Relationship with partner

Posted , 12 users are following.

I know its personnel thing but how do you all manage or continue to have a sexual relationship with this condition. Been with my husband over 35 years always had a great sex life. Gradually became quite rare over last year as LS has progressed. Hes great and very understanding. Its being quite uncomfortable that you cant then feeling great a few days but rather not as your worried it will flare again. I think im possibly going thru the motions of menopause too as my libido is zero, night sweats etc Seeing GP next week but dont know where to start! Any advise please

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  • Posted

    So much of the sexual side of this disease is about self image i think. I know in my case at 66 now, I feel 'ugly' because of fusing and that means I don't instigate sex despite my husband being reassuring and still loving and thoughtful during sex. It does damage to a relationship in this way as well as through loss of physical sensation. LS is a destructive disease in more ways than one and doctors don't seem to be able to help.

    • Posted

      Sarb- I hv to agree with you. I feel like I've had a " genital mastectomy" and I feel like less of a woman. I do not allow my husband to perform oral sex on me anymore and I can't hv an orgasm through intercourse due to loss of sensitivity in the clitoris. He manually brings me to orgasm ( sad as it is, maybe a 1 or 2) before we have intercourse. Had never gone more than 2 weeks without sex, now it's much less frequent and fulfilling. This disease is far more emotionally damaging than DR KNOW....

    • Posted

      Yes 'less of a woman' sums it up Karen. I suppose for the time being we should be content with the fact we can still reach orgasm in some way even if it's weaker sensation. The horrible thing is you know it's not going to get better.

    • Posted

      Dear SARB- I feel like a whiner when I complain about less intense orgasms when there are woman having surgery just so they pee and poo. I hope that through dietary changes, taking supplements, staying moisturized, and using CLOB when/ if I need to will prevent any further deterioration. Now, it is what it is and I have to mentally accept that.

    • Posted

      You're right Karen, surgery for such vital functions is far more serious. I count myself lucky at this stage and hope against hope I can keep deterioration at bay.

    • Posted

      Karen - you're not a whiner... having intense orgasms is a big deal! 😃 (To me anyway! LOL!) But seriously - I feel the same way.... I feel like I'm being a baby about my less intense orgasms - when it could be SO MUCH WORSE for me. But it's so hard to mentally accept that I'm only 47 and my orgasms will suck and my lady parts look different, etc... 😕 I was just diagnosed last month... so I'm still emotionally and mentally processing all of this. There's so much to process with this.... I just need to keep reminding myself that I'm lucky I caught it earlier than others - and i'm hopefully in a position to get a handle on it before it gets any worse. 😃 (And I'm really grateful for all of you in this forum that have helped answer so many questions.... I really was a mess when I first found out! But this forum has helped A LOT....)

    • Posted

      DEBB- It's been 12-1/2 months since my diagnosis. I was not put on a steroid for six weeks due to my DR changing offices. Treated my symptoms with emuaid homeopathic cream, used a moisture barrier ointment after peeing, baking soda baths 1/2 cup), and healed all the sores, and ulcerated areas It was during that time most of my architectural changes occurred. Since finally getting on the steroid there have been no more changes, the white patches are mostly cleared ( Dr says I will probably never be pink again), and was told that I am " in remission". I currently have no symptoms. I limit sugar, tried cutting out gluten and dairy- didn't make much of a difference, but I did get hooked on coconut milk in my coffee during this time. I am still trepidacious when we have sex and jump up soon after to clean myself up- no more snuggling until we fall asleep. My skin is very sensitive and I treat it with kindness. This disease is terrible and I let it control me all of JUNE-JULY-AUGUST last year, then I had to tell myself " it's not going away" and had to learn to get on with my life, take care of myself, but not focus SO MUCH on it! There is alot of great information on this site, everyone seems to be affected in different ways, so try things and see what works best for you. GOOD luck!

  • Posted

    Any men out there to comment on how it effects them sexually?

    Seems to me the women have more to lose.

    • Posted

      Men will probably not chime in on this conversation because they are afraid to come forward and admit they have this problem also. Men feel this is a "woman's" thing. There are going to be some men out there that are going to Experience this also and they are going to look to women for the answers!

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