Feeling a bit frustrated 😔

[Klom81]

I got my MRI results a month ago and was told I have got extensive endometriosis throughout my abdomen, my womb is bonded to my bowel and the tube to my left kidney is also affected which is causing the kidney to swell so was told I would be referred to St Mary’s Manchester for a hysterectomy and Stepping Hill urology department for my kidney issue.

I have heard nothing from St Mary’s so far (not totally surprised by that) but I have had a telephone consultation today with Stepping Hill.

Well after introducing himself the first thing the urologist said was “as far as we’re concerned you’re all sorted”. I was a bit taken aback but did manage to muster up a response of “as far as I’m concerned I’m not”

He went on to explain they they didn’t see the point of them being involved as St Mary’s would have their own urology department and it makes more sense for it all to be done by St Mary’s rather than Stepping Hill being involved too which I agree does make sense.

I just feel like it’s was a complete waste of time and having heard nothing from St Mary’s I’m back in limbo.

Sorry I know this nothing compared to what other are going through I just feel a bit annoyed and needed a rant

[Simo7]

Sorry I can’t offer much advice. I’m guessing you’ve tried calling St Marys, can you contact your GP and then get them to chase up the referral? I usually contact the secretary of the surgeon but you probably wouldn’t have their name yet.

So sorry that you’re having to go through this, naturally you’re going to be upset: you're told one thing and then another. St. Mary’s is a BSGE centre though so maybe it’s for the best that everything is done there xx

[Silverskylark]

Hi Klom81,

I'm sorry you feel frustrated and in limbo, sadly you are not the only one. I feel like I'm going round in circles half the time, as do a lot of us on here.

I had an MRI scan last year and waited three months to hear from the hospital after my results came through, but heard nothing. My GP suggested contacting PALS as they can liaise between you and the hospital. It did start things moving and treatment was agreed whilst I waited for my op. You could try that approach and see what happens.

Things are starting to move now after the main Covid crisis, but very slowly so it could be that you have got caught up in that delay. I have regarding my op, but trying to keep my chin up.

I hope you get some answers soon

[Curious123]

Given it is impacting your kidney, I would recommend escalating with St Mary’s and getting PALS involved as needed as if the kidney is left too long I believe it could potentially lead to kidney failure, not trying to scare you, just think you should really push this as a priority.

[Klom81]

Thanks everyone.

I rang St Mary’s today and was put through to gynaecology but they said they hadn’t got any record of my referral so I rang the healthcare provide where my referring gynaecologist works and they told me they’d emailed their referral to St Mary’s and had a read receipt for the email on 28/8/2

I am being referred to Dr Edi-Osagie so I rang St Mary’s again and asked to be put through to his secretary but it just went to an answerphone. I have left my name and number and hopefully someone will get back to me.

Curious123 my referring gynaecologist said exactly the same about my kidney that it could fail if it isn’t sorted.

I don’t like being pushy as I know everything is difficult at the moment with the Covid situation and to be honest I’m not really looking forward to the operation but I also didn’t want to not say anything and find out in a few months that I wasn’t even on their list to be seen.

xx

[Lindle]

Severe endo such as you have must be treated in tertiary care in a specialist centre and Dr Edi Osagie is one of the advanced surgeons who heads the St Mary's centre so hopefully you have been referred correctly to the centre. Unfortunately the lists at centres were very long even before Covid so in view of your kidney being at risk you need to impress on them that you need to be proritised.

So that you have all the info to hand for when they get back to you I'm putting a link below to the treatment specification that applies (as produced by NHS England) so you can familiarise yourself with the process at centres.

england.nhs.uk/commissionin...

Also the list of centres. You will find the St Mary's centre on there and will see that the specialist endo nurse is Ms Tanya Mitchell and the specialist urologist is Mr Napier Hemy. Referrals are to the multidisciplinary centre not to an individual so this is the urologist who will be involved with ensuring the safety of your ureter and kidney. It may be useful to have these names so you could ask to speak to the endo nurse and/or the urologist's secretary if you feel you are not making progress in getting into the system.

bsge.org.uk/centre/page/4/

xx

[Klom81 in reply to Lindle]

Thank you I’ll have a good read through the links xx

[Lindle in reply to Klom81]

Feel free to pm me if you need any more information. x

[Daisychain222]

Please don’t be sorry! Having extensive endo is very painful and upsetting, especially if they feel you need a hysterectomy. May I ask your age and if you have had previous surgeries for endo. My experience was very similar to yours with multiple surgeries to rebuild my pelvis and a hysterectomy at 39ys. I would suggest you call your surgeons office to see what they can do to get your situation sorted out. I apologize if I am off base, but I live in Canada and may not know how this work where you are located. A hysterectomy is no joke and depending on your age, and need for HRT, you will need proper support.

I truly hope everything works out for you soon🌸

[Klom81 in reply to Daisychain222]

Hi fortunately so far I’ve only had one diagnostic laproscopy. They are planning on doing all the other procedures in one go as far as I am aware. I am 39 too xx