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I have suffered from LS since my early teens (I´m in my late forties) and was diagnosed in my early twenties. During the first years after my diagnoses, I was treated with strong steroids that made my skin very sore but didn´t really help, testosterone cream that gave me horrible hormonal disturbances with severe acne as a side effect and laser surgey which turned my lady parts into a burn wound and took months to heal (very bad idea from the doctors). All in all, it was very frustrating and painful to keep my sexual life up, as a young woman. In the end of the 80-ies, I went through a vestibulectomy, which actually helped me to some extent and made it possible to have sexual intercourse - not completely without pain - but at least possible. At this point, I unfortunately, developed a painful urethritis, especially after penetrative sex but it was also disturbing my every day life. I spent a lot of time looking for bathrooms and was referred to a urologist that confirmed an inflamed urethra but couldn´t find any treatment working or any clear diagnoses. Personally, I think it is a part of the LS disease. At this point, I was fed up with my life, when I met my husband and got pregnant, which was a relief since my self confidence as a woman was very low. I gave vaginal birth to my first daughter in the mid 90-ies, after a difficult delivery that ended with an anal sphincter rupture, which I think was due to the LS scar tissue. Nevertheless, my nice vestibulectomy work was sort of destroyed and I had a severe LS flare up during the healing phase and new additional scarring. Fortunately, it was quite easy for me to get pregnant, so after more or less my only successful sexual intercourse after my first delivery, I was pregnant with my second daughter who was born with ceasarean section a couple of years later. Since then, life passed by and our sexual life was put to sleep. I came to terms with that this was the way my life was supposed to be and I put my energy on other things. So did my husband, at least he accepted the situation. After some years, my LS problems also calmed down, maybe due to that I didn´t stress my genitals with intercourse anymore. I don´t know. Lately, I have though started to feel sad about my non-existing sexual life. My children are almost grown-up and I feel I am too young to give everything up. Maybe, my husband and I will find the way back to each other or we will find new partners. But not knowing if it is possible to have sexual intercourse, is a big hurdle for me. My doctor has convinced me to start on clobetasol again which actually seems to work this time. At least, it doesn´t make things worse as when I was young. My doctor thinks that I have enough space for intercourse already today but that I should use dilators. Unfortunately, I don´t agree with her concerning the elasticity of my vagnial opening. My disease is quite calm at the moment but if I try to stretch the vaginl opening more than 2-3 fingers, it causes a lot of pain and tearing. It is like a strong ring of scar tissue that doesn´t seem possible to stretch at all. If anyone here, has used dilators, I would appreciate to get some feedback on how it has worked for you? Is it really possible to stretch the scar tissue? I would also like to know, if it is advisable to heal after I have used the dilator and become sore and teared the tissue? Should I really continue dilating already the next day? Unfortunataly, my doctor wasn´t very clear about these practial issues. I also asked her about surgical widening, but she is afraid of more scarring and flare up and doesn´t recommend it. Also I am reluctant to do more surgeries, even though I had some help from it earlier. But the post op period was hard and I would like to try dilating first. Nevertheless, I would be glad if anyone could tell me how surgery to widen the opening has worked? I would also appreciate to know if anyone else has urethral problems in connection with LS? Finally, I realize that my story might be a bit scaring if you are young and newly diagnosed. But it is possible to live a good life also with LS, although sometimes problematic. Even though I have sacrificed my sexual life for many years - mainly since I didn´t have the power to deal with it - I am happy with the way my life has been. I saw everything much darker when I was diagnosed as a young student. Being able to find information and read other women´s stories, also makes it easier. Thank you very much in advance for your comments.
2 likes, 4 replies
good luck, has the gynae suggested going to a sexual therapist with your husband? You may find your relationship is improved
best wishes Sue
I just read the two previous responses and see that Sue has already introduced me. Reading about your 'adventures' - you went through a lot and have lots of scar tissue gathered over a long period of time, but you sound positive nevertheless and that's of course a good starting point to create the possiblitiy to improve or at least make the best of life.
My experience with dilation - a gentle process, which I think is the best route I could have followed. I started with a crayon wrapped in a condom and didn't expect that it would ever come to where I am today. At present gentle intimacy is possible again. [Dilation under narcose was necessary for me to be able to empty my blatter again. I was totally fused up with only a pinhole left for urinating. After this procedure my life improved ever so gradually and still gets a little better every day.]
After the initial dilation procedure in the hospital I proceded with a daily 'ritual' to keep the layers apart. At first six times a day, then three, now only one time a day. Gradually the opening stretched. Never used force, I just let the experience lead me as what size could be next; sometimes I had to go back to a smaller size. I lubricate richly with a fluid form of coconut oil and take my time. Some days are better than others.
It appears to be a constant fight to keep LS at bay. But I feel I am gaining. Together with diet restrictions and lots of supplements I see my body become stronger and better.
Hope this gives some insight in dilation.
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