BSGE clinics: Just wondering how many... - Endometriosis UK

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BSGE clinics

kellymarie26 profile image
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Just wondering how many people go to a BSGE endo clinic?

On moving house I found one an hour and a half away.

I waited ages for a referral and then on receiving an appointment and going I realised I had been placed in a pain clinic and the consultant has a very different way in the idea of treatments. Physiotherapy/ counselling.

I feel like I'm banging my head against the wall every time I see her.

My GP agrees that after suffering with severe endo for 10 yrs I should be placed into the endo clinic which is led by a team of consultants.

My GP has sent a letter to the consultant that leads the endo clinic and after 6 mths I have heard nothing.

I spoke to the secretary who went through all of my notes and said a lot didn't show on ur last scan (3yrs ago) so didn't understand why I should be in the endo clinic. You can imagine my response. I didn't realise secretary's have a medical degree 😡

She was so arrogant that she would not even tell me if the letter had been received.

It's really annoyed me that a consultant from the clinic hasn't even bothered to reply to my GP letter.

Why is everything such a battle 😢xx

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kellymarie26
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Starry profile image
Starry

Big hugs. I wouldn't feel safe with a general gynae surgeon after having a very dodgy experience in my local hospital.

Suggest you quote page 6 of the NHS service specification contract to the secretary. It stipulates the requirement to be referred to BSGE for severe or recurrent Endo.

google.co.uk/url?sa=t&sourc...

I had treatment at a bsge centre. I had a rectovaginal nodule measuring 2x3 cm plus similar sized nodules on my right uterosacral ligament, left ureter and right adnexae. Hydrosalpinx, kissing ovaries, adenomyosis, further bowel endo, bladder endo and endometriomas on both ovaries. My bowel and uterus were stuck together by the RV endo and also on the right hand side by the nodule there which had pulled everything over to the right.

If you are having problems it might be worth contacting PALS at the hospital and asking them to get involved. I have found this often gets things moving.

kellymarie26 profile image
kellymarie26 in reply to

It seems all back to front to me.

If I needed surgery again I then I would then be passed on to a consultant in the endo clinic.

I like to build a good relationship with my gynaecologist not just be passed to the relevant person just for surgery.

I thought pain clinics were more for those that were undiagnosed or didn't have any answers to there pain symptoms.

I will be speaking to my GP again to see if he can get to the bottom of this xx

in reply to kellymarie26

The problem is that there are only ever going to be a handful of surgeons good enough to carry out this sort of surgery and so their time is very precious and they have to restrict appointments to women who need surgery now, otherwise all they would do is make the wait for surgery even longer. I had only met one of the team that carried out my major surgery back in March before the day of the op. And even with the extent of the disease that I had, I had very little contact with the clinic. There was no relationship building. If you want that, then you have to pay privately for their time.

My understanding of pain clinics is that they are something bsge clinics offer as part of their service.

I would still ring PALS and get them to liase with the clinic on your behalf and tell them about the issues you had with the secretary and see what they say.

kellymarie26 profile image
kellymarie26

Completely understand where ur coming from. Although the consultants that carry out the surgery in this hospital do run there own endo clinics and that's what I don't understand.

I had my last surgery in Cyprus and I have to say he was the best gynaecologist I've ever had.

He even recorded the surgery and watched it with me and talked me through everything that was found.

Now that would never happen in the uk.

rosesinbloom profile image
rosesinbloom

I was interested in seeing who goes to one too.

In my previous threads I was told to ask to be referred to one right away, before seeing a gyno, as it's confirmed I have it through a scan.

I was also told by another member that you cannot go at all unless it's very severe and been confirmed. But then a few others said they were referred there just by their GP when it was suspected.

I would prefer my lap, if I have one, to be done by the specialist, as it seems I have bowel involvement and I due to other conditions, I'd prefer less operations in all, as I don't think I will recover as quickly as most people do afterwards.

Stellauk profile image
Stellauk

You can be referred to a BSGE surgeon if you have been diagnosed with severe and complex endometriosis or moderate ones that failed to improve after treatment by general gynaecologist. I had a MRI scan that shown severe endometriosis and was referred by my general gynaecologist straight away. Howeve, MRI only shows severe case and sometimes doesn't show mild ones.

My understanding is with NHS you are treated by a team and may not have continued care with one specific consultant. With private treatment you will receive one to one attention and specific attention by the same consultant.

Heloo85 profile image
Heloo85

Im in a BSGE centre after a referal from a gynae. I understand the scan didnt show a lot. My second ultrasound showed nothing to the point my surgeon reluctantly operated. Luckily he did as it was more severe than he thought. I have stage 4 DIE of fallopians, ovaries, bowel and bladder and had major surgery. Not much improved and im back bad. Ive had further hormonal treatment through BSGE and got an ultrasound booked for today. My only worry is it will show nothing again! I was made to feel like a liar but at least it bit them on arse when they went in surgically

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