On going.
Posted , 6 users are following.
Hi, Its been almost a year since finding out I had LS. + a year or 2 before hand being told it was something else. As it is at the moment , I am using a steroid cream twice a week, a HRT cream 2/3 times a week. am trying a coconut oil in between when ever needed(quite alot). But still seem to experience that sore burning feeling that's there alot of the time. And also it does seem to rule your life alot, as dont often feel like doing much. The needing to pee is often there most days. and I do seem to just feel off alot. Is this something that goes with the condition, or is it just me. You tend to sometimes let your imagine get away with you, and start to worry it's more wrong than should be. would be grateful to hear if I wasnt alone with this thought.
0 likes, 12 replies
deethebee Mears
Posted
I would go to the doctor's and ask for a blood test to check things like thyroid levels and also a urine sample to check you dont have any infection there. Apart from the mental angst that goes with having this disease your symptoms sound like other things going on. But I am not a doctor or an expert, just a fellow LS sufferer. Good luck.
Su02 Mears
Posted
Totally get you! and your far from alone. Some weeks i feel im on top of it, the steroid is doing its job. The moisturisers and washes are fine, a little vaseline here and there helps with the peeing and exercise. THEN wham it all goes to pot ! I guess its the condition. I think the menopausel symtons contribute on how it feels sometimes definetly. I agree your mind doesnt help which contributes to stress then it all spirals. I have a very understanding husband as our sex life isnt what it was which worries me at times but you to find ways around that. Im glad you have posted as i get days like your feeling. Its lovely to come on here and know your not alone! It does help!
Guest Mears
Posted
Hi Mears,
You are definitely not alone with all the wonderful women on here telling their stories. Recently my biopsy (still healing, 10 days ago) was "suggestive" of LS and I think it is correct. It has been 11 months and when something goes on that long, you know it's wrong. I'm sorry it has taken your docs 2+ years to get you to this point.I am in pain almost all the time and cannot sit at all without discomfort. I agree on the not feeling like doing much. I think that's a head issue as much as it is a physical problem. It has been a very life-altering depressing issue and one that I will apparently have to figure out myself as the docs don't seem to know anything but clobetasol ad infinitum. I will resume my research and post anything I find. Yes, by all means, do the coconut oil or other...whatever helps. Eucerin helped, vaseline not so much. Sitting on heating pad was better than ice. But, we all have to find what works for us.
laurie73352 Mears
Posted
I was diagnosed with LS in May 2018. Yesterday my Gyno wanted to do an exam at the hospital instead of his office. I was a little worried, I wasn't exactly sure what he was going to do. He used special equipment to examine me. He told me that he will do this type of exam once a year at the hospital. It took only about 10 minutes, it wasn't that bad. My biggest concern has been no matter what I try after stopping the clobetasol with natural remedies a flare up starts within 3/4 days and causes a lot of pain. He told me I looked so much better then a year ago but I am still red, swollen and have fusing. He told me to use the Clobetasol every day to avoid anymore flareups and to stop any more fusing. Stopping the cream will put me at too much risk. I am really concerned about that but there is nothing I can do. I do want to say that, this forum has really helped me. My husband commented last night that I seem more content lately. I am so thankful to all of you for sharing your experiences, and things to help. I don't feel so alone anymore.
beverly52803 laurie73352
Posted
I am very curious about the special equipment (what was it)and the results of the test. Is he a gynecologist? An LS specialist or dermatologist?
Some of us have been using Tacrolimus. Has he discussed this as an option ?
deethebee beverly52803
Posted
How have you found the results using Tacrolimus ointment?
laurie73352 beverly52803
Posted
Hi Beverly, he is a Gynecologist, he used microscopes. He has never mentioned Tacrolimus, what is it? He said my skin looked good, however was red and swollen in some areas. He said it was the first time he could see my clitoris, so I'm getting better.
beverly52803 laurie73352
Posted
laurie, I'm not sure if any gynecologists treat their LS patients with Protopic or Tacrolimus (the generic) immunosupressants which I find disturbing. They certainly must know dermatologists are prescribing it for LS so why aren't they working together? Even if gyn's aren't comfortable prescribing it why wouldn't they refer patients to dermatologists. (Only one woman has mentioned her drs are working together).
This is the main reason I went to see an integrative or functional medicine MD. I wanted his opinion on different options including platelet rich plasma injections. He did his research on LS before I met with him and his first recommendation was Tacrolimus. I was able to get my appointment with him covered by my insurance because he is a MD affiliated with an office that accepts insurance... many don't.
By the way, I am using it 5 days a week and the steroid two days. It seems like a lot of "stuff", but for now I have no other plan other than to continue looking for an MD who treats LS with PRP injections which to me sounds like the best option, using your body's resources to help heal itself. The FM doc agreed, but was also unable to locate an MD that gives them other than a rather unpleasant MD at a spa that I had already spoken with. She said to have the PRP treatment without having laser would be a waste of money (we are talking thousands of dollars).
You should google both Tacrolimus and PRP if you are interested in researching them.
beverly52803 laurie73352
Posted
laurie, although I avoided including links the moderator is holding back my post. VERY annoying as there is nothing inappropriate in it. This does get tiring as all we are trying to do is help each other by sharing our experiences and info.
deethebee beverly52803
Posted
yes I totally agree. Personally I think they should ban the graphic images of mens penises on this forum. I mean I know men suffer from LS but sometimes I really do wonder....
laurie73352 beverly52803
Posted
Thanks so much Beverly, I will speak to my doctor about sending me to a dermatologist as well. I will also look into the medications you suggested. I really appreciate your help!
Guest Mears
Posted
One must wonder why they don't want us to post certain things... Is the site owner an allopathic med system that makes a lot of money from "typical" treatments and eschews the alternative? One of my posts was blocked when I used the used word "female." Good grief....