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Do you need biopsy to confirm LS

Posted , 13 users are following.

margaret80982
margaret80982

Just been seen by doctor who thinks I have LS and referred me to consultant and told me I will probably have a biopsy to confirm. I also suffer from interstitial cystitis which I try to manage myself so im beside myself wirh this new news. Apart from an irratating itch I dont seem to have any other symptoms, and after reading about it im beside myself as dealing with my other illness takes a lot of managenent

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  • Gillian1956
    Gillian1956 margaret80982

    Posted

    Hi there a biopsy would comfirm if you have SL for sure it took two to confirm that I gave it we don't all have the same symptoms I get red sore patches and the itch but no white patches some manage it better then others it dep nds ine hie had it is really don't worry about the biopsy it's not so bad just sore for a few days 

  • Guest
    Guest margaret80982

    Posted

    I know it is scary but as long as you have a doc who is knowledgeable about LS (that is a question you should ask the consultant, how many patients does he/she have with LS and if they have any extra training in the disease) and follow what they set up as treatment you should be able to handle this. I have a wonderful specialist and have been in remission for three years so you see there is hope. Good luck. Also my suggestion to you is to write down any questions you have and bring that list with you when you go to see the consultant.
  • kris09489
    kris09489 margaret80982

    Posted

    Yes I would get a biopsy to confirm if it's LS. That's how I was diagnosed and when I saw a doctor for a second opinion on treatment, she also asked if I got a biopsy. My symptoms are like yours - irritating itch for years and sometimes some pain, but I don't have noticible patches. Treatment and management is different for everyone!

  • Anna777
    Anna777 margaret80982

    Posted

    Hi Margaret, I have interstitial cystitis too.  It seems that if you have one auto-immune disease, you may also have others.  Read the thread "An experiment with Borax" for important information on how to reverse LS.  Speaking of itching, after a couple of baths with baking soda (1/3 cup in a tub) my itching completely stopped, and I'd had intense itching for years.  I think the borax also helps with itching, but I'd already gotten that under control with the baking soda, so I don't know.

    I never had a biopsy because my doctor visually diagnosed me.  I'm not sure a painful biopsy is necessary if the doctor already suspects it's LS.  Try the baking soda and borax.  If things improve, then you don't really have to undergo a biopsy.

    Having LS and IC together is a challenge, but with just a few modifications, you'll feel so much better.  I'm here to tell you it'll be OK!

    • margaret80982
      margaret80982 Anna777

      Posted

      Thank you, the itching isnt all the time and nit really uncomfortable, I have been pescribed steroid cream and diprobase to wash with , so hope fully that will work and will try the baking powder. Have decided im not going to have biopsy as I could have reaction with ic and dont wAnt any flare ups, dont no what u take for your ic but I take cayenne pepper capsules and what a big difference they have made and the thought of this LS scares me if it gets worse as its took me years to get my IC under conrol
    • Anna777
      Anna777 margaret80982

      Posted

      Hi Margaret, the only thing I take for IC is marshmallow root. Anything hot or acidic causes a lot of pain, so I avoid wine, citrus, pepper, etc. Your LS won't get any worse if you treat it. In fact it will get better, and I'm not talking about steroids. I and many others on here don't use them.  When you have time, take a look at that discussion thread on borax.

      Good luck!

    • margaret80982
      margaret80982 Anna777

      Posted

      Thanks anna have been using the cream a couple of days and already see a difference so hopefully I havent got it too bad, and as for the ic im finding now with being on the cayenne pepper tablets I can eat spicy food and drink alcholol which I couldnt before so am grateful for that , and have decided definitely nit having biopsy
    • chicks
      chicks margaret80982

      Posted

      Please be careful about using the steroid cream too much. Try other solutions such as the Borax and Castor oil mixture etc.
  • sue162
    sue162 margaret80982

    Posted

    Sometimes the biopsy as mine did is inconclusive and comes back chronic inflammation.  So sometimes they go on visual as well.  
  • Metta
    Metta margaret80982

    Posted

    Hi Margaret,

    I don't know much about IC but if you have LS and a biopsy confirms it, I believe they'll just continue prescribing you steroid ointment anyway. (Maybe they're suggesting a biopsy because they're not sure if it's LS and don't want to keep prescribing you steroid ointment if that's not the problem?)

    I understand being upset about a diagnoses of LS but trust me, it's good if they caught it early! I wish mine had been caught earlier. If left untreated, LS can progress and potentially cause mad itchy open sores, the disappearing of labia minora, and more.

    Maybe just see how the steroid ointment works for a while (you have to keep using it regularly for an extended period) and check this forum from time to time for other people's experiences. I have not tried the baking soda or Borax yet, but am keeping them in mind.

    Glad to hear you found a way to keep your IC under control.

    Metta : )

  • susan39248
    susan39248 margaret80982

    Posted

    If you are going to be referred, have a look at my earlier post about finding a specialist.
  • robint2101
    robint2101 margaret80982

    Posted

    I had a biopsy to confirm it plus they told me they want to make sure it wasn't cancer because LS can turn into cancer or look similar to cancer, so it is wise before you start treatment to get the biopsy. 

  • Metta
    Metta margaret80982

    Posted

    My doctor didn't do a biopsy. She just prescribed Clobetasol and said I should come back to see her in four months. It all seems a bit hands-off to me. I would have preferred to go see her again in max two months. Also, I've called the office a couple of times but my doctor (a gyno) won't talk to me. She has her assistant act as intermediary and there's never much progress after I leave her with my questions. At my first (and only) appointment so far, my gyno came into the room, viewed the situation, gave me her opinion, and left rather quickly. The assistant was left to hand me a few informational papers and advise me not to go looking around for further information on the internet. (That did not sit well with me.) They also told me to use just 1/4 of a pea's worth of Clobetasol per day. I did this for a while as I was rather afraid of using a steroid ointment and didn't want to use too much. However, the LS continued progressing. I could feel the pin pricks, tingling and sizzling. After finding this website (thank goodness!) I read various ladies' experiences with Clobetasol and realized that 1/4 of a pea's worth each day wasn't very much. It hardly covered the affected area and, in fact, I don't really think it did. In reading the comments on this site I became brave enough to experiement by using a wee bit more, and even to apply it a second time per day if I began to feel pin pricks, tingling or sizzling. I soon realized that the entire affected area has to be completely covered with Clobetasol ointment pretty much at all times, especially in the beginning when trying to get it under control. I only wish I'd known that from the start. Every tiny bit of labia minora and clitoris I can save, I want to save! Anyway, it's been about two months now and although I got off to a rocky start, and although there is still some white, I feel the LS sensations less frequently and much of the skin has pinked up. I am writing this description of my experience in detail in hopes that it might help someone else.

    • Guest
      Guest Metta

      Posted

      So sorry for your experience. It is so I important to have a doc who is knowledgeable and caring. I am not sure if you are in UK or USA but I would highly encourage you to see if you can find another doc who will listen to you and answer your questions and talk to you! When I was first diagnosed, three years ago, My specialist had me use a pea size amount of clob twice a day for two weeks and then twice a week for three months. She then saw me and checked everything out and had me continue with twice a week until she saw me six months later and then decreased clob to once a week which I am still doing and will probably have to continue indefinitely but this is working for me. A biopsy was done before any treatment was started. I know some of the info on internet is questionable but this forum has also been very helpful for me. There is not a lot known about this disease but the best info anyone can get is directly from people affected with it. I know this affects everyone a little differently but I have learned a lot from the people on this forum. I am one of the lucky ones who had no symptoms such as itching, tingling etc. only redness. The only thing about not having any other symptoms except redness is that the first gyn I went to kept treating me for fungal infections until he finally did biopsy three months later. Once I got results of biopsy I looked on internet and I asked him for the clob. He did not seem to know much about LS so I found a specialist who does and am very glad I did. I think I would be in much worse condition if I stayed with first gyn. Good luck and hopefully your gyn will realize she needs to be accessible to her patients!
    • sue162
      sue162 Metta

      Posted

      Hi Metta,  it sounds like you treated the L S early for it to pink up.  Mine was as white as snow but has gone pink again.  I’ve lost the minora but I think I also have oestrogen loss due to post meno by six years.  I read the link atrophy versus L S aggulation and I think I’ve the latter.  
    • sue162
      sue162 Guest

      Posted

      Same here Dunkin girl clob once a week for maintenance.  
    • Metta
      Metta Guest

      Posted

      Thanks for your feedback, everyone. I am actually in Canada, but in a region outside the central area where most of the upward-climbing specialists would congregate. Still, I think I will see if I can find a dermatologist instead of/in addition to my gyno. I'm also going to see a naturopathic doctor soon. I'm glad to hear that you found a specialist to help you, Dunkin girl. I've said it before, we have to be our own best advocates. Sue, I'm glad to hear that yours also is under control. I am slightly post-menopausal, too, and also think estrogen loss is part of my problem. I am thinking about using estrogen cream once the LS is in maintenance stage. Have any of you tried it?

      In any case, I like the way your doctor initially treated your LS, Dg. It sounds like she wanted to stop the LS in its tracks by keeping it covered with Clob for two weeks, then gradually easing off. Makes more sense that what I was told. Again, I am very glad to have had the opportunity of reading all the posts on this site!

      Imagine what women and men must have gone through before there was internet and a way to share information? Especially in less-populated, out-of-the way places. Their doctors would have known nothing about LS, and might even have shamed and accused them of infidelity. I shudder to think.

    • sue162
      sue162 Metta

      Posted

      Hi Metta,  I sometimes think drs don’t seem to want us to have knowledge about conditions, but after all knowledge is king.  We have a condition like any other condition which we have a right to know everything about and if that means joining a forum and learning then it’s good.  I felt frightened and alone before reading threads.  Sorry, I put the latter in my post I meant I think I seem to have a lot of oestrogen deficient atrophy.  I was told to use vagifem but since reading I think I should of been told another brand for outside area maybe estrace.  I haven’t used it as I was frightened about it being absorbed and having a bleed or the lining of uterus being affected. I know they say systematically it is like one HRT pill per year but I decided on Yes moisturiser which has helped. X
    • Guest
      Guest sue162

      Posted

      Hi Sue,

      I know what you mean about the estrace. I was using a very small amount twice a week for a uretheral caruncle (in case you don't know what that is, it is an outpouching at bottom of urethra caused from lack of estrogen) I was putting it in right on the caruncle. I had several docs say such a small amt of estrace would not cause any problems but after using it for several months I developed a lump in my breast. Thankfully it was just a cyst but as I am way past menopause having a breast cyst is unusual. I still feel it was from the estrace even though all docs said no. I stopped it immediately. I have had part of my right labia minora"melt" and had thought about putting a small amount of estrace on it to see if it would stop any more from disappearing but am now afraid to use it. I have not heard of the moisturizer that you mention. Are you in the US and if so where do you purchase it? I would like to try it.

    • Metta
      Metta sue162

      Posted

      Hi Sue,

      Yes, I know what you mean. Maybe when the doctors don't know very much about it themselves (as seems to be the case with LS), they are less likely to provide much information or feedback. I was very interested in your use of the term "estrogen deficient atrophy". I did not realize that estrogen could also cause atrophy. I told my doctore (gyno) that my estrogen was most likely very low due to menopause and (get ready) the fact that I am still breast feeding. (Yes, I had a baby later in life.) But my doctor did not respond to this. I specifically called to ask whether I should also be using estrogen cream, and the doctor's assistant said, "Some women do that." Then she told me the gyno wanted me to continue with the Clob until the end of the four-month prescription period. I am quite frustrated with this response, which seems inadequate. If anyone else here has ever used Clob and estrogen at the same time with regards to LS, I would love to hear how it worked for you. Thanks very much to all.

      Metta

    • sue162
      sue162 Guest

      Posted

      Hi Dunkin girl,

      i dont blame you stopping the cream, we all react different don’t we.  I’m from uk I got the YES moisturiser not the lubricant version from e bay it’s on amazon or I think they have their own website,  it’s all natural, lasts ages and has helped.  It says it is for atrophy as well.  A tiny amount of estrace on minora surely wouldn’t harm.  I had read young children get LS before puberty and are prescribed oestrogen cream before menstruation.  The Yes was ten pounds. X

    • sue162
      sue162 Metta

      Posted

      Metta,

      i have read L S is common in menopause due to lack of oestrogen and we can get it alongside L S .  I never knew any of this either or about oestrogen creams I look back and think god I was useless not knowing anything about female things.  At xmas after biopsy I was told I needed clob and vagifem but am frightened of HRT in pill or cream form.  I didn’t know either but oestrogen is needed in our bits and the minora area needs oestrogen to stay healthy and is quite receptive of oestrogen. This should be all explained to us shouldn’t it,  they want us to remain ignorant to our condition bit I think it’s best to help each other as losing our bits visibly melting away is a frightening thing. 

    • Guest
      Guest sue162

      Posted

      Hi Sue,

      Thanks for the info. I am going to check amazon and also go online to see if they have their own site. I may go back to trying a small amt estrace on labia minora. I don't want to lose any more if I can help it. At this time me labia minor on left side looks okay it is just on right side that it has melted. This is where I had the white patches, not so much on left. I am so glad I found this forum! I have learned a lot from everyone out there. 

    • sue162
      sue162 Guest

      Posted

      You’re welcome.  Let us know if you put oestrogen there and if it helps.  Same here LS started on minora and it’s there that it’s disappeared.  X 
    • chicks
      chicks sue162

      Posted

      My gynie told me many years ago to use oestrogen cream but I was too scared to, thought it would increase my chances of getting cancer. Maybe if I had done that I wouldn't be in such a bad way now. I think I would still be nervous to use it.

    • sue162
      sue162 chicks

      Posted

      I’m the same Jan.  I’ve read mixed reviews of using it.  I worried about the cancer aspect as well.  I was worried it would cause bleeding which I think like you I would be worried about.  
    • Guest
      Guest sue162

      Posted

      The more I thought about it I decided against the estrace. I was a wreck waiting for breast biopsy and do not want to go thru that again. The docs can say it wasn't the small amount of estrace I was using that caused the cyst but I never had one before and am way past menopause. They say a cyst past menopause is rare so I still believe it was from the estrace, so no estrace for me. One doc told me no studies have been done on the use of small amts topically of  estrace so I don't know how they can be so sure there are no adverse effects from it!

    • chicks
      chicks sue162

      Posted

      Difficult to know what to believe Sue. I have been taking HRT since I was in my thirties (I am 67) as I  had both my ovaries removed at a young age due to cysts. Over the past 10 years or so I have only taken it 3 times a week. A gynie told me years ago not to stop as I was more likely to die from a bone disease than I was to die from cancer. So I have been really nervous about taking more estrogen. Although in my case seeing that I don't have my ovaries maybe it would have been OK. Who knows.

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