Please need some support and guidance

[Faithstar]

Hi all ok trying to cut a long story short here , I  have been diagnosed with stage 4 endo on bowel and bladder , I was referred for full / hysterectomy and bowel reconstruction  surgery .  The long and short is I have been on the waiting list for over a year and have had 3 pre ops and no surgery.  Yesterday I revived a call from the hospital to say that they have a date for me 10th November 2022, The hospital informed that my last preop had expired and that I should come in today for pre op.  Obviously I had so many questions and lady on the phone informed me that someone will be available to answer my questions on day of pre op.  I have come in to have pre op and pre op team can not answer any of my questions.  And just handed me a letter that tells me wht time I should be in hospital and that I should not eat anything from 7am onwards .  I then queried about the bowel prep and injections that I need to self administer no one seemed to knw what I was talking about.  I then asked to see the colorectal nurse as I needed some clarification. I was then informed my surgery was only being done by gynaecology consultant as colorectal surgeon not available.   I don’t understand why I am not getting the surgery that was discussed and what I have been waiting for .  The  consultant is not available for questions his team have no answers , how can he go in alone when I have been told that colorectal surgeon needs to do be part of this and the urologist will be on call.  I am so confused and upset and don’t knw where to go to the nurse said I can decline the surgery if I wish but what does that mean for me. I have been told they will try to see if someone can call me to explain the change but can not guarantee it as the consultant said he will speak to me on day of surgery  I feel like I’m going mad  I am so upset and really don’t have a clue as to what to do .  Feeling so so low and alone

[Lindle]

Are you in England?

[Faithstar in reply to Lindle]

yes London

[Lindle in reply to Faithstar]

This is terrible. I assume you are under a specialist endo centre with a multidisciplinary team?

[Faithstar]

I am with a local hospital and yes under multidisciplinary team , who no longer are part of surgery. I have been advised to contact my local MP so will be doing this

[Lindle in reply to Faithstar]

So is it a named endo centre on the BSGE list located in your hospital?

[Faithstar]

no unfortunately it’s does not have a specialist endo centre . It’s just a local hospital that told me they can treat me

[Avourneen]

This doesn't sound right at all, I don't think they can do the op without the relevent specialists. I think your MP is a good idea, the actions they are taking seem to be completely out of line with all the guidance. I would say don't have oit doen if they don't have the right specialists, they might do a really bad job and this could cause loads of problems. Lindle knows what the correct pathway is, she's a good person to ask for advice. It's avrey big and very specialised op with lots of risks I don't think it is safe without a colorectal specialist, tbh I'm not even sure if it is legal.Yu can e mail your MP and if they are any good they will get back to you very quickly. I hope that will help.

[Faithstar in reply to Avourneen]

thank you for your reply, I am so distraught about everything , and feel so lost. I spoke to a member of the admissions team at the hospital he was unable to answer any of my questions but agreed that the procedure was a joint procedure and could not understand why the the gynaecology consultant was not involving any one else. I was told the gynaecologist was unable to call me or answer any of my questions until day of surgery, and I argued that was unacceptable. I was then told one of the gynécologies t team was going to call me on Friday I waited all day and no call. I have contacted my MP and he was great he was appalled by the way I was being treated and and has wrote an email to the director of the NHS trust I am under . This is becoming so exhausting and so stressful I can not understand why they are making me feel like such a burden 😢

[Neurontl]

Have you contacted PALS the patient liason service at the hospital? It may be worth talking to them. Have you checked the NICE guidelines on the treatment of complex endometriosis? It doed not sound right that you have not been referred to a specialist centre. I would also recommend talking to your GP about your right to a second opinion from a self selected consultant.

[Faithstar in reply to Neurontl]

Hi , I have contacted PALs , and was referred, To the spokes person who agreed with me and advised me that the I need to speak to the consultant . He told me that he would get one of the team to call me on Friday and gave me his contact number when I did not hear from any one I called him and he was very upset that they had not contacted me after telling him they would. He agreed with me that this consultant was very difficult . I have always had problems with this consultants attitude but just kept overlooking it as I felt I needed this procedure. I no longer trust this consultant . I am now waiting if the Mp has any luck. Mp is great and wants to meet me and chat in person he is the shadow health secretary

[Lemoncake95]

Hello, I'm sorry to hear you are going through this.

I've also been diagnosed with stage 4 endometriosis following my diagnostic laproscopy. Also told it is in my bowel and bladder and I'm 27.

Of course I know every individual is different, but I was wondering why they came to the conclusion to do the bowel reconstruction and hysterectomy..

[Faithstar in reply to Lemoncake95]

Hi hope your ok sorry to hear you have stage 4 endo on your bowel and bladder. I suffer from horrendous pain when defecating and urinating and all that goes with it. I have tried so ma y different pain management routes but nothing has worked, surgery was the last option and I did not take the decision lightly. I am so tired of planning my life around toilet facilities.

[Endofighter80]

Hi in awaiting the same surgery as you I have stage 4 endo and need total hysterectomy and bowel surgery.... they need a bowel surgeon this is what my gyne told me.... I hope you have got it sorted and the gyne isn't doing the surgery alone xx

[Faithstar in reply to Endofighter80]

Hey so sorry to hear that , I hope you have a better team than mine and get surgery date soon .x

[Crazycatladyjones]

Yes try to contact the PALs at hospital. You need answers after waiting that long to whats actully happeningGood luck x

[Faithstar]

Hi

I have contacted PALS they are trying but have had no luck. This all just seems so wrong how can I go ahead with something that I have no idea of what will actually happened I derive to be consulted and at least given an explanation for the changed route.☹️