proper diagnosis and treatment?
Posted , 12 users are following.
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?
0 likes, 42 replies
plainchocolate sarb73328
Posted
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
RosieView sarb73328
Posted
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.
sarb73328 RosieView
Posted
domino58 sarb73328
Posted
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.
hanny32508 domino58
Posted
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)
sheila02965 domino58
Posted
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
sarb73328 domino58
Posted
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.
domino58 sarb73328
Posted
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.
RosieView sarb73328
Posted
Can you share those Australian and NZ sites.
LS is just a terrible condition all around. Because it involves "private parts" one really is embarrassed, and cannot tell people about it (except here on this forum and others like it). Only my husband and my best friend know what I'm dealing with. It disrupts the normal physical closeness of marriage. We gave up sex three years ago, because it just hurt too much. Now folks here and on other "naturalistic" sites, are saying I should give up my dark chocolate and the cheeses I enjoy. Also my pets (2 cats and 2 dogs). Grief!! Is it going to leave ANYTHING to enjoy?!@@#$$
anne07585 domino58
Posted
Hi Domino's,
I am in the Gloucester area also. I was misdiagnosed by my GP for 18 months. I asked for a referral to gyno. It was a locum lady gyno who as seen as she looked at me said it was LS. I had never heard of it. Was in tears because I had a diagnosis. She put me on dermovate ointment. Immediate relief from burning, stinging, pain and itching. She sent me for blood tests, and had folic acid deficiency. Had a follow up appointment three months later. It was a man gyno, another locum. Just told me to carry on with dermovate without even examining me. Told me all the worst things and operations he had done. Scared the hell out of me. Had another follow up in February and he did a biopsy then discharged me to follow up with my GP. Had the results which said Lichen planus, but had done biopsy when I was still on Betnovate. I went to my doc, she said she did not know much about LS as it was not presented often enough. I asked for referral to dermotologist, I have been waiting 3 months, got the appointment for 23rd. My clitoris, labia minor have disappeared and fusing is getting worse, plus vagina seems to be almost closed. I have had to do it alone apart from help from this forum. Have daily bath with bicarb of soda & use spray bottle after wee and use coconut all. I no longer have any discomfort but it sure does not look good. The ladybits are disappearing. The NHS is useless, no support, no compassion, just get on with it. I had hysterectomy in 1993, that did not make me feel like I was no longer a woman. But this LS sure does. I am scared of what it will be like in the future! I have a partner but he accepts that sex is a no no. He is getting on in years and suffers heart problems & high BP, he would be scared to have sex now anyway. I can't believe how these so called professionals have no time to even do a bit of research to help in anyway. Just tough, get on with it.
Hope the bicarbonate wash and dermovate are helping a little.
Best Wishes.
domino58 anne07585
Posted
As you are in my area. Go back to your doc and ask if you can be referred to Miss Hillaby. She is the one who specialises in cancer of the vulva and holds clinics in Gloucester and Cheltenham. She is far more compassionate. Fingers crossed that you can get a referral.
anne07585 domino58
Posted
Hi domino58
Thanks for that. I will keep my appointment with dermatologist on 23rd. But I will get my doc to refer me to Miss Hillaby. It seems that's the way to go! Dermatologist is male that I am seeing on 23rd, I prefer a woman.
Many thanks, it is great that you are around this way & know a specialist who is more compassionate. You take care of yourself, Anne.
hanny32508 anne07585
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sarb73328 RosieView
Posted
I agree, it is a difficult condition to discuss, so embarrassing especially when you are older like me. I was far more blase about that area of my anatomy when I was having babies!
I dont think we can post websites on here but try 'dermnet new zealand' and mydr and caredownthere (Australian sites).
Wlparadise RosieView
Posted
I have 2 dogs and eat dark chocolate, drink wine,and provolone and bleu cheese often. I don't eat red meat, almost no grain products.. Everyone is different. No one size fits all. I do not use steroids. I am married to a MD. He stays on top of everything.