Just got diagnosed - please read.

Hi!
I've been having pain in my vaginal area for many years now (I'm 20) - been struggling with tampons, sex etc. no doctors could tell me why except for today when my gynaecologist told me I have vulvodynia. I was so relieved to know what it was. She told me to get some ointment and it would feel better almost immediately. Afterwards I googled vulvodynia and it seems much less simple.

My question basically is, does anyone have good experience with any kind of medicine? Or anything else? Because the thought of living with this for the rest of my life makes me extremely miserable.

Tina.

Hiya, i'm 19 and i have had vulvodynia for as long as i can remember. It started during sex with my boyfriend of 2 years and since then just got worse and worse. I have tried creams such as epiderm, antidepressents... nortriptyline and amtritriptyline, they both failed and sent me into a train crash of side effects. I have been prescribed something called instillagel. Its a numbing gel, i use it mainly after sex. I am still able to have sex once a week, maybe more depending on how long it lasts haha. In February 2014 i was told i could have a Vestibulectomy, its where they remove all painful tissue. 2nd May 2014, I found out i was pregnant and then on May 11th i was told i could have my Vestibulectomy that i'd been waiting for for months! I had to say no due to me being pregnant, sadly after that i lost my baby. I am now waiting to be referred again to the hospital to see if they can push me forward into having the operation again but sooner as i dont think i can last much longer with this pain. The thought of ending my life has crossed my mind so many times because the pain only gets worse, you'll be sorry to here!
Iv read up on a lot of surgery stories, some work and some fail. I have to say if my surgery does fail, I dont think living like this for the rest of my life is an option i'm willing to consider!
Im sorry your going through this horrible experiance and i hope you find a cure to this horrible disease!

Hiya girls,

Sorry to hear u are both suffering :-( do u have provoked pain or is it Ther all time?

I made some simple changes to my life and the pain went away.
I switched to non bio washing powder and washed my knickers seperatly in this to the rest of my clothes and stopped using softener. No purfume products down on underwear.
I only use aqeous creme to wash with and I only wash my hair in sink not bath or shower so again no perfumed products in the bath.
I take fish oil as vitamins, calcium citrate and magnesium.
I put baking soda in my baths one or twice a week.
I only wear leggings to work no jeans as pressure down Ther can cause more pain.
Every night after the bath I put lidocaine ointment on the part of me that hurt and vit e oil all over down Ther.

I started this a few months back and my pain has gone. Please try this before any pills the doctors wanna throw down your neck.

I'm not saying this is a cure but I got my advice from another lady in here and it worked. It won't work for everyone but anything is worth a try...

I hope u both get relief at some point I know how hard and soul destroying it can be and I feel for the pair of u.

Good luck girls, let me know how u get on xx

Sparkle I am
Just wondering was your provoked or unprovoked ??? I have changed washing powder to a non bio and cotton underwear (miss my pretty ones

Mine is provoked and I used to get really bad shooting pains upon touch as well as burning thru intercourse. What about u? Has changing your washing powder worked? I also don't use perfumed products in my bath.

It took a good few months for it to go completely but it did slowly get better.

Yes I miss my pretty ones too. I have silly girls boxers I wear now, they are cute tho :-)

Mines more unprovoked I guess a mixture tbh lol it's helped sort of yeah on gapapentin 400mg idk it doesn't so a lot for provoked pain :/ ... I just wish there was an answer lol xo

Mine is more unprovoked, only hurts with touch tight clothes or intercourse. I've recently been told there's a 6 month waiting list for the surgery, as I have tried most other things, so after two years with this horrible illness I have decided to go private!! I have an appointment on the 27th of November! I guess money does make a difference the arrogant pigs!! Hopefully I should have my surgery before Christmas hooefully this cures me! X

If u get pain in touch then that's provoked like mine was, intercourse was impossible for me at one point it burned and hurt so much. I used to get stabbing pains around the entrance and it burned the whole way through does that sound similar to yours?. I think u should try not using purfumes products in your bath and washing your hair in the sink and washing your knickers in non bio powder with no softener. Worth a try wile u wait for your surgery. I suffered just over a year before I made these changes and my pain went away. Surgery really is a last option I know it cures some ppl but recovery is long. I hope u get relief soon xx

I also went private to see a gyno, but luckily I had private health care thru work. Mainly tho I got my relief with tips on this forum ;-)

Also fish oil is amazing. It has a natural anti inflammatory in it

I have had it for 3 years in January, I've tried everything from changing my diet, perfumed products, tight clothing, instillagel, antidepressants nothing has worked. I had sex twice 2 weeks ago and I haven't been able to get rid of the unbearable pain since!
I know the surgery is a rocky recovery but im willing to pay and do anything to get rid of this horrible illness. Unforchently I don't have health care haha so I'm looking at around 5-6,000 I hope it bloody works! Xx

Oh so this really is last option for u then.. Well I hope it works for u, I think it works better on ppl who have pain on touch around the entrance rather then pain all time.... So that's sonthing positive for u:-)
Oh yeah defo I was always willing to go through surgery too if I cudnt manage it using other methods.
Omg It's so expensive! Are u living in uk? Cos maybe u can go through nhs.

Yes I am living in Birmingham, I am having my treatment at the BMI priory with a man called Professor Luesley. I could go through the NHS but the waiting list is about six months long and after two years I am fed up with this condition! He really has changed my life by offering me this operation, and I should have it before Christmas too! I really do recommend him, he's expensive but noes his stuff! I'm just lucky I have a family behind me who can support me as I'm only 19 and can only pay for half the surgery myself! Xx

I go private at BMI in brentford. Bmi is a nice clinic :-) I hope tht the surgery gives u relief U need. Thers a few girls on here had provoked like u and surgery worked for them so fingers crossed its same for u. 19s so young to have to live with this... It's so horrible and times u feel so low u don't see a way out, hard for ppl who don't have it to understand.. but u got somthinf positive coming your way now so keep your faith. Your lucky u have a lovely family to support u. Good luck and pls keep in touch and let me know how u get on xx

Why don't u start another post up and ask for advice on surgery. In sure a few girls will comment and let u no their experiences ext so u know what will happen, what to expect and that. From my personal reading on this site it seems that The surgery has best results from girls who have pain with touch in that area. Pain with intercourse, burning during sex. Doesn't seem to work on the generalise kind where the pain is Ther 24/7.

Thankyou sparkle, and yes I will keep you updated! I have read a few cases on here myself about the success of ladies surgery so I am hoping I am the same! It is a horrible thing to have to live with at any age and I cannot believe they have no idea how it is started and how to really cure it. I have my first appointment Thursday so I will post and let you know how it goes!Xx

Yeah I have a good feeling about it for u! :-) I know what u mean... I went thru a year or so of not knowing wot was wrong with me feeling like a freak. Then I got diagnosed and more bad news they don't know what causes it or how to treat it! Lucky I found my own way thru girls on here and I'm so happy I found this forum. Without girls on here helping me I wud still be in pain unable to have sex with my bf wihout bleeding and burning ,getting worse everyday and dealing with the depression u sink into...So Thers is a light at end of tunnel u just have to find the switch ;-)
Good luck for Thursday! Post on this thread and let me know how u get on xx

See my post on saginil gel, acupuncture and manual desensitisation in this section.