food. Tramadol is a mild prescription pain killer that works fort me during my flare ups. Please mention these to a doctor before trying any. You'll get better. Nerves heal. Good luck

  • Thank u so much for the advice,they put me on Elavil and a baclofen cream which isnt helping.I went to my urologist and had a rescue solution,trigger point inj.I screamed because my muscles are so tight and angry,and going tp start pelvic therapy again...my birthday is Sunday and my brother is having his son dedicated to the Lord at his church,and then dinner catured,I really dont want to miss it,Im on oxycontin 10mg then percocet 10s when needed I can only take 2 a day they help with pelvic pain for 2 hrs.but doesnt touch the vulvadenia...thanks for caring,do u have to c a neurologist for the nerve meds? Ive thought about going to go c one anyway,because I know my nerves have got to be damaged.

  • No my urologist prescribed me nortriptyline and the pain clinic was clueless. Regular pain meds don't work well for nerve pain that's whypeople with chronic nerve pain try other classes of drugs like anti convulsants and the tricylic anti depressants. These tend to be more effective. you can also mention diazapam suppository instead of baclofen. Hang inthere, I didn't think I would survive and I'm OK. You'll be OK too but it takes time to figure out what works for you.

  • Thanks for the advice,I'll ask about it!

  • Juliansmum is nortriptiline the same as amitriptiline and have you tried both, if so which one and why do you prefer?

  • They are same drug class tricyclic antidepressants used to treat nerve pain at a low dose. Amitriptyline is know for having severe side effects I've never tried it but knowing I'm very sensitive to meds my urologist started me on nortriptyline 10 mgs. I surprisingly had no side effects and was able to slowly taper up to 40 mgs. I was in less pain after only a few days and I had been nearly bedridden prior. I've been on it for over a year and my life is livable. I take some other meds as well. I'm not pain free but my quality of life is greatly improved.

  • Gosh, so sorry to hear that, my pain is pretty much 24/7 but not quite as bad as yours, however lying down can make mine worse and walking makes mine worse. So, I sleep on my side with 2 pillows between my legs (takes a bit of getting used to), often wake up with pain so take my medication and spend the day stood up but not walking far. My pain levels vary, when very bad wee burns and feels like I am peeing with a pea stuck up my urethra. The only way to keep my pain at a reasonable level is to stay at home and stand pretty much in one place. Of course then the legs start to swell and I now lay down again for significant parts of the day. As you can see not much of a life but I've got used to it and it is worth it to keep the pain levels down. Sorry no help to you and I am just thinking of going down the PT rout. Please can you tell me who you went to and where.

    I think we all need to find a way of raising the profile of our problems as does not seem as if any money has been but into research in the UK. Perhaps we need to bombard our local MPs with letters. Any other ideas?

    Good luck in finding a solution, take care, Marion

  • I see a dr. Barry Jerrnigan in Tenn.United States,see the other replies Ive already replied to ,I hate that u dont do anything either, it gets so lonely.mine still BURNS even when laying down..Im really depressed because my birthday is Sunday Ill be 50 yrs.old.that means half of my life is over and its been painful for 26 yrs..now almost bedridden..thanks for caring.I hope u get relief soon.

  • I really understand as I've vulvaldynia since 2005. It is such a nasty thing to have and also a lonely condition . Not something you can really talk to people about. Not sure if you are in the uk and if you are , where you are. I've seen a super dr in London who is so understanding. Her name is Miss Wendy Reid and her NHS is at the Royal Free Hempstead London . She has a private practice too . She is really wonderful . Hope you feel better soon

  • Im in the United States Im glad u have found a good dr.keep him or her,what do they say to do about it?

  • Hello

    Sorry to hear you are in such desperate pain. It's awful I know.

    For problems with passing water, have you tried using Vagifem 10mg - which is a very low dose topical estrogen (a small tablet inserted into the vagina). I had years of cystitis/urethritis symptoms which made it very painful to pass water. Eventually a gynaecologist tried me on Vagifem (for menopausal vaginal dryness), and the relief was almost immediate. At the time I was only 46 years old, and to me the vaginal dryness wasn't apparent.

    As we age our estrogen levels drop, and the urethra is very sensitive to this decline in hormone levels.

    At around the same time I also had to have a cystic lesion surgically removed from the wall of my urethra/vagina (this was carried out by Professor Wendy Reid, mentioned above – I am also in the UK), which resulted in agonizing nerve pain for months afterwards. I found that the Vagifem was also extremely helpful in reducing this pain also.

    I don't know whether it would help with your pain, but I also found a lot of relief using a device called a Cosmodic Scenar (http://www.scenar.ru/en/)

    It is a neuro-stimulator, developed by the man who invented the Tens Machine. The concept of a neuro-stimulator may sound counter intuitive, but it calms nerve pain really well rather than aggravating it. I initially saw a practitioner in North London, who used a device, and after a session it was the first time I haven’t been in agonising pain for six months, following this surgery. I needed treatments every few days, so in the end I bought a device myself – which was expensive but worth it.

    The other thing I have found helpful for reducing nerve pain is turmeric. It’s a good anti-inflammatory. I was recommended it by an Indian lady who said to melt a small amount of butter, add ¼ teaspoon of turmeric and cook in the butter for a couple of minutes, and then add ½ - 1 cup of milk, and bring to the boil. Add sugar or honey and drink it. It sounds horrible – and is a rather amazing yellow colour - but actually tastes very nice and mild. From studies I have read, it appears that cooking the turmeric helps to release the anti-inflammatory property of the Curcamin (the active ingredient in turmeric).

    I also use turmeric in rice dishes.

    I apologise for the long post, and hope its some help.


  • Thank u for responding,I don't remember if I've tried valorem or not,after 26 yes u kinda loose track!Years ago I did have a neurostimulater put in and they never could get the settings right,my leg would twitch,etc.It was So Painful,I had it taken out about 6 months later.my neurologist wants to talk to me about an interstim, the trial

    Takes 1 week,its gonna be in my back with a settings device,I'm scared of trying because of the experience of the neorostimulater,I've checked into a pain pump,that would only be for 24 hrs in the hospital..I'm so confused.

  • I'll defiantly try the turmeric recipe can u put it in the microwave? Ur right if does sound yucky can u put it in yogurt,just a thought

  • Hi helpinnashville I have suffered with ic and ibs and pelvic discomfort for 5yrs on and off. My Dr prescribed amitriptiline 25mg at it's worst I was on 75mg, although following the birth of my 4th baby went into remission and have been totally ok with no pain or pain relief, until a week ago I had a very nasty flare up of the ic and was in agony, went back on amitriptiline 20mg and as each day goes by its getting easier, have you ever tried this drug?

  • I've been on amitriptaline for abt 6 months now at 25mg at nt.still looking for relief,maybe if I could.try it in the daytime as well I'll check into that,so glad it helps u

  • Hi, Just wanted to say I just had my 50th birthday on Sunday and have been in the same boat as you for (Fibro, ic etc for many years so I think I know a little how you feel right now.

    I saw this video another member posted on anohther reply and Ifound it extremely useful not, only because it also made me aware to try Low dose Naltrexone and hopefully not have to be on lots of medications that do not tackle the root causes. Sorry cannot explain more myself right now but I reccomend watching this

    Best Wishes for Sunday!

  • Jusr realised this was a very old post that I have replied to (Fibro Fog) but hope you see it!

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