Hi someone please help me

[b]Hi my name is Hannah and i have been told that i have Vulvodynia, im so glad i found this forum and talk to people that know what im going through.
It started about 3years ago and was always going to the doctors to be told its thrush or all in my head!! It was unbearable to have sex so basically we didnt (if i didnt have sex no burning or pain was there at all). Then i got a new partner (who im with now) and can stand having sex its afterwards that makes it not worth while.
To cut a long story short and not babble on i have sex then afterward it burns so much im in salt baths for god knows how long, cant wear pants/knickers, cant walk or sit down, unbearable to wee and feel like i need to wee constantly and cant sleep then after about 4 days it eases off and i can be back to normal then have sex again and it all starts again.
Im currently using trimovate cream and have just read about anti depressents so iv just stated taking them as i have some from migranes. I will try anything!! I was up through the night again and tryed putting a frozen tea-bag down there and it did ease the burning and was able to get a few hours sleep but this dosnt get rid ov it
If anyone knows anything that i could try wen im up during the night just to ease the burning i will try anything lol.
I hope this makes some sort of sense i fell as thogh the doctors are rubbish as when i turn up in tears they say "thers nothing we can do" and i just want some help.
Oh i had a glass of wine 2 nights ago which triggered it off and im still burning....does anyone know why??
Thanks alot

Hannah

Hi hannah and welcome to the forum. Sorry its taken me a few weeks to reply.
I know what you mean about the burning paim after sex. I'm not in a relationship at the moment but when I was I could only have sex once and then would have to wait days for soreness to go. When I get a flare up now for any reason I sometimes take a pain killer like ibuprofen. Sumtimes it helps. I'm also hoping to find out what works for others during flare ups. Are you seeing a gynecologist? Its difficult to find a good doctor who is not going to tell you its all in your head.
Have you tried lots of lubrication during sex like ky jelly? Maybe less friction would ease the after effects.
Let us know how your treatment progresses
Sebby x

Hi Hannah and Sebby,

I just wanted to say, don't use a lubricant such as KY Jelly. I have used it and it definitely makes the burning worse. The pamphlet I received from my uro-gyno on Vulvar Pain from the Interstitial Cystitis Association says "During sex, avoid the use of lubricants that contain preservatives and chemicals. Pure almond oil or vegetable oil or commercial lubricants with glycerin (such as Astroglide) are usually tolerated the best. Apply these at the initiation of sexual activity, since being touched is often as painful as intercourse itself." Personally I have not tried any of the ones they suggest, but I just wanted to let you know that my experience with KY Jelly has NOT been good! If I would try a lubricant, I would try Pre-Seed (www.preseed.com). They claim their lubricant is less irritating than leading brands, and also doesn't kill sperm. So I haven't tried it either, but I might, especially since I am trying to conceive, too.

Rhonda

Thanks for the info chinchilla. Good luck with trying to conceive. Do you know if the lubricants you suggested are safe to use with condoms?

Hiya, thanks for gettings back to me,
Since i wrote that messege i went back to doctors to see a different doctor and he wanted MORE swobs which all came back negative but did say there was a bit of thrush and im now being tranferred to a gyno (which the doctor cudnt believe i hadnt been transferred sooner since iv been like this for 3years) to have a smear in about 3weeks. I have tryed lubricants but duznt help. So iv come to a conclusion that im not having sex now till iv seen the gyno lol cant cope with the burning and pain anymore would rather go without. I havent tryed taking pain killers when its flurred up but will try it next time.

Thanks
Hannah x

Good luck Hannah, best not to have sex when you got thrush anyway. You need a break. Hope the Gynea can help you.

Sebby
xxx

I'm hoping the anti-depressants help you. I am taking Neurontin (a anti-convulsant). I am at a high dose of 3000 mg. The low dose did not help with the pain. It does take a few weeks to work at least. Is your pain inside the vagina or right in the opening? There is a surgery that can be done to remove the skin right in the opening of the vagina. There is a very high success rate with that. For the burning pain, I keep gel packs in the refrigerator. They come in hand when needed. i have not had to use them for a few weeks. I also recommend a pain clinic. Gynecologist are not known for the expertise in treating pain. I just started going to a pain clinic. I received my first nerve block through the lower spine two weeks ago. I am going for a second block this Wednesday. I don't know if it will help. But, I'm willing try anything. I used to have horrible pain after sex. I think the Neurontin has helped significantly. Don't give up. If you don't get what you need from your doctor or if he/she does not have knowledge of this disorder...try someone else. Good luck!

heya, my pain is inside, its hard to pin point where it is but definatly inside lol. went to the gyne and they couldnt see anything (im sure she thinks its in my head as iv been sent on a corse to "talk" about it.) The next step is now a transvaginal ultra sound which im having tomorrow im preying that they see somthing i just want to be told "yes there is somting there" so fingers crossed. I have heard about that operation and mentioned it to her but she said lets try other things first but if this scan dosnt show anything im going to demand it lol. Still not had sex so no bad flur up but can still feel it there, good job iv got a understanding boyfriend .
Thanks

Hannah x

Hello, the doctor I saw at the Mayo Clinic recommended K-Y INTRIGUE to use as a lubricant. It is in a purple box and more costly than the other K-Y lubricants. This lubricant is water-based and it can be used w/ condoms. It may help w/ the lubrication part of sex, but of course, it will not take away the pain.

As far as sleep, have those who can't sleep because of pain tried any sleeping medication? I take trazadone for sleep. I have for years. I believe I have been able to sleep because of the Trazadone. Otherwise, the pain in the past may have woken me up. I am also on anti-depressants (Paxil). I was already on this before diagnosis, but when I was diagnosed I increased the dose.

Meds that have helped me w/ my pain is Neurontin 3000mg and Lyrica (now 150 mgs). Ladies, don't wait around for your doctors to help you w/ pain relief. If they don't know what to do, see another doctor. I had to shop around. I have shared that the my last stop at this point is a pain clinic. I was prescribed Lyrica and I was also give pain meds so I can sit at work. The doctor prescribed Vicodin. Keep in mind, your gynecologists may not know how to treat pain. I also plan to start physical therapy fairly soon (at a Vulvar Pain Clinic).

I have heard acupuncture can be helpful for some people. Has anyone tried it?

Hi, I'm waiting for appointment for accuputure at barts, will let you all know how i get on.( if my appointment ever comes.

Did anyone see embarrassing bodies a few months back , a woman on there had vulvodydnia and was sent for accupuntuer, and felt a lot better, she said at last she got her life back,. I really hope and pray that one day everyone of us will be saying that.

Has anyone else with vuivodynia got pain in there anus area, because at the mo i feel i'm the only one whose got it.
Also any tips on washing,is anyone using aquous cream,i use it on my bottom, i was told epaderm cream was good,has anyone used it. Thanks

All take care, maggie xxx

please let me know how the acupuncture works. I did not see the show you mentioned. I do not have any pain in my anus. But, i have read that the pain can go all the way back. All of my doctors have told me that the vulva does not need to be cleaned w/ anything other than water. I have not heard about any creams etc. The anus probably needs to be washed don't know what to recommend.

Hi Maggie, I saw the episode of Embarrassing Bodies you're talking about, I've also seen several women online say they made some improvement from Acupuncture too so it's definitely worth a try.

Cetaphil is good for washing because it is soap free and moisturising. I have read that vulvodynia can affect the entire perineal area and even the inner thighs too.

I did see that show, I was a little disapointed actually on the lack of info.

Yes let me know if the Acupuncture works, it is something I have thought of, trouble is I dont want to try all different things at once and then I will not know what is working! lol

Sebby
xxx

hi maggie, just saw ur question and to try and answer it, i have pain all over, as the anus is included in the vulval area. i use aqueous cream but to be honest every time i tell the doctors about it they focus on other areas. looking forward to hearing about the acupuncture xxx

Hi julia.How do you get on washing in that erea,i have to dry myself with very soft toilet paper very gently,it's a nightmare. be helpful for any idea's.

maggie x

Hannah...are you using condoms when you have sex? If you don't have pain any other time, and only after sex..could there be something going on with some product you're using each time, be it a condom, or the lubricant or something?

I think it's interesting that your pain begins only afterward.

Hi Maggie

I also get pain in the anus area it's horrid feels really heavy, dull and tight and aches. I use Cetraben cream for that area... but like others are saying ideally water on it's own for the vulva as the Cetraben made it sore so stopped using it in the vulva.