Difficulty with BGSE Doctors?: Has anyone... - Endometriosis UK

Endometriosis UK

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Difficulty with BGSE Doctors?

MandyLouise profile image
7 Replies

Has anyone had difficulty in dealing with BGSE Doctors? I have been previously diagnosed with endo and had surgery twice but it has come back again and I'm a lot of pain and the dr at the BGSE centre doesn't believe I have it, even with my medical records! I don't know what to do as he doesn't want to help me, has only suggested I have IBS or thang I do have endo to have the zoladex injection which I've done before and see that other women have said it doesn't work. I don't know what to do and would really appreciate some advice. Has anyone dealt with an issue similar or even had a good experience with zoladex?

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MandyLouise profile image
MandyLouise
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7 Replies
Marcia71 profile image
Marcia71

I had to fight with bsge surgeons to believe me as I'd had a hysterectomy but endo was left behind and op report said so. I found that persistence paid off but it is frustrating. I found the people at Guys better in listening so went with them and kept insisting on tests and appointments and got sent to pain management and when nothing worked I asked for surgery and by then they agreed so I'm on the list now and waiting for a date.

It shouldn't be like that I know but the fight seems inevitable so best of luck and stay strong!

Claireos profile image
Claireos in reply to Marcia71

I also still have endometriosis after surgery. I had my surgery through private healthcare with my job. I have now made an appointment to go back to the same Dr and self fund as my work changed healthcare provider. I st err juggle to get help via the nhs. My last appointment with gynae was a joke!

Any advice you can give would be gratefully received good luck x

Marcia71 profile image
Marcia71 in reply to Claireos

As surgery will get more and more expensive I've persevere with NHS and also they have bsge clinics which will get you the team of people you need.

It's frustrating and annoying when the medics tell you it can't come back or you don't have but we know our own bodies best.

I've been ok to combine private and NHS treatment. Others have too. Paying for an appt with a bsge surgeon can just speed up your NHS treatment. Keep fighting and try to stay strong.

Good luck

MandyLouise profile image
MandyLouise

Thanks for your help, sorry in delayed response. I will keep persisting, my only drawback is I'm a high risk patient and both docs I've seen are reluctant for surgery, say that I'll likely walk out with a colostomy bag! I will try the zoladex again I guess and see where that takes me, just disappointed it gets to this point with doctors. Thanks again for your help :) xx

Marcia71 profile image
Marcia71 in reply to MandyLouise

I hope you get there. I've recently been told I may end with a temporary stoma bag and I accepted this but made I clear I was happy to take any risks as the pain was such I couldn't live like this so wanted the surgery as I was sure it would help and I was happy to accept any risks with that surgery. So all I can suggest is you keep asking for surgery and making it clear you'll accept any risks they give you.

Good luck

Claireos profile image
Claireos in reply to MandyLouise

I was told the same thing xxx good luck😋

MandyLouise profile image
MandyLouise

You are right and I should persist even with the possibility with having a stoma, unfortunately I have had one before though so this one would be permanent. I guess I'm curious to all that have responded, with this disease do any of you wonder what it'll be like after the next surgery or the one after that? I suppose I just don't see an end to this and stuck wondering where this will end or whether drugs or just trying to ignore it, especially as in this case with a potential stoma or from what I've read from other women having hysterectomys. Does anyone else think about this? Thanks again for the support 🙂

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