Lichen Sclerosus Treatment in Essex UK
Posted , 9 users are following.
Hi
I was diagnosed with LS at 37yrs and had been treated for thrush for about 8 years previously. Lots of discomfort and fobbed off by doctors. However I now see a really nice consultant gynaecologist in Colchester General Hospital who is very helpful there is also a vulva nurse who specialises there too. I find steroids useful. Also keeping your stress levels low is a good thing. I use oilatum in the bath. Have suffered fusing which is horrible and have managed to separate it myself twice now (very painful but easier while soaking in bath).
I have felt very alone with this nasty condition and quite hopeless but have now been told it's not as rare as they thought it's just that GPs don't recognise it. I now have a nurse who understands it at my GP surgery! Hooray.
Does anyone see a dermatologist and is this better than seeing the gynaecologist?
0 likes, 11 replies
j02359 Snuggle_Bun
Posted
I also see a gynaecologist who has a special interest in vulval disease. I think that's more important than whether we see a dermatologist or a gynaecologist - see someone who specialises in LS, regardless of which discipline, IMO. Every best wish.
susan39248 Snuggle_Bun
Posted
maggie81413 Snuggle_Bun
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Yes I agree with the above replies. I initially saw a Dermatology Consultant at the Vulval Clinic, but my GP's seem to know little about it, and disagreed with my LS self-discipline, but did refer me to the aforementioned. At my second hospital Vulval Clinic appointment, I was referred to a gynaecologist who specialises in surgical treatment for LS fusion, to discuss my tight perineum/fourchette bridge area. My LS is fine, but left with this tightness, even though I'm now using olive oil regularly, and it has improved, but want to discuss my options x
maggie81413
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maggie81413
Posted
cynthia40883 maggie81413
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maggie81413 cynthia40883
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Hi Cynthia, yes I live in Cornwall. I'm surprised you don't know of any, because our hospital is always struggling more than most financially. I have discussed the procedure called Double Z-Plasty with VY advancement with my lady Consultant in Dermatology (Vulval Clinic), and she's referred me to another lady gynaecology consultant to discuss possible surgery. I believe this procedure was developed by a male gynaecologist in Plymouth, Devon, because I looked it up. Apparently it's more successful than the Fenton Procedure, that's been used up till now x
domino58 maggie81413
Posted
Am in Gloucester and am 59 and see a team which consist of Gyni, Vulva Specialist, Dermatologists. Have as most of us had this condition for a long time before finding out about it. I think it’s an absolute disgrace that there is no education about this disease. Mind you who would want to stand up in public and say their vaginal opening had all but disappeared as have your labia and that sex is for many varying from uncomfortable to excruciating or downright impossible.
I asked my Vulva Consultant if I could have an operation to reopen my fusing which initially she said I would be a candidate for, however, at the next visit the LS has become active again. She says that she won’t recommend any operation whilst it is active. As this disease is incurable and can in some cases be kept at bay, she said these operations are rarely lasting as if the LS kicks in again you are back to square one.
I have been fortunate that I have not had the intense itching for a very long time. I still get what I call micro tearing when I pass stools. Have been using olive oil several times a day as well as the steroid ointment at night.
I know it’s not easy but I don’t want to have to give up on a sex life but my gyni recommended dilators. You can get these on the NHS as it is cheaper than buying elsewhere. If you are in the States you could look at buying varying size vibrators as they can do the same thing. I think that using the oil has helped me be able to stretch myself starting with the smaller dilator and have managed over time and use several time a week to using the largest.
maggie81413 domino58
Posted
Hi Domino, yes I get where you're coming from. I only had my LS about 4 months before my diagnosis, the length of time I had to wait for a hospital appt. Since managing it well with all my prescribed and non-prescribed treatments, the white skin disappeared a while back, and just left with tightness around the perineum etc. I feel so fortunate that up till now I've not had itching or burning at all. At my second hospital appt, 4 months after the first, the Dermatology Consultant who specialises in Vulval conditions, says my LS is well controlled and I'd be a good candidate for surgery. The problem I had was slight splitting at that area during intercourse one time. I haven't had sex for about a year, mentally I don't feel like trying yet because I don't have a regular partner, and the menopause/post-meno has hit me hard. Obviously the LS isn't the only thing going on at 58, atrophy etc plays a role. I'm using topical oestrogen but not on HRT. When I see the Gynae Consultant next month I'll be discussing all the pros and cons of surgery for me. I regularly use dildos as dilators, and a pelvic physio I saw said my pelvic floor is very strong, everything is functioning well, and surgery may be beneficial to lengthen my opening. But not rushing into surgery. Going to decide after I chat with the Gynae who specialises in this surgery.
Bridge_of_Sighs Snuggle_Bun
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Hi I'm in Bristol and have a GP who specialises in skin conditions. She says it's so common that she expects that she will get it herself one day. The worst thing is the isolation, since most people are told it's rare when they are diagnosed. I've given her the reference to this site and told her to pass it on to any patients. I was going to a specialist vulva clinic, but after seeing one fab woman doctor I've only seen two rather unpleasant male consultants in my yearly follow ups. and seem to have slipped off the register now (which is fine, my GP seems to know more than any of them and is nice too...
It's so unfair (wails) that we have this horrid condition and then have to deal with dismissive and ignorant medical practitioners too. Thank everything for this site!
Wee_Dugie Bridge_of_Sighs
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Hi BoS, I am a male with LS and I could not agree with you more with all the comments you make. It is a shame you could not continue to see the fab woman doctor at the specialist clinic. I know all too well that it is very hard to think astutely when we are dealing with medical professionals, particularly specialists, but obviously the ideal would have been to be referred back to the woman specialist you found so helpful.
Certainly, I would stay clear of the ignorant and dismissive specialists you have had contact with - it is a shame we cannot give anonymous constructive feedback on these sorts of medics so that they can get their act in order. Unfortunately, their attitude is often one of 'I have made it to be a specialist, I see no need to be empathetic and actually deal with what it is that patients need to get sorted out, or made better'.
The other condition I have is Chronic Fatigue Syndrome, there are no NHS specialists who purely deal with these kinds of conditions, the simple advice you get from everyone is you need to find what works for you, stay as active as possible, keep a positive frame of mind and get rest when you need it. Nothing about what foods to stay clear of, or how to determine the dietary supplements that would be essential to retain a reasonable level of functionality. We can only hope, one day, all medical professionals will see that the actually needs of each patient are addressed and dealt with.