endometriosis: i was diagnosed 16 years ago... - Endometriosis UK

Endometriosis UK

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linnyloo63 profile image

i was diagnosed 16 years ago with endo after hysterectomy now im classed as unfit for work but not able to get disability my bowel and bladder dont function properly (some ppl mistake endo for ibs ) left in chronic pain , got gall stones and cysts on my liver which can not be operated on as it will leave me in more pain . my advice keep on tell the gynae ppl how you feel , really feel i had to convince mine to look properly as i ended up with two masses of scar tissue DONT BE FOBBED OFF i would not want anybody to go through with what i suffer fro m

12 Replies

I know the feeling . I have been diagnosed in my early twenties in ado in my country but it took years to be diagnosed with endo to be treatment by arrogant gynae who treated me medically badly and poor bed manner took which resulted me as being marked as a difficult patient ... Discharged myself from the first hospital ... Second hospital was better as first but then I was changed of consultant after my gp checked post op pains to end up with yet another arrogant consultant .

These had really awful consequences on my health left me in pain for more than a year after first op cancelled and reput to be a waste of time as too dangerous and second one cancelled and in total more than 9 months wait resulting in a big nodule...

The problem is not only to cope with that condition but the indifference of doctors ...

Versailles profile image
Versailles in reply to maeline

Right on! And sadly most of them are men who have no understanding or much care for what this horrible illness actually means. Dont be put down. I have been fighting for years and now they actually ask me because I am the expert and incidetally miraculously still alive and fighting.

I think you should just keep trying to get dissability, don't let them fob you off, even go to the tribunal and state why you should be getting this support, I finally got it after five years off trying so don't give up that's what they want you to do fight it all the way. Good luck natalie

Versailles profile image
Versailles in reply to Natalie73

You CAN and should get DLA/PIP. If endometriosis has wrecked the havoc it can do you are disabled - probably more disabled than someone who has lost a leg. For more years than I can count I wished I could chop off the source of my agony. Find a good advocate to fill the forms in. I am applying to Evdometriosis UK to be an advocate. I wonder if they will cconsider I am too old at 68............. but boy do I know a thing or two about just how disabling this forgotten can be.

thank you mine was declined due to a letter from my doctor , but i have got an infection which does not go away so due to have blood tests then possibly ct scan and/or cameras this disease is now affecting my legs so battle back on

Not sure what country you reside it as it is likely to be different. I am in the UK and have managed to be put in the Support Group of ESA. Over here you can get Disability Living Allowance also but they are toughening it up and many will lose their payments. I have endo history and severe adhesion problems from various surgeries and am now in menopause but still get stomach and right sided pelvic pain - pinching, feel nauseous, low back pain and burning in my abdomen as it has spread and on to point of referral to specialist endo gyne for possibly radical hysterectomy. However, I fear greatly getting more adhesions from this radical surgery and may have to undergo bowel ressection. I have Diverculitis Disease and Hiatus Hernia and IBS and with all those health problems it makes sleeping difficult as it is suspected my ovaries may be restuck to my bowel and maybe other organs. I am intensely anxious and prone to depression and thankfully this was sufficent with loads of medical evidence and surgery proof to get me into a disability group as working along with the fatigue and chronic pain at the moment is impossible. I think if your everyday life is plagued with symptoms and pain to the point you struggle to even accomplish household tasks as I do and your symptoms fluctuate wildly and you have bowel and bladder problems I would think you do have grounds to be considered for some form of disability,

hi just like to say mine started after hysterectomy (womb and cervix ) it is only when i started getting period like symptoms they started looking into it and decided to remove my ovaries which they found stuck to my bladder that was in 2004 , i too was diagnosed with ibs but that can be the endo so don't get fobbed off with that in 2008 i had major surgery to remove masses of scar tissue from my large and small bowel . what they don't tell you is if you have a hysterectomy when your suffering from endo you cant take hormone replacement therapy as it the hormones producing the endo . i am going to go back to trying to claim DLA as i am now suffering with problems with my hip and leg i have been awarded disability by ESA i am due to have more tests with my doctors so ill ask them to help . I am at a stage where i can no longer have operations as the pain i am in will be made worse as they think i have adhesions on most of my organs , i have been diagnosed with gall stones and cysts on my liver so sometimes i feel im living on borrowed time so in essence this disease is going to kill .

I was left for several years before actually being diagnosed with endo. My Mum knew I had it. She had it herself & had hysterectomy. By the time they got to me when I was 38 after several tummy ops, a suspected hernia WAS in fact endo! Then I was referred to a gynae. She was a little reluctant to agree to a hysterectomy, but after years of suffering and fear of venturing outside when I was on a period she agreed. When I was in theatre they got a shock! Everything was fused to my bowel & bladder! They managed to remove my right ovary with an 11cm cyst, but my uterus was stuck to my bowel & bladder. They even called in a bowel consultant whilst I was 'under' for 3 hours to try and sort it! Unfortunately they couldn't! 18months ago I became ill, even though I was on Norethistone to stop my periods. I had a bowel blockage due to endo / scar tissue twisting my bowel. I had an emergency op removing 6 inches of bowel. (40 staples! ;) ) That was after being discharged from one hospital after being told the op that was 'possibly required' would be tricky, and my problem had gone (even though I still looked pregnant!), only to be sent directly to another hospital the next day by my GP. Thank goodness for that man! Today - I am back under a regular gynae check up every 6 months, and not at risk of being discharged from outpatients like I was at the dud hospital I went to before!! At not quite 42 years old, I am now a lot wiser than I once was! x NEVER take no for an answer - NEVER be discharged from a gynae consultant! My GP said I should be on a gynae list.

in reply to rainey6373

I understand completely. But today this Dr. telling me my original Dr. didn't know the truth. That diagnosed me with Endemetriosis. And all my tests came back negative. My biopsy, too. He told me I had it for two and a half years. It's awful! The pain and rest of problems. They gave me the Lupron Depo shots, and it didn't help me. The Endemetriosis kept growing. Even after they had to medically stop my bleeding. It still kept growing. I was full of cancerous cells inside when they did my Hysterectomy. And I'm experiencing same problems again. With the pain and symptoms. They misdiagnosed me twice recently. After being told it was back in my abdomen. But the only way they would find it, and do something about it. Was by doing surgery again.

Well done for standing up to them! Its hell when endometriosis attacks bladder/bowel. I am now up to 15 laparotomies due to the original slow diagnosis of endometriosis and massive adhesions. I am very angry that women much younger than myself are still being mistreated in 2015.

Have you heard of Peristeen Anal Irrigation? It saved my sanity as my bowel had almost packed up and Picolax weekly and ghastly phosphate enemas were making my quality of life almost intolerable. Ask me if you are interested- 'they' are unlikely to tell you about it even if they know- usually they dont. What a lot 'they' still dont know!

I'm sorry. I don't know if it helps? But hope you feel better. I am in some severe pain myself. I've had Endometriosis before. Was put on all kinds of meds for it. I recently got told I had it back. But was sent to another Dr. That doesn't seem to want to help me. My regular Dr. doesn't seem to know all the facts about this problem either. And isn't sure how to help me. And doesn't want to admit how serious this is. And my symptoms are all the same. I went for an exam that's left me in worse pain. She understands that I'm in pain. But she gave me a misdiagnosis. And so did the Dr. I was sent to for help. After being rediagnosed with the Endometriosis again. I was told the same thing before about it. It can come back, and often does. My symptoms/pain, are all the same. In my case my biopsy came back - too. And I had to have a hysterectomy anyways. They said, it'd been there for two and a half years. The only way they'd find it again. Would be by surgery. Because none of my tests showed anything up for it. I've found a lot of helpful information that I wasn't aware of before. Here on the site. And also appreciate support from others dealing with same problem. It's often a problem that's over looked. And not taken care of correctly. It's very serious, and can cause many other problems, too. Wish you best of luck.

I also had symptoms and signs of the Endometriosis... When I was younger, too. My biopsy came back negative then as well. Is proof you can go untreated, and still have it. When they've had to perform surgeries for it. And can still come back even after hysterectomy.

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