Anyone who has had a hysterectomy, have y... - Endometriosis UK

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Anyone who has had a hysterectomy, have you since had Laperoscopy for recurrent endo?

Fancydress-girl profile image
11 Replies

I am in W. Yorkshire struggling to find a sympathetic consultant. After 15 months of hell, I need help. Bowel & Gynae just passing me back and forth. Bowel tests show nothing including £1500 spent privately. Private message me if you can help. Many thanks

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Fancydress-girl profile image
Fancydress-girl
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11 Replies

Have a look at the BSGE website to find either an accredied endo centre ( theres a private one in w.yorks & NHS ones in manchester & hull) or you could look at the aspiring endo centres ( NHS one im Wakefield) x

Fancydress-girl profile image
Fancydress-girl in reply to

Thank you, i have read all of them. Unfortunately the gynae i saw who had endo stated as her second specialist knew less than i did about it. She was off hand, dismissive and I just wanted someone to give me a personal recommendation. I no longer believe any thing I read !

Brownlow profile image
Brownlow

Hi Fanydress-girl,

Was she on that list on the BSGE website? If not, she's not accredited as an endo specialist. I have come across this before. Someone says they specialise in endo but don't have sufficient experience to get accredited.

Fancydress-girl profile image
Fancydress-girl in reply toBrownlow

No she wasnt as I recall, so that is interesting. Unfortunately I can be so ill some days I will find travelling to a doctor a problem. I am absolutely fed up

Brownlow profile image
Brownlow in reply toFancydress-girl

In my view, the only decent way to get accredited would be to work as part of a team under an accredited endo specialist and get plenty of experience on all aspects. Otherwise you are learning as you go and practicing on your patients, effectively using them as guinea pigs. The accredited endo centres only came into being a few years ago. Prior to that there certainly would have been plenty of trial and error going on (and to an extent there still is!) but endo is such a complex disease that to say you specialise in endo without being accredited is misleading. There are some gynaecological departments that are on the aspiring endo centre list and some of them don't even get approved.

Instead of wasting your energy getting into a bunfight with someone who is possibly posing as something that they are not I suggest you go to your GP and ask for referral to one of the endo specialists on the list. Do fight for this if you meet with resistance. I am assuming your hysterectomy was endo related therefore an endo specialist would be the appropriate specialist to see. It is well known that a hysterectomy does not always solve endo problems if your GP denies it could be endo.

Could you get assistance from family and/or friends? Could someone drive you to your appointment and maybe even go in with you? Maybe call a meeting and explain that you are really struggling and you need their help to get to the bottom of this. Contrary to popular believe doctors do not know everything and some doctors are far better than others. It's a case of finding someone who will listen to you and take you seriously.

Please take care of yourself and drag up all your determination to demand answers and find solutions. Sending you a big hug x

Fancydress-girl profile image
Fancydress-girl in reply toBrownlow

Thanks so much, i agree with everything you say. At 51 , i have suffered all my life. I only got endo diagnosed in 2004. My wonderful gynea then died. Already my insides were ruined. I knew the hyster wouldnt solve every problem but I have to fight to be heard at every appointment. I end up crying with frustration. Even my poor hubby just shakes his head in disbelief when he hears my latest convesation. ( he does come sometimes) I spent £1500 privately with a bowel guy who recommended a private gynea. I cannot afford him. The bowels on the right side of my body feel constantly blistered. Pain meds dont work well enough so i end up in bed for a day or two, twice a month. I am going to the GP this morning , will let u know how it goes. X

Nicole30 profile image
Nicole30 in reply toFancydress-girl

Good luck and hope you get a step closer to some kind of help xx

claire56 profile image
claire56

Hi I have had hysterectomy to and having fourth surgery since having it very soon. I hope you know that you can see any consultant at any hospital anywhere in uk. I see a Mr Micheal Ellard at Arrowe Park Hospital that is in the Wirral I would get referred to see him goid luck x

Fancydress-girl profile image
Fancydress-girl in reply toclaire56

Thanks I will see my GP today to see where to go now !

persil profile image
persil

Hi I had the same problem been ill everyday for 9 months been swung between the bowel and endo consultant and now seeing a gastroenterologist which will deal with the bowel problem which in turn will help my endo

so maybe that's where to look

god luck

Fancydress-girl profile image
Fancydress-girl in reply topersil

Hope you get somewhere, its a nightmare! My GP has finally listened and is reviewing my notes. I have been given gabipentin to try for the pain in the mean time. What a joke NHS is! My life is almost ruined ( but not quite)

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