Why they CANT treat endo in this day and age but CAN reconstruct a mans skull (in news today) and do hand and face transplants etc. why?Why?
Surely if they put the effort, time and money in, surely they could start treating endometriosis thoroughly and properly and permanently by now. Come on doctors do your bit for us too...... You owe it to us, it's long overdue.... Do you all agree?
Totally, absolutely and thoroughly If nothing changes, the next step will be to clone Mr T.
The problem with Endo is down to three aspects.
The first one is that because there is no definite reason why or how endometriosis occurs, it's difficult to find a "cure". If a cause can be
found a cure will be easier to
The second is that endometriosis isn't a glamours disease. It impacts on two previously taboo subjects. Periods and sex.
The third one is that it's a woman's disease. I'm sure if it was a male illness a cure would have already been found!
P.S what did you decided about starting GNRH ?
I feel the same, not to sound sexist but I think if it affected men too some top surgeons and scientists would have their heads together on this, some celebrity would have put their face to the cause etc. Unfortunately though it's 'women's problems' !
I agree with Cuddlybarb, with emphasis on the 'Women's Issues'. We're not being sexist, it is a fact. Just look at how far we have managed to come in the last 30 years, largely because women demanded to be heard on topics such as endo, PCOS, ovarian cancer etc, etc. One area that concerns me is the prevalence of many, many autoimmune conditions - that most people have never heard of - where women are the majority to be affected. Add to this those conditions that seem to occur mainly in menopausal women. This seems so important a link, but is anyone taking any notice? I asked my gynaecologist about it in relation to PBC, and he just shrugged and told me to go and read some Endocriniology journals!
Totally agree with "Cuddlybarb" on this one! I can think of several reasons why Endo is still being left behind other illnesses when it comes to treatment, etc.
Endo is still associated with lots of myths and mystery - for example "pregnancy cures it", "you can't have it following hysterectomy", "teenagers can't get it" - things like this demonstrate that not only is there a HUGE amount of ignorance out there surrounding Endo, but also that many people are NOT questioning this ignorance.
Endo is NOT an easy illness to identify - it does not at present present with really clear symptoms for everyone. Some women have Endo and no symptoms, whilst many more have varying symptoms depending on the position and extent of their Endo growth(s). Furthermore, Endo symptoms are easily confused with those of many other illnesses. Therefore, I can see why many medical professionals might want to shy away from getting involved with Endo - it is not clear cut.
Endo is NOT an easy illness to understand the origin of. There is, at present, no clearly defined reason as to why some of us come to get Endo. The mechanisms causing the illness are still very little understood, and there are a number of hotly debated theories as to what goes on. Retrograde menstruation? Inherited genetic faults? Oestrogen Dominance and hormone imbalances? Auto-immune problems? Cell mutations? Any one of these theories COULD currently be offered as a reason why some women get Endo - but we cannot yet be sure if they are accurate.
Endo causes so many problems, on so many different levels for women (and their families). Fertility issues. Pain and fatigue. Problems at work. Inability to participate in hobbies. Missed education. Reliance on painkillers and other medication. Stress, anxiety, depression and mood swings. Weight gain. Lack of money. Bowel problems. Repeat surgeries. Painful sex... each and every one of these things may be a problem for women with Endo (and has knock on effects for their family and friends). When an illness is chronic, and causes a multitude of problems, people such as employers, medical professionals and those with an eye on budgetary savings often worry that treating the illness and supporting sufferers will cost too much money.
Endo is NOT glamorous. We live in a society that does not like to talk openly about bodily functions - especially ones that are embarrassing. So, an illness that affects women's periods, can cause bloating, upset stomachs, urinary problems, mood swings, infertility and other unpleasant, and sadly "unattractive" symptoms is hardly going to be top of anyone's list of things to discuss!
Endo is believed NOT to be life-threatening. With all the financial cuts that have been made to the NHS, Social Services and other care/treatment providers, it is increasingly clear that some diseases take precedence over others. Illnesses that society understands to be "killers" are widely talked about, and adverts for charities that promote them appear regularly on TV. If an illness is not very well understood, and is thought to be pretty "harmless", then most people just overlook it. They do not appreciate what it is like to actually HAVE the illness. Many people only react with real sympathy or concern to illnesses that they are afraid can kill. Research into illnesses that are not "life threatening" is also often less frequent than research into so-called deadly diseases. Again, this is probably because even researchers thing that people at risk of "killer" diseases are somehow more "worthy" and deserving of support. "Lesser" diseases like Endo, that are NOT seen as "life-threatening" take a back seat.
Many people are not aware that they could get Endo. People tend to have the (somewhat foolish) attitude of "I'm allright, it won't happen to me" until they ACTUALLY GET A DISEASE! Up to this point, they assume they are "safe". They also assume that because they are "safe" they do not really need to know much about the disease. This makes it EVEN HARDER for them to empathise with, and understand, people who DO have the disease!
And, yes, Endo is mostly a disease that affects WOMEN (though, believe it or not, MEN can get it too!). Even though we live in the 21st Century, and the days of the Suffragettes are long gone, women are still sort of "second class citizens". Even today, they often earn less than men, and may be less likely to get promoted (the so-called "glass ceiling" effect). Women are still often seen as wives, mothers and home-makers first and foremost. Femininity is still frequently "judged" on how physically attractive a woman is (usually in a stereotypically big-breasted way!), or whether a women has children. Sexism abounds - in the form of topless bars, lapdancing clubs, strippers, "page three girls" and "Lads' mags" - all things designed to titillate men by viewing women as little more than sex objects... So, anything affecting mostly women is highly likely to be taken less seriously than things affecting men, in a society that still puts men first.
The WORST part of this last issue is that WOMEN can actually create negativity towards other WOMEN. WOMEN help to create a society in which they are not yet equal to men. They do this in LOTS of ways... like WANTING to be "glamour models", or making bitchy jealous comments about other women who are prettier or thinner than them. They do it by criticising career women. They do it by buying into a fashion industry that promotes anorexic models, and dressing to impress men. They do it by obsessing about "Chavs" and "Wags", and trying to copy pointless celebrities rather than being themselves!
WOMEN who do not have Endo, do it by failing to understand and support women who do have Endo! So, the only way to get the message across of for the ones of us who DO have Endo to "make as much noise about is as possible". Join Forums. Join Charities. Talk. Explain to family and friends. Explain to our children (if we have them). Write to MPs. Go on Marches (like the ones happening currently). SHARE OUR EXPERIENCES.
WE are putting what we know out there, and we are sharing it. Maybe, over time, this will help to foster more awareness of Endo. This, in turn, may create an environment where increased research and improved treatment becomes possible. Perhaps there may even be some of us using this site who may end up researching Endo in our own right - and making breakthroughs. The knowledge we are sharing now WILL have an impact for future generations. WE are the generation who CAN MAKE IT A GOOD ONE!
Take care all of you & keep sharing - keep talking.
Elaine Ellis. x
P.S. If anyone wants to sign my Petition, or to contribute an Endo effects on work story, please feel free. The Petition and post about work can be found on this Forum at "Please consider signing my E-Petition" and "Your Help Is Needed Urgently". Otherwise, you can e-mail me at firstname.lastname@example.org Thanks.
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