Finally found what I think is wrong with me!

I've been suffering for the past 4yrs or so with what I thought to be Cystitis, however, I've always known that it wasn't quite the right symptoms for cystitis. Anyway, with another bout of what I thought to be cystitis today, I got quite sick of it and decided to research further and found Vulvodynia - symptoms match almost perfectly and I feel pretty relieved. However, I've yet to find a doctor in my area good enough to diagnose me with it, if this is what it is. My current Doctor keeps diagnosing me with cystitis, however the pain had always been external, and has made me unable to work, sleep or go about my daily life as normal. It only comes on in bouts of pain and I don't always have it. However, when I do, I need to sit on the toilet for hours on end until the pain has gone as this seems the only way to relieve it. I also find drinking lots of water helps which sounds like a water infection but all the symptoms of Vulvodynia match up too.....this is now the only thing I'm doubting. I also get dull aching/burning pains in the vulvic region when I sit for too long which I've always thought strange until now. After sexual intercourse I get what feels like a friction burn - another symptom explained! I was also wondering where everyone is from? I'm from the UK and it seems most cases are in the USA, and unfortunately all the treatment seems also to be in America. Just wondering if anyone knows of anywhere in the UK and if anyones had the similar symptoms of prolonged time on the toilet and drinking lots of water to relieve pain? Any help would be fantastic!
Thanks. :-)

Hi Emily and welcome to the forum

Im from the UK..and so are many of the members on here. We also have members from the USA and other countries..

When I was first having the symptoms on a regular basis I thought it was thrush and so did the GP. I got a little suspicious after my tests came back negative of course! Its so common for drs to either think its a yeast or unrine infection.

Im guessing the main reason so much time on the toilet helps is that you having nothing putting pressure on your vulva area and so find the pain calms down. I too find sitting painful so tend to sit with my legs up on the sofa or lie down. The pressure on the vulva area does make the syptoms worse. I get stinging, burning and rawness. Its like if any part of your body was sore pressing it makes it feel worse!

A good tip one of our members has given is to get yourself a doughnut cushion..it has a hole in the middle so you can sit on it and have no pressure on your vulva area..much like a toilet seat!

I can also relate to the friction burn type pain after sex..I have always had this after sex so its been an issue as long as I have been sexually active. I am not in a relationship at present but in terms of sex I have found that being intially on top helps as you have more control of thrusts and also lots of lube!! Also on the painful days try other forms of sexual pleasure and don't worry to much if you cant always have intercourse..Ive never been the type of girl who could 'go at it' every day lol so have had to be quite creative!

I havnt tried the drinking water thing..I mite just do that although I can see that I will be then spending a lot of time on the loo! There is one theory that there is a certain substance called oxalates which are thought to irritate vulva tissues as its found in urine and that by drinking lots of water helps to decrease the absorbtion of these oxalates so they will of course irritate the tissue less. There is also a special diet that you can follow to reduce oxalates in the body..unfortunatly oxalates are found in chocolate and tea!! Anyway I did read in the 'Vulvodynia Survival Guide' that by drinking lots of water you can reduce the Oxalate crystals in your urine by up to 80% anyway by drinking lots of water whereas following only the diet will not reduce it half as much..

As for treatment in the Uk I suggest asking your dr to refer you to both a Vulva Clinic..yes we have clinics just for vulvas! who knew! and also a pain clinc. They can then both look at various treatments from medications to nerve blocks etc whatever works for you. I also suggest as many of the members have suggested to me to get physical therapy. I am getting refered for this in the new year and have received two recommendations from emailing this website

http://www.acpwh.org.uk/content/

I hope some of this info can get you started..dont give up if one treatment does not work keeping going thats what im doing

Godbless and Take Care

Sebby
xxx