They cancelled my operation !!!!! And prostap????

I am absolutely gutted, confused, angry, sore, defeated, drained, upset, everything you can imagine.

So yesterday as some of you know i was due to get my laparoscopy to remove my now 13cm!! Endometrioma cyst which has now twisted round my ovary and tube so also she said she would have to remove those!, to insert the Mirena and to do biopsys and remove the endo where it is.

I had managed to make arrangements for my kids to be looked after, I got to the hospital for 12.15pm. I saw the nurse who gave me my band and went through my notes, then I saw one surgeon who confirmed what they were doing, then the consultant came down and then the anaesthetist. So all good? Yes? So I thought.

I was panicked so they wrote me up some tamazipan, and I was moved to the bed to rest whilst I waited as I was next on the list.

Then the anaesthetist and my consultant come back in the room about 4.30pm, I think yes, let's do this!

No, it would seem, after all these months of agonising pain and purely only existing for this moment, they had decided to take it away from me.

Apparently when I was last in hospital, about 2 weeks ago via ambulance. They did some bloods, those bloods showed my thyroid function to be 'deranged' so from what I can remember *I was wailing like a baby* they said (and he checked with his senior anaesthetist) that it's too dangerous to operate on me whilst my thyroid is not stable.

So I'm not understanding this and I'm arguing and crying and sobbing my heart out because they're telling me that until I've been to my doctor and had treatment and got it under control I won't be able to be booked back in, I heard 3/4 months and then went ape shit. I said how can I be expected to live how I am for that extra time, I can't even bath my self, get my kids to school, or properly do anything. She just kept saying 'I know, I know' I felt like punching her!

So then my friend who accompanied me says why can't they do it spinal block etc, and apparently they won't touch me at all. My anxiety and chest pains which has had me in hospital quite a lot recently 'could' be to do with the thyroid.

I'm furious that nobody picked this up prior to me coming in, being admitted, being given my relaxing drugs etc.

What's worse is that my own GP refused to prescribe me anymore morphine sulphate yesterday because I 'wouldn't' need it anymore as all the pain would be gone.

So now unless I can change it, I have a telephone slot on Friday morning.

So then my consultant who I seriously wanted to punch, then starts waffling about an injection that she can give me that will apparently put me in temporary menopause and will stop my cyst growing and control the pain. Is this correct?

She give me one in my bum, and booked me into a clinic to come back in a months time and then again in May.

I was really upset and crying so I don't even know what I've had injected into me.

Please can somebody explain it.

Oh but I did find one thing out. My hospital also has an endo specialist Mr Roy, and I've been booked into his 'pelvic pain clinic' as she thinks my case is now too advanced for her (she's a general gynae) so she's referring me to him so that when the time comes. He can sort me.

I am so defeated right now, I'm in so much pain, I just wished it was pain from having surgery.

Don't get me wrong I understand it was not safe to go ahead but why the hell did the consultants, and my GP not realise this before I was there, gowned up and pre medicated! Surely if these tests were done weeks ago, and have been in the system, why the hell were my consultants and GP not informed I needed treatment for my thyroid?


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23 Replies

  • I totally empathise with you.

    I know you're angry about this now but they wouldn't have deferred your treatment without good reason.

    I'm sure by Friday you'll be ready to have that conversation with your doctor.

    Write a list of what you want to ask, what treatment they are giving you for the thyroid issue, how long will it take to stabilise, who will be managing your case, how soon can you be booked in for an operation etc.

    I was having treatment for acne and had a problem with my liver that only showed up in my pre-treatment blood test. So my treatment was deferred for a month. Frustrating, yes but I trusted my consultant's judgement and duty of care, to ensure I was fit for treatment.

    Good luck and hopefully your thyroid will be better and you'll get the treatment you need.

  • Hello and thank you for replying. I understand they've cancelled it for good reasons. I'm just deflated as I've been waiting for this for so long and had finally came round to being more positive in thinking, yes! Finally my life will start to get back on track, and then when they both walked through the door, I just knew it was bad news! I'm so just annoyed that nobody picked up on my thyroid issues before hand so I didn't have to be messed around. I'm planning to write a new list of questions. All the ladies on here who reply are fantastic in making sure I ask the right questions! So thank you.

  • You'll be fine x

  • Hello, I'm so sorry to hear your operation was cancelled as I know it's devastating for you with all your pain. I know how much you wanted to get it done from your other post so I also really empathise with you.

    It's good that you are being referred to an endo specialist. As harsh as it is they do need to make sure you are safe for surgery before they can operate.

    The NHS constitution states that patients should be treated within 18 weeks from their initial clinic appointment but if you are unfit for surgery that would be an exception. However once you are fit I think you will be booked in quite soon if you have already passed the 18 weeks. I waited longer than that as I was sent for a further scan and they wanted to ensure my cyst wasn't cancerous. So by the time I went into clinic and they decided to do surgery I had a date a week later for about a month's time. Once you are listed for surgery again you can always ring the waiting list office at your hospital to chase things up.

    I hope they can sort out your issues quickly so you can get another date soon.

    Thinking of you x

  • Hello, yes I feel better knowing she is referring me to an endo specialist now. I did a quick google and he is actually mentioned on the Endo U.K. Website and so is my hospital which I didn't know! I've been doing some research and although I don't know wether it's over active or under active, it says that morphine sulphate can mess with thyroid blood results, so I will surely mention this to my GP. Thanks for replying to me x

  • Hi. I completely empathise. My hysterectomy was cancelled, with a few days notice but I'd built myself up ready for it. However with hindsight it was for the best, as I'd been outsourced to a private hospital with a general gynae( wasn't aware of this) but due to the severity of my endo I needed my endo specialist to do it.

    In terms of the thyroid issues, I have an underactive thyroid and take thyroxine. When I was waiting for my second lap the hospital cancelled 2 times saying my levels weren't right. Yet my gp said they were fine. It seemed they worked with different parameters, which is not helpful. My gp and I worked with the hospital and they actually changed the policy regarding this issue.

    This needs to be addressed as it could explain some symptoms. Mine were quite extreme and I thought i was really unwell mentally, I was constantly cold, my shower was blocked with hair, I was forgetful. Your gp has a responsibility to address this, and not just via a phone call .

    If they suspect endo, and feel it's too complex for them then they need to transfer you to an endo specialist rather than delay.

    Don't take no for an answer. Really hope you get sorted soon x

  • Hello, thanks for replying. Oh that's quite interesting how the GP and the hospital had different parameters! I will question this on Friday. I've also just learned via google so not sure how true it is that my pain killer morphine sulphate can effect the thyroid results. Thanks for the advice and I will I don't not be back to update as soon as possible x

  • Gosh Hun how traumatic for you when you're all geared up for the surgery and looking forward to feeling better, it's such a shame they couldn't find out about your thyroid before you got this far 😔

    I'm currently on prostap for three months but I have been on it for 6 months previously too and for me it really worked for my endo and is doing again now, and my side effects aren't too bad either, certainly much easier to handle than endo symptoms. Of course we're all different but I just want to reassure you that prostap is good at what it's designed to do (put you into a medicated/temporary 'menopause', switching off oestrogen which feeds the endo so therefore halting symptoms) and can bring much needed relief. I hope that's the case for you and you can get sorted and have your surgery asap xx

  • Hello, thanks for letting me know how you're experience was with prostap. I'm glad to hear it's positive. I've had a killer headache since coming home, I thought it was stress related from the cancellation but now I'm thinking maybe it could be a side effect especially as I've been sick twice this morning for no apparent reason. It was awful. I shall most definitely be looking into the side effects more.

  • I am so sorry to hear this. I feel angry for you. What i will say and i know this is maybe not what you want to hear but you may well have dodged a bullet. You are now being referred to a BSGE surgeon given your symptoms this is absolutely the right thing for you. But totally understand the build up to surgery and the utter disappointment you must be feeling.

    Sending you lots of gentle hugs x

  • Thank you for the gentle hugs! Yes I can see they did the right thing by not risking my health and possibly having a bad experience, it's just heartbreaking to be told they can't operate after all. Ughhh. Let's hope this new referral comes soon and my GP gets to the bottom of the thyroid issue. X

  • I agree it sounds like you've dodged a billet. But if you're still feeling angry in a couple of days time, remember you can complain to your hospital via their PALS system. As you say, it's hard to believe that they didn't check those thyroid levels before prepping you, you would have been saved a lot of stress if they had!

    But yay for getting seen by a proper endo specialist instead!

  • As everyone is saying, they've done the right thing, but it's a horrible position to be in, especially when you are so ill.

    With regards to the prostap (I am on it at the moment) you need to be aware that it may take a few weeks to start working, so don't expect results within a couple of days. It is also normal to get a hormone surge in the first month, so things may unfortunately get worse before they get better. Once the menopause kicks in and your hormone levels start to drop, the main side effects include headaches, hot flushes/sweats and you may have some trouble sleeping but your bleeding should stop and in theory this should give you some pain relief.

  • Did you get headaches with it? I've had a killer head ache since coming home, first I thought it was due to being upset and crying, but I haven't cried as much today so wondering wether it could be a side effect already? I'll research them a bit more I think.

  • Yes, absolutely banging headaches, especially in the first month. They're a really common side effect and as I recall, kicked in very quickly. I've been on it for nearly 8 weeks now and they are starting to subside a bit so it's not forever.

  • Oh gosh, 8 weeks worth of headaches. Did you have your normal endo pain aswell during that time? My pain is daily and excruciating. I really don't know if I like the sound of headaches / nausea (and now bum wee's to boot!) plus my usual pain. Ugh if only we all had a magic wand. X

  • So sorry to hear what you have been put through.

    Have you ever been referred to a Specialist Endo clinic - a BSCG Clinic??? I was surprised reading your post when you said they are (only now???) handing you over to an endometriosis cspecialist.

    It sounds as if they did - sadly - take the right action, but the thyroid issue (possibly) should have been spotted before. Also, as your condition is so bad I don't understand why your GP or someone else has not considered an Endo Specialist before now. I would talk to the advisors at 'Endo UK' - link to their site above - and see if they can offer any more advice.

    Take care.

  • Hello, thanks for replying. I've never been referred to specialist before, I've only ever seen my gynaecologist at the hospital who is just a normal gynae who knows a little about endometriosis and what not. My GP is useless I've been fighting for someone to take me seriously for years, it was only when I was rushed to hospital in November and had tests and scans that they discovered my situation and started to act upon it.

  • Oh sweetheart I've read through this post and I just don't know what to write, it feels like there's no words that will soothe your pain. I agree with what other ladies have written and I haven't got any practical advice as such. In the short term, if your pain levels become intolerable then don't hesitate to go to A&E, although they won't be able to cure the problem they at least can give you effective pain medication. It's journeys like yours that make me so angry; in an ideal world scheduled surgery needs the appropriate planning and checks before being placed on the elective list. Patient safety is paramount, however, surely problematic blood results should be flagged well in advance of admission? Therefore patients wouldn't experience the emotional distress of having a operation that is cancelled sometimes minutes before they're wheeled down into the anaesthetic room (I'm a theatre nurse and see this firsthand fairly regularly). On a positive note like most ladies have suggested, you're now going to be seen by a may well have been that even if all your bloods were within normal parameters then the operation may have been in vain. You would have had to have subsequent surgeries as the general gynaecologist wouldn't have possessed the skills to fix the problems. Perhaps I'm clutching at straws here but I'm trying to find something positive to grasp! Xxxx

  • Having had my first surgery with general gynae, I 100% agree. The gynae cheerfully told me he was going to laser out the endo and fit a mirena and I would be fine - I came round from the anaesthetic to find that he had completely underestimated the extent of the disease and not touched any of it, and not only that, he had nicked a blood vessel and I had internal bleeding which landed me in A&E a few hours after being sent home. I've had 2 children without pain relief and I can honestly say the pain of that botched surgery made childbirth seem like nothing. I've since had further surgery at a bsge centre and am having more surgery next week.

  • Thank you so much for trying to stay positive for me and helping me to see the positives to this sad situation. Although I'm still pretty bummed to be expected. Xx

  • Lindle

  • Ooops, sorry that was a mistake - although one of my posts has just completely disappeared. Read up about BSGE Centres on the 'Endo UK' site, and talk to their advisors about getting your Dr refer you to one. GPs are supposed to know when to do this!!

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