Anybody out there suffer with, and or have a diagnosis of chronic vulvodynia and or interstitial cystitis? I am wondering if there muight be an association as I have redness and inflammation in this area in addition to the erythromelalgia in other parts of my body. Believe it or not, these symptoms are even WORSE then the EM pain. Also, I am trying to connect the dots and find out if I might have Shoegrens as the over arching cause, but this is a very difficult path and I have not yet been able to find a competent rheumatologist that my insurance will cover. I am in CT and have Husky insurance.
I am so sorry to hear about your daughter eperiencing this. I hope she is receiving some effective treatment for it. How did they come to the conclusion that it was EM? I did not know there was Vulva EM. Does she have symptoms of Interstitial Cystitis as well?
What kind of Dr. diganosed her and how are they treating it?
I certainly hope that this is manageable for her, and I wish her a complete and speedy healing .
After lots of doctors and tests it came down to putting her history on an pediatric email list that goes around the world, the diagnosis came from America, she is currently on gabapentin and endone or tramadol for the pain, we see a top gynecologist at the largest kids hospital in Australia. I don't know much about Interstitial Cystitis but after you mentioning it im going to have a read, I have heard of pudendal neuralgia also but again don't know much about it. She has good days and bad days, we use a cooling mat, cooling scarf and numbing gel, she has a few other conditions also and other problems not linked to any of her conditions, back to the hospital next week for another surgery and to see more doctors. When she was diagnosed we were told its rarer than the 'normal erythromelalgia' since finding out ive only ever come across 1 other lady with it.
Leah said:
Hi Jacqui,
I am so sorry to hear about your daughter eperiencing this. I hope she is receiving some effective treatment for it. How did they come to the conclusion that it was EM? I did not know there was Vulva EM. Does she have symptoms of Interstitial Cystitis as well?
What kind of Dr. diganosed her and how are they treating it?
I certainly hope that this is manageable for her, and I wish her a complete and speedy healing .
Ive looked at the Erythromelalgia .org page but haven't looked and the other one, ill look into it now. She seems to cope a lot better than I do!!! She is a brave little girl.
Chloe was diagnosed last week as having Interstitial Cystitis!!!! This came after her surgery a few weeks ago.
Leah said:
Hi Jacqui,
I am so sorry to hear about your daughter eperiencing this. I hope she is receiving some effective treatment for it. How did they come to the conclusion that it was EM? I did not know there was Vulva EM. Does she have symptoms of Interstitial Cystitis as well?
What kind of Dr. diganosed her and how are they treating it?
I certainly hope that this is manageable for her, and I wish her a complete and speedy healing .