can anyone explain to me why my GP has told me she suspects I have LS and gynacologist confirms I have fusing which I can see, but neither of them have suggested starting any steroid treatment. I have had itching/'buzzing' for 4 years. I also found a lump which they both say is a 'skin tag' from the fusion. I am not happy with their casual approach. The gynae said and I quote "if it becomes bothersome, come back and see us". The GP says it needs to be checked every year.
I am 64 and live in the UK. Is this a USA forum?
OMG you need to get another Gyn....quick!! You need to be on Clobetasol (steriod cream) and use a solution of Borax and water, spray bottle works great...see threads on this. It really is magical in how it heals and unfuses, but in my opinion you need both. But you have to try different things as listed on this forum and see what works best for you. It is a lifelong journey of managing LS, don't think it ever goes entirely away. Good luck to you and let us know how you get on. (p.s. I am 74 and live in USA)
See another doctor immediately Sarb. You should look after LS sooner than later. On this site start reading the discussion on "An Experiment with Borax". It helped many.
I would try to see a different doctor. I was diagnosed with LS a couple of months ago. I saw a male doctor, he Diagnosed me straight away. He put me on a strong steroid cream which I have to use for four months. It's a lot more comfortable now, but I am getting used to having this horrible condition. I hope you can get the treatment you need. Good Luck x
Diagnosed recently by GYN, after I looked at myself and googled til I found LS described. I'm using steroid, but only once or twice. I found V-Magic cream (which is actually an ointment). Very soothing!
I have used Australian Dream cream for 3 years now, on arthritis and carpel tunnel, (I'm 69) and have found it very effective. So I decided to try in on my LS. Wow! Works great! The secret with Australian Dream, is that you have to use it consistently for a couple of weeks before you will feel the difference. It burns a little when you first start using it.
I really feel for those who suffer much worse than I have with this LS. I know it effects some worse than others. It is very hot and humid where I live (in East Texas, US). I love gardening, but it is hard to get outside in the summer, with my LS. The heat seems to flare it worse.
Hi
This forum covers both. I'm in the UK also.
Your gynaecologist has a very blaze approach. Mind you mine, a man incidentally, basically said go have sex regularly cos if you don't use it, you lose it. To some extent he's right. Unfortunately, if you are single it's not that easy. Mine put me on steroids cream immediately and recommended me to a specialist in cancer of the vulva. Unfortunately as I'm sure you are aware the NHS isn't very reliable I was supposed to see her every 3momths and they forgot and then cancelled 2 appointments, so haven't seen her for 18 months. Did get recommended to go to a physiotherapist and was given a preset for varying size dilatory. As you obviously haven't seen anyone you can buy them but they are quite pricey. You might as well buy some varying size vibrators as you can use them to stretch yourself if like me your vaginal entrance is closing down. Have had this condition for years without realising it and gyni says have to increase steroid use to every day. Have also after reading this forum been using bicarbonate of soda solutions and soaking the whole area. Some say it can unfuse the area. Personally I cannot see how once it's fused and scarred over how on earth it can break down scar tissue. It may help prevent further fusion. I have literally lost my clitoris and tear quite regularly on going to the toilet. Am due to go back in Nov but don't expect miracles in the meantime. They say I would definitely be a candidate for an op after they try alternative men's but don't know what they are going to be.
ps. I live in the Gloucester area.
Please go back to your gyni and say how unhappy you are. Sadly, there is no cure for this. I feel really annoyed that there is absolutely no education in the UK about this horrible condition.
OMGoodness Sarb your GP and Gynae are so off the LS plane they need reporting !!!
LS is 'bothersome' at all levels !
You need go back to your doctor and insist on urgent referral to a Lichen specialist in your area.
Lichen whilst it can be a fiesty, tricky, unpredictable, itchy, painful, flaming hot fusing and sadly a massive birth control !!! disease.
It has to be managed and not left to run amok to do irreversible damage
Sarb I am 67 live in Leamington and was diagnosed 16 years ago with LS, enjoying several years in remission.
Now it is back with a vengeance . Think it looks like this 👹
Thankfully I have brilliant specialist who confirms as there is no research going on we can only trial and error products that help manage the Ugly beast
There is obviously a hard core of products that have proved beneficial but by going to see a properly informed specialist that is your starting point.
Sarb I send lots of healthy wishes you find your professional support
In meantime be kind to yourself and don't stress or eat sugar Heat in the body is not good.
Domino, it takes a while before you see results. I had to be very diligent using first baking soda and later borax. Plus changes in diet (sugar and cheese being a sure trigger for me) And using a dilator regularly.
But after four years of deterimination I am now fully functional again. (I'm 67)
I thank you. You described LS so very well. I wrote some of your lines down in my notebook about LS.
Hi Domino. Just be patient but very diligent. Ive been doing just the borax soaks everyday now for about 2 weeks. I have already noticed from my before and after pics that I am unfusing on the right side rather well, left is a little slower but I see changes. As far as my clitoris (its playing hide and seek)I'm feeling a difference but not seeing it as of yet. My Dr here said I had one of the worst cases of fusing he had seen and I know he is going to be amazed as much as me at my next appointment. LS is a horrible thing to live and deal with but with patience its possible to feel normal again. I'm back to having sex again weekly as opposed to twice a year. Wishing you good luck!
Sheila
Hi I'm in the U.K. And did you tell them you were itching so much ? My gynecologist sent me to a dermatologist and she's proscribed steroid cream you bewd to go back and ask for something
Join the FB GROUP lichen Sclerosis support group that has a post it for their icon "YOU ARE NOT ALONE". There are women ftom all over the world and we converse often in real time. You need all respurces out there
Thank you jeri - I will make more fuss with my GP and see if there is a LS specialist she can refer me to. I will also look into this Borax treatment, everyone on here seems to be recommending it.
Thanks Hanny, will definitely read the discussion on Borax as everyone seems to be recommending it on this forum. Although it does seem rather drastic to use a bleach solution. I cant help but think my GP thinks I am acting hysterically about this, but it is a horrifying condition and I think she should be more pro-active and sympathetic. I will revisit her before trying to find another doctor.
thank you Rosie, I hope to have a rosier view on this in time! All these bits of info are really helping me as I have felt very alone and frightened with this . I will look up Australian dream cream.
Thanks, Domino - I am married and sex is still ok at the moment, but my self image isn't. I feel ugly with this deformity. I am going to go back to my GP and ask more questions and hopefully demand steroid cream as surely that must arrest any further fusing for a while anyway? I will also look into this Borax and baking soda solution. I too am annoyed that there is little info on this - the best sites I have found have been Australian and NZ ones.
Sedg, You are so right, 'bothersome' is an understatement. This is a frightening ugly beast and bothersome suggests a mild problem. I will ask to see a specialist in LS and see where that gets me. I still can't understand why they are not giving me steroid cream yet. Were you diagnosed by a biopsy?
Thanks Gillian. Yes I have told them about the itch for all these years. I have amytriptiline to try to 'tune out the message' and it helps a little. I also use oestrogen cream and wash with epaderm ointment. Those advisories were given to me by my GP some time ago.
Hya
The Vulva Specialist my hat I see recommended me to use a product called Sylk rather than KY gel before intercourse and it made things a lot easier. You can get it on eBay often cheaper than getting a prescription.
Am tring the bicarbonate wash and see how that goes as well as the dermovate. Am intrigued to see what the specialist suggests in November when I see her.
Best wishes.
I was diagnosed by biopsy 16 years ago after much 'blah blah blah' by ill informed medics who at the time I remember them making me feel about five years old with a minor dismissive ailment !!!
not any more. We know our bodies and we know what having this condition means when you first hear the words No cure Can only be managed it is shocking.
Even all those years ago, and I have to say many of them were in remission. Treatment from GPs and 'specialists' hasn't changed at all.
It is the Women who have LS who do the trials and errors bless us all
Mind you I have to say taking a 'selfie' of my ailing vulva has reached a whole new level of knowledge 😳🤣
Today is a good day as yesterday I was advised to change from Dermovate to Betnovate to use on the firey furnace known as my Vagina 🔥 O M G it was immediate relief so long may it continue
L♥️VE