Loss of architecture - despairing
Posted , 12 users are following.
Hello,
I haven't posted in a while because I had been doing well. After researching and trial and error, the only thing I was doing for my LS (diagnosed a year ago) was bathing in borax 2x a week. No white patches, fusing, itching or other symptoms -- I was thrilled that I found this solution.
About a month ago, I went away for a week and wasn't able to bathe in borax. When I came back, I looked in the mirror to find that my lady parts are disappearing, almost melting. There is still no fusion or anything else, but this feels like a kick in the gut. Clearly, this symptom of LS is not reversible...what's lost is lost. I am 51 and appreciate that many women have to deal with this problem at a younger age, so I'm grateful it didn't happen sooner. Basically, my vagina will never be the same. So while the bothersome symptoms aren't happening, I guess the borax isn't controlling the loss of architecture. (unless it all happened in that week I didn't bathe in borax but that sounds a little implausible).
I feel like I'm back to square one--and despairing the way I was when I was first diagnosed. I know there are some laser treatments and shots out there...are they worth looking into? Do they help this architecture problem?
Thanks for listening.
0 likes, 23 replies
jackie15098 msbutterfly
Posted
What about the itching, burning, bleeding and everything else that goes along with LS? Don't you use a cream or ointment called CLOB? Borax would never work for me.
msbutterfly jackie15098
Posted
i dont have any itching burning or bleeding...
beverly52803 msbutterfly
Posted
ms.b, my gyn told me when I was first diagnosed that borax and all the cream & lotions would do nothing but soothe. The only thing known to keep it under control is steroids. After reading so many personal stories here I am convinced she is correct. I do take boron as a supplement anyway. It's probably the least expensive of all that I am wasting money on.
If you read about other AI diseases the treatment is to use an immunosuppressant that interferes with the body's immune response which is in fact attacking the body as it can't tell the difference between your own cells and foreign cells. Now why that would be is the $64,000 question! (an old reference, I'm sure).
I did great for the 1st six months with the triamcinolone steroid and hormone cream...till I didn't... as the LS returned in the form of a buzzing sensation. I increased the steroid to daily (sometimes twice). By the time I got to see the doc I was told it had spread and I noticed the labia that had had a bit of white on the edge was gone. Am now on clob. We can get by with one, but the issue is what more will go missing, right?
I am now considering platelet rich plasma. I am tired of thinking about this problem and see nothing more I can do. All of our bodies are responding differently* to the disease* and less to what we are trying in our attempts to control it as far as I'm concerned. As the PRP involves using my own blood I feel it may be more effective and safer than steroids. At least it may buy me time free of so much concern re what is disappearing . Of course, finding a medical person the do it seems to be an impossibility. May resort to a spa run by an NP.
msbutterfly beverly52803
Posted
I don't know what to believe anymore. Not convinced that clob is the answer -- I have read some women say it's made the condition worse. It's so frustrating that this disease has no clear answers. Is platelet rich plasma the same thing as the O shot? there's also mona lisa....
I found a functional medicine dr who I'm going to call this week. I have another autoimmune disorder and I believe there's a bigger answer to all of this.
beverly52803 msbutterfly
Posted
Yes, it's the same as the O-shot but administered a little differently I believe if the "O" isn't you main concern. There is a Dr. Runels in Alabama who has been working on it and teaching other practitioners about it in the US. You can google it. The NP I have found claims to have gone to his seminar in Miami.
Some women have posted they wish they never got the ML as it made things worse so nothing is 100% guaranteed. The platelet method just seems safer to me than burning.
What I find bewildering is the gyn doctors seem so far behind the plastic surgeons and spa folks who have been using the lasers and the platelet methods for a while now,, first on faces now on vulvas. Maybe the codes are less stringent at spas. I can't even find a gyn to discuss it with!
martha91317 msbutterfly
Posted
I had been doing really well till about a month ago. Then i started with the
old symptoms. No itching just burnimg and discomfort. My dr
had me using clob and Estrace alternatnating nights. I believe the Estrace was irritating the area. I saw dr this past Thursday. She changed the Estrace to an insert medication. This disease is scaring me because of the increased cancer risks. My mind is working overtime.
Anyone else worried? I see dr every 6 months. Due to change in meds i will go back im a month
Martha
jackie15098 martha91317
Posted
It seems like all of us are struggling and we are all very concerned about this. Why can’t our professionals find a solution to this problem?
msbutterfly
Posted
Hi Martha,
Yes, I'm scared and angry about this. As a friend of mine said, if this was a man's disease, there would be a cure already! (no offense to men on this site; it does seem to affect mostly women)
jackie15098 msbutterfly
Posted
I agree!!!!
sharon84943 msbutterfly
Posted
You could ask your doctor to try some esterogen cream .
martha91317 sharon84943
Posted
I'm using estrace an estrogen cream. She has changed that to a new one. I'm hoping it will work better
msbutterfly sharon84943
Posted
hi sharon,
i actually have estrogen cream that i never used. a doctor i went to gave it to me, not for LS but for atrophy. i was afraid because its a hormone. could it help with the loss of architecture issues?
sue162 msbutterfly
Posted
i have the same msbutterfly. Post menopausal and darent use oestrogen cream. I was given vagifem to put up but I darent use it. This was for atrophy like you. My bits melted away about a year ago so quickly and I still am scared too but think other health problems properly take precident over this for me. I have the awful burning going on, comes out of the blue and ulceration at the fourchette area. This forum is good for hearing about everyones stories as it does help x
beverly52803 sue162
Posted
sue, if you research you will learn that the estrogen from using cream apparently doesn't show up in blood tests. It does if you take it orally. I also avoided using hormone cream after my AV diagnosis as I had a sister dying of breast cancer. Three years later I was diagnosed with LS. New doctor said mine was brought on by low estrogen. I now have to use both the hormone cream and the steroid. If you have LS everything I've read says the danger of developing cancer increases if you do NOT use a steroid to keep it in check.
There are different versions of estrogen. Estriol is said to be the mildest. Best to discuss it with your gyn and do some research online if you can. I feel as though I have gone from a not very serious problem (AV did not cause much discomfort at all) to a much more serious one with LS. Of course, I may have had the beginning of LS all along and it just wasn't diagnosed as I hadn't seen a skin specialist earlier.
It's confusing for all of us. Hope your other health issues improve.
sarb73328 sue162
Posted
Sue - i have been using oestrogen cream for 6 years now along with betnovate and I honestly believe it has helped keep everything supple and more plump. As Beverly says it is not like taking it by tablet.