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.
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.
Thank you for sharing that. It's scary isn't it. Did you doctor say there was anything they could do ?
Are you guys using your steroid ointment correctly rubbing it in for at least 90 seconds after a twenty min bath
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?
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.
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.
Hi Morrell, how are you doing after change to protopic?
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.
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.
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.
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...
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.
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.
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.
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.
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!
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.
Dear Groky and all the others that are seeing their clitoris disappear:
I feel for all of you. It sounds lame, but truly, I have been there and then some.
My answer has been baking soda, coconut oil, hormone replacement, magnesium & calcium, vitamine D, strict diet, dilation. Glob maintenance level.
The fusing is happening over the clitoris.
My fusing over the clitoris is gradually melting away. The process is actually happening in reverse. Same pain, but in reverse. (At the time my clitoris disappeared I didn't know I had LS. Just felt the discomfort of it all. ) What I'm hoping to communicate is - don't despair. It is possible to reverse the situation.
I'm not making this up. However, it is not a fast process and it took me from October last year, when I was totally fused up, till now. Lots of determination, diligence and at times utter dispair, it was a rough road. Looking back, I don't even understand how I pulled through. Where did I get the willpower to go on trying, I wonder.
I have no idea whether me writing this will give you hope at all. Though rest asured - it is meant as such.
Wishing you all WELL.
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.