Diagnosed and having issues dealing with it all.
Posted , 13 users are following.
I don't know how this post will go, so please bear with me if I ramble.
I’m 34 years old and my issues started after the birth of the second child. I spent over a year in so much pain and discomfort, that it hurt to wear underwear. I was eventually given a biopsy and it came back as "chronic inflammation" and I was sent on my way. Finally, the symptom subsided and I was able to live life normally with the occasional discomfort or painful flare ups.
6 months ago, I went to my doctor (a new one due to a move) and told her my symptoms, because the flare-ups were getting worse, lasting longer, etc. She sent me to a vulvar specialist. He looked at me for about 5 seconds and diagnosed me with LS. He gave me a quick explanation on how to treat it, a prescription for Clobetasol and the word "lichen" on a sheet of paper was sent away. 2 months later, I went back to see him because I was still in a lot of pain even using the clob. He made me feel like I was wasting his time. He acted annoyed with my questions and told me that, despite both my husband and I agreeing that the treatment plan I was following was indeed what he told me to do, I was doing it wrong. I left feeling like overwhelmed, sad and lost for what to do. Both my husband and I decided I should find someone else, but where we live, it takes time to see a specialist.
Ever since that time, I've been battling feelings of depression and hopelessness. I keep having symptoms that, for the most part, don’t fully go away even with the use of Clob, constant moisturizing, etc. Even when I feel symptom free, it doesn’t last more than a day or 2 before I feel the symptoms flare-up again. The constant pain and irritation is taking a toll on me. I’m not sleeping well, I feel like I have way less patience than I normally have. I am unable to have a sexual relationship with my husband because it hurts (not during, but after). While my husband has been nothing but wonderful, I worry that this going to take a toll on our relationship. I feel like, aside from my husband, I have no one to talk to about this because no one understands. I’m so worried for my future with this disease.
Sorry for the long post, but I feel like my feelings about this have been building up and I just needed to let them out to someone who understands what it’s like to have LS.
0 likes, 17 replies
sue05480 CanadaLS
Posted
I'm sorry you are feeling like this and I can empathise. I'm older than you and have had LS for about 15 years. Over the years I've seen doctors and gynaecologists who all prescribed steroid cream. To be honest I only ever used it occasionally and it's only in the last couple of years - when sex has become so uncomfortable - that I've realised I have to do everything I can to help myself make this better. For the past few weeks I've used the steroid cream twice a day for 4 weeks, once a day for 4 weeks then twice a week for 4 weeks and this has made a great difference. The soreness and insane itchiness has really cleared up. I saw a gynaecologist this week as a follow up and he said that it was being "managed well" (I.e. use of cream as described). The bad news for me is that my vaginal opening has really shrunk and he's now asked me to use dilators, three times per week, after which he will see me again in six months. I feel fed up about being reduced to having to use something like this but if it makes sexual intercourse easier for me I'm going to do it. We've been married a long time and it upsets me to think how good sex used to be. I know it is part if growing old with someone that your sex drive can wane and you are not as bothered - But I don't feel old enough yet for me to have reached the stage where it's just an ordeal I put up with for my husband's sake. It's the bloody LS that's caused it. I'm sorry your doctor had an awful attitude. Change to someone more sympathetic and please don't despair - it can be made much more bearable and clearly from the number of women on this forum you are not alone. Good luck.