Does anyone really care

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Would like to share my thoughts on the disease. My family no about what I have. My husband my Mom my sister. But no one really cares to ask me about. My daughter feels my pain because she has Andromedryosis. I pray she doesn't get this. I don't talk to friends or close girlfriend about. Do I feel they will look down on me. Your thoughts.

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12 Replies

  • Posted

    Hi Diana

    ?I am sure they just don't know how to go about it. They will care a great deal. How long is it since you told them? 

    ?It's quite a taboo subject talking about your genitals and sex life - not that I agree it should be. They are probably just unsure on how to talk about it.

    ?It's a topic thread that resonates with me - I was diagnosed last Thursday and my husband is away for another month. I live in quite a remote place of the UK and as such don't really have any friends to tell. I don't want to tell my family before I tell my husband. However I keep going over and over - how I will tell them. Do I down play it? etc etc 

    There is no doubt that talking about it is going to be difficult. I found this forum to be so supportive though - so if you want to talk............... well, I am here. 

    ?Sending hugs xxxx

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    • Posted

      Thank you. Your right not really open with anyone about LS. Even when I had my children they are 45 and 36 went to the hospital husband went to work I delivered he showed up later. Not open with my Mom at all about. My daughter seems to no what I'm going through. She has Andromedryosis.

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    • Posted

      Ah it sounds like you have been dealing with life events by yourself long time. I dont know about Andromedryosis (i will look it up)

      But perhaps you just need 1 person who really understands rather than a few .. who will talk, but dont get it ?

      Never forget you are not alone. Look at all of us on the forum eh. Xxx

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    • Posted

      My daughter struggles with Andromedryosis. Everyone thank you so much for your support. It is such a good feeling to know so many people can come together to care for each other. Thank you. God bless you all. Every night you are in my prayers.
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  • Posted

    My issue with talking about it was due to the length of time that it took me to get diagnosed and the fact I got sent to the sexually health clinic 3 times even though I knew it wasn't anything to do with that. I guess in my head it formed a stigma against talking about it, us guys arent the best at talking about these things anyways.

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  • Posted

    Hi Diana, I decided to tell most anyone about this disease. I agree, my family does not seem to care but perhaps it is an uncomfortable discussion for them because they don't understand how a skin disease can reside there or how painful this is emotionally and physically...I can't wrap my head around that.. I have told my friends, they need to realize what is going on with me, shame on anyone who would look down on someone with this diagnosis...its their shame not yours. Feel better...

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  • Posted

    Hi Diana, I understand how this condition can affect a woman's self-esteem sexually, but I'm 58, and I just feel that LS is another symptom of being post-menopausal, as with vaginal atrophy, because low hormones can be a precursor to this condition, and yes I know it's auto-immune, but menopause causes a big shake-up health-wise. Men of around my age are also prone to their own sexual problems, so I don't feel the need to think less of myself because I have LS. I've had precancer twice, and been treated successfully, the last time with a hysterectomy, so having this, yes it's bad luck, of course I wish I didn't have it, and there's also the slight risk of cancer, but anyone can get illness through no fault of their own, and this is just one of those times.

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    • Posted

      You seemed to no a lot about the disease like I was told. Until someone famous comes out about it I don't think it will be addressed as a big thing

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  • Posted

    I am glad to have found this forum. You do need to have someone to talk to about this. And talking about your genitals often in public, is just not done..and not much privately either, I guess.  I can discuss with a close friend and my sister, but really  anyone who has not had it can really not understand it and what you live with day-in and day-out. I hate to say it, but I'm almost 72 and I've had this since I went through menopause at 53. Before that I had it as a child (they didn't know what it was then, I guess, though my mother never took me to a doc). After I got hormones as a preteen the severe itching/bleeding went away not to reappear until after menopause. I just had a dermatologist diagnose it about 4 years ago. She gave me the steroid ointment and yeast ointment. I can use the steroid only a couple of times a week. It helps for a day or so, but it's only temporary. When I was going (almost) gluten-free, it did seem to go away. I just now have trouble getting back on that way of eating..don't ask me why. I am going to try again soon...I hope! and I just read the discussion about using olive oil so think I might try that. Anyway, it is just good to be able to discuss on this forum because truly no one else can really understand what you are going through. I hope you (and all of us) find some relief.

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