VA /LS Symptoms !!!
Posted , 5 users are following.
Hi, for all us ladies that maybe experiencing the terrible pain and discomfort of Vaginal Atropy or Lichen Sclerosus, even both, I think it's vital that we all keep sharing our tips and experiences in trying to manage these horrible conditions. I'm not suggesting ditch all prescribed meds prescribed from your GP , but just be mindful that some of the natural remedies, can aid our plight in some cases. For me personally, the Estriol cream for VA applied direct up inside the vag canal via applicator 2x weekly and extra virgin olive oil applied to whole of vulva/anal area a few times daily are really helping to keep me more comfortable than I was. The steroid Dermovate cream really stung my vulva area, and made me feel worse. I am not totally symptom free of the stinging/burning/bladder related heavyness etc, but I've only been doing this regime for a couple of months, so I suppose it's early days yet....at least that'swhat I'vebeen told and everyone needs to find what does, or doesn't work for them. I was worried about using the topical estrogen cream initially, so I did stop after a couple of weeks but my Gynae consultant said the vaginal canal etc, definitely would not repair itself without it, so I have resumed using it with plenty of reassurances, as the lack of estrogen i is the catalyst to these conditions apparently. I do have a family history of breast cancer so that was my major concern. Anyway, let's keep sharing any helpful knowledge that we have, it just might benfit another poor soul with any of these debilitating conditions. We all pray and need a cure to be found sooner rather than later and better recognition /training from our healthcare providers so symptoms/ treatments can be identified much sooner. This journey can feel very lonely....we need to offer support to one another !!!..keep the faith ladies, forever hopeful in finding a cure for us all. !!! xx
0 likes, 13 replies
vickie00010 moira14061
Posted
*Thanks so much for sharing YOUR experience....2 things for SURE - 1 is LS is a lousy thing to happen to us and number 2 is each persons experiences and remedies r different....that is why finding the right doctor (no matter where u live is the KEY)...*I do not think much research is none in this area because ONLY if it is worth it for the drug companies to make money (meaning there r not enough people with LS for it to be profitable for them to want to find a CURE and put money in THEIR pockets)....what is GREAT is that we all share information and this is where we find suggestions that maybe we have never heard of and can help us...my doctor who has been a specialist in LS for over 25 years put me on a low dose of Estrace -vaginally 5 days a week and by inserting vaginally 2 times a week - for the Atropy - and Clobestasol - for my LS - and this has worked quite well...I use organic coconut oil when I am feeling dry - in regard to baths (of any kind) my doctor said this can dry me out even more as warm/hot water can do so...yet, I have heard from all u guys that bathing in certain situations has helped u....SO - we need to experiment and listen to those we believe (our doctors) and keep on sharing and trying different things...to see what works BEST for each one of us...many SWEAR that our diets need to be clean (and I for one totally agree with that)...because when your body IS compromised it takes longer to heal...SO good luck to all of us and always share what u think helps "the situation"....because somewhere out there might actually come a CURE from one of us....(ya never know)...
moira14061 vickie00010
Posted
Hi Vickie, so, today's update i have just returned home from my gynae appt with my consultant for the VA & LS. He told me it's vital to continue for several more months with the clob nightly to alleviate any cancer cels developing in the future, l with a view to reducing it, not sure if he meant strength or less weekly applications ! Also, I will have to continue with the 2x 5ml weekly applications of estriol cream up into the vag canal for the rest of my life, to replace the estrogen .!!! In addition, I will need a Eurodynamics test( where bladder is filled with water to test pressure) scheduled for approx a months time relation to possibly having an OAB.....not looking forward to it though. Everything takes so damn long to get sorted out.
Having said that, I realise I'm not the only person waiting for procedures etc. Regarding using the evoo, he said not to use it, not necessary...no explanation as to "why not"other than it wasn't needed, but tbh, I personally feel that my lady bits have benefitted from using it daily in conjunction with above meds , and feel everything in general does look, and feel better in colour and texture so the jury's out on that one for me, I don't see what the issue is !!!. I think they are very text book and matter of fact with their theories sometimes, and not always right on some issues even though we have to put our faith in them..... don't we !. Anyway I'll carry on and see how things pan out for me......Hope your managing your symptoms with success.
vickie00010 moira14061
Posted
we ALL take it Day by Day and when something "changes" and our bodies "talk to us" - we must listen....does sound like u r on the right track....wishing u the best..I am following the same "routine" and it appears to be working very well..
Cmcm1987 moira14061
Posted
I just wanted to share what my progress has been while getting the Mona Lisa procedure. I will be getting my 4th treatment in a few weeks and this is my result so far.
i have absolutely no pain or itching between treatments except for the first week following the treatment while i am healing. i am not using clobesterol any more and frankly i forget that i have LS now. it has been truly amazing. i am 68 years old and someone on this site mentioned that their doctor said the Mona Lisa procedure was not appropropriate for older women but my urolologist said it is very appropriate. i only use coconut oil and no hormonal creams and now i rarely need the coconut oil. My next treatment may be my last and then just yearly checks with a possible touch up. I'll update in a few months but all i can post for now is that this is a miracle!
beverly52803 moira14061
Posted
Have you tried using a mid strength steroid like Triamcinolone? You might tolerate it better than the stronger one.
I think of LS like psoriasis which is certainly a more prevalent AI skin disease. There seems to be a new medication advertised every week for it, but none of them are curing it, just controlling it. To cure an AI disease I think you would have to find the cause and somehow affect that.
I am now using Tacrolimus which was prescribed by a dermatologist. Not sure if it's doing anything other than causing a bit more discomfort. Am now using it far less often than prescribed (along with steroid and hormone).
Like you I was diagnosed with atrophy before LS, but I wonder if the atrophy was actually early stages of LS. I was also concerned about hormones because of BC in the family. Just wish a doctor had taken the time to explain it more clearly as well the specific chance of LS developing instead of vague warnings of "possible problems". I'm use the hormone cream twice a week now. Had been using it every night.
What interests me the most now is either laser treatment or Platelet Rich Plasma injections (or possibly both). However, finding doctors that are treating LS patients with either is nearly impossible. There is also LDN which is used for pain, MS and addiction withdrawal. I presume it would work better for someone with extreme LS discomfort. Again, good luck finding a dr who has even heard of it being used for LS.
Cmcm1987 beverly52803
Posted
Hi
i used Clobesterol after diagnosis. it burned and my doctor said long term use of steroids actually thins the tissue more. If you can find a doctor to use a laser as I did then you may want to try it. i am having amazing results with my treatments.... no itching or pain and i am not using the steroid cream. i should have possibly my last treatment in a few weeks. the treatments are uncomfortable for a couple days after and then i feel good. there is breast cancer in my family so i am not going to use any estrogen ever. i think these laser treatments will become the gold standard of treating LS in the future.
good luck!
moira14061 beverly52803
Posted
Hi Beverly , I have heard about the Mona Lisa type laser treatment if that's what you are referring to, however, I'm going to carry on with what I'm doing.....at least for now to see if things hopefully improve longterm. I'm somewhat confused with it all tbh, as I can't see any of the classic white patches anywhere that ate usually associated with LS and I don't have ulcers, sores or any lacerations other than redness/ inflamation type appearance to one side of the labia area, which admittedly has receeded at one side, combined with a stinging burning sensation, especially after urinating so I'm at a complete loss as to what the LS diagnosis was based on during my examination. When I attend my next appt, I am definitely going to make more enquiries regarding the diagnosis and perhaps a second opinion. Hope you are managing the condition as best you can. x
beverly52803 Cmcm1987
Posted
The gyn I last saw did not recommend my getting laser treatment. She was closely following a dr who was working with the laser and there were some problems due to thinning menopausal skin. As she had just diagnosed me with LS I became more concerned about that than the previously diagnosed AV.
However it's been a year and a half and I am very interested in optional treatments for the LS/AV. That gyn has been unavailable since May so I haven't been able to discuss options with her. She has resurfaced at a different facility, but I can't see her till next May. Just finding a doc familiar with LS is difficult enough!
I like the idea of PRP shots because I don't see a downside whereas there can be with the laser. But having used the hormone cream for over a year perhaps the skin is healthier and more able to withstand the burning so I'm not ruling it out. However, finding a reputable MD who gives PRP injections is next to impossible.
I don't have itch or pain, just a mild discomfort and changes in labia minora. I started off using a mid-level steroid but had to move on to clob.
I am interested in treatments that would help to rejuvenate the skin before I develop any worse issues. I am using a mix of hormone cream, an immuno-suppressant ointment and a steroid every night and would very much like to be using less but despite searching for 6 months I haven't come up with anyone re the shots.
beverly52803 moira14061
Posted
I felt the same way when I was diagnosed, but once home I was able to see small very faint white lines inside the buttocks, but nothing else. Surely NOTHING like the pictures the gyn showed me! After using the hormone cream and the mid strength steroid for a short time I was told I was responding very well. (I could no longer see the faint lines). However I eventually developed a buzzing feeling so used the steroid continually. Was then told the LS had spread. After getting a magnifying mirror and enough light I was able to see a tiny bit of white on the clitoris, but no patches, sores, no reaction to urine. Apparently, I have the stealth variety.
When I was first diagnosed the gyn exam took so long I could not imagination what she was looking at, but she was quite definite re diagnosing it as LS. She specialized in vulval skin issues which I was not aware of when I made the appointment. Some women feel better about having a biopsy but I feel no need. Though my symptoms are mild I do have them. If anything I think doctors fail to recognize LS rather than misdiagnose it.
I'm just trying to find something that might help my immune system function properly (hence the Tacrolimus). I did have a thyroid antibody test which was negative so I could at least eliminate that. I'm taking a LOT of supplements but have noticed no difference. I really can't complain much as I know how uncomfortable some are with LS. I would just like to be proactive so it does not progress.
moira14061 beverly52803
Posted
I didn't realise that their was any kind of variety, let alone a "stealth" variety, the mind boggles !!!. I do have a underactive thyriod condition, so maybe that is condusive in all this,,,,who knows. It's very difficult trying to self examine, you need to be a contortionist and almost double jointed in my experience...lol. Other than that, I may need to go to specsavers !!!. Well you've got to light hearted about it all sometimes or you'd drive yourself insane with all the worry and uncertainty wouldn't you. x
beverly52803 moira14061
Posted
According to what I have read and what the gyn told me about some of her patients there are women who have severe cases of LS but were not aware of it until examined and diagnosed. Seems difficult to believe as it is a sensitive area. Mine is not a severe case and I feel only mild discomfort and, for whatever reason, no itch and no flares. However, the fact that it progressed despite my using the hormone cream and the steroid is very unsettling. Am hoping that my now using the stronger steroid and the Tacrolimus will halt any further progress, but it's difficult to be overly optimistic.
I agree about the impossibility of self exams. I saw nothing after being told it had spread until I was in a bathroom with a skylight as well as much artificial light and used a magnifying glass.
vickie00010 moira14061
Posted
and this is WHY everyone is different....I have a friend who tried to Mona Lisa laser and after 3 treatments said there was no change for HER (she spent over $2500. out of pocket - but IF it worked she would have been very happy to get off of medications)......she went back on a steroid and found relief....this is why we all need to find that works for us...I certainly do not want to be on "anything" for the rest of my life BUT if i must - for LS - then I will...I spoke with my doctor and he said the 2 med's I was on were doing a great job and actually now is only seeing me once a year and cut my med's back...since using Estrace and Clobestasol my symptoms r gone and I feel good....so lets all help one another and research what works best for us...
moira14061 vickie00010
Posted
Yes I totally agree Vickie, it's all about finding what works for us as individuals. x