Buzzing
Posted , 8 users are following.
Does anyone else experience continual 'buzzing' or 'fizzing' sensation rather than itching? It's rather like a nettle sting. I have still yet to get a proper diagnosis but GP believe this symptom plus fusing to be LS. I have no white patches. I have started swabbing with borax morning and night, which is soothing. I moisturise with coconut oil and wash with emollient cream. Also is it best to see a dermatologist or a gynae or both? My gynae and GP have been vague about putting me on treatment.
1 like, 21 replies
Metta sarb73328
Posted
Yes, I get the buzzing, fizzing, tingling feeling sometimes and, although I can't be sure, I think it means the LS is quietly at work "disappearing" more and more of my labia. Sometimes it's not even as noticeable as buzzing, fizzing or tingling -- it's simply a sudden awareness of a certain area of skin down there. Like last night I woke up and could simply "feel" an area of skin on the left side of my anus. I was "aware" of it, which is unusual. I took that to mean LS was at work and went to spread a little Clob on it, in hopes of arresting the progress of the atrophy. When I woke in the morning, I didn't have as great an "awareness" of that area of skin anymore, so my hope is that the Clob did some good. For a day or two once my clitoris was tingling (for lack of a better word), and slightly aroused all the time. Having mused over this for a while, I now feel it was the LS quietly at work to "disappear" the folds of skin over my clitoris, and also perhaps the clitoris itself. Most of what I write here is based on my own personal observations. Hope it helps.
As to which specialist you should see, I think the only thing that matters is which one has the most experience with LS and seems to know what they're talking about.
Metta
susan39248 Metta
Posted
sarb73328 Metta
Posted
Thanks for sharing that, Metta. Your descriptions are very much the same as what I am experiencing. My GP has prescribed Amitrytiline which helps 'tune out' the sensation but doesn't get rid of it completely. She has still not prescribed clob and I am going back to her to hammer her for more info when I return from holiday as I don't think I am getting the care I deserve. It is all so frightening.
Metta susan39248
Posted
Hi Susan,
No, I don't believe I have the peeing issue, although the tingling sensations did for a while give me a similar feeling to when I actually do need to pee. I do not know for sure, but I wonder if the LS, when active, can stimulate a certain genital area to make us feel like we need to pee? Then it seems to move on to another area and I don't have that feeling anymore.
Metta
Metta sarb73328
Posted
Honestly, when I was first diagnosed and realized what was happening down there, I was in shock. It was difficult to absorb the reality that my labia was actually disappearing. And then after reading other visitors to this site, I realized that my clitoris might also disappear. I was shocked again. I think I am somewhat tired out from the shock now, and resigned to it. I try to make myself laugh by imagining the conversation I will have one day with a new boyfriend when I explain to him that I have no labia or clitoris. Hmmmm! I try to focus on what I can do each day to be as healthy as I can be, physically and mentally. I do not always succeed, but am trying to stay with positive thoughts. That always helps.
Anyway, I have not heard of Amitrytiline but I think it would bother me if some medication was masking the symptoms (as long as they're not super painful). At least when I feel the tingling, buzzing or whatever we want to call it, I know something is going on and I can apply Clob. Now, I am under the impression that Clob can stop the progression (although not cure it). So my hope is that when I feel the tingling, I apply Clob, and it works to stop the progression of the LS. This may all be conjecture as opposed to what's really happening, but that's my plan for the moment!
I've been interested in reading what some have written about borax (and baking soda?), and may also try that in the future.
Metta
susan39248 Metta
Posted
Hi Metta, I really feel for you :-(
Thanks for your comments about the peeing sensation, I guess it could well be a sort of hyper-sensitivity. I forgot to mention it to my GP so will see how it goes between now and my next appointment.
I have just seen my GP again, who is a 'GP with a special interest in Gynacology', lucky for me. Her view is that the lower strength treatment I had, has done the job, there are no signs now of LS and I should just use the ointment once a week and that should keep it at bay. I asked whether the absence of surface signs of LS and itching meant that the condition, at all levels in the skin, was under control and she confirmed that was correct. She thinks 'that's as bad as its going to get for you' . She seemed pretty happy, I hope she is right. :-)
Sue
Metta susan39248
Posted
Hi Sue,
I hope your doctor is right, too. I don't think she would knowingly give you false hope, so she must really think things are looking good.
Take care,
Metta : )
susan39248 sarb73328
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Hi sarb, LS is very frightening, especially for a younger woman, your GP should have told you what the plan was. Perhaps she is unsure how to proceed even though the treatment options are clearly stated online. Prescribing an anti-depressant but no treatment seems odd. Maybe she plans to get a biopsy organised before treatment starts, which I have read is something a Dr might do. How bad are your symptoms and when did you last see your GP?
Amitryptyline, it is an old style anti-depressant and it is the case that some of these drugs do have other effects other than 'treating' depression. I agree with Metta, masking symptoms sounds like a very bad idea. How long have you been taking the Amitryptyiline?
Sue
susan39248 Metta
Posted
Best wishes
Sue
sarb73328 susan39248
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Thanks for your reply Susan. I have been using amitryptiline for about a year because of the itch/buzz. There were no other symptoms back then. Now I have fusing and a lump so went back to her and insisted on seeing Gynae who is cancer specialist back in June. He confirmed gps view that it looks like LS and if it becomes 'bothersome' I should come back. He said the lump was a cyst. I saw my GP again in August and she just said this was something that she should review each year - still no mention of treatment. I am about to make another appt with her. I am 64 and the itching started 4years ago after a loop procedure on my cervix. Don't know if that triggered it. I would like to find a specialist.
claire12259 sarb73328
Posted
Could you have Vulodynia? That can give you strange sensations!
XX
sarb73328 claire12259
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A good suggestion, Claire but Don't think it's vulvadyna as GP and Gynae have said indications are LS
michelle1626 sarb73328
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Metta michelle1626
Posted
Yes, I know! It's so weird. You wouldn't think something like this could happen! I mean, where is all that skin going, anyway?
Before I was diagnosed I thought I noticed a part of my labia "fused" to another part, but then I thought I must be crazy. How could that happen? All kinds of thoughts went through my mind, such as "Could it be flesh-eating disease?" Then I plummeted right into denial, and didn't look down there for a while. The next time I looked down, the fused part I "thought" I saw the time before wasn't there anymore. So I just told myself everything was obviously OK and not to worry about what I had seen before. (Denial.) I wish I had known about LS at that point in time, because then I would have run to my doctor immediately for a diagnosis or at least a referral. Instead, I was in denial that anything like that could actually happen and let it go for a while. Now, I think I'm going to lose all of my labia and my clitoris. Had I been diagnosed when it was just starting to fuse, I think the Clob might have actually had a chance of stopping the progression.
Sigh.
renee23201 Metta
Posted