Overweight with a high BMI: I have stage... - Endometriosis UK

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Overweight with a high BMI

Em_46 profile image
20 Replies

I have stage 4 endometriosis and adenomyosis with bowel and bladder adhesions and cyst's on both ovaries.My consultant is really good, however he has specified that I need to get my BMI down to 35 or below before I'd be considered for a full hysterectomy (I've already waited over three years for one). I was just wondering if anyone that was in a similar position to me that has had the operation and whether being overweight made a difference or not.

Also if anyone has any ideas on how to shift weight whilst being on Zoladex injections and HRT that would also be greatly appreciated because I'm really struggling and way behind on the weight loss if I'm to have this operation.

Thanks in advance

Em_46

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MrsPaddingtonBear profile image
MrsPaddingtonBear

Hi

I know where you’re coming from. Zoladex can be a pain with weight. I’ve had it 4 times and put on 1/2 st minimum. I too have a high BMI and have been refused surgery for hysterectomy. Just be aware of being mislead regarding surgery suitability. My consultant first said BMI of 40 then he changed it to a certain kg weight. It really got me down. I don’t know if every nhs area is different but you can feel fobbed off. I can’t find any data specifying weight/bmi for hysterectomy for my area. I tried everything to loose the weight but having thyroid issues and disability issues it was a no go, I eventually broke down and asked dr for help they gave me orlistat and I’ve lost 3st. Maybe worth asking, it’s not giving up on ourselves or cheating it’s a means to an end to get that surgery to end our suffering! Best of luck.

Em_46 profile image
Em_46 in reply to MrsPaddingtonBear

Thanks for taking the time to reply to my message.My consultant also said originally that my BMI had to be 40 or under and now it's changed to 35 (he's based in Hampshire). Which was a bit of a game changer, I also got told that he wouldn't put me on his list until I've lost this weight and I thought then that if I did get down to the required BMI I'd probably find the rules have changed again!

I'll ask about orlistat and see if I can have that or not but you understand it's such a struggle and with this condition being so debilitating you'd think they would give us a break!

Em_46

MrsPaddingtonBear profile image
MrsPaddingtonBear in reply to Em_46

Hi

My consultant kept moving the goalposts too so I’m not sure what to believe anymore. I’d love to get some paper proof of the rules regarding hysterectomy. I just keep going and hope this new treatment of Prostap works better than zoladex. Good luck.

Em_46 profile image
Em_46 in reply to MrsPaddingtonBear

I'm also being moved from Zoladex to prostap this month. Just been reading up on people's views to see if there was much of a difference or not.

Good luck!

MrsPaddingtonBear profile image
MrsPaddingtonBear in reply to Em_46

At least prostap is no worse than a flu jab to administer not like Zoladex I was a wuss and had a local anaesthetic every time as first one I had was agony

CFin profile image
CFin

hi, I think this is a fobbing off technique that they’re all being ‘taught’ right now. Whatever your BMI is, they’ll want it lower, to delay your procedure hitting the system and the local/country stats. Mine is around 33 and my (ex) consultant refused point blank to do a laparoscopy or hysterectomy until I got it down to at least 27, oh and he had the politeness to tell me this out in the public hallway rather than the consulting room we’d just come from. Leading up to this moment I had just refused the Prostap injection which was the only option he was offering me at this stage. I had also had the temerity to query what kind of MRI scan he had ordered a couple weeks prior, I had said to him I wanted my whole entire abdomen scanned and when I had arrived for the scan the radiologist had in her instructions it was for very specifically, my uterus only, just a gynaecological scan. I was furious! With much toing and froing I had the scan and waited for the results. I booked the follow up consultation and sat through his telling me there was nothing found in the scan, everything was normal, so I then proceeded to ask why the wrong scan was ordered, can we trust the integrity of the scan report etc etc. As soon as he realised I was doubting everything he’d just told me he got uptight, snarky, insulting, telling me I’m overweight and suggested he transfer my care to a different gynae. I was only too happy for him to as he had been my secondary choice when my previous gynae had not been available so going back to her I was only too happy to do. Nice huh 😒

MrsPaddingtonBear profile image
MrsPaddingtonBear in reply to CFin

OMG what a rude person he is! So glad you are clued up and strong enough to stand up for yourself. Some consultants shouldn’t be consultants.

CFin profile image
CFin in reply to MrsPaddingtonBear

Thanks 🙏 . The problem is they know they have us over a barrel, they have the skills and the power those skills bring. And not all consultants are created equally, not all care primarily about their patients but about their own egos. And some are proper chauvinists!

Em_46 profile image
Em_46 in reply to CFin

That's terrible, what a horrible consultant. But I do get where you are coming from with the 'fobbing off' technique, seems to be boxed standard reply now with them

SJPalm profile image
SJPalm

oh I’ve had this too , I’ve been waiting for about 5 years to get to the point I’m at now with a possible hysterectomy next year , I have lost 3 stone in the last 3 months and still technically over weight by about 2-3stone and when I last spoke to the gynaecologist a couple of weeks ago she told me to keep losing more weight. She said it’s to avoid complications during surgery.

I agree and intended to carry on with Weightloss anyway but reading all you’re messages I’m beginning to think it’s possibly a delay technique 🤔

Em_46 profile image
Em_46 in reply to SJPalm

I think they are playing the numbers game so showing that the waiting lists are going down by using these stalling techniques.

Thomasct profile image
Thomasct

Hi, I’m in the same situation my bmi is currently 36 and my colerectal surgeon wants it at around 30 to operate, I’ve also been waiting 3 years for surgery and just want my hysterectomy over and done with now. I’ve lost 3 stone since January through calorie counting and making sure I’m in a good calorie deficit each day.

Em_46 profile image
Em_46 in reply to Thomasct

Well done! Hope you get the surgery soon

Cailleach profile image
Cailleach

Especially re the changing requirements, could you ask exactly why the weight loss is essential and for references to research backing this up? It is certainly horrible to think that this is being used to massage waiting time figures.

Thomasct profile image
Thomasct in reply to Cailleach

oh it’s for sure a stalling technique I was booked to have my hysterectomy privately last year my bmi was 41 wasn’t an issue, anyway I woke from the op to be told they couldn’t do it because I needed bowel surgeon to separate my uterus from my bowel. I couldn’t afford to pay again and for two surgeons so I’m now nhs and having to jump through hoops, I know a bmi of 41 isn’t healthy but it’s so hard to loose weight with endo, I’m now a bmi of 36 and begging for a surgery date.

Em_46 profile image
Em_46 in reply to Thomasct

I've also been told that I'll need a bowel surgeon as well for my operation. I just want this over with now, so fed up of waiting and being stabbed each month with zoladex and having all the side effects that brings as well. I hope you get your operation soon!

Thomasct profile image
Thomasct in reply to Em_46

what side effects have you had from zoladex I start it today

Em_46 profile image
Em_46 in reply to Thomasct

To start with none. But he did have me on HRT as well to counteract any side effects from Zoladex. However, fast forward three years and I'm still on them, I was only supposed to be on them for six months. Long term effects that I've had are aches, tiredness, fatigue, brain fog and bone issues....

Em_46 profile image
Em_46 in reply to Cailleach

I was told that the anesthetic wouldn't operate on my if my BMI is over 35

Thomasct profile image
Thomasct

honestly I just feeling like they move the goal posts all the time, it’s the bowel surgeon that is making a big deal about my weight

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