Why isnt there much known bout Endo? Its an in-curable disease which makes women suffer it shuld be as well known like cancer !!!!!

Why is it that most doctors dont no much about it, what causes it ?, how to cure it ?, how to diagnoise it ?. Yet more women are suffering with it everyday. Everytime i go to a doctors surgery, chemist, hospitals theres never any posters up about it like there is about every other disease and condition it makes me mad that this in-curable disease is completly under estimated and feels like its swept under the rug, all women should no about this condition yet they dont ,i speak to women that have never even heard of endometriousis yet 2 of them by the sounds of there symtoms have it. It makes me angry i wish it would be more exposed, more known and i wish i could do something about it !!!!!!!!!!!!!!

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  • Hi, it makes me very mad too, it's as common as breast cancer and apparently just as painful. It ruins your life and the pain and symptoms you just wouldn't believe existed as there are too many of them to cope with, never mind list. Doctors are stupid and we have to deal with these idiots all the time who don't know their ar.e from their elbow. You are spot on there's never any leaflets around, it's all hush hush. Imagine if 1/10 men couldn't have sex because of pain the world would rush to find out why and cure them. I don't believe for one minute that this disease is incurable it's just that it is easier for surgeons to do a half a job on us or castrate us or remove our womb, far easier than spending time and skill removing all the little bits they should take time to search out and look for and remove properly. Instead they make excuse after excuse and tell everyone it's a mysterious disease or it's incurable. I don't believe it as in this day and age they can do face transplants, make the disabled walk, sex change ops, the list goes on. But they can't take a few spots of endo out from a woman??? Truth is they get the fantastic wage for doing as little skilled operations as possible, why would they want to do a more skilled operation for the same amount of pay. X

  • I'm sure a cure would have been discovered decades ago, if it was a mans disease !

  • I completely agree with this! I was crying to my doctor how down it is making me and how much of an impact it has. Her reply was "it's treatable". it doesn't feel very treatable when the treatments make you worse! No matter what, painkillers and birth control methods so mess with your mind, especially your emotions. No body wants surgery yet you need to have surgery done to be diagnosed nevermind to be treated with surgery! it is hard to deal with both emotionally and physically. This is why I would love to do something for charity to raise money, raise awareness and hopefully stop our pain to then avoid other people going through this. Employers dont understand either, just because we can't exactly die from this it seems to be perfectly 'norm' to live in constant pain.

    Sorry about the rant, im just so glad other people think the same as me

  • Endo is Treatable

    It is not Curable.

    A rotten fence is treatable -

    it doesn't make it any stronger,

    and it will need re-treating time and again.

    The longer it is left untreated

    the worse and weaker it gets before treatment.

    Like me, it needed early treatment

    and continuing treatment

    to keep it strong in the 1st place.

    And just like us in the workplace,

    a rotten fence can be replaced

    - and the rotten fence is discarded on the

    compost heap to rot even more.

    I am a rotten fence.

    ................ Yup it's all about men and money. If men had endo - there would be so much more done for the disease in every aspect that needs funding. If money was available, we could spread awareness and more and more ladies

    could get the diagnoses and treatments they desperately need to stay productive citizens in the work force.

    But who will fund this?

    Big Pharma wants to keep us as its customers - we are valuable clients of theirs, so they won't want us to be cured.

    Feminine Hygiene product manufacturers makes vast profits out of us as we must be spending at least double what normal women spend on these things.

    The Government won't see investing in endo as a vote winner with the men folk who will consider it discriminatory and the party donors won't be interested as they are probably directors of Big Pharma, whose share dividends depend on the likes of us being their valuable customers.

    Schools don't like to talk about scary topics like infertility and gynae illness.

    And women who are struck by endo usually are far earning far less than average females do - and cannot spare the money to support the endo charites as much as they would wish to.

    We are marginalised in society - unbelievably difficult to get benefits we need, very hard to be employed even though we want to work for a salary when we are up to it. Ridiculously fobbed off by the medical profession time and again.

    There's not much of anything positive to say about endo.

    Cancer on the other hand, strikes healthy, productive, high earning men and women as well as the poorer ones. It strikes quickly and it is dealt with quickly when it is suspected.

    And for a lot of patients they are cured and return to their productive high earning jobs and can afford to spend a bit of their wealth ploughing back in to the charities that support cancer. For those unfortunates who do perish due to the disease, their healthy loved ones want to do fund raising in memory of their lost relatives and friends.

    Endo strikes young for the most part, it is an invisible illness, women plagued by endo don't have the strength to battle disease and forge a career up the corporate ladder. They are low waged or no waged. and their prospects for improving their own situations is really low, regardless of their loyalty, intelligence, commitment to work through many days of pain which would see most normal people tucked up in bed.

    There are so many battles with regards endo. The battle for research, for funding, for awareness, for education, for health care, for employment protection, for welfare payments, for respect and understanding, for accurate data from Big Pharma.....and all the time we have a minute by minute battle with the disease itself and the consequences of the disease and side effects of the treatments.

    It is very frustrating all round.

  • It's because endometriosis is not life threatening. Hugely life debilitating but that doesn't seem to matter. Makes me wonder how many suicides are linked to endo? Most of suffer depression. But again, that doesn't seem to matter. X

  • There is no cure, but treatment. The pain and discomfort comes and go. I've had endo for +-20yrs and the pain differs at time. I'm being treated for the second time on Visanne and it helps a bit. Take care:-)

  • I agree, it's just stupid. I know it's not life threatening but it can stop you living your life! And we have to work through pain because it's not classed as a disability yet I'm sure I've heard of people getting benefits for bad backs and depression, I'm not saying they are not hard to cope with just that endo can be worse than them but we can't get anything.

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