Stick or Twist... shall I move specialist? - Endometriosis UK

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Stick or Twist... shall I move specialist?

monday profile image
8 Replies

I’ve just found out my endo has returned with gusto. In 2008 had a lap that needed a couple of surgeons and 8 hrs to complete... I received great care up until that point from a specialist surgeon in the North West and thankfully had a great GP who helped achieve a fast diagnosis.

However, the after care has been patchy, I've seen a different junior Dr every endo clinic (every 6 mths) they do not have time to read notes before I go, and it has taken me 2 yrs to persuade them that it is back. They would not believe me, as I was being 'managed' with continuous pill and coil. Small things like unmoveable no negotiation with appointments/ wait times of 6 months/ and appointment delays of hours. His receptionist deserves a whole blog for how rude she can be. Being a self-employed contractor and wedding florist - getting an appointment when I am supposed to be dressing a wedding that I cannot move with 5 months’ notice is not that friendly.

Finally, I pushed for a MRI at my Sept appointment and this has revealed it has returned – I had to wait 5 months to get an appointment for the results. My last appointment (this week) the new Dr just said its back and you have 3 options - but when pushed could not help me decide which... I know that my surgeon has a great reputation but I don't feel very cared for, listened to, and feel I have to fight to be heard. There is this feeling about the clinic that we as patients should be grateful to be seen at all. Should I try to move to someone else before embarking on the surgery or just put up with the bad for the good? Is this just what it is like for us? Can anyone recommend a NHS specialist in the North West I might move to?

FYI I want kids but since the Dr had not read my notes her first option was a hysterectomy… I tried to push to see if I should give up the ghost re kids but she said she could not comment. I know the Drs have their hands tied behind their back sometimes but I need help, and to get this situation managed.

Love and thanks x

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monday
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8 Replies
ilovemykids profile image
ilovemykids

I have been in this situation so many times, feels like I wrote this post a bit bk. Every appointment I have been to I ended up seeing someone different who didn't have a clue what was happening with me, so you end up telling your story all over again! It wouldn't hurt just for the gyne to take 5 mins just to look through the notes before they meet you, I'm aware that they are very busy but when I care for patients on our ward I have a quick flick through there notes and it makes a better rapour with the patient.

Thankfully after months of fighting for a lap they have gave in and I have a date!

I also tried that many medications it was unreal, thankfully I have now found a medication that works for me. X x

monday profile image
monday in reply toilovemykids

Glad you found some good meds. Hope the lap goes well x

meme2 profile image
meme2

Know just how you feel

Do try Mr David Rowland at Arrowe park hospital on the wirrall. He is a wonderful understanding consultant .

God bless

waterbabydani profile image
waterbabydani

Oh my goodness, my experience entirely. I want to move to a specialist clinic. My surgeon won't see me but the junior doctors say I'm too complicated for them. Every visit what ensues is that the junior doctor runs between me and him (sitting in another room with no patient) with questions runs back to me with an answer.i reply and the cycle continues. Who is this Demi-god and why should I trust him with my body when he doesn't even want to talk to me?

monday profile image
monday in reply towaterbabydani

Sounds like we are at the same clinic!

waterbabydani profile image
waterbabydani in reply tomonday

I know, I'm in London.

I would also recommend Arrowe Park. A consultant who finally believed how much pain I was in and was brilliant. I had to push my local hospital to get referred somewhere else - I had phone calls and an appointment trying to dissuade me! But I insisted and am so glad I did.

monday profile image
monday

Thanks all, I really appreciate the tips. I'm going to call my gp to see what can be done. I'm comforted that I'm not alone with this but also saddened to hear it is a common issue :(

Best wishes xx

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