Transferring bgse centres

[Bethleah]

Hi has anyone moved bgse centres. I now have one closer to home and the one I’m currently with aren’t really helping after being with them for nearly 2 years I’ve got worse. Even their urology consultant in their sister hospital says they are causing a diversion. They are supposed to be a centre of excellence. Is this possible and has anyone any experience of this?

[marina_simba]

Hi Bethlea. Unfortunately, yes, I have experienced this. I was originally seen in London and was very happy, but recently had to be re-referred to Oxford where I now live. I had to wait months for an 'urgent' scan, appointments were not made even when correspondence to me stated that they had 'taken the liberty of arranging an appointment' for me, and I just found the whole process to be very slow. I don't think it helped when I mentioned my worries to some of the clinical staff and they admitted that they were wonderfully under-resourced... The final straw for me was when I was told that my MRI scan showed the presence of bowel endometriosis and their plan was to place me on a progesterone only pill and see me again in 6 months. If I'm honest, I freaked out slightly that despite my bowels having been previously clear (I was diagnosed with stage 4 bladder endometriosis in 2014) and having the mirena coil since then, the endo had somehow managed to grow to come back and grow to such an extent that it was visible on an MRI scan. I know how fast endo can grow in me, so I requested to switch to the London centre, based on the fact that I felt Oxford were being too slow and that if I needed surgery in the future, I would be recovering at home in London so it made sense anyway.

Fast forward to London - I booked a private appointment to give my consultant the MRI scan to speed things up and they also carried out an internal ultrasound on the NHS. The ultrasound said that everything was fine and they saw no evidence of any bowel adhesion, which was very confusing as this completely contradicted what Oxford said. At my second NHS appointment when I expected to hear the second opinion re. the MRI scan, I was told that my consultant had forgotten to give the scan to the radiologist until the day before, so that was a complete waste of £250 for the private appointment... As the progesterone only pill wasn't stopping the bleeding (it was in fact just making it worse), they prescribed Microgynon. I was told that a letter would be sent to my GP and that my consultant would call back in two weeks minimum, four weeks maximum, to let me know the results of the MRI scan and some blood tests that they carried out. I was told to chase after four weeks if I had't heard anything. It has now been five weeks and I am none the wiser. The letter to the GP only came through at the start of this week, a full month after my appointment, and to be honest I'm not even sure what's going on with that as my GP was originally happy to prescribe my Microgynon without the official letter but then found out that my mother had breast cancer and said that she would prefer for me to check with my consultant that he was aware of this and was still happy to be prescribe it. It's proved impossible to get through to him and nothing seems to be on the system so the endometriosis nurses have not been able to clarify anything for me.

I have no idea if the endometriosis is officially back or not. I only know that I

[marina_simba in reply to marina_simba]

(oops, pressed submit by mistake...)

I have no idea if the endometriosis is officially back or not. I only know that I

am experiencing similar symptoms in addition to new symptoms that seem to correspond with other people's experiences who have bowel endometriosis. It's horrible being in limbo and having to chase for answers about your own body.

Clearly, the hospitals are stretched and the administration side of things is poor. Hopefully I'll get some answers soon. You just have to have hope that you're at the best place cause there's nowhere else to really go from here...

[Bethleah in reply to marina_simba]

Hi. I am with the JR but they prescribed cerezzet then zolodex which caused more problems. I’m also under the Churchill in Oxford as constricted ureter causing problems. I ve been there twice this week Friday was an overnighted and they feel the Jr aren’t sorting this out just diverting it from them. I Sam the lead consultant at Jr who looked at my notes less then a week before surgery and decided not to operate. I was not confident in her. She said I’m too high risk and too complex one of the most complex cases they have seen so put me on cerezzer then zolodex which helped with pain but caused worse problems. At the moment I’m only of paracetamol. I had an overnight in Churchill due to kidney pain which passed but they believe it’s an Endo flare up as it happened with my period. They don’t seem impressed with Jr lack of treatment. I also just checked to figures for surgery and follow up and jr didn’t come out so well. I live in Worcestershire and Worcester is now a bgse. It was the clinic lead who diagnosed me 9 years ago and operated twice.

I’m really not sure what to do. I requested the referral th Jr as I was told the surgeon is very very good but she won’t operate.

[marina_simba]

That's a tricky situation... I think I know the surgeon you're talking about and I was also given the impression that she is extremely capable. Did she say why she's not willing to operate? I wonder if she can at least refer you to someone she thinks may be more suitable to perform the surgery (if indeed surgery is the best option)? Or she could tag-team with someone? Sorry, that's obviously not the correct term, but I know that when I had my second surgery I had surgeons from two specialisms, and I think that's quite common with complex cases.

I'm finding that trying to control endo symptoms with hormonal treatments can be a bit of a Russian roulette situation too... I'm really sorry to hear that you're having to go through all this pain and uncertainty. Have you got an upcoming appointment in the near future?

[Bethleah]

Hi she won’t operate as too risky and complex. As bowel involved. Next appointment is in December in pain clinic it’s taken 2years to get to pain clinic. But Churchill emailed jr yesterday the clinic lead who is much more understanding telling him to review me as risk to kidney. We will see. Meanwhile I’m taking supplements changed my diet to omit food intolerances and just started trying sereapeptase. We’ll see what happens next... thanks

[Hidden in reply to Bethleah]

I have had bowel excision at the big bsge centre in London - did she say exactly why she wouldn't operate on your bowel? At this point I would be looking to go to another centre for a second opinion. I'm sorry you're having such an awful time.

[Bethleah]

Hi only that it’s very very complex and too high risk, risk of stoma and mobility problems. I’m one of the most complex cases they have seen.

[Hidden in reply to Bethleah]

Everyone having endo surgery on their bowel has a risk of a stoma, we're all told that going in. For me, that wouldn't be a good enough explanation and I would definitely want a second opinion. Can you get to one of the other big centres? (London?)

[Bethleah]

That’s what I’m trying to find out if it’s possible and will I have to go to the gp together a referral and start at the beginning again. I think there is more to it than I’m being told. The surgery was supposed to happen December 21 and it was in the news about them clearing beds out. Also wonder if it operating on me would have impacted negatively on their data for the year. Also money may be another issue. My local hospital now has bgse so may need to get referred to there if not getting anywhere with the jr x