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Doctor experiences

Posted , 19 users are following.

Guppy007
Guppy007

I was diagnosed around April this year.  Looking back I can see I made some errors, but I also think my Gynecologist failed to impress upon me the gravity of this auto immune condition.  Only now in October can I see the results of this...some of my labia has fused! and quite honestly I do blame myself, but I also had no idea what I was dealing with...anyway, I thought I would ask other people to share their experiences of their doctor and their treatment....

3 likes, 131 replies

131 Replies

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  • winifred02134
    winifred02134 Guppy007

    Posted

    Hi Guppy , so sorry to hear of your troubles with your docter, l have just spent the last month in agony , l have a had a water infection for 3 weeks which my docters (lv,e seen 6 of them ) could not find the right antibiotic , samples were sent to the hospital , they took over a week to come back , eventually they hit on the right drug , it took 2 courses of this powerful drug to work , well l hope its worked , ite been 3 days now, fingers crossed . at the same time what l thought was my LS was driving me insane , inflamed , very painful , l dreaded the loo ! Well it turned out on about the 4th doc that it was thrush , this thought came to them when l got thrush in my mouth and they could say for sure it was thrush , so she gave me some different washing soloution and some cream . This within a day and a half made my intire pubic area swell up into the most painful hard lumps, so back to the docs l went and was given a tablet to take , when l got it home the label said NOT to be taken by over 60 year olds, so l had to wait another night to check that out , l took it yesterday and can see improvement, but l can also see see the state l am in , l have delveloped a white spot which feels bead like to touch , is this another reaction or something else to worry about ? also things are fusing together , not a good look. l have asked since August to be referred to a consultant , l got referred to a uroligist last week and was told l did not need a consultant for my LS , l went back this week with my husband ( bless him ! without his support l could not go on !) and l sat there and demanded to see a consultant l nearly went down on my knees ! She said YES ! l promptly made a fool of myself and burst into tears ! l am now just putting a barrier type cream on and washing with my old faithful aqueous cream until my appointment comes through , hopefully soon ! It should not be like this , the docters dont seem to notice or care that this  thing really hurts , l feel like l have been treat like a lab rat ! they are just guessing  when they give you all these pills and potions , the thrush was caused by the amount of strong  antibiotics l have taken recently.  Sorry for ranting on , but this forum is the only place where anybody understands , l am so glad l found it . Keep your chin up Guppy , you never know one day a bright dermatoligist ( have l spelt that right?? ) will make a break through , there is always hope. l have a heart condition which until last year there was no hope for , it killed my grandfather, my aunt and my lovely brother  , but now a brilliant docter in Leeds as come up with a pacemaker which while it is not a cure , can save your life . l was born blind and my mother could not get me any treatment , so she went to church and prayed and when she opened her eyes a priest asked her what the matter was , as a result of speaking with him ,l was put into an experiment , and it worked now l can see ! so please have hope , miracles happen l know they do , have faith .
    • Guppy007
      Guppy007 winifred02134

      Posted

      Winifred...Goodness you have a lot going on!  I am so glad you are finally getting to see a consultant for your LS, its a disgrace that you had to almost beg for it!  Also some doctors neglect to mention that you need to take probotics whilst taking antibiotics as they can cause thrush.

      I want to share something with you and for others of course.

      About two months ago I went Gluten free, I had no choice really, and I am feeling better, but whilst on my Gluten free "diet" I consumed quite a few gluten free shop bought biscuits.  Unfortunately they put a lot of sugar in these products, which I was blindly unaware of and on top of that a friend brought me lots of lovely chocolate back from the UK and so the consequences of that was a recurrence of oral and vaginal thrush AND a flare of L Schlerosus and I think I have also got a bit of Lichen Oral Planus going on as well.

      So...Its hugely important not to eat too much sugar with this condition.

      With regards to yourself, I would suggest taking a Diflucan, if you have any more problems which you can get over the counter...take a good probotic everyday too, I take Ultimate Flora Critical Care 50 billion.

      Best to you.

       

    • Morrell1951
      Morrell1951 Guppy007

      Posted

      Guppy, thanks for the fine example of how this gluten-free fad is a major industry. Sugar is so bad for inflammation. I think of it as like putting sugar in my car's gas tank. I suspect white flour is almost as bad since it quickly digests in to sugars. People with celiac disease need to exclude gluten from their diets, but there aren't enough celiacs to build an industry on. I imagine a lot of people who try to avoid gluten benefit by avoiding donuts and white bread and many other sweet and empty baked goods as well as white flour pasta. I've been using gluten-free pasta made from quinoa and I eat good whole-grain bread. Yes, sometimes I have a white bun. I don't bake desserts any more because I've cut out most of the sugar from my diet. I always say, 'everything in moderation – including moderation.
    • winifred02134
      winifred02134 Guppy007

      Posted

      Hi Guppy, thanks for the reply . My situation as changed since yesterday l am having trouble keeping up with it ! My docter rang me last night  with my blood test results , well, l have not got thrush ! so thats another drug l have taken that l did not need ! the offending area ( for want of a better discription ) did appear apart from strange white bead like spot to be cooling down , however today the spot is no longer visile although l can feel it under the skin, but one whole side is swollen , hard and slightly itchy. my mouth also is still sore, l think the LS may be in my mouth now which is worrying , l didn,t think last night to say this to the docter , l was not expecting her to call and l was not prepared l just didn,t think .Anyway , she did not no where to go from here and said to go see her if anything changes and hopefully my consultants appointment will come soon , meanwhile to put any of my exsisting prescription creams etc on that l thought might help. So here l am ! l have got some probiotics but had only been taking them a few days before this latest flare up might start again with them l got cranberry tablets as well but my docter says my water infections are so bad they will make no difference. Taking anything over the counter is a no no for me as l take a few other powerful drugs for other things so l have to run everything by the docter . Ah well l expect it will all come right eventually . Happy hallowean !
    • Guppy007
      Guppy007 winifred02134

      Posted

      Hi Winifred,  I am not a doctor, but like everyone else on here I have some experience.  It is possible you may be developing a spot or a small boil under the skin, your symptoms sound that way, only time will tell, keep an eye on it and see what happens...if it is that its not so terrible, believe me I have been there!  

      Can you not take cranberry juice daily for your water infections, I would drink that, seriously its supposed to be very helpful. 

      I have oral lichen planus also, and when I have that it presents itself mainly on the tongue, usually in a white lacey like form, my gums swell up slightly, sometimes I get ulcers at the side and under my tongue, but the main giveaway is the red and white patches that appear on either side of my mouth...so look for that, you might just have something else.

      Best to you. 

    • Morrell1951
      Morrell1951 Guppy007

      Posted

      You might want to consider how much sugar is in the cranberry juice. You can by pure unsweetened at health food stores.

       

    • winifred02134
      winifred02134 Guppy007

      Posted

      Hi Guppy, y thanks for the imformation, l will watch out for those signs. l have some cranberry tablets l will start taking them although my doc says in my case they will not make any difference . Regarding the spot , it as disappeared as the whole side as now swollen up , it now looks like something from the Alien films ! l have got my appointment through its next Thursday so l will try to hold it together until then, hopefully the consultant will sort me out . l suppose l have been lucky l have had the last 18 months with no trouble at all , maybe this is just a bad patch which will soon be over. So glad to have someone to talk too. x 
    • Morrell1951
      Morrell1951 winifred02134

      Posted

      How much swelling is there, Winifred? I had a huge swollen cyst right over my clitoris, which called for anitobiotics. I waited till I could hardly stand to move and the pain extended across my lap. The abscess burst (yuck!) and then I went to emergency, where they prescribed antibiotics. (This was what got me finally diagnosed with LS.) I really should have gone sooner.
    • winifred02134
      winifred02134 Morrell1951

      Posted

      Hi Morrell , the swelling is all down one side its lumpy and very sore especially at the top.I wasn,t this bad until l took antibiotics for my water infection , this started on Oct 3rd since then l have taken 3 courses of antibiotics very strong ones, water was tested last Thursday it still shows infection and swab taken of sore area shows infection my docter really does not know what to try next, she thought l had thrush so l swallowed another drug for that after her first idea of cream went badly wrong causing the start of all this swelling. She told me to put on the clob or barrier cream or nothing , my decision !!! My appointment with the consultant is on Thursday so l am putting the clob on anything else would be to heavy for my skin which is like wrinkled tissue paper , leaving it dry is not an option it would spilt ! Anyway l will try  to hold it together until Thursday . Just hope the consultant is good. Its a great life as long as you dont weaken !! Thanks for caring

    • Hazel1962
      Hazel1962 Morrell1951

      Posted

      I had a similar very large cyst over my clitoris when in my late 20's, it eventually burst (yuk...as you say!) but the relief was nice when it did burst as it was very tight. I am sure this is when my LS started and the fusion over my clit. Some Dermatoligists believe it can start from an untreated infection and I like you put off too long before seeking treatment.
    • Morrell1951
      Morrell1951 Hazel1962

      Posted

      Well, I think the sore that was misdiagnosed as herpes was my triggering infection. The abscess over my clit was forty years later. The more we talk here, the more complex it seems. No simple pattern is emerging.

      Hang in there Winifred. I can see you've got heaps of complexity going there.

    • Guppy007
      Guppy007 winifred02134

      Posted

      Winifred..I just wondered how did you get on?  What did your consultant say, I hope its good news.

      Katie

    • winifred02134
      winifred02134 Guppy007

      Posted

      Hi Katie , l saw the consultant 12 days ago now , l am waiting for the results of the 3 biopsies that she took , the soreness as now eased thank goodness it was a bit painful for a good few days. She kept saying she didn,t think there was anything sinister there, but did say if the tests were inconclusive she would have me in for deeper biopsies , a grusome thought ! so l am just waiting , every time the postman comes my stomach turns over , l expect lots of the women on this forum are very familiar with the feeling. l am not allowed to put anything on except a tiny bit of vaseline    but only in desperate moments . Thanks so much for aking how l am , it was very kind of you. Will keep you posted , Win
    • Guppy007
      Guppy007 winifred02134

      Posted

      I see.  Its always horrible waiting for results, I have had a horrible couple of days myself with a huge lump on my vagina, but I think incredible as it may seem I think it is an  insect bite!!! today it seems less itchy, but I am cautious, it could of course be LS in a form that I have never seen before.

      Do let us know when you have the results!

    • Morrell1951
      Morrell1951 Guppy007

      Posted

      Winifred: I feel for you. I had two years of waiting for various punch biopsies on my cervix. Ultimately it was all good. But I got so sick of it I resolved to stop having pap smears. That was a mistake. My fusing might have been red-flagged several years sooner.

      Guppy: Glad to hear the bump has improved a bit. That's a good sign that it was only a bite.

    • hanny32508
      hanny32508 Guppy007

      Posted

      I have similar experiences and wondered whether this has something to do with LS.  I am doing well down below, very well.  However, what the body seemingly could no longer shed down below moved under my arm pits.  Lumps!  I am giving it the same treatment as down below - baking soda and coconut oil - and that seems to keep it in check.  However, it doesn't seem to be in a hurry to disappear.  

      The body is in need to shed something.  Is this the way the human body does this?  Anyone else have any thoughts on this?

    • Guppy007
      Guppy007 hanny32508

      Posted

      Not sure lumps under the arms are related to LP, Morrell may know better than I, but I think you should show them to your doctor to be honest with you, just to be on the safe side!

      btw...I feel silly admitting to this...BUT I did put baking soda quite thickly into the fold of my vagina, the area that has fused, and I left it there for a couple of hours, and the next day it was very sore lol! it was a bad idea, I am just glad that I didnt put it on and go to sleep with it, spraying with baking soda is the way to go!!

    • Morrell1951
      Morrell1951 Guppy007

      Posted

      OK, I think we've gotten to the bottom of the lump mystery. Bad idea, might have seemed like a good one. Mantra: more is not better.
    • hanny32508
      hanny32508 Guppy007

      Posted

      Bad idea for the baking powder overdose, I agree.  

      Start to hate running to the doctor.  But may have little choice.  

    • Guppy007
      Guppy007 Morrell1951

      Posted

      Yes I think so..maybe that was the cause of the itchty lump at the side of my Vjay, anyways it is definitely better today.
    • Morrell1951
      Morrell1951 Guppy007

      Posted

      whew. You've been a guinea pig and paid a price. Lesson for us all. More is not better.
    • winifred02134
      winifred02134 Morrell1951

      Posted

      Another day and no results . Hopefully it will not be long now . You sound like you are a very positive women  , telling it as it is ,  l think a good spirit is vital to every women who has LS , if we make mistakes and wrong decisions we are only human , the thing is to keep on going , lets face it our docters are blundering with this, so l think after reading all thats written in this forum , we are putting up a good fight against LS.  The comradeship on this forum is amazing !
    • Guppy007
      Guppy007 Morrell1951

      Posted

      I just didnt make the connection between the two things..but there you go...anyways no one else will make that mistake after reading this lol!!

      Winifred....your right about remaining positive, lets face it this is a horrible condition to have, and could easily make you depressed if you let it. 

    • anna80050
      anna80050 Guppy007

      Posted

      baking soda and baking powder are different arent they??
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