How can we teach NHS workers with our experience?

I'm 4 weeks post-lap right now, and I haven't been here for a while due to the fact that I was just exhausted with the subject in general.

My history (as brief as I can be, which isn't very...): I struggled with period pain from the start, heavy bleeding, then rupturing ovarian cysts, then 8 years ago diagnosed with endo when a failed lap procedure-turned-laparotomy produced excision of a chocolate cyst on my left ovary, and ablation of lesions. I had a subsequent laparoscopy scheduled which again went to laparotomy 8 months later, largely because I didn't know anything about the disease, didn't know I could find a doctor that specialises in treating it, and stuck with the same inept surgeon who's default [in the private sector in Ireland] was to take the case even though he wasn't skilled enough to deal with it. In the second surgery he removed my left ovary and tube due to extensive adhesions, but I don't know if the ovary itself was exhibiting any actual damage.

I have been extremely active in outdoor sports since then which might have been the thing keeping me on a relatively ok path until it all caught up with me again in earnest starting last year, with pain up in my right upper abdomen. I was referred to a GYN in the NHS a little over a year ago who did an internal scan when I expressed worry that I might have endo lesions growing again. She said everything looked fine, and wanted to put me on Zolodex which never seemed like a decent option for me, and I didn't go with it even though my GP pressed me about it because as last year progressed I was experiencing more and more constant pain. Menopause and HRT seemed like a complete gamble of unforseen problems, especially when I was experiencing non-cyclical pain in my pelvic region as well we my upper right abdomen. I also was outspoken about the fact I felt certain that my remaining right ovary was healthy, which of course couldn't be confirmed by anyone else. I was outspoken about fear that I was suffering severe adhesions due to endo which were causing me non-cyclical pain, but couldn't get anyone to get me on the road to confirming that. Meanwhile I had an abnormal smear and had a LLETZ and hysteroscopy last Feb, after which I was told my womb looked "perfectly healthy", though the notes reflected my uterus was "bulky and fixed".

I was repeatedly fobbed of in A&E and my GP because my blood obs showed all was well with my organs, despite the fact that I was in so much pain I had stopped working last Feb. I was referred to an abdominal pain clinic to check my kidneys, liver and gall bladder just to be sure it wasnt stones or anything more sinister, though I kept reiterating that I was certain it wasn't stones, But it took months to get the scans done. After one of many A&E visits begging to make a scan of my kidneys and gall bladder get done sooner so I could get referred to an endo specialist which I knew I needed (I felt like I was jumping through hoops trying to arrive at being seen by the right kind of doc) I was also sent to an emergency gyne clinic in Belfast where I live. Less than a year after the first GYN had done an internal scan and said everything was normal, the emergency GYN said my right ovary was hard to distinguish and appeared to be adhered to my uterus, and my uterus was very fibrotic. All this after being told by TWO gyne doctors that my womb, and everything, was healthy and me insisting it wasn't. The emergency GYN's notes about my case have never EVER made it into my patient files. I don't know the doc's name, and don't know what happened to any of the recommendations he made on my case. Going to him was like a grain of hope that I might be taken seriously for the first time, but the fact that his opinion was never entered on my case made it effectively completely useless to me.

As I am a dual American citizen, I finally decided I couldn't take any more. I had a referral to a BSGE specialist in Northern Ireland but the wait time just for consultation (not treatment) was too long. I took myself off to the States and just returned home a few days ago. I chose a fantastic doctor near my parent's home who also taught at university who specialised in treating endo radically with robotic surgery. He LISTENED to me, looked at all the information about me I had to give him about my case and history, he gave me his email address and always responded (often within minutes), and he addressed all of my concerns including my wanting to keep my remaining ovary so I wouldn't be forced onto HRT or into menopause. His aim was to preserve all that he could, when it was appropriate, and removed everything that needed to be removed with a view to minimising the possibility of occurrence or compounded complications. He also supplied me with pictures from the procedure, a video from the scope of the whole 3 hour procedure, a detailed surgical write up and pathology notes.

What I had suspected about what was going on within me was exactly right. There was nothing wrong with anything in my upper right abdomen, not my diaphragm or kidney or gall bladder or liver, the constant pain I was in in that part of my body was due to the fact that I had a very fibrotic uterus, and my colon was wrapped right around my uterus and densely adhered to it, as well as adhered back in on itself, and there were endo lesions on my rectum, left ureter, and other sites that were deeply excised. The dissection of my colon took 2 hours, and that alone cured the constant tugging in my right side that had prevented me from living a normal life. My right ovary is described as "grossly normal", and it has been preserved on its own. I have had a total vaginal hysterectomy (cervix/uterus/right tube... no more smears! yay!).

What frustrates me is that I, as well as all of you, are here on this forum begging for help and answers and advice of each other, and many of us are long-time endo warriors who understand the disease and know our bodies and have some idea of what's going wrong in there, and that must be worth something. It should be of interest to the medical world what we are experience versus what the clinical findings are. GPs and so-called specialists on either side of the imaginary dividing line between "abdominal" and "Pelvic" regions need education about not compartmentalising their "departments" in cases where someone already has an endo diagnosis, and to be a little investigative holistically in cases that haven't been diagnosed.

I feel angry that I lost faith in the NHS here and bailed off to the US. I feel angry about the begging and cajoling to GPs and A&E and at least four different consultants I had to do while in debilitating pain just to get on the path to a referral to the right doctor. It beggars belief. I feel angry on the behalf of all you endo sisters here who are without the real help and support you need because the NHS is so wildly inept with taking us at our word that we're in trouble.

I want to know if any of you have advice about how I can bring the anecdote of my experience with the ultimate clinical findings to have some bearing on how medical professionals treat women in our position. I would love to throw the video in the faces of the GYN who wanted to feed me Zolodex and the nurse in the A&E who shouted at me my obs were fine and so surely I was ok enough to get off the floor and sit in the hard plastic chair I'd been in for 5 hours, and the consultant in the abdominal pain clinic who sent me a letter saying there was absolutely nothing wrong with my organs or digestive tract. I need these people to know that the picture was much more complicated than that.

My love to all of you. xx

8 Replies

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  • You are so right our story's need to be heard and we need to find a way of getting the message out there to the masses it took me 2 long years and a refused surgery with a general gyni to get referred to a specialist treatment centre and what a difference it made the consultant was amazing actually read my notes and treated me like a real human being and not like a nutcase!

    And after general gyni diagnosed minimal endo on ureter he found widespread endo on uterovesical fold left and right bilateral uterolosis 2 die nodules and excised pouch of Douglas maybe now my pain can be understood...

    But I think the most damaging to us ladies is our mental health at not being believed...

    But I agree maybe we do need to send results to all we have been in contact with that disbelieved us and to make them re-evaluate the way they treat us and other endo patients even if it takes our stories 1 by1 to make that difference or make a so called professional to think twice it will be worth it. Xx

    From Sharon also post op 13.06.15. Xx

  • Agree with Sharon here.

    Perhaps the endo charity could collate our stories and do something with them? If there are enough of us, then surely they could get someone to do something.

    # abdominal pain is endo too

    #listen to endo sufferers

    # scans don't show endo properly, so doctors shouldn't rely on them.

  • I can't believe what you've been through! I told my bf and he said that you should sue!

    I'm a fellow abdominal pain sufferer here - still fighting to find out what's going on. I also work for the nhs (but not in a medical field -I'm a lowly admin person ). I completely sympathise with your frustration. I hate the people like us have to constantly dredge up energy to fight for our cause,because doctors won't.

    If I were you, I would complain to the PALS department. That would at least get some action at your local trust. That nurse who screamed at you deserves disciplinary review.

    However, if I find out that I have long term kidney damage because of shitty doctors fucking around and not listening. ..I may go to the newspapers or sue..Or (insert evil laugh here) complain to the pals department , copy in an mp, and copy national newspapers in.

    I think the whole treatment of endo in the medical profession needs a radical review. Personally , I don't believe that it will change until something happens to make the NHS realise. Something big..like getting sued, getting pressure from the government or probably most effective of all- their awful lack of treatment landing up in the papers. Seriously, a trust shits itself if anything bad lands up in the papers.

    At the very least you could complain to the PALS department, & possibly copy in all the doctors who "treated" you and the nhs England comissioner for the trust . I reckon you could sue for loss of income, because they could have helped you ages ago if someone had only listened to you!

    That nurse who screamed at you- her name will be down in the system , as either having taken your ons or reporting them to you. They write notes like that in the a&e system.

    Sorry I seem so vengeful..but this,along with my own treatment makes me furious. At the end of my journey ill be complaining( docs just need to find out the cause of the kidney pain which I've had for 9 months without diagnosis or treatment! )

    Hope you finally getting the treatment you need.

    massive hugs

    Xxxx

  • Hi Molly - it' s so good to hear from you and know that finally someone took you seriously. It does beggar belief how women are so often treated on the NHS with such utter ignorance of the disease and some sort of overriding attitude that it doesn't actually exist when you are completely immobilised with pain as you were. All it needed was for someone to look inside. How hard was that? I think you should take it to the press. More people are doing this. This is an case in Scotland. x

    bbc.co.uk/news/uk-wales-198...

  • Hi Linda! Thank you so much. I don't know why I haven't thought of going to the press, but like Angelyn says, as well as you, maybe that's the starting point. I never wanted to be an endo soldier. To be honest, I would love to just move on and get on with my life... but I can't. How can I?! I'm ok, I have some expenses to pay because I elected to go to America and get the treatment I knew I needed more promptly because I lost faith that anyone here would do as good a job, but I'm ok... hopefully that was the last surgery I'll need... hopefully. But I can't just go on knowing that there's such a glaring oversight of such a huge population of women in real trouble. xx

  • Hi Moxyfilms,

    I missed you around here and thought of sending you a PM but I too have had surgery recently and was caught up with all that.

    The main thing that seems to be broken is the usual lack of education among GPs about endo and who the most appropriate person is to refer us to. I don't believe endo centres are doing enough to advertise their presence and when they should be used but I suspect there might be a reason. Anyone on this forum who does get referred to an accredited centre in the UK has a long wait for initial consultation and also a long wait for surgery. It's clear that endo centres can't cope at the moment so their workload would only increase if the referral system actually worked and GPs actually knew to refer women to endo centres.

    But the other issue is that not all endo centres are equal. I can testify to that. I've had surgery by 2 different endo specialists. One useless, the other very skilled and dedicated. I travelled a few hours to see her. Having said that I think that being referred to an accredited endo specialist is on the whole far better than seeing a general gynaecologist. It's too much of a gamble. Many gynaes haven't a clue about endo and if they do they should refer on to an endo specialist instead of doing a botched job themselves.

    You have encountered difficulty every step of the way which sadly is not unusual. It would be an uphill battle to try to change that but Anglyn has some good suggestions.

    My beef is with the BSGE and RSOG. I think these might be the organisations to put pressure on too. The BSGE has a list of criteria that endo centres must fulfil to get accreditation and I believe that there needs to be a patient feedback element to this. There is nothing in the BSGE system that records my experience at the hands of a lazy endo 'specialist'. What is the point of an organisation like this if women like you get treated so shabbily. They should know about these cases and the appalling level of mistreatment of women with endo. Also RSOG. I note in their "Standards for Gynaecology' overview here rcog.org.uk/en/guidelines-r... there is no mention of patients being consulted.

    I'm rambling now. Really glad you finally had surgery with someone who listened but really sorry to hear about all you've been through and the lengths you had to go to to get the treatment you deserved.

  • Here, here!

    However after 20 years of suffering and being made to feel like a whining woman at times my ambition is lower.

    I would settle for all GP surgeries and general gynaecologists knowing about the existence of the BSGE accredited endo centres!

    It still baffles and infuriates me that many don't despite the fact that endo is one of THE most common gynaecological disorders affecting women!! How can they not know?!?!

    Thanks for sharing, x

  • Ok so maybe we need to get

    As many of us as possible to

    To do something collectively by telling our stories and getting the message out to masses weather that be a magazine directed at solely endometriosis to give our stories and best advice for treatment that has been proven !

    I would say I'm a great ideas girl but need help to get it to

    The right people ! So if we can find ppl whom can each bring something to the table we can get the correct information out there and by doing this can help the masses so the don't have to suffer like many of us have!

    If we have some willing participants maybe we could put our heads together to drag this disease out into the open and allow a better level of understanding so any further feedback or anybody that would like to get involved please put your name and area down so we can take this to the next level..

    Let's hope we have some warriors ready to take on this mammoth task but I'm willing to give it my all. X

    Together we are stronger

    Endo warriors let's fight. Xc

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