Hi,
I am new here, but was recently diagnosed with LS. I want you ladies to be encouraged in every way to share this with your female friends and family. It's nothing to be ashamed of and could possibly save someone from it going into Vulvar Cancer. Please don't be ashamed. They don't know what causes it. I have told my friends and family about it. I encourage you to do the same. Just my opinion.
I agree. Need to make more people aware.
I agree. However, I wish more doctors and specialists would also get on board and inform themselves. I've had such contradictory advice. The specialist says one thing, go back to referring dr. and s/he says, oh, no, don't do that!
Really no one knows about LS. There is know data or research what we all have in common. It makes you feel like you need to hide this. No one truly wants to talk about. Like no big deal. It is to us.
I think you are right, even though I have found this so hard to do. I have one woman friend who I've told a little about it; and a couple of others to whom I have mentioned the name but with no further detail. But noone knows the extent of the damage it's done to me or how serious it is. I do agree with you but I wish I could do more to break through the 'shame' barrier (rubbish to feel like this but there's just this embarassment thing.) Well done for posting, Marnie.
People listen but like fibromyalgia they really don't understand the pain on inside we are in. I don't know you but. I am here for you. Diana
I agree marnie. I only told two people, and then one of them had itching and knew to go to the doctor rather than self-medicate for thrush. Result - she caught it early and isn't suffering as bad as those of us who went undiagnosed. That made me come out of my hole and tell a few people, then ask them to spread the word without it relating to me.
Her doctor was also very aware of LS too. Young and female. Her doctor thought it could be as many as 1 in 50 women. If that's the case, why do so few docs know about it? Angry Rant!
Hi Bridge,
I'm so glad you chanced it and shared with another female. I am fortunate in that I have a sister who is a Radiation Therapist and when I told her about the itching, she told me to have it checked out. I am not prone to any other female issues like thrush, so I went within two weeks for a check up. My physician immediately did the biopsy and let me know it wasn't cancer (in my mind I was worried sick as I thought I may have cancer) and treated it with the Clobetesol crème. I have had no issues since. I use it as directed by my physician. I am truly grateful for my aggressive Gynecologist indeed. I think there needs to be more information put out about it. In my mind it begins with those who have experienced it like you and me.
I can understand your feelings, it too may be a cultural thing. I live in Mississippi in the US and work in the health field, so I guess I feel responsible to share. I will be praying for you. I know it's a tough situation, but as we all share, maybe we can all come up with more ideas to fight it and make our lives easier. I am super fortunate that the first Physician I spoke with did a biopsy the first time I saw her, she did play around. I read a lot of articles to inform myself about the disease. Keep posting ladies!! we can all learn a lot from each other!
God Bless.
It is a big deal absolutely! I just encourage you to share the symptoms with female friends and family if nothing else then to make them aware. I know they can't always sympathize with you, but you have us women here for that. Take heart dear Diana, you are not alone.
God Bless!
Marnie