Severe Endometriosis and Incompetent Medics

Hi all,

Sorry for the long post but i need to get some of this off my chest.

I'm 34 and married with no children. Like many of you i have suffered with heavy periods and pain since my early teens. I was told it was part of life and left it at that. Over the years i had many symptoms of endometriosis which were misdiagnosed or ignored by both myself and my doctors and 8 years on the depo injection further helped to mask these almost completely. After coming off the injection i was sent for several ultrasounds both internal and external which found nothing and in the end i gave up the investigations and decided to just get on with things as many women do.

Just after Christmas last year i was rushed to hospital with severe abdominal pain. After several days in hospital i was finally taken for an exploratory laparoscopy where it was discovered i had a ruptured cyst and severe endometriosis. About three weeks later i was back in hospital with pneumonia and a partially collapsed lung brought on by a chest infection which was complicated by having been under a general during my lap.

I saw the gyne consultant on the 20th of Feb where she explained about the diagnosis, advised i was almost certainly infertile, found a golf ball sized cyst on my right ovary, referred me for an MRI and colonoscopy, and offered to give me a medically​ induced menopause. I have rejected this so far but have kept my options open. She told me that my uterus is attached to my colon and that the tests would enable them to decide what my excision surgery will involve.

I live in Glasgow but about four weeks ago i was sent to Inverclyde hospital for my MRI. That's an hour away in a car. I spent an hour letting two nurses and a doctor attempt to put a canula in my arm. They gave up despite my willingness to let them continue. All in i had fourteen holes in my hands, elbows and forearms. I have since found out that my MRI images were useless because they couldn't give me the injection.

I was then sent to a much closer hospital three weeks ago for the colonoscopy. There was no visible signs of endometriosis but they found six polyps, removed two and i have to go back for the other four to be removed in two months. The doctor who completed the procedure had no idea why i was there and I was told that they ran out of time but have since found out that my medical records state i was too distressed for them to continue. I'm so angry that they have put this as i told them i was uncomfortable but at no point asked them to stop.

I called my gyne consultants secretary yesterday chasing my follow up appointment but was told there was nothing in my notes about this! She did however, email the consultant and advised she would call me back. I have also been slowly phasing back to work over the last month but have been suffering from exhaustion and increased pain so visited my GP yesterday where i discovered the MRI results and found out about the incorrect notes made by the gastroenterologist. My GP thinks that the exhaustion stems from a mixture of the pain killers, trying to do too many hours at work too soon, and the psychological effects of my diagnosis. I have also called my consultants secretary and explained about the results and that i need to know if they intend on completing a further MRI with competent medical staff who can stick a damned canula in someone's arm!

To be honest my already tenuous faith in the NHS is being eroded so badly at this point i don't know what to do.

(I should probably tell you at this point my husband has a rare eye condition and has already had a botched corneal transplant which was completed a month after they lost the first donated cornea. They had him in a gown and told him it was missing five minutes before he was due to go down on his original surgical date. The subsequent surgery was an 'emergency' transplant a month after this).

These people are supposed to be doing surgery on me in the next few months and i have no trust in them at all. I feel like I'm being lied to, given misinformation, being dealt with by incompetent staff and all while having to contend with the consequences of having an undiagnosed disease for twenty years.

My only saving grace is my support network of family and friends. My husband especially is amazing. We were thinking of starting a family this year but now know this won't be possible without help. He has made it abundantly clear that his only priority is my health and well being and his patience is a god send. I just feel like it's taking over our lives.

I'm sorry for the rant, this isn't even half of what's happened/happening. I'm just so upset. I'd really appreciate any advice you may have and see if anyone else has had a similar experience.

Thanks.x

6 Replies

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  • Who is it that is 'supposed' to be doing the surgery as severe endo must only be dealt with in a BSGE accredited endo centre. Immediately after the exploratory lap you should have been referred on. I am putting the NHS contract that, despite being produced by NHS England, applies to the whole of the UK (as confirmed in the recent RCOG Standards for gynaecology care 2016 that requires women anywhere in the UK to have equal access to specialized services).

    Contract:

    england.nhs.uk/commissionin...

    RCOG Standards

    rcog.org.uk/globalassets/do...

    BSGE list of centres:

    bsge.org.uk/centre/

  • It's the local clinic. I've already checked the accredited list and the only one is in Edinburgh. There are only two in the whole of Scotland.

    I was going to see what the consultant says about the surgery at the follow up (if i get one!) and make sure it's not laser excision before asking to be referred over there. It's not exactly close though and i don't want this to drag on any longer than is necessary.

    I guess I'm hoping that my crazy hormones are making me look at this in an unreasonable way rather than there actually being a problem.

  • Is it a dedicated endo clinic that fulfills the BSGE criteria - that is, tertiary highly skilled excision surgeons trained to the same advanced standards as required by the RCOG, working in a multidisciplinary centre, submitting their data to the BSGE, submitting a video of their excision work, doing a required minimum of severe cases annually? If not they would be working against the NHS and BSGE specification if they were to operate in a local gynaecology department. They don't get to choose - yes, there are two in Scotland.

    Most excision surgeons use laser now.

  • I thought i read that laser excision isn't as good?

    I guess I'll need to find out. Is there a way to check this other than asking the clinic? I've been on the BSGE website and found the list if centres but do they have lists of clinic that fulfill that criteria?

  • No, as far as we are aware there aren't any independent of the BSGE that are working to the criteria.

    Laser is a tool not a method. It can be used to cut (excise) or to ablate by vaporisation.

  • Definitely get referred to Edinburgh. I've had an excellent experience. My first appointment was actually in Livingston, so closer to you. PM me if you have any questions. Xxx

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