Endo 'specialists and gynaecologists' DO NOT KNOW what they are doing!!!

[wp22]

Why is it that every single one of us have lap after lap and end up in the same pain as before we started? So called endo 'specialists' and gynaecologists DO NOT know what they are doing. I get a strong feeling no one is at all ar..d about us women and this thing ruins our dear lives. There is nothing mentioned on the TV, no leaflets, even stories in newspapers/magazines do not tell the full devastating facts of it all, they are usually the occasional success story, but never the true and full version of events are told. Is it because we are mere women and not regarded highly enough? It just makes me sick, a male friend of mine has just recently gone to see dr about his nuts. Straight away he was taken SERIOUSLY and all actions go for him. He is going to hospital, already got HIS appointment and having all sorts of tests done. Im so sick of this half hearted attempt at treatment towards us. X

[wp22]

Why don't they just do their job properly? X

[KathleenLucich]

I read somewhere that there are only 100 endometriosis specialists, and when I use the term specialists, I'm referring to those who really know what they're doing. 100 in the whole world!! That's depressing.

Good news is they are as frustrated as you are because they care. I know one personally who says he is SICKENED by the fact that so many women he sees have been through surgery after surgery done wrong, some 20 times! Imagine being in his shoes, seeing the misdiagnoses and mistreatments, and knowing all it would take to prevent that is education and training. It tears him apart. It tears other doctors like him apart. And they are fighting the system, and fighting hard.

Dr. Nezhat in California, for example, has stepped up to the plate and is organizing a Million Woman March next year to bring awareness to the the situation. Already it is spreading around the world. Please be a part. millionwomanmarch2014.org

Dr. Cook in California has been invited to be part of a new TV series on women's issues that will highlight endometriosis in 4 episodes. He happily agreed though it's costing him time and money to be away to do that. That's national exposure and perfect timing for the march.

So awareness is coming. Hang on. The great endo specialists out there know what they are doing and are having great success. There's just not enough of them, but they're fighting to change that.

You mentioned your dismay about there being nothing out there that tells the true story. Here are a couple videos that came to me just this week. The last one was on the news here. Sadly it was 2 years ago. Not enough, but at least this is something. And if we all share them, tweet them, and post them, it will help.

rebekahhoyt.com/blog/2011/1...

video.foxnews.com/v/9275306...

And there are many, many endosister blogs out there sharing their stories. We all need to be sharing those as well. If we're not getting heard, it's because we're not shouting loud enough!

And if I may also add, I know you're angry because so many doctors don't know what they are doing. But they are well-intentioned. They just don't know better. So be mad at the system. Fighting mad. Then stand up with us to bring change next March when we march throughout the world.

[LeyaC in reply to KathleenLucich]

Sorry to sound like I'm not happy about this but I really couldn't give a c..p about America, I know they can do something about it but what about in the uk?? This has given me motivation and girlies when I come back I will have news of awareness for you!! I'll try and do something for all of us in the UK that dont get heard!

Stay well,

Leya xxx

[little_fins]

Leya, count me in to help. I've been complaining for 14 years of pain and all my GPs kept saying was 'oh its period pain.' They then see me going about my daily work and think well it can't be that bad. Far from it! Some days I can hardly get off the sofa, I just sit crying doubled up with pain but I HAVE to go to work to pay he bills. Endo should be classed as a disability but its not. Time and time again I get the 'oh I've had bad periods at times too.' No no it's not like that! It's constant. It's crippling, it's making you want to give up on life pain yet we in the UK are one of he countries for the longest diagnoses for endo. Doctors kept giving me IBS meds. I said they don't work but was basically told it was me that was the problem, to take meds regularly as I had IBS. Finally after begging to see a gynae for years I saw one last Aug who lapped me and found endo, stage 4 and too invasive for him to deal with so he sent me to a specialist. He said I don't have IBS. I could have kissed this guy on hearing this! This is after other medical issues over the years where I have had laps in that area and its been missed. I also had lumps in my vagina which always got commented on but no one knew what they were or could be bothered to do anything.

Then there's the emotional issues. The weight gain as docs pump me with different hormone stuff. Then the pain is so bad I cant exercise anymore. This year has been far my worst. I am 27 and despite the pain I passed out last Aug as a Royal Navy Reservist and also just completed my teacher training. As I have done all this people think I can't be in that much pain but they've not been the ones to physically pick me up off the floor after a lesson as the pain is so intense but I didn't want my class to see. They haven't seen my popping pain killers like smarties. Girls we need to stick together and make this dibilitating disease known in this country! The amount of women I talk to who have pain and endo symptoms yet are being passed from pillar to post. It's not on and we shouldn't stand for it!

[LeyaC in reply to little_fins]

I know you may not want to post it here, you can send a pm if you want but where do you live? Doesn't matter either way whether you're close or far away, I want to do something to raise awareness but as we both know its almost impossible to get a set date when we'll be on to do a sponsored walk or whatever so maybe if I put a post up calling ladies from everywhere or maybe the volunteers from different county's to set something up and come up with ideas of what we can do. Whether we all arrange to send our stories to the local paper or to a magazine or go on tv, everyone do as much as we can and we could try to get celebs in on it too. I know a few things I can do so in the future am I ok to contact you little_fins?

Leya xxx

[Impatient]

rebekahhoyt.com/blog/2011/1...

Thankyou Kathleen for the link to the documentary

It was very good indeed and covered so much territory.

As for the millionwomen march- much as I would love to take part, it will be hugely expensive for someone like me on very limited means because of endo.

And would it really be as effective as say visiting secondary schools in one's neighbourhood and giving a talk to all the female students?

It might at best make a few seconds of the nightly news or a photo and small piece in the local london papers, but that doesn't really tell the people who need to know, what exactly endo is and what symptoms to be aware of.