quality of life

my endo was diagnosed after hysterectomy and i have had evry diagnosis out there , now im disabled unable to have operations and essentially been told there is nothing they can do for me except give me a quality of life as best as they can . the best way i can describe the pain is wanting to curl up in a corner of a room to die you are made to feel like you dont know what your talking about but that is because some doctors dont understand it for the last 20 + years i have been fighting with this illness now im just an unfortunate woman with a disease that is going to take her life

5 Replies

  • I wish I'd seen this last night so I could have sent you a hug - I've felt like this more times than I can count.

    It absolutely sucks that your endo wasn't dx until you'd had a hyst, because this can make it much more difficult to treat. Was it a full hyst where they removed your ovaries, or just your uterus? How old are you and are you taking HRT? If you are, this could be exacerbating the problem but it may be unavoidable - you really need to speak to a specialist.

    There's two things you need to do, I think - get a referral to a top notch Endo specialist with experience of treating post hyst endo, and get a referral to a specialist in pelvic pain. You may have to travel to see people as sadly there aren't many people with the skills to help.

    It could be that adhesions from surgery are making your pain much worse - I've also heard of endo sufferers developing internal haematomas after a hyst which cause a lot of pain. It's also likely that they didn't treat any of the existing disease or adhesions when they did your hyst if they weren't expecting to find it. It is harder to treat after a hyst but not impossible if you see the right person. I suggest doing as much research as you can into specialists and take this to your GP.

    Although painkillers are just masking the issue, proper pain relief is essential if you're going to be able to function. What are you taking now? Also, if your ovaries are still there, they can give you hormonal treatments to help.

    My situation is different to yours - symptoms started at 12, diagnosed at 22, have now had five surgeries and things are progressively worsening. Surgery doesn't help and they believe that my nerves have been damaged by years of pain, so they send pain signals regardless of any stimulus and nothing can be done. I'm on more morphine than any doctor has ever seen and have been on it for nearly a decade, and the doctors are pressuring me to reduce it even though my pain is worse than ever and I'm having no treatment to improve things. I also have ME which gets worse every year and now I'm mainly housebound. Although we are different, I completely understand how it feels to have no hope of things improving - I've often wished this disease was terminal so I wouldn't have to live like this for another 40 or 50 years (my nan is in her mid 90s now), which I know sounds awful when some people have terminal diseases and want to live, but it doesn't stop me feeling that way when things are bad.

    I don't know what treatments you've had or where you are medically but there may be lots that can be done to help, whether it's surgery or meds, so don't give up hope yet and keep fighting.

    Sending hugs


  • My heart and thoughts go out to you hun. If your case doesn't finally prove to society, the medical profession just how disabling and downright awful this condition can be, then I will scream from the highest mountain! The fact that endo and adhesions takes so so long to be diagnosed, on average 7- 10 years and shockingly in your case 20, indicates a major failure of recognition, identification and treatment of endo and adhesions causing immense suffering and dispair to millions of women worldwide! Endless years of fighting to simply be believed by employers, the DHSS, society in general and worse still - the medical profession is inexcusable and downright cruel. The busy forums of frankly desperate sufferers of this nasty condition must surely one day be listened to and acted on! You are not alone, you have us, those who are living with disabling pain and symptoms too and we care, we care an awful lot. We will continue to shout to be heard and one day the world will sit up and listen and things will improve dramatically for endo and adhesion sufferers worldwide, but in the meantime we have a way to go yet but we will get there! Big hugs from us all. xx

  • the problem with this disease is it is so like other illnesses that they wont do specific until they have checked other stuff out first i was diagnosed with IBS when my son was born in 87 but they are thinking that it could of been the start of endo .

    1991 sterilised

    1993 partial hysterectomy ( WOMB CERVIX)

    2003 started vaginal bleeding

    2004 ovaries removed was meant to be keyhole but they was stuck to bowel and bladder

    between 2004 -2007 lots of surgeries some day clinic some hospitalised

    2007 went in day surgery told them i felt odd internally they found a walnut size mass didn't operate as wanted to check whether it was attached to ureter

    went to surgery as felt like a lump in my pelvic area had a scan that revealed a mass of scar tissue attached to small and large bowel 2008 had major op to remove masses

    2010 MENOPAUSE which kicked it all off again had to go through that cold turkey , done pain management a bit like talking to a councillor who recommended walking to ease the pain , i have now got gall stones and cysts on my liver the endo has got to the nerves in my leg and back so can hardly walk cannot have any operations as it would be just as dangerous and probably leave me in more pain . so im down to quality of life i have booked a holiday for my 50th in december also been invited to a wedding in september in cyprus funds allowing ill be there .

  • Huge hugs for you.

    You are right, the pain does make you just want to curl up in a corner and unless someone has it they can't possibly understand what it is like. Suggesting walking to help is so silly it's funny, I'm sure most of us would love to be well enough to do exercise.

    I assume you are taking amytriptiline for the nerve pain, but I mention it just in case you aren't. They say you have to take about 70mg to combat the nerve pain, but I have had reasonable results with taking less. Also, someone on this forum reminded me to take paracetamol as well as prescribed meds such as codeine and an anti-inflammatory and that did make a difference. Somehow I'd forgotten about the humble paracetamol tab.

    Other than that, if you can find a physio who does what I call 'medical' acupuncture, that might work for your back and leg pain. It does involve a very painful insertion of a needle, but we are used to pain, aren't we? I found it was nothing short of miraculous how it freed up 'frozen' muscles (not from endo, from an accident, but still down to nerve damage) This isn't the sort of acupuncture where you have lots of needles, it is very specific and much deeperI

    I'm sorry I can't offer more comfort, except to say that I understand and feel as you do, even though I have not yet been as seriously affected as you have. It's just not fair to have to go through this, is it.

    Take care xxx

  • I have heard that James English at Goring Hall Hospital in Worthing, East Sussex is top of his game. He does do mainly private but does do some NHS work in Worthing and Royal Sussex Hospital, Brighton. He apparently trains endo adhesion gynes all over the world! He is supposed to be obviously harder to see on the NHS than private, but worth a try. I know he believes in radical aggressive surgery to deal with this condition. I believe he is not a great believer in the diagnosis of IBS from what I have heard. He believes it is a lazy diagnosis by some Gps to what is effectively an underlying gyne condition! Anyway, if you check out Goring Hall Hospital at Worthing, West Sussex on google you can read up on his qualifications. He does talks to surgeons all over the globe. Just a possibility for your advanced problems, hope this proves helpful. Let me know how you get on.

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