MALE LS suferers requested

Hi can u tell me how the LS is after 3 years?

WeeDugie, bless you for continuing to contribute, and lets all share as much information as possible so we can all help each other. I'd like to say though, that for women, the diagnosis is a little different. We can't see our anatomy in the way that you can, and many of us have been misdiagnosed for years by doctors, so by the time we get a proper diagnosis we usually are quite far advanced, and in a bit of a state, emotionally and physically. Many women have probably been suffering for years. As a man, you won't have experienced how 'women's problems' are brushed off and generally taken less seriously. We have to fight much harder to be listened to, or to get a referral. Personally I was told I was a hypochondriac, until I moved house and got a new doctor who said 'Oh my god, how did you get into this state?' If you look at the new diagnosis threads you'll see how common stories like mine are. So are very brutal, and often not very well informed diagnoses where women are bluntly told that they're fairly advanced with a rare, incurable condition with a chance of developing cancer.

I, for one, have no problem answering the same questions over and over again. Please consider that people who come to this forum are in distress, and are reaching out for support, advice and a bit of care, just as much as they might be searching for answers. Women new to this forum may ask the same questions rather than reading the old threads because they feel isolated and also may want the personal response that they have been lacking from the medical professionals.

Let's support every new person, who comes on here, male or female. I remember the relief I felt when I could at last have conversations with fellow sufferers who understood what I was going through. And yes, I probably did ask the same old questions, and it was lovely to have others reach out to me - I sat at my keyboard sobbing to know that, at last, I wasn't alone. I don't want anyone to have to get as low as I did. We can all do a bit in making someone feel less isolated and to find that glimmer of hope when they are feeling devastated. So keep on sharing, keep on supporting and together we can all make a difference to as many people as possible.

I also want to add, that in no way am I commenting on a male only thread. I totally understand why you would want one. But do also feel free to join the women's discussions. The sheer volume of women on here means that so many different things get tried and posted, and we'd like everyone to benefit from that knowledge.

Best

Bridge

Hello Bridge, thank you for sharing your thoughts and feelings. When I reply to Women on this forum I try to remain as tactful, respectful and diplomatic as I can. The fear I have is that some Women may regard what I say as ‘why is this Man talking about my Lady parts in this manner!’ This may sometimes mean that I do not come across as empathetic as I would intend.

I have frequently used terminology such as ‘compared to the majority of Women, Men with LS get off very lightly’ - this not only refers to the practicalities, such as being visually aware of all the infected skin areas, but the huge, and real barriers the Medical Profession place in the way of acknowledging and correctly diagnosing the condition in the first place.

Then there is the issue of treatment. If a topical steroid is prescribed it seems to me that the majority of medical professionals don’t even bother to tell their patients how to correctly apply it, how frequently to apply it - and fundamentally, for Women, to detail to them where their infected skin areas actually are, and, how the individual suffer can, in practical terms, locate all these areas - and thus, put in place the much needed treatment that will help their skin to recover. I well remember a British TV documentary programme from some years ago in which it showed a ‘Women’s Movement’ inspired group of Ladies and it showed - discreetly I must add - women gathered in a circle using small hand mirrors so that they could discover and be familiar with their own Genitalia.

As someone who is practically involved in raising awareness within the UK NHS Health Service of the real difficulties patients actually face getting the treatment, they often, desperately need - I know personally of when many people were simply ‘not taken sufficiently seriously enough’ with often irreversible and, too often, fatal consequences. While the medical profession acknowledge my own (main) health condition of Chronic Fatigue Syndrome (as well as the LS / BXO) it will not support me whatsoever in trying to claim financial support through benefits, despite my inability to work. Indeed, I have been independent of state benefits and employer responsibilities since January 2013.

In terms of Women and LS specifically, again, it really saddens me to think so many Women feel they are being failed by topical steroid treatment, when, for the majority, if it is correctly applied, sufficiently frequently enough AND to ALL the infected skin areas then improvement will occur. This, certainly is not the individual Woman’s inadequacy, rather it is the real shortcomings of the Medical Professionals themselves, who too often seem, on the occasions when they do actually take the individual sufferer sufficiently seriously enough, that all they want to do is give the bare briefest information possible so that they can then move on to the next patient.

Given what I say above, I fear you misunderstood the perspectives I was trying to communicate and express in terms of frustrations with these Women's Health / LS Forums, and new forum posts. The point I was making with Women new to these forums is not that it was their own inadequacy in being unaware of the, already, wealth of information that has previously been posted by very knowledgeable fellow LS Sufferers within these forums - rather, that this is an ‘inbuilt’ deficiency of the way the web site is set-up and functions in practical terms.

Indeed, I recently read a historic thread where several Women on here were talking about setting up their own website, so that the accumulated knowledge shared in these forums could be put together in one place for all Women LS sufferers to get the best of all information without the need to trawl through different discussion threads. I have tried this myself on several occasions, to seek a previous thread discussion post and I have more frequently than not given up after a great deal of frustration in trying to seek out what could have been critically important information.

So yes, as you rightly highlight, the real positive role of these forums for new sufferers is that they can be given empathetic responses from fellow sufferers who have been through the whole process of being fobbed-off by Medical Professionals who should have health with them in an entirely different manner.

Essentially, I wholeheartedly agree with the emotional sentiments you have expressed as to why we need to take each opportunity each new forum post provides us with to give the best advice possible from the perspective of a fellow sufferer … I certainly will continue to do my bit to give realistic advice and empathetic responses to new Forum posts from my existing knowledge base, and share my own practical awareness!

Hi Wee_Dugie

Thanks for clarifying, always good to clear up misunderstandings. As you so rightly point out, so many of us are being failed by the medical profession in large and small ways - though obviously I'm eternally grateful for our wonderful NHS and all the dedicated professionals working within it, if only there was more money...

Yes I do believe the critical role of these forums is to support and share. There are dedicated sites with information but, if they are run by one person, or a small group, they tend to stay fairly static with their advice. The thing I personally enjoy about this site is, because of sheer weight of numbers, that it is constantly evolving as people try out new things, and different people come to the fore as advisors for a while. There is room for both approaches, and people can take what suits them - the more sites, the more awareness the better!

And you have always been tactful and diplomatic, so please don't worry about that. We are all focused on finding ways to make this horrible thing bearable, no matter what shape our 'bits' are.

Bridge

Thank you Bridge, I agree fully with what you say! It would probably be a different forum I would need to outline the major inadequacies of the NHS and the consequent health condition types that are being failed by the 'system' as it was set-up to address. Not that that detracts in any manner from the wonderful dedicated and hard-working people who work within it, day in and day out!!

I severely doubt whether the UK population will ever get round to having an adult discussion on how the NHS should be correctly funded so that ALL heath conditions are adequately and more evenly addressed. The unfortunate people who are on the 'front-line' of this inadequacy are all-too-often children, adolescents and young adults - many of whom face severe consequences because of this for the remainder of their lives ......