Please keep this forum the friendly place it was meant to be

Just recently I am waking up each morning with numerous messages from forum members, about hurtful posts made against them and others.

This forum is here to offer help and support to all members, all sufferers from endometriosis, their family and friends.

It concerns me greatly, and also frustrates me that as of late the forum is not the friendly place it once was, and this may discourage many people in need from using this much needed forum.

I'm sure many of our long standing members are incredibly greatful of the support and indeed friendships they have made over the years using this forum, and would very much like to see the forum return to the friendly place it always was, and welcome new members gladly.

So please ladies. Please do think about what you type before posting, the very last thing I want to see is our forum users upset by things they see written about themselves, and others.

Kind regards

Emma

Moderator

17 Replies

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  • I joined this site because I saw posts from women who were clearly desperate for help who were being treated so inappropriately by doctors and general gynaecologists despite the means now being in place to ensure this doesn't happen But it was clear that the message is still not reaching the first point of care and this seemed such a good place to at least try and join others who I saw helping to try and guide at least some to proper care and make a difference, because this site is backed by the NHS as recommended in the NICE guidelines. I knew there were other forums available but Endo UK seemed to concentrate on the real issue - women needing help - without any nastiness. I felt this so important as women who ask for help are so vulnerable. I have been there, as we all have, when life can seem so utterly hopeless that you feel you don't have the energy or strength to fight any more and just need to take from the strength of others and be guided to something...anything... that is better than the place you are in. I find a particular strength of this site is that at the touch of a button you can see a person's whole history in their own words to get a real feel for their dilemma in a way that they have perhaps not felt able to unload to a GP.

    No one can claim to have anything like an infinite knowledge of endometriosis for the simple reason that it is still largely an enigma, even to the world's experts. The best we have is opinion in areas that are not yet proven, but this should rouse curiosity, the fundamental quality of a good scientist, not vicious argument. We may be convinced we know something but conviction is very different to certainly until proven. My area of research is endocrine auto-allergy and I have absolute conviction as to its role in endometriosis but I do not claim it as a certainly because it isn't.

    I used to really enjoy this site until people started referring members to another site as the reliable source of information, which I feel is inappropriate when Endo UK has its own archived information resources. Surely there is room for different sites to co-exist when different members will prefer a different platform. Why does it have to be a competition?

    Anyway, I joined this site because I personally think it is the best for its focus on the real issue, helping people.

  • Hi, I would like to add that I have in some of my recent responses to some people made reference to other sites in particular a Facebook group. I personally have never done this because I thought or think that that site is better than this one. I have looked at many websites in order to educate myself about endo and this website and the support I have received from people here has been invaluable and I have also found a particular Facebook Group to be of great support also.

    I have only ever referred people to another site if when reading their post I know that I have seen information there that could also be of benefit to them and I hope I have never made it seem like I was pitting one site up against another, and I have seen other ladies write similar responses to questions where this has also been the case.

    I guess one of the main times this may have come up recently is where there has been a post from someone about consultants/specialists/specialist centres. In this instance I have referred people to a particular Facebook group as they do have some good info about specialists, accessing bsge centres etc. It doesn't mean to say that I or anyone else is saying that the endo UK website is not good, it just means that there are other places where ladies can go to get good info as well as this site and it should be OK to share that here if it is relevant to a individuals post.

  • Tina

    I may be taking first prize in being on a forum for a few days and now finding myself apologizing .

    I did say FB

    What I meant was , ok here is an example

    Tina turner is dead .

    What I meant by not using FB as a base for getting proper info simply because there are ppl who write blogs and they are not giving out true medical advice

    I meant to go to reliable sources for your research

    Agsin

    Sorry

    Please let me know if you'd prefer me not to post anything

  • Lindel

    If it was anything I posted I'm very sorry .You are right . Not one person in this world can claim to have infinite knowledge of

    ANYTHING

    There will always be questions and new things to learn.

    I don't know if you were referring to me about the knowledge thing.

    Of course I don't have all the answers or even half of them

    If I did then we'd be closer to finding answers.

    When I post I post something that happened to me or another .

    Lessons learned,,,,

    But I do believe I have a better understanding about than the laymen

    See I lived it 30 years there is not anything new being said that I did not hear before

    I also talk from a woman of wisdom due to my age and things I've learned

    I have said some statements about that I was not sure of and when I did I wrote

    I have no proof of the above .

    So if it is me forgive me

    You know research in this area is so on the back burner of what researchers are doing .

    And you can bet that we may not even be close to the top 50 in the line of

    Research and what research is going to work on first .

    We are not on the priority list of getting research in the , what's next to research next list,

    The above was my opinion plus some doctors I knew .

    Which of course is

    That is based on some doctors and my own thoughts so no it is not proven .

    But think about this . I had endo over 30 years ago and I have not learned of anything being discovered .

    It's the same as it was 100 yrs ago . Now what does that say about getting answers and cures .

    It means they are not working hard enough on this.

    There are advancements being made in other diseases but not this one

    We are women

    We didn't even have the right to vote not that long ago .

    We are second class citizens .

    We like not to think like that but m

    This is really a mans world.

    I was asked to do a conference call with five top doctors from all around .

    Plus a few of us going thru it

    A conference call

    I don't have all the answers but I know we need More women in the field of research for woman's issues .

    Until that happens we've only got luck they'll find something out .

    A dr once admitted to me that we are so far behind in this disease that if it was a disease that effected men there usually is research done on more of men's issues than ours .

    (THAT IS MY CONVICTION

    It is not a proven fact

    But a lot of things start out as a person's conviction or passion to know that leads to answeres

    So again I'm sorry if I said anything wrong

    I'm the same as you

    Yes I'm older but that does not make me less important than young girls just starting down that road

    Society has a way of dismissing people as they get older .

    It's also my conviction that I do know a lot about it thru experience

    Once again if me you meant

    I'm sorry

  • Hi Shelley - I'm really sorry but I'm not sure what has brought this about. This thread that run a year ago was due some arguments with members of certain other forums with different views but is all in the past. As far as I am aware you have nothing to apologise for. I'm not very active on here now as I have my own facebook group (EndoRevisited) in order to avoid that sort of thing x.

  • Thank you for telling me that

    I was sent a notice from the forum manager telling me I need to be more careful about what I say and I wrote that cancer post which I'm told upset ppl so they deleted it

    So of course being new I'm thinking some of the replies are about what I said in that post

    I don't know if you know about this but I get

    3 messages

    10 notifications and when I click nothing comes or won't open

    Anyhow thank you for saying that

  • Hello Shelly - no I didn't see the post but if you have endo you may wish to join my group as we have over 200 members in just a week mostly from here. You will be very welcome

    .

    facebook.com/groups/1148144...

  • Here here

    I joined the forum a long time ago and have never until recently experienced the what felt like bad feeling as of late .

    Let's agree to disagree sometimes none of us are experts In this field but we can share experiences ,support each other and some how muddle through .

    Thanks to everyone who has given me support over the years .

  • Me too, like a funny atmosphere. Hopefully it will be ask to normal now :)

  • Yes, clearly there are many sources of information but no one is an expert because of the nature of the subject and if any one source is claimed to be superior then troubles are sure to follow.

  • I have literally just joined the site and the first thing I came across was people bitching at each other and it did really put me of but then I came across some friendlier posts.

    I joined because I have had full hysterectomy because of severe endometriosis and now 2 years later am in agony again and was seeking advice in next stage.

    It is refreshing to know I am not alone in this but disheartening how little support there is still for us girls so hey let's use this site to spread the word that this is a chronic disease and get some support especially for the young girls that are literally just starting their experience of this debilitating illness as when I was diagnosed 19 years ago nobody had really even heard of endo and it was a lonely experience. We are here to help each other and make people aware of our experiences and get some knowledge out there.

  • I totally agree..it's disgusting and because of this I haven't been on here for a while. We are all suffering so badly and we need support and help. We need to support each other with this disease and be there for each other and not be disrespectful towards each other. It makes me very sad to read these things 😢

  • Does the above mean not telling it the way it is??

    My only aim is to support other women. I have suffered too much too long and still I find women being bullied by doctors who do not understand. I would not seek to 'frighten' anyone but to inform them and urge them to ASK questions of the so-called 'Gods' and yes most of the are men who patrol surgical wards often leaving desperate young women in tears because they wont consider that they might have endometriosis. I have personally stood as an advocat supporting another woman unable to articulate what was wrong with her. Tears wont do it- you need to be strong to fight your corner. That is why we need advocats who can speak for them. More than once in a ward I have taken an informal history of a despairing woman and strongly urged her to suggest that they stop telling her she is neurotic annd start looking for some answers. Guess what? More often than not I have been right.

    The best doctors in my wide experience will say "I dont know- but I will try to find out".The worst are the arrogant who treat women -still in 2015 as second class citizens with a womb. The very best consultants urge their trainees ( that's what junior doctors are) to talk to expert patients and LEARN from them. More times than I can count bright young doctors have thanked me for helping to take a good history back to their senior. Dont forget a junior doctor is more scared of you than you are of them because they know that they know very little..yet.

    Who or what are we frightened of? I for one am frightened of women being frightened of asking questions and demanding the respect they are due.

    I am frightened of support organisations who pussy-foot around the medical profession and dont do any of us any good.

    I am APPALLED by the stories I have read on this site. I thought that I had seen the worst of it/had the worst of it. But no, endometriosis is still a twilight disease, not fashionable enough to deserve real research. Cadaverous wombs for 10 Yippee! Headline news. 1 in 10 women languishinging in pain, despair and misery so what? No headlines there.

    If I was younger, fitter, stronger I would make it my life's work to bring this to the attention of the world. I am not young, fit or strong. Yes I did 'recover' from the 10 year nightmare of endometriosis. Yes my husband stuck it out and stayed with me. No we have no children. Yes that hurt- it hurts more every day. What really makes me ask questions today is why was I subsequently diagnosed with SLE (Lupus) another small print disease but one that more than one intelligent consultant has suggested is 'not a million miles from endometriosis'. One day probably when I am dead some clever researcher will find a connection. SLE mainly affects women (90 percent).

    Alright I am bitter. Small wonder. My medical history reads like a horror story. Endometriosis, SLE a life bereft of children then a double whammy. A career lost, disability and yes deep resentment and saddness. But I am still here. There is something very strong that keeps me going. Partly a supportive husband but more than that I am angry, angry at the way i still see women being treated and deeply frustrated that I seem to have no voice.

    So tonight when I fill in the application to use my experience to become an advocat for women struggling with this hellish condition- dont dismiss it.

    I am minded to take the cause of endometriosis further.

    We, not Endometriosis UK need a spokesperson who has something credible to say

    That person is me.

  • Versailess

    I'm glad you posted this .

    I think the one whom ppl are referring to may be me .

    I do think that you can not sugarcoat things.

    Or cruely give false hope just because it does not cause waves. That having been said a lot of ppl were upset by my post about cancer thing

    I did not have a board like this when I went through it all

    And if I had I would certainly want a person to be straight up with me

    It may not win personality points

    But having all these ideas to me it's like

    We are all brainstorming

    Each with info to add that may help .i did not mean to offend ppl I did not communicate well enough to be understood in the way I really meant it to sound

    shelly92555@yshoo.com

    And you are right this disease is not getting the attention of the uppers

    I have read that a lot of auto immuned diseases do run hand in hand

    And they are all from

    Inflammation of some kind

    Endo is a auto ammune disease

    The books you see like those big yellow ones written by doctors talk

    A lot about this

    They are usually titled

    What your dr won't tell you

    Or books for dummies

    Those ones

    I have gotten a huge amount of proven info in them

    I'm sorry you are going thru this

    Sometimes it feels like our bodies are attacking us and they are winning

    Auto immune diseases that have the least research

    They don't see it

    It does not exist

    Get one of the books like that it will give you even more insight

    Lupas is mostly a woman's disease

    A lot of auto immune diseases are mostly found in women

    Again

    Great post

    Thank you

    shelly92555@yahoo

  • I've just seen this post; I must say I'm surprised as most of the posts I see are giving support and advice though I will say sometimes (even when given with the best intentions) being told constantly to feel or think positively, lose weight, do this or do that to make things better really does feel like I'm back at the GP, aged 15 and made to feel stupid. Condescending may not be the intention, but at times it has been the result; saying that I hope I'm not guilty of it as I know my strong views about this condition sometimes get a little too exuberant!!

  • You were pretty nasty 3 minths ago to me Lindle,something i have never come across before..and was pretty horribke. Thete maybe needs to be admin monitoring though most people are supportive in my experience  

  • Emma

    I think you may be referring about one of my posts .

    I absolutely do not want anyone upset or hurt or scared especially from something I said wrote or did .

    The last thing I want is for ppl already suffering way to much is to cause further pain .

    Please let me know if you would like me not to post on this forum

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