Lack of research

[Fooofs91]

I would just like to rant about how angry I am at the lack of research into endometriosis , we live in the 21st century, with high tech equipment that can do amazing things like grow a new face from cloned cells and yet nothing is done for the fertility of woman, I don’t think doctors care about how serious this condition is and that’s really saddening. I completely understand that they are only humans too but there is literally no interest in this field and I honestly believe it’s Becuase we are an over populated world so who cares if woman struggle to conceive ??!! Right . I just wish they would open a damn research lab and I would literally sign up and use every cells worth of knowledge I own from my degree to some how find a cause of this mutated gene . Endometriosis is simply when your body is confused and makes the mistake of spilling cells that do not belong in other areas of the body if only some how we can switch off that gene and reverse this crazy thing . Sigh

[princessk09]

There is research out there but endometriosis is such a varied disease and can be caused by a number of things like old blood flowing back into the body and sticking to organs etc.

That’s like saying it’s the 21st century why isn’t there cures for all cancers yet. It’s not that doctors don’t care, it’s that it costs a lot of money to find cures and reasons why something happens.

I’m 19 with endometriosis and PCOS, we are lucky to have some type of treatments available like contraceptive pills and surgery. And not all women with endo suffer infertility

[C765]

There is research, if you go on the endometriosis UK website and on the events page there's actually an event in London in November about the latest research done and what they wanna do next. I know what you mean though about all the unknowns and it's still not truely understood yet, hopefully they get there.

[Fooofs91 in reply to C765]

I just went onto the endo uk website and yesss it’s on the 17th of November such a shame that it is 1 day after my surgery otherwise I would have gone xx

[Angel1i]

I understand your frustration. The priorities of this human society we endure leave me asking questions like this every day: weapons and killing seem to be at the forefront of our leaders' strategies for existence.

We can't isolate a cure for just endometriosis when all our supermarkets are allowed to provide us with (a) unhealthy foodstuffs, and (b) packaging that is damaging our precious environment.

As excess sugar and salt causes obvious problems with so many aspects of our body's functioning, why is it treated like nectar?

If plastic packaging is needed to help keep our food fresh and clean how do we deal with the damage it does to our environment, including what I have heard about plastic causing hormonal imbalances in animals and our food chain?

Like most people I am so busy in my working life to educate myself more about these matters, and yet I know they are damaging everyone.

I suffered with awful pain from my periods since my teens, but endometriosis was only diagnosed from infertility investigations in my 30's. I was lucky to have one child. I had many early miscarriages. I then went on to develop endometrial cancer as O turned 51, diagnosed and extensively treated 8 years ago. I am just one individual. And yet every day I am reading about the suffering of so many women with endometriosis, and very young women at that. It is distressing.

I agree with you, we should all exercise tenacity and get our heads, minds and will behind this and not continue to be victims. It is not satisfactory that our bodies are routinely being hacked about like this either. We leave far too much in the hands of conventional medicine.

But first we have to change our material ways of living. We spend a lot of money, time and resources enjoying ourselves, when so much is wrong with our world. We elect our leaders, and then leave them to get on dealing with our mess and waste! (Yes, I just edited out the expletive versions!)

Life is a daily battle...to improve, do better. Not to allow let ruin get the better of us!

Let's start our own contribution by doing what we can to bolster Endometriosis UK, as well as do every little thing we can to change our bad habits into good.

Thank you for your rant! I've woken up to a new cause today!

[Fooofs91 in reply to Angel1i]

Thank you for understanding why I said what I said , you spoke so clearly about the world we live in . Changes need to be made throwing hormones at us like sweets isn’t going to fix the initial problem more money more funding more research really needs to go into this field so many woman are suffering and yet endometriosis awareness hasn’t even been established yet . I know so many woman that have no clue what it is let alone doctors really understanding at least the key symptoms of such a disorder . I actually contacted someone from the WHO - World Health Organization In regards to research for this sensitive disorder . I’ve been working as a haematologist now for over 3 years , I would loveee to dedicate my life to researching endometriosis instead if only there was a way. Xx

[NW248]

Quite apart from research, there is a tremendous lack of knowledge among GPs and Gynaes about the condition. I diagnosed myself at 47 despite years of repeatedly visiting my GP and gynaes and being told various symptoms were either "normal period problems" or couldn't possibly have a gynaecological cause (blinding headaches every time I had a period and constipation for years). There are even lots of gynaes out there doing laps as the first test of endo rather than using an MRI.

[Fooofs91]

I completely agree with this lack of knowledge . I saw over 15 doctors I even saw a head consultant of gynaecology from oxford university that diagnosed me with IBS and discharged me straight away. After a full internal examination and a list of my symptoms .

[MikanRIN]

I totally agree with you. There is barely any help for those that have the diagnosis. I myself have done a lap and they only found white tiny blisters. Then they told me that everything looked fine. I still suffer from my horrible symptoms. I can't get out of bed when I'm on my period. I cry and almost scream cuz it hurts so much. I have this daily pain that makes me unable to walk properly. But nope! Everything must be totally fine with me right? I wish I had gotten the diagnosis. Now I have to live with my pain. No one understands me. The doctors barely helps me at all since "everything looks fine". I don't know what to do anymore. If more research existed, maybe we who probably have endo that doesn't show could be helped as well.

[jennt0506]

Endometriosis is poorly understood, poorly researched with poor treatment ootions, despite it affecting 1 in 10 women.

There is a lot of history to the condition, research shows it's not a new disease. Women diagnosed with hysteria are actually thought to have had endometriosis. That tells you enough about how society views a women's pain, and those over-arching attitudes still filter into medicine today.

It's not stupid to be frustrated. When the average time for diagnosis is 7 years, we need to be pushing and asking for more. It's not enough to simply accept the lack of research because 'there are so many other diseases out there that aren't cured either' - the difference is the level of active research.

Endometriosis isn't just fertility, it's a chronically debilitating disease and it has absolutely no truly effective treatment. That is not good enough, simply because it's a women's disease. It has been cited time and time again if the number of men were struck down with endometriosis as women are, it would be a very different case. Please don't feel your frustrations are invalid, a quick Google shows the extensive articles validating just how you feel X

[Fooofs91 in reply to jennt0506]

Thank you !!!! It just feels so much better when someone understands xxxx

[peacock_wings]

I RELATE TO EVERY WORD!!! And also to those women who have replied echoing your sentiments. It's literally patriarchy in action - endo is literally not considered enough to care about - I'm not sitting in victim hood these are facts.

If 1 in 10 men were experiencing ANY of the symptoms we have at ANY one time I guarantee the world would stop turning until they found a cure.

I haven't had a lap because I don't want to have surgery just to be told I have something that I already know about and be told there's no cure.

It's soul destroying how little research there is - or even care? GPs, gynaes, sex clinics the lot - none of them seem to know or care enough about endo. Far too many of us get fobbed off / shrugged at when this is a CRIPPLING condition.

I agree with Angel1i about us coming together with Endo UK. We are the only ones that will be able to make change because neither the health industry or the government (LOLL @ this government) have any interest in helping.