Do any of you have LS without itching?

Posted , 11 users are following.

My PA thinks I may have it by visual observation only and wants to do a biopsy to find out. Hmmmm I'm 75 and not too thrilled about that.

I have no itching or any burning - she is just going on a little shiny bit and some redness.


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53 Replies

  • Posted

    it is better to find out so you can start treating it before it gets worse. Be glad the PA is taking it seriously. I have been told that due to my age and I am only 63, that not to worry about "female problems" as if they think I have a foot in the grave already.

    I am in the US and this is a pretty routine attitude.

    But I am still actively raising teenage grandchildren, and my family live past 95, so I feel like if I run true to my genes, I have 30 years left.

    it makes me mad they think 63 is so old!

    That old saying about an ounce of prevention being better than a pound of cure is very true in this condition.

    I have seen people here talk about hiw this has affected them so badly.

    There is a lot if good advice here too.

    No matter what age you are, you deserve top notch medical care fir your own self.

    Wishing you the best.

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    • Posted

      Joann, what are the symptoms that are so bad?

      I'm already pretty miserable with atrophic vaginitis and its many urinary problems - urge/frequency, spasms, sleepless nights, etc.

      Thanks for any advice.

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    • Posted

      I had those you mentioned, in addition i have dysplasia and AiN 4. and a huge rectocele.

      I was misdiagnosed numerous times.

      I have squamous cell carcinoma as well. So I have been on a terrible journey.

      Finally getting proper treatment and my urogynecologist asked me what symptom bothered me the most. I replied feeling like I have to go pee all the time. That it was a constant feeling and even if I peed a lot the feeling I still needed to pee never stopped.

      i had been on detrol but it did nothing to relieve it, just made me drink more fluids due to constant dry mouth. I pretty much became house bound because of the urgency feeling and not being able to even get to my DR visits without leaving early enough to stop on the way to use the restroom . Hoping theres no traffic, & needing to know the location of every available restroom.

      We travel a lot too and airplane trips were a nightmare. I was becoming agoraphobic, to the point i rarely left my bedroom and even located my bed closer to the bathroom door. I would sit on the toilet & cry because it would burn and hurt so much I would swear i had a UTI, & go to DR for urine culture and there would be no UTI. Honestly since I have been taking the Mirabegron have no idea how i survived all that. if my urogynocogist had not asked me that one question i guess I would still be suffering. It truly has been a miracle drug for me.

      After my first dose for the first time in my entire life I slept all night without getting up to go pee.

      I had used the clobetasol too but I also have panhypopituitarism. And only recently got off prednisone and synthroid because my pituitary quit working due to a tumor. After 11 years of those meds, my pituitary had started producing enough to stop the meds. But clob contains steroids and Endo Doc said my body would stop making its own if i used anything contained steroids. So she said stop using it.

      After the overactive bladder sensation stopped with the mirabegron, I do still have the vaginal atrophy as well and they prescribed a vaginal ring to wear that secretes the estrogen. & the premarin cream to put on the outer surfaces.

      i have found it takes a lot of trial & error to arrive at what works best for the individual.

      I use something over the counter called tamanu oil because I also have Atopic Dermatitis and the oil works for that and i just decided to put some on my vaginal area to see if it would work there too and it did.

      And yes i had used countless potions, lotions, etc. both prescribed and store bought.

      I guess you get so desperate for relief you try every thing once.

      So I guess thats the answer is to figure out what symptom bothers You the most and start from there. Once you get the most troublesome symptom under control then work on the minor ones.

      If you have what they call multiple modalities you might benefit from getting seen by an internal medicine Dr. They are like the detectives who figure out mysteries and direct you to the proper specialists.

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    • Posted

      Contact him and ask him why it was blocked. Unless you are trying to sell a product or a service there is no reason to block us sharing useful health information. It's supposed to be the purpose of the site, correct?

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    • Posted

      So glad you got the mirabegron - what a lifesaver and mind saver, too. that has been.

      I can't imagine what you've been are one strong woman for sure.

      Is your squamous cell related to your LS as I have heard, in rare cases, it can develop.

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    • Posted

      Hi Joan, if this is the post that was blocked I can't imagine why. Maybe because it had unfamiliar words in it? Even so, it is clear upon first reading that you are not selling any drug or product.

      You have been through a lot! How long have you been taking the Mirabegron? Are you able to get out more now? Hope so. Sounds like you've been given a new lease on life. That's great!

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    • Posted

      yes Beverly. It has been a huge difference and its been a month.

      The first night I Laid so still in one spot I woke up and I thought it was still night. I had to check the time online to see it was the next morning. I was so used to being awake every hour to go to the restroom I never used an alarm since I was up already every day.

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    • Posted

      And even at my age I was still very active all the time. Raising grandchildren still. one will be graduating next year.

      We have traveled a lot with the military and now I will be going back to teach college after the last grandchild graduates next year.

      So I look forward to being able to keep up with students. And do field trips and outings.

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    • Posted

      SO mainly you have to find what works for you. Because it might be you have a different chemical imbalance to any one else and you cant just take a one size fits all approach.

      we have different tastes and appetites and our body knows what we put in it. If i tried to eat the junk my grandkids live on like they could eat ramen noodles or pizza 3 times a day no problem. I would be missing my fruits and juices. They never drink anything but soda pop. I need water. I can try to slake my thirst with tea or flavored drinks but if I don't drink plain water I will still be thirsty.

      The same is with medicine until you know what your body needs you cant just guess at it.

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    • Posted

      You must be walking on air after such misery! I can't sleep more than 5 hours a night so feel like a zombie most of the day. Have tried several pills the doc has prescribed and nothing works. Can't imagine getting up every hour, but it sounds as though you were maybe able to get back to sleep.

      I would be a little concerned about the health of your grandchildren if that's how they eat and drink, but I assume this is OK with their parents. What you put in your body as it's developing may have a lot to do with what we end up with as adults. But I never had children, so it's easy for me to say.

      I too am wondering if the doc feels the cancer is related to the LS. Have all your issues been treated? I had dysplasia when I was younger, but it was diagnosed and treated quickly. Hope your treatments are working well for you.

      You sound very busy and ambitious. Clearly health problems did not wear you down. That's really commendable.

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  • Posted

    why does she want to do a biopsy then? would say no thanks and ask for some steroid cream. if it clears it up then there's no need for a biopsy. why inflict pain and suffering? My LS lives quietly as a white line on the inside of my labia minora. It only itches when I have a flare up.

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    • Posted

      Dee, she put me on Clobesterol but it burned/ached down there so she took me off. Nothing right now.

      If the LS causes urge/frequency maybe that's what's bothering me and not the atrophic vaginitis?

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  • Posted

    plus I've never had a biopsy done, diagnosed through visual examination. As theres no cure you can either treat it with steroids or not.

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