1. Community
  2. Women's health
  3. Lichen Sclerosus

Fed up with doctors not seeming to care.

Posted , 13 users are following.

Mears
Mears

I've been told I have LS for almost a year now. and it's been a up and down roller coaster ride. .One problem I have is the feeling of peeing all the time. and also a uncomfortable feeling at pit of tummy. At moment I am using a steroid cream twice a week, and a HRT cream twice a week inside and out. I shower in a epimax cream, and use that in between to moisturize the area. last week I had a flare up , my practice nurse was on holiday for 3 weeks, so spoke to doctor on phone, All he said was to wait till following week and make appointment with the nurse or female doctor. Seeing as nurse was'nt due back for another 2 weeks, and the lady doctor is part time and very hard to get appointment with her anyway. All I could do I'd up the steroid cream to everyday for a week, instead of twice a week. Has anybody else had these sort of problems with LS.

0 likes, 21 replies

21 Replies

Prev
  • Nancy_K_B
    Nancy_K_B Mears

    Posted

    HI There Mears,

    Yes, it sounds like Nurse Pamela ha got it right. UTI. and I really appreciate her mentioning that some people have asymptomatic UTI's before it finally gets "real". I did. I thought my wonderful integrative/cardiologist Doc was a bit off when he said I had a UTI... Anyway, you don't have to wit 2 or 3 weeks for a doctors appt. My Doctor Bailey said to take Oregano Oil Extract or Grapefruit seed oil extract. I had the grapefruit seed oil on hand... but studies show that Oregano Oil is stronger even than antibiotics... I hope you live where you can get to a health food store.. it/they really work. cheers,

    • pamela70431
      pamela70431 Nancy_K_B

      Posted

      have to say i have never heard of these treatments but i will certainly give them a try next time i think i have a uti ! I am dreadful with antibiotics. thanks for the info x

  • martha91317
    martha91317 Mears

    Posted

    I have that peeing problem also. Also have an uncomfortable feeling in my stomach. I am also using clob and a hr cream on alternate nights. This LS is awful disease. Sometime i'm almost normal then for no reason it will flair up and be miserable. Feel better!

  • Joannwilson
    Joannwilson Mears

    Posted

    Mears, I am in the US, and had this same problems with the feeling you describe. I was seen by a uro gynecologist here. I was asked what bothered me the most and I replied that feeling of needing to urinate all the time, to the point I rarely left home because of fear of wetting myself or not being able to find a restroom.

    i had previously been on a medication that was supposed to help with this. And I always had clear UTI lab tests and even when they did the cultured exams which took linger to test besides the standard dip test, that would come back negative as well.

    Frustrating so much as I could swear I had a UTI and would be treated for it with antibiotics any way.

    Finally the uro gynecologist told me this was overactive bladder. The abdominal discomfort was actually the bladder that was causing that feeling.

    The medicine she gave me is called mirabegron. The first night I took the med which I was thinking I would give it a go but was afraid it was going to be like all the other treatments and fail.

    I have had this over active bladder evidently all my life and I am age 64 now. Hence my low expectation of success.

    For the first time I actually slept through the night without having to get up several times to use the toilet.

    I have been on this med for 4 months now and to me it is like the answer to my prayers.

    Yes I still have the LS & have to still treat it with clobetasol, and other topical ointments but finally the feeling of constantly having to pee all the time is gone! I feel like I have my life back now, and I had become nearly agoraphobic due to that overactive bladder, not being ever diagnosed properly.

    I encourage you to look into this and see if that is what you are having.

    Mention this to your health care providers.

    I am not a nurse or any expert, but having the results I have I am glad I gave yet another medicine a try.

    Good luck to you.

    • Guest
      Guest Joannwilson

      Posted

      Dear Joann and Mears,

      Have you considered taking an over the counter med called "Azo-pyridine?" Walmart in the US has it and it soothes the urinary tract. I have seen it clear up infections. My mother swore by it. Not expensive. Another this you can get is D-Mannose powder. My mother's nurse told her to keep it on hand and whenever she felt like a UTI was coming on, she took a spoonful of that in water and poof- infection gone

      A third thing you can try as maintenance is unsweetened cranberry juice. You can find it here ins the US at Kroger or health stores but I drink some every day (diluted) and it has kept me in good shape. If you know you have a problem, drink 4 oz diluted 50% every 3 - 4 hours for 2 days. It's sour but DO NOT put sugar in it.

  • Mears
    Mears

    Posted

    thanks for the reply, I will suggest that when I next see my Practice nurse.

Back to top
Prev

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.