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LS progressing :0(

Posted , 14 users are following.

groky
groky

Have been keeping a watchful eye on my LS.  I had been noticing that my clitoris  has been shrinking/disappearing.  This morning to my horror it is now unseeable there is just a little opening around the front of where it was with white around the skin. Looks like it is going to close up altogether!  My heart sank when I saw this as I had been very diligent in keeping things lubed with ointment.  Don't know what to do. Will probably call my gynocologist on Monday morning to see if I can get in to see him. I just feel so helpless and kind of hopeless.

0 likes, 38 replies

38 Replies

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  • eileen23152
    eileen23152 groky

    Posted

    Hi Groky

    my clitoris has also disappeared and the skin in that area is completely flat. and cracking and further sealing is happening.

    I just worry where will it end.

     

    • groky
      groky eileen23152

      Posted

      Thank you for sharing that. It's scary isn't it. Did you doctor say there was anything they could do ?
    • athena93317
      athena93317 eileen23152

      Posted

      Are you guys using your steroid ointment correctly rubbing it in for at least 90 seconds after a twenty min bath
    • groky
      groky athena93317

      Posted

      I do take a warm bath for about 10 to 15 minutes before I use the ointment and do rub it in for about 90 seconds. Am I supposed to rub it on my clitoral area as well?
    • Guppy007
      Guppy007 groky

      Posted

      groky, I think you do need to rub it on to your clitoris.  I had some pain in that area a while back, it looked okay but every now and then I would feel a pang of pain rather like when you knock a bruise.  What I did was  soak in water for ten minutes, and then I took a tiny bit of Clob, (about half of a pearl size) and gently massaged it onto my clitoris, its not easy to do that, but its necessary I think, try to get under the hood of the clitoris, (sorry if this is too graphic but its important)  I think I would be doing this twice a day until I saw a doctor, that's only my suggestion, you must do what you feel is best...
    • groky
      groky Guppy007

      Posted

      I'll give it a try Guppy. Makes me kind of queasy thinking about it but if that will help then it will be done. And you weren't graphic at all. These are our body parts , and it helps to be specific. I appreciate your suggestions.
    • Guppy007
      Guppy007 groky

      Posted

      Hanny your progress is quite amazing!.....You should give a detailed documented account to your doctors so that they have this on record for future reference.
    • hanny32508
      hanny32508 Guppy007

      Posted

      It is already documented Guppy.  The last time I visited my gyno he wanted to know what all I do.  He wrote all down.  And I told him - pass it on.  My GP is more alert now too.  Especially since he saw how my condition was in October.  He had never seen it so severe, he said.  Both have been easy to communicate with.  I also communicated all to my nature path.  He helped me on the alkaline path, where the conservative medical system is unable to help. In a way I was lucky with the medical help; all willing to 'follow me' in my thoughts on how to conquer this LS.

      However, earlier on in the game I have refused certain suggestions they made.  Just because I didn't trust the suggestions would bring a cure of any kind.  Cutting for one.  Placing a stint was another.  We all know that these are not the best solutions.  

      Saying, make sure that you as the patient are part of finding a 'cure'.     

    • Guppy007
      Guppy007 hanny32508

      Posted

      I think that you are fortunate as is sounds like you have a really good team around you.  What makes it work so well is probably because they are listening to you, learning from you, you are working together as a team, which is what we all hope for but don't always get.
  • Morrell1951
    Morrell1951 groky

    Posted

    I had this happen and it got infected. Dr. Goldstein mentions it in his lecture: It was a pseudocystic smegma abcess. If your labia zip together right over your clitoris without this happening – well it could be worse. It's still under there and if I were more sexual I might be investing in a frictionless vibrator, if there is such a thing.
    • groky
      groky Morrell1951

      Posted

      Thank you. At this point my main concern is that there's no cancer and if it won't cause any other problems being covered up, then I'd feel better. At this point I don't even care about sex or an orgasm. Never thought I'd ever feel that way, but LS changed all that. Such a strange disease to have.
    • mborr
      mborr Morrell1951

      Posted

      Hi Morrell, how are you doing after change to protopic?
    • Morrell1951
      Morrell1951 mborr

      Posted

      Too soon to say, but I'm optimistic. I use it every third day. Usually the LS is a bit bothersome again by the third day and the ointment causes mild burning the next day. So I'm mildly uncomfortable half the time, but that sounds way overstated. No new tears since I started, so that's a real improvement. The white area seems to be fading to pink so gradually I can't really be sure.
    • hanny32508
      hanny32508 Morrell1951

      Posted

      You're describing exactly how slow the reverse process goes, Morrell.  At first you aren't sure that there is any change at all.  
  • kathleen65757
    kathleen65757 groky

    Posted

    Groky, who knows where it will stop. Worst case scenario we won't be able to pee. I have been told to put the ointment on that area every day to prevent that happening. I cannot get in and out of a bath so stick that! I do have a bidet which is great. 

    Just keep contact with your specialist who should watch it carefully. I am seen by a team at Mercy Hospital in Melbourne so I know I am in good hands. Now have vertigo so,that has absorbed me the last few weeks.

    • eureka
      eureka kathleen65757

      Posted

      Hi Kathleen, have been folloeing this site for sometime but a bit more actively now. My LS has been under control for many months and I must admit I get a bit slack about treatment. But reading some of these comments I am a bit worried for the future. I see a local Gyno...I am in Ballarat, but only every 12 months with GP followup. I feel that no one really takes this seriously. Is there a clinic at the Mercy? My mum has very severe vertigo...cannot take a step without her walker and describes her world as in constant spinning mode. Doctors also given up on this..hope that you can find some treatment.
    • groky
      groky kathleen65757

      Posted

      Thanks Kathleen. I will start putting the ointment in that area as well. That is awesome you have good doctors helping you with this. Hope your vertigo goes away. My husband had that for awhile and was miserable.
    • kathleen65757
      kathleen65757 eureka

      Posted

      Eureka, come down to Mercy...you only need to come once or twice a year and more often would still be four months. They are tremendous. A skin specialist and a gyno and sometimes more keep an eye on it for you. Ring and you will,prob need a referral from your GP. We are so lucky to have it. Every Monday afternoon there is a clinic just for that which is world class. It will take you a while to get in so make an apt and then get your referral. The vertigo,is very scary and I have a Rollator around the house and I have little confidence for going out now. 
    • jules1100
      jules1100 kathleen65757

      Posted

      Hi Kathleen, I'm from Sydney and am under the the care of a specialist - so far haven't been entirely happy with his approach, but after reading you're responses about the Mercy hospital I'm wondering whether it might be a good idea to go there.

      What is the best way to contact them regarding an appointment? Do I have to ask for someone in particular/specific department etc. I went on the website but all I found was a general contact number.

    • eureka
      eureka kathleen65757

      Posted

      Thankyou Kathleen.....will definitely get a referral. So sorry to hear that you have lost your confidence for going out...my mum at 84 is fiercely independent and is managing to attend her social groups.It is not easy and I get frustrated just watching her but watch with great admiration! I hope that things improve for you in the near future.
    • kathleen65757
      kathleen65757 jules1100

      Posted

      Mercy Hospital for Women in Melbourne, phone 0384584111 and the clinic is on Monday afternoons every week and it is the Dermatology/Gynaecology clinic. Is there nothing like that in Sydney? Try ringing the women's hospitals in Sydney maybe. Only women doctors as well which I like. I am on six monthly visits at present but have been on annual and even four monthly depending on my needs when they check me. All the best Jules!
    • kathleen65757
      kathleen65757 eureka

      Posted

      Thanks Eureka! Just went for a drive with my husband to pick up our grandson from the train. Just know have to limit travel at present. It was nice to get out and the drive in this area is lovely. Glad your mother can manage some outings.
    • eureka
      eureka kathleen65757

      Posted

      Hi again Kathleen I am at last doing something about getting a referral. It seems that the Royal Women's in Melbourne also has something. Have you been there at all? If not I will take your recommendation for the Mercy.
    • kathleen65757
      kathleen65757 eureka

      Posted

      I have been going to the Mercy for about ten years but I am sure the other is good too. We are so lucky here in. Melbourne.
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