i want answers!!

dmilly01 Wed Mar 20, 2013 12:01 pm

I am 49 years if age and was diagnosed with vulvodynia last year. Well actually I diagnosed myself on the internet, then was sent to a consultant at the hospital who did a q tip test, and confirmed that I had it Sad

I was put on amitriptyline, which gave me a foggy head and I put on weight! not good. I was then put on gabapentin, which was even worse, as I had severe depression, weight gain, memory loss and kept losing my balance. When I went back to see him a couple of weeks ago, he told me that there was nothing else he could do for me, but has referred me to a pain specialist instead. Here's hoping that he can do something! I am also having a full blood test done this Friday, to check my autoimmume system, as I also have endometriosis, ibs, asthma, follicles removed from my cervix and I had an erosion Sad

I am really fed up with this awful chronic condition, I can't even have sexual intercourse with my husband of sixteen years now, because of it, as it is just too painful! I have been on vagifem for around four years, as thought could be due to going through menopause. But it hasn't made any difference to the pain! the only thing that does help, if I have a really bad flare up, is lidocaine 5% ointment, which I put onto a cotton wool ball at night and insert deep into my vagina, it does help me to sleep, I sometimes use it during the daytime as well. it did help with sex when first used it, but not strong enough now to numb it. I am normally a happy go lucky sort of person, but this condition, makes me feel very low at times, I just want answers! I will keep you all posted on how I get on with the blood test results and the pain specialist. I have heard that bio feedback can help up to 60% of women with vulvodynia, so here's hoping!!

Alana3 Wed Mar 20, 2013 1:31 pm

You can get gabapentin/ami put into a compound that you put as a cream directly on your irritated skin. Phsyio helps but for me I couldn't handle it because my skin was so damaged. I finally had surgrey this past December and it has changed my life. When I got the skin removed, I was finally able to participate in the PT and that has helped now, but before it hurt too bad to continue with it. I don't know what a pain specialist is going to do unless he/she is competent in vulvodynia. You can look at the NVA website and view specialists around your area, or if you don't want to pay the money just google wherever your from and vuvlodynia specailsts. That's how I found my doctor!

jen007 Thu Mar 21, 2013 12:20 am

dmilly01,

I have tried all the treatments you mentioned above. None of them helped solve my problems accept for the amitriptyline, but I had to stop taking it. My doctor told me it would make me gain weight, but I actually ended up loosing between 15-20 lbs. It's totally unheard of to lose weight from amitriptyline so I thought that was pretty strange. It just completely curved my hunger so I skipped meals a lot. Gabapentin did nothing. I took it orally and hand it compounded into a cream. It didn't change anything at all. Lidocaine was a quick fix, but it did really help ease the pain on days where I had flare ups. I still use it now when I have sex to help ease the pains I get afterwards. I also had the same surgery as Alana and I no longer have any pain..I have/ had PVD which I have little to no symptoms of anymore. Surgery is a last resort and should only be done if you have exhausted all treatments. I'm not sure if a pain specialist is the way to go. You should look into finding someone who specifically treats vulvodynia. Try checking your local hospitals for gynecologists. I had seen about 4 doctors and felt hopeless after none fo them could help me. On a limb I called my local hospital just out of desperation and they had 2 vulvodynia specialists. I couldn't even believe I was so close to help for soo long and didn't even know it.

Stay hopeful!

-Jen

Sarah001 Thu Mar 21, 2013 2:19 pm

Hi dmilly I see you are from the UK which means you most likely won't be able to get the cream mentioned as we don't have compounding pharmacies as far as I'm aware. However there are a few vulvar specialists, there's a vulvar dermatologist who travels from hospital to hospital and she checks for skin diseases and if none are found would recommend meds for your GP to prescribe. There is a vulvar doctor called David Nunns who works at Nottingham and he has a team of women's health physios who work with him so he can refer you to them if you see him and of course you have the option to ring your hospital and ask if they have a women's health physio you could get your GP to refer you to, I did that and while I had her on the phone asked lots of questions before getting referred so they don't mind if you ring them direct.

dmilly01 Fri Mar 22, 2013 6:51 pm

Alana3 wrote:You can get gabapentin/ami put into a compound that you put as a cream directly on your irritated skin. Phsyio helps but for me I couldn't handle it because my skin was so damaged. I finally had surgrey this past December and it has changed my life. When I got the skin removed, I was finally able to participate in the PT and that has helped now, but before it hurt too bad to continue with it. I don't know what a pain specialist is going to do unless he/she is competent in vulvodynia. You can look at the NVA website and view specialists around your area, or if you don't want to pay the money just google wherever your from and vuvlodynia specailsts. That's how I found my doctor!

Hi Alana3 Thank you for that. But my consultant wouldn't even consider me using anything topical, other than the lidocaine, possibly because of the cost!. He would not consider surgery either, as did not agree with it. I will have a look at the NVA website though and view specialists in my area, although too be honest I think my consultant is the only one in my area, who knows a little bit about vulvodynia and his medical experience was very limited he told myself and my husband. if we do not have any joy with the pain specialist, who does not actually deal specifically with my condition, then we may have to travel further to get answers. We will have to wait and see! Thanks againx

dmilly01 Fri Mar 22, 2013 7:00 pm

Sarah001 wrote:Hi dmilly I see you are from the UK which means you most likely won't be able to get the cream mentioned as we don't have compounding pharmacies as far as I'm aware. However there are a few vulvar specialists, there's a vulvar dermatologist who travels from hospital to hospital and she checks for skin diseases and if none are found would recommend meds for your GP to prescribe. There is a vulvar doctor called David Nunns who works at Nottingham and he has a team of women's health physios who work with him so he can refer you to them if you see him and of course you have the option to ring your hospital and ask if they have a women's health physio you could get your GP to refer you to, I did that and while I had her on the phone asked lots of questions before getting referred so they don't mind if you ring them direct.

Hi Sarah001 I was wondering if that was why my consultant didn't even consider the cream. I even asked my doctor's for it, they just said that it would be too expensive to even consider that as an option, and the BMA wouldn't even consider it, also I read somewhere if the oral gabapentin didn't work, then the topical possibly wouldn't either, not for me anyway! I will look up David Nunns at Nottingham and have a chat, also I will ask at my hospital if they have a women's health physio, as I hadn't thought of that! thank you! Smile

dmilly01 Fri Mar 22, 2013 7:19 pm

jen007 wrote:dmilly01,

I have tried all the treatments you mentioned above. None of them helped solve my problems accept for the amitriptyline, but I had to stop taking it. My doctor told me it would make me gain weight, but I actually ended up loosing between 15-20 lbs. It's totally unheard of to lose weight from amitriptyline so I thought that was pretty strange. It just completely curved my hunger so I skipped meals a lot. Gabapentin did nothing. I took it orally and hand it compounded into a cream. It didn't change anything at all. Lidocaine was a quick fix, but it did really help ease the pain on days where I had flare ups. I still use it now when I have sex to help ease the pains I get afterwards. I also had the same surgery as Alana and I no longer have any pain..I have/ had PVD which I have little to no symptoms of anymore. Surgery is a last resort and should only be done if you have exhausted all treatments. I'm not sure if a pain specialist is the way to go. You should look into finding someone who specifically treats vulvodynia. Try checking your local hospitals for gynecologists. I had seen about 4 doctors and felt hopeless after none fo them could help me. On a limb I called my local hospital just out of desperation and they had 2 vulvodynia specialists. I couldn't even believe I was so close to help for soo long and didn't even know it.

Stay hopeful!

Hi "jen007, I am not considering surgery at all, as I have been through sooo many operations, with my endometriosis in the past, that I don't think I could face another one to be honest with you! My consultant was actually a gynaecologist! and his experience with vulvodynia was very limited, which he admitted. I did go privately, so I think I might go through the NHS and ask at our local hospital, if there are any Vulvodynia specialists. Thank you for that. I will see what the pain specialist has to say at first, as he might be able to direct me to a vulvodynia specialist himself, seeing that he deals with chronic pain problems. I have heard that biofeedback can help up to 60% of women with vulvodynia. I have just bought some dilators from Anne Summers, They were actually Anal ones!! But because they are smaller than normal vibrators, I thought they wouldn't hurt too much, and it would be a start anyway. The practitioner nurse did say if I had no joy, I could go back to her, and she would look at what to do next. thanks again.xx

-Jen

Alana3 Fri Mar 22, 2013 7:49 pm

My best advice is don't be.closed minded my pt didn't help me but surgery im cured no problems at all so maybe that's not an.option but there might be something else you think sounds bad but it might help. I was against surgery but I am so happy I sid it. There were so many weird things I tried but pt isn't going to help much if your skin is inflamed that's why I chose to remove it I would leave pt unable to walk because.of the.pain. I go now for muscle spasms but it's.nothing like it was. Either way good luck hopefully you find what you're looking for

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