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Posted , 10 users are following.

plainchocolate
plainchocolate

Hi Everyone. Has anyone with Lichen sclerosis got Fibromyalgia. Besides LS I have got a lot of other health issues. I cannot get the answer to my other health issues. Fed up with going to doctors , Fed up. My list of complaints is gettin longer by the day. It would be interesting to know. X

0 likes, 18 replies

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  • charlotte95599
    charlotte95599 plainchocolate

    Posted

    Well, they think this disease is basically an autoimmune disease so its likely you could get any other autoimmune disease. I havnt been diagnosed with anything else but I have a lot of unanswered questions mself when it comes to my health. It sure does seem when it comes to our autoimmune system, there are a lot of things that Drs just dont seem to totally understand. I hate to keep going and complaining because soon they think you are a hypochondriac and then start blowing you off, so I just live with what I can because I want Drs to take me seriously when and if I have a serious issue. My GP is pretty good though, but when I complain about how lousy I feel he just keeps doing blood work that comes back normal, so where do we go from there?

    People dont understand when they cant see an illness or when you dont have a diagnosis, so they think its all in your head. I understand. Ive thought I may have this myself. I have bouts of extreme fatigue with no answers.

  • anne07585
    anne07585 plainchocolate

    Posted

    Hello plainchocolate,

    Welcome to this forum.

    Yes I have got fibromyalgia and a list of health matters. Autoimmune diseases, underactive thyroid, diabetes type 2, lichen sclerosus and lichen planus. I will not give you the list of other ailments they just seem too inadequate to mention. I was so fed up of doctors I just make sure I am able to get my medication on a regular basis and try and sort it alone. My gynogologist discharged me after my biopsy for LS and was left to my GP to continue follow ups. Being my GP took me off HRT in 2013 and in 2016 after 18 months of hell with my 'undercarriage', which she diagnosed as vaginal atrophy I insisted seeing a gyno. But the damage was done by the LS. I have been on dermovate ointment since September 2016. I have been managing it on my own the last six months. I now have an appointment with a dermotologist on 23rd of this month. Have no idea what he can do. I have since had an endoscopy for pain like angina in the chest and the results were erosion of the mucosa in the oesophagus, stomach and duodenum. Medication has helped but I believe the problems are all related to autoimmune diseases.

    I am coming to accept my ailments and will only see my GP on the odd occasion as she does not know much about LS. I do get very down days where I feel very alone and tearful coping with my conditions but I manage to kick my butt in gear!

    I am sorry you have many problems with your health but you will get some answers and encouragement on this forum.

    Look after yourself and don't hesitate in contacting our 'sisters' on this group.

  • cynthia40883
    cynthia40883 plainchocolate

    Posted

    It looks like I have interstitial cystitis. Also HASHIMOTOS thyroid..Does anyone else have BLADDER inflammation. Wondering if it is an extension of the inflammation from LS? Miserable! No fibromyalgia, though.  Good luck, what other issues do you have?
    • UlliS
      UlliS cynthia40883

      Posted

      I have had serious problems with my bladder for many years but  it was not until a year ago that I was finally diagnosed with intersitital cystitis. My first thought was that it was an extension of LS but I am not sure. This summer it has also been discovered that I am intolerant to gluten and that the mucosa of my intestines are inflammed (even though I did not experience much problems from my bowels). It seems like LS is associated with an overall sensitivity towards developing autoimmune diseases. sad My gynecologist and dermatologist want me to have surgery to break up scar tissue and widen the opening of the vagina this autumn. I am just so scared that it will make things worse since my LS has been reasonable calm for years, even though it caused lots of scarring and changes of the architecture down there from previous flare ups. There are so many things to take into consideration and I am fed up with going to doctors and never feeling quite alright. I wish you all good luck.
    • cynthia40883
      cynthia40883 UlliS

      Posted

      Can you tell me what your symptoms are for interstitial cystitis?I have pressure and abdominal bloating and pain .the area is sore most of the time, but what troubles me is there is a lot of pain on the right side, like where an ovary is. So scared. This all came on fast..Thought I had a urinary infection,but no. There has been small amounts of blood, in urine. Going on now for 2 months. Had CAT scan and many cultures. Do you use steroid for vaginal area?
    • UlliS
      UlliS cynthia40883

      Posted

      My symptoms are severe pain with stinging and burning and sometimes urgency. When I have a flare up, I must go to the bathroom as soon as there are some urine in the bladder. Until now, there has very seldom been a positive culture for bacteria. Cystoscopy showed an inflammed bladder lining that is easily bleeding. I suffered a lot from this. When LS didn´t stop me from intercourse, my IC did. Pressure against the bladder can send to bed for days afterwards. Nowadays I am actually using opioids now and then to keep the pain away. Cynthia, I am so sorry that you have similar problems. I use steroids for LS very seldom since I unfrtunately get very sore from strong steroids. But when I get itchy and feel something is going on, I use Dermovate (clobetasol) to calm things down. Concerning your pain on the right side, I have unfortunately no clue. Has your doctor considered endometriosis? I know a lot of women with pain in this area has undiagnosed endometriosis.

    • cynthia40883
      cynthia40883 UlliS

      Posted

      Hi, thx. so much for trying to help. I want to give you information about what I have been given. Something called Prelief, which neutralizes acid in the BLADDER.Also, Uribel, which helps with BLADDER spasms and pressure.Urine is prescription. Also, I have been told low dose antidepressant s, Elavil, and desipramine. If you haven't tried these might be helpful. Diet changes, reducing acid, help. Haven't had coffee for over a year. What I don't understand is how suddenly this came on, not gradually, and the soreness of the abdomen.Can't stand even a seatbelt. Also the bloating. For LS, I never tried the chlobetasol yet. So many say it makes them worse but the inflammation on the inside of vagina is so bad, I can't even have an internal exam. A cystocopy is also a problem, because of what they use to clean you before procedure. Had one 5 years ago, and I swear that was the beginning of the LS, because of stripping my mucosa with their disinfecting chemical. BTW, when I am scanned at urologist, it appears that I am completely emptying BLADDER. Was your IS a gradual onset, or did it happen suddenly? I guess I am.unsure that this is the problem, and not something else.

    • BARBARA1954
      BARBARA1954 cynthia40883

      Posted

      Thanks for your help!  Clobetasol has help me so much.  At first I had to use it every night and now I use it once a week.  I also have to periodically have to stoop wearing under pants for a week or so, unless I need to wear dress pants.  They just don't look right without under pants.   Do you think this would help your IS?

       

    • cynthia40883
      cynthia40883 BARBARA1954

      Posted

      I should try the clobetasol I know. I haven't worn underwear for years, no matter what. I never wear slacks or jeans. Only dresses and skirts. I live in Florida, so it is easy not to wear clothes that I would wear in a colder climate.The humidity is very difficult though in the summer..My doctor gave me a handicap sticker for my car which is a God send as walking is so irritating in.the summer. I spray with spring water after bathroom. I have been afraid to use the steroid, but now have scar tissue. Must get up the nerve to use it, I guess. Thx. for your suggestions!

    • UlliS
      UlliS cynthia40883

      Posted

      Thank you very much for the information and advice. Oh dear, that is a lot. For me, the doctors have tried to widen the urethra and I have had painful installations with DMSO with no effect. I started treatment with the antidepressant venlafaxine 10 years ago which seems to have improved the urgency and helped a lot to cope with the psychological aspects of these diseases. Otherwise, I sometimes use strong painkillers like codeine/paracetamol combinations but I keep the intake as low as possible. For LS, I use clobetasol sometimes but not regularly since it makes me very sore. I try to stay in shape as much as possible by exercising and horse back riding, the latter is a actually a bad idea but I am addicted to horses. It takes a lot of phantasy in forms of padding, bicycle shorts beneath etc and skipping some types of exercises involving sitting deep on the crotch, to make it work. I have a pretty good life at the moment and try to focus on the positive things bit I still think about LS and IC every day. I am mourning the loss of arcitecture in my private parts and my difficulties to have intercourse. It was many years ago that I dared to try intercourse the last time. The doctors want to make a surgical procedure to facilitate but I am scared that this will cause a flare-up and make things worse. It is a lot to consider. My advice is to try to focus on other things as much as possible but I know it is very hard. Good luck and thanks again! This forum is of great help!
    • BARBARA1954
      BARBARA1954 UlliS

      Posted

      Hi ULLIS,  I had endometriosis until I finally got pregnant.   The pain is really bad in the abdominal area.  It would start when I was ovulating.   Since I was married I decided that the time I was having this terrible pain I was going to have sex with my husband.  Lo and behold,  two months later I found out I was pregnant.  Actually I knew before this due to home pregnancy tests, it just tool the MD's tests that long to say I was positive.  The only cure is to take birth control pills or get pregnant.  I'm sorry to say.

  • deborah82032
    deborah82032 plainchocolate

    Posted

    I suffered with Fibromyalgia for 18 years. I also have LS. I also have psorasis on my feet and hands. One Dr. told me there is a connection between the two. All are autoimmune diseases.
  • BARBARA1954
    BARBARA1954 plainchocolate

    Posted

    I have had fibromyalgia  for 15+ years now.  I was in a head on collision doing 60 mph.  Thankfully no one was seriously injured, except me.  This was 1995.  I believe this is when my fibro started.  I was out of work for 5 1/2 months.  So along with the accident and stress from work (I was a nurse) I ended up not being capable of getting out of bed.  I was so unbelievably tired.  My mind didn't want to work right.  And if that wasn't enough, I hurt all over.   I was able to borrow and later buy, a book on fibromyalgia.   It answered a lot of my questions.   All I needed was confirmation from my doctor which I did get.  

    I also have LS.  it was diagnosed last summer.  I don't have the pain a lot of people talk about.  As I read these posts and the followING answers, I found a few people talking about interstitial cystitis.   I don't know if that is what I have, but I have noticed urgency.  So now that I saw that other women are having problems I will have to see my GP.  I also have a long list of medical problems that I won't go into.  Right now I am having a lot of problems with my low back.....degenerative disk disease.  I'm 62.  I am sure there are a lot of people who feel like me.....I'm sick and tired of sick and tired.   

    Plainchocolate,  please tell us more about the things that are bothering you.   Maybe we can help.  God Bless All Of You!

  • lichensucks
    lichensucks plainchocolate

    Posted

    I do! I've been told both are from my autoimmune disorder issues. Same with my mental health disorders.

    • BARBARA1954
      BARBARA1954 lichensucks

      Posted

      Well, mental health issues are not an autoimmune problem.  It come because of your autoimmune problems.  You are depressed because of the pain.  I have mental health problems since my mother died in 1998.  Since that time I have been on a couple of different medications.   One that wore off after a number of years and one that didn't work.   So now I am on a med that works for me. Maybe you need to see a psychiatrist and get on some meds?

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