RANT - No bedside manner...6 days until surgery

Yesterday I met with my new consultant who is doing my surgery in 6 days. Just to run through everything and make me feel better... Ha I wish.

I left feeling like crap! He took one look at my recent MRI and told me I need a hysterectomy, I should be having a hysterectomy, said this surgery isn't likely to stop the pain due to the level of adenomyosis! No sugar coating. I explained we are trying to have a baby, and he looked at me as if I was a crazy person.

Why oh why do surgeons, have no people skills! I've heard nothing but good things in terms of how skilled he is at his job, yet he doesn't know how to speak to people.

Needless to say I feel a bit down and delicate at the moment, and thinking what is the point!! Maybe I should get a hysterectomy and buy another cat!

I'm now worried about IVF as I got letter yesterday and the criteria for this is strict. I'm worried my BMI may be too high, but I'm finding it really hard to lose weight due to constant fatigue and lack of time (I work two jobs so have limited time).

Yeh, I'm having a bad day I guess. On a happier note the anesthetist is lovely which was comforting, and assures me I'll get lots of pain control.

RANT OVER

Sorry ladies no one else understands.

Amanda x

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  • Hi hun, im sorry your surgeon is such as ass, unfortunately they normaly all are!! Just make sure you stand up to him and dont let him push you into any decsion your not comfortable with!! Im sorry i dont have much else advice just stay strong!! Maybe even get a second opinion? ? What is he doing exactly ?? Xx

  • Well he's certainly not giving me a hysterectomy! He's just going to hopefully have a look and try to remove the cysts I have and blast as much of the endo he can. But there isn't much he can do about the deep rooted endo and he won't touch the stuff near the bowel. I sometimes think surgery makes things worse as I've had 3 surgeries for this since 2006, this will be my 4th. And last one was a full laparotomy. On average I have to have surgery every 2 year.

    Thanks for your reply xxx

  • Hi Amanda,

    Don't let him anywhere near your womb until you've read the Endo diet section. Dian Shepperson-Mills has a 6 part online vid all about how diet can help and how babies CAN happen.

    My friend follows this diet and now has a very bouncy, very loud one year old boy!

    This way of eating also makes the weight disappear. I lost a stone when I gave up just bread. You do have to be strict, but you have the perfect goal to aim for.

    Good luck. x

  • I wish I had option not to let him operate but I have large cysts that need drained on both ovaries. I will certainly have a look at the diet too though

    Thanks a lot xxx

  • Hi - you do have the option of not letting him operate. We have already established that he is not an endo specialist - his interest is cancer. And this is absolutely confirmed by what he is (or is not) proposing to do. A specialist endo surgeon would not be blasting your endo, they would be excising it, especially that round your bowel. They would definitely not be draining advanced endometriomas they would be excising them with precision to leave as much viable ovary as possible as they are just going to continue growing bigger and filling up again. The NHS itself recommends that your stage of endo must only be dealt with by a centre with a multidisciplinary team of surgeons present. I don't know why you have chosen this surgeon rather than the recommended specialists, but it's almost certain you will need another lap soon so please go to a proper specialist centre .

  • They can't excise my endometriomas without removing my ovaries, I already know this from previous operations.

    This consultant specialists in laprascopic surgery and he has a special interest in endometriosis and fertility sparing surgery that's why my previous consultant referred me to him. He's supposed to be the best, just a pity no bedside manner. It's not a matter of choosing, time is not on my side at moment I am keen to start IVF as I'm 37 and also my pain levels are high. I'm not a private patient I can't pick and choose who I see.

    I'm trying to avoid laparotomy. I've been assured of he can avoid opening me up he will. As long as I can go on to start my IVF I will be happy.

  • I don't understand why he'd look at you as if you were crazy when you said you were trying for a baby if he's a laparoscopic fertility specialist and that's why he, specifically, is treating you?! (As opposed to another - endo - surgeon at an endo centre).

    I think these surgeons with attitude need to get over themselves though. We don't need their negativity. Why on earth would he tell you that in his professional opinion you need a hysterectomy, and imply that was the only way forward that will be successful... If he is then going to do the surgical opposite. It would make me feel uncomfortable to allow him to operate on me.

    I personally would not want to allow someone who has that opinion to get near my insides with sharp instruments. It's counter intuitive. One should feel comfortable and supported by their surgeon - that they have your best interests at heart and understand your wishes. We sign a form allowing them to ultimately act on our behalf when they are operating (e.g. if they find something unexpected or a crisis occurs during surgery they may act beyond the original permitted surgery and make decisions for us). It's a massive amount of trust on the part of the patient that the surgeon will act in your best interests. They should be forging and fostering this feeling of trust, not eroding it in the pre-op consultation.

  • Hi again - as we confirmed from his profile he is interested in endo in so far as it affects fertility but so are all obstetricians. He has confirmed that he doesn't have a special interest in the complex endo you have since he is not touching your bowel. It is vital though that he doesn't as that must be dealt with in an endo centre that has skilled excision surgeons as confirmed by the European guidelines (ESHRE) that all NHS treatment is based on. This surgeon has already said he won't be excising any endo just ablating it which is not effective. This is why he will have been so surprised that you are considering trying to conceive as he will know that the situation in your pelvis at the moment is not conducive to pregnancy, yet proposes to do little about it. It is also vital that he doesn't do a laparotomy, since that will almost inevitably cause a lot of adhesions that will substantially complicate the future major surgery you will have. A precision minimal access surgeon would avoid this at all costs.

    With adeno it is pretty likely you will have to have a hysterectomy and it will be even more vital that this is done in a centre (and not by this surgeon) as your rectovaginal endo must be excised at the same time. Once your uterus is gone the rectovaginal endo will have a direct path to your bladder and ureters and will be likely to continue whether or not you retain your ovaries. Anyone with severe endo having a hysterectomy must always have their endo excised at the same time when at all possible which is a complex decision only an endo excision specialist can make. Post menopausal endo can be aggressive and is driven by oestrogen produced in fat tissue as well as in the lesions themselves.

    I know your main concern is being able to start IVF but with endo the accepted position is to excise all endo prior to trying to conceive by any means as that gives the woman the best chance. Obviously adeno is going to complicate the fertility issue too. There is another thing to consider too. If you were lucky enough to have a baby you would then need very major surgery afterwards when you have a baby to look after when it would always be best to have it before.

    You don't have NHS Choices as we do in England but a while ago I personally contacted Lothian Health Board to get confirmation that the Scottish endo specialist centres are available to patients under other boards so you do have a choice to have proper treatment. There should be no question of you being accepted as it is for your situation that the centres were set up.

    I won't respond again as I know you are happy with this surgeon which is absolutely your choice but Endo UK in line with the NHS support the BSGE in treating rectovaginal endo by excision and only in a specialist centre. So for the benefit of any others reading this it is important to state the recommended position.

  • I know of the surgeon that is doing Amanda's op. He is the same person i asked to see for a 2nd opinion. He is a member of BSGE & is an endo specialist. He is not listed on the BSGE listed centres as he doesnt have a team or ticks all the boxes such as having a specialist nurse. There is a hope that will change in the future. He works with colorectal surgeons & urologists where appropriate & does perform excision. I had the opportunity to attend an edinburgh centre patient day recently & spoke 1 to 1 with the lead consultant from the centre about my own situation and he highly recommended this same doc as being the best in my area & that I was in good hands. I have likely grade 3/4. That was the reassurance i needed.

  • Well surgery was done yesterday and the surgeon lives up to his rep to being one of the best, just a strange bedside manner. Turns out one of the surgeons working with him is my friends sister which also helped.

    I had adhesions, cysts on both ovaries, ovaries were both stuck on left side and I also had a mass they didn't know was there. This mass isn't endometriosis and was size of a tangerine. It's obviously been sent to pathology.

    He excised both chocolate cysts on each ovary and freed them to where they should be. He removed what he could.

    So it was all fairly positive (apart from the mass). I was on a PCA, drain and catheter when I got out of theatre and was kept very comfortable (well, as comfortable as I can be given the massive incision across my tummy). Today I've been de wired, de catheterised, drain out, showered and even managed to walk without crying (much)! I am a big bag of wind though and totally fear that I'm going to let rip the loudest fart ever at one stage! ๐Ÿ˜‚๐Ÿ˜‚. So if you hear about an explosion in the south side on Glasgow tonight, don't worry it's just me letting off some gas!! ๐Ÿ˜‚๐Ÿ˜‡

    Thanks for all ur advice and continued support

    Amanda xx

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