Guest guest Posted May 28, 2001 Report Share Posted May 28, 2001 Lona - I feel so bad for you. Because I can relate to a certain extent. Just thinking about you suffering with this for ten years...I am 43 - was diagnosed when I was 42. I have only been suffering with this since last October and I have been at the end of my rope more then once during that time. I don't know if I could hang on for 10 yrs. You must be incredibly strong. I look normal too - unless after the rare times I have sex, I sometimes get pretty inflamed. Or when I wear the wrong pants for too long. I keep saying the same thing - if it looks normal, then what the hell is going on? I say - go ahead and scream - and cry and just allow yourself to go crazy for a little while. I'll be thinking of you and hoping so much that you get better. Amber __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 28, 2001 Report Share Posted May 28, 2001 ----- Original Message ----- > I feel so bad for you. Because I can relate to a > certain extent. Just thinking about you suffering > with this for ten years...I am 43 - was diagnosed when > I was 42. I have only been suffering with this since > last October and I have been at the end of my rope > more then once during that time. I don't know if I > could hang on for 10 yrs. You must be incredibly > strong. How about having it your entire life? That's how long I've had it. But it sucks no matter how long you've had it. It's still a horrible experience. Lona, you aren't alone. Just remember that we are all in the same boat. Just don't use that E String anymore!!! I'm sure your vulva will get back to it's baseline after a while of not using it. Hang in there till then. Hugs, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 28, 2001 Report Share Posted May 28, 2001 Lona, HANG IN THERE! I am here and I am 45 yrs old with early onset vulvodynia since I was in my teens. Also have chronic urethral syndrome, irritable bowel , and OCD. I know the pain is awful and I was never taken seriously about the vulvar pain until last year and they said they can't help me! So I am looking for help on my own. The doctor I found who specializes in this does not take my insurance ! I am frustrated also. Feel free to e-mail me privately if you need to talk. Jo ( Willowtree789@...) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 29, 2001 Report Share Posted May 29, 2001 WAAAAAAIIIIIIIIT a moment there. I think you know when you are actually clear-minded that WE ARE ALL going to find a cure for whatever miserable condition/disease we have. Right~ Write to us or me personally whenever you want We are always here for you ~mindy~ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 29, 2001 Report Share Posted May 29, 2001 I am right behind what says...please and I mean it~ Sending good vibes ~mindy~ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 29, 2001 Report Share Posted May 29, 2001 In a message dated 5/28/01 3:44:27 AM Central Daylight Time, VulvarDisorders writes: I am ready to scream, literally. I am going on ten years of vv. Hi Lona, I know how you feel. I can't even remember a time when I did not have pain. I sometimes feel like I am slowly dying from the lack of knowing what it is to be normal. Other times I feel as if I can take on the world and cure myself while attending college and living a full life. I just wish sometimes, that I could have one day of complete and utter wellness. No burning or suffering for just 24 hours. I think I might go mad from that too. I'm not sure who I would be without this pain. My entire life I have known it. I know I am more than this disease, but it feels as if it is part of me also. It seems to be a very resistant demon. I am considering options now for treatment. I quit fighting for a while to focus on college, but I feel that I am strong enough now to fight on both fronts. I will always have days where the world seems to end because of the pain. I don't know how to stop those days for me or you, all I can tell you is to hope, and to always remember we are all in this together, and one day we _will_ all win. Sending love your way, April Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 29, 2001 Report Share Posted May 29, 2001 Lona, If you are having that bad of side effects still, stop taking it. The doctor should have other alternitives for you. I know that there is a form of estrogen that you can stick in tablet form under the tougue. Also,sorry dont remember, are you using estrace cream in addition? Thats what my doctor has me do. If your not, the estrace may not bother you as much. If estrace bothers you too, there are other cream forms of estrogen that are out there in lower dosages, or mixed with other things that may work better. Your doctor may even be willing to have a compounding pharmacist make one for you without the irritating ingreadients. I dont know just some ideas. I hope you start feeling better really soon, you are in my prayers. Bunny ----Original Message Follows---- From: " B. Standard" Reply-To: VulvarDisorders To: Subject: Re: Is anyone out there? Date: Mon, 28 May 2001 11:50:05 -0400 ----- Original Message ----- From: "Amber M." > I feel so bad for you. Because I can relate to a > certain extent. Just thinking about you suffering > with this for ten years...I am 43 - was diagnosed when > I was 42. I have only been suffering with this since > last October and I have been at the end of my rope > more then once during that time. I don't know if I > could hang on for 10 yrs. You must be incredibly > strong. How about having it your entire life? That's how long I've had it. But it sucks no matter how long you've had it. It's still a horrible experience. Lona, you aren't alone. Just remember that we are all in the same boat. Just don't use that E String anymore!!! I'm sure your vulva will get back to it's baseline after a while of not using it. Hang in there till then. Hugs, Get your FREE download of MSN Explorer at http://explorer.msn.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 29, 2001 Report Share Posted May 29, 2001 I haven't used the Estring for a month, it set me off. Now I have to convince them NOT to do the test I sent in here. Lona : Lona, : : If you are having that bad of side effects still, stop taking it. The doctor should have other Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 29, 2001 Report Share Posted May 29, 2001 Lona, It sounds like you are really having a rough time. I really hope you start feeling better soon, and that you find the right treatment. I do know how hard it is trying one thing after another with some of the new treatments making me worse then I was before. Bunny Get your FREE download of MSN Explorer at http://explorer.msn.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 29, 2001 Report Share Posted May 29, 2001 ÿþ Quote Link to comment Share on other sites More sharing options...
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