I've been reading through this forum for a few weeks and have found it a huge source of comfort knowing that I am not alone in what I have been experiencing.
I'm 47 and have been experiencing the symptoms of LS for around 7 years, roughly since my third child was born. I was given a biopsy 3 years ago and at that time my gynae told me it was possible I had LS and gave me a badly reprinted A4 photocopy with basic advice and a presecription for Dermovate, which I have used (badly I think) over the last 2-3 years. I was told at the time that I showed signs of some 'loss of architecture', but he didn't really explain what he meant by that and I worried that I'd caused this by my persistant itching. I think the small area of whiteness I have is from an episiotomy I had during childbirth. I have pain and tearing and like others I really miss the intimacy I had with my husband. He has been wonderful but our sex life is really almost non-existant (as parts of my body literally seem to disappear!).
In tandem with the itching in my genital area I itch all over. I have no signs of any rashes or spots anywhere but am taking a daily pill for Fexofenadine (antihystmine) to reduce the itching. At the same time as this itching I had a small area of excema break out on my face, and then Rosacea and/or adult acne all over my nose! Life can be very cruel.
I tried everything and eventually discovered that the only treatment which helped the skin problems on my face was antibiotics (Lymcyline). I hated being on these (2 years!) but they worked. Every time I come off the antibiotics my face flares up again. I worry that some of my symptoms might be side effects of one or other of these medications but have no evidence to prove this. In some ways the LS (if this is what I have) improved a little when I was on the antibiotics.
My skin has always been so good that I've found these changes incredibly hard to take and find it hard sometimes to stay positive.
I'd be interested to know if anyone else has experienced similar itchiness and skin problems simultaneously with the onset of LS?
I've been reading about the use of Potassium Borate on this forum and of Bicarb of Soda and am trying the latter. I've also ordered some Emuaid cream. For those based in the UK, can you let me know if you have found a source of the Potassium Borate? It sees to be banned in the UK which makes me very wary about using it. (you should have heard the chemist when I naively explained that I was looking for Borax for treatment of LS....!).
Thank you.
Jeanie
Hi Jeanie,
I am 67 and have had LS and LP for about 5 years. My genital area is pretty much non existent now I have scarring and white patches. I use dermovate (twice a week to keep it under control) in that area but my main problem is my body itching especially at night. I have Lichen Planus spots on my body particularly where skin meets skin I.e. Under my breasts, upper inner arm and upper inner thighs. These patches burn and itch and drive me crazy. I take an antihistamine tablet at night which helps a bit with the itching. Stress definitely makes things worse. The most disheartening thing for me is my GP is not interested as far as he is concerned there is no cure I am giving everything to contain it i.e. Dermovate, Vagifem and emolument creams and that's it! He never looks at that area and I feel so frustrated.
I too have found this column to be hugely helpful. I wondered if the body itching you have is Lichen Planus. Mine is barely able to be seen by the naked eye but I can see the faint lines because I can feel exactly where these areas are.
I have been on this forum for a while now people are giving false information ive had LS about 5 years now the only thing im using is Demovate as there is nothing at all that helps please be careful if your trying these things people are posting also i have had a message of some one who says she has a cure and you have to buy this from her in my experiance there is no cure.Escenti
Thank you so much for your reply. I am very wary about trying less orthodox 'cures' and can see how it would be very easy to be lured by false promises, just because sometimes we feel a little desperate.
I've been struck by how many women are experiencing very similar symptoms to me and yet when I talk to my doctor I feel like I'm completely alone with this, and I can't really talk it over with friends or family. It just all feels too intimate. (It's taken me a long time to have the courage to join this forum but it feels good to be sharing these things too).
Thank you.
Dear Mary
Thank you so much for your reply. I'm sorry to hear that you've had such a bad experience, although it sounds so similar. I've never seen the same Gynae twice and always (except once) they were men. I have no issue with this in principal but I can't help feeling a woman might have been a bit more sympathetic. My GP was very good but she's been on sabatical for over a year. I think the lack of continuity in care and treatment has really been difficult.
Thank you for your suggestion about Lichen Planus. I had very similar issues as you describe under my breasts, and saw a specialist dermatologist some years back. He took 2 biopsies and told be it was likely to be a fungal infection but perhaps it is all connected.
I take the antihistamine in the day - first thing. I wake up crazy itchy all over but the antihistamine only lasts me 12 hours and I can cope at night, usually.
I am working full time, running a business and trying to cope with running a household with three children so life is stressful and there is never enough time to really spend sorting myself out. I think I need to try and find a way though. This forum is giving me more confidence to go back to the GP and try not to give up on accepting things can't be any better than they are.
Thank you.
Like many people on this forum I was initially treated for thrush for about two years, I thought I was allergic to toilet paper, it was a nightmare. I was finally referred to a consultant Gyni who did a biopsy which confirmed LS. He sent me away with a tube of dermovate and no interest in a follow up. We moved area and my new GP organised for me to see a consultant dermatologist, she was fantastic. She was horrified at seeing my genital area with such poor lack of care from the GP. She wrote to my GP with a list of instructions and said she would be happy to see me if I was concerned. A year later I went back to my GP after having a bad attack and wanting reassurance I asked to be referred to her again. I was told that Southampton Hospital now referred these cases out to Winchester Hospital. I waited weeks for my appointment and it was like going back to the beginning. The doctor at Winchester who examined me said 'she had seen much worse cases' and the loss of my genitals was normal in women as we get older. I have now moved area again and come under Poole/Bournemouth NHS. You are quite right I need to find my own Consultant dermatologist who specialises in LS and get my new GP to refer me. If anyone on this forum is local to me and can recommend someone I would be very grateful.
Hi Jeanie,
Just to be clear, it's sodium borate, (or sodium tetraborate, or disodium tetraborate) not potassium borate.
It's wise to be skeptical, and when I first heard about it, I went on-line to do a little research. I recommend you do your own search, as there is a wealth of info available about the many uses of sodium borate. Many, many women on this site have found excellent results (not just one misguided soul trying you to sell you something.) While you're at it, look up the side effects of topical steroids.
The only way to find out if it works for you is to try it for yourself.
Jeanie, I sent you a private message.
I have not personally read any posts claiming a cure but have seen many in remission. I have had this for more than 20 yrs and now at. 53 am having flares. I am managing them with clobetasol, emu oil, a wash down with baking soda and water in a squirt bottle after using the toilet and daily use of estrogen oil on the labia and progesterone cream on my thigh/abdomen. I was in remission for many years after having my children and did not need anything but jojoba oil to keep it moisturized before this recent return but I believe my hormones are causing much of this as my body prepared for premenopause. I still get my monthly period like clock work but they are getting shorter in length. I also use an essential oil blend diluted if the itch gets to the point where the cooling helps...usually right at ovulation time. Keep a daily record, it helps
Hi Anna
Thank you so much for correcting my mistake. Ironically I knew it was sodium borate (NOT potassium borate). and have been looking into the properties quite extensively but this was just terrible carelessness on my part. I've tried to edit the original text to avoid anyone else making the same mistake but it doesn't seem to be possible.
I take on your caution too about the side effects of topical steriods (I have been worried. about this for some time) which is in part why I am keen to find alternatives if they are safe and effective.
I've very much appreciated the honesty and help I've found on this forum.
Thank you for taking the time to reply.
PLEASE NOTE : Reference to Potassium Borate in my message above was an error. It should have stated Sodium Borate.(or sodium tetraborate, or disodium tetraborate)
Hi Jeanie,
You are very welcome! If other people had not contributed to this forum and shared their remedies, I would still be deteriorating instead of improving. What a blessing that women from around the world can reach out and help each other like this. As has been mentioned before, many doctors are not well-versed in this condition, and so many of us will go back to our next appointment with our success stories that will hopefully enlighten them about all the treatment options for their next patient.
I have been referred to dermatology in Dorchester where a dr Koch (she is German) has a special interest in LS. However the appointment took months to come through and its been cancelled twice at short notice.
i actually wanted to try low dose natroxone and was hoping she would agree to prescribe. However, in the meantime, i am having some success with borax and emu oil and i bought the ldn via a private prescription, only to fibd after 3 weeks it makes me really really dizzy..
i have previously been to Poole where they confirmed Ls without a biopsy and confirmed the architecture had changed, but beyond steroid cream, were at a loss. They drew me a picture of what was missing, but all my questions were met with embarrased silence.
Just because your local area is poole bournemouth it doesnt mean you cant go out of area if there is a particular specialist you want to see. I was referred to plymouth when i asked. Though i have yo get myself there and back.
xx.
Dear Nelsmydog
thank you so much for your response. I will make an appointment with my GP and ask for a referral. There is nothing more frustrating than having to talk to doctors who know less than you about the condition. Than you again.
Good luck with it, i will report back if i actually do get to see her.....
xx
estrogen oil? Not heard of that one.... Is easily available? Off to try and find some online.... Xx
Hi MaryMostyn
Sorry to hear this I know just how you feel... I'm 58 and have LP.. do you have the oral LP too... I think sugar is a big contributor.. I find now I have to avoid certain alcoholic drinks... I love baileys but I itch like mad it is far to rich also spicy foods should be avoided.. all these things set off the itching..not forgetting stress!!! I had trouble years ago after an abnormal smear test had colposcopy and was diagnosed then with the oral LP although had no symptoms then just the last few years!!!! Have you ever had trouble with your smears...I think definitely there connected.
That's a bit sad if you cnnot find anything that helps. What have you tried apart from the Dermovate?
I tried to reply to you with the estrogen I use but. The moderator deleted my response. I put product info but I guess that is against the rules. I am switching to a private Facebook group. I am trying to help but get blocked? It not my product that I am selling its just one I purchase online for the last 10 yrs
Hi Mary
Have you ever had a problem with abnormal cells after a cervical smear x