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Endometriosis UK
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Feeling a bit let down

Hi all, I’m looking for a bit of advice after years of laproscopys different consultants hormone treatments etc I finally felt I had found the one met him for the first time September last year a laparoscopy followed after which I was told I needed a total hysterectomy bowel resection and stents in my urethras and that it needed to be done soon as the endo was compromising my bowel. I was put straight on zoladex and told by the surgeon and the registrar that I would be put in a teaching slot 2 months later so after 2 zoladex injections I hadn’t heard so thought I would check but nobody seemed to no anything about it I’m now on my 4th zoladex I understand you can only have a maximum of 6? I called again today and they said it probably won’t be till next year! I understood that the zoladex prepares you for surgery shrinking the endo to make it easy for surgery. But if it’s not going to be next year it’s all been a waste of time!? Has anyone been on zoladex for longer than 6 months? Or had any experience of this kind? Thank you in advance and advise gratefully received x

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Hi Natalie

I'm sorry do what you going through.. I am in pretty much the same situation even though I can't have hysterectomy as I haven't completed family yet... I have been on decapeptyl injections ( same like zoladex) since November and because they cancelled my lap I'm now on injection number 7... you can have it for longer than just 6 months but you need to be covered by HRT for bone loss.. hopefully that will help you and they will contact you soon!!! Good luck!

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Thank you for your reply we must all remember we are not the only ones it can just feel pretty lonely at times can’t it! Hope all works out for you soon 2 x

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awe I feel proper bad for you that is ages to wait is the zoladex helping at all ? Has it helped your bowel / bladder issues if you dont mind me asking. I proper feel for you the waiting and not knowing is awful .

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Hiya thank you for the reply I have to say the zoladex has been great for me I was in angony and was losing so much blood each month so really enjoying a break from that it has also helped my bowel and bladder symptoms to a certain degree . I’m mainly worried about it all growing back and making the surgery more complicated as the worse it the more bowel may have to be removed and the more likely I may have to have temporary colostomy. May I ask your story/experience with endo?

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I had no gyne symptoms really always had heavy periods but not bad enough to go drs with. Then bad left side abdo pain 2015 bowel pain . Couldn't get gastro appointment saw gyne had lap superficial endo removed from rectum , ureter , ovaries , utrosacrial ligament, told I had adenomyosis after results of biopsy during lap which I know is unusual was sent letter saying adenomyosis swollen womb pushing on bowel and bladder. No change in bowel and bladder symptoms slowely got worse. Booked for a hysterectomy then gastro said hysterectomy wouldn't change bowel problems. So I cancelled hysterectomy as bowel issue is the problem was booked instead for endometrial ablation as was a bit anemic. Severe pain after ablation told I had post ablation syndrome told no cureapart from hysterectomy also told I had cysts and PCOS.

Had hysterectomy told after pathology all fine no adenomyosis , no post ablation syndrome and no PCOS no cysts all normal ??? SO upset as had hysterectomy for no reason I have complaint now running with hospital . Bowel and bladder pain getting worse so original problem still here . Now in full menopause I feel for no reason,I had bone scan and have osteopenia I so regret having hysterectomy .

Any way I am presently waiting to see gastro a 18 month wait appointment is in Dec?? Paid to see gyne privately she recommended I try zoladex to completely rule out and endo otherwise she thinks bowel adhesions could be problem.

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Hi Natalie

It seems we are in the exact same position, waiting for the same operation. I'm on number 5 of my injections. I have been told I can keep having them until a date is finally sorted for my operation. I was so relieved as the injections have helped beyond belief. I will have to start hrt alongside it and have gone scans after my next injection.

As for the actual operation, I feel the same as you. I'm nervous about having a bag. Hopefully it's just temporary, but still, it's a bit over whelming. The sad thing is, if treatment was better here then neither of us would be at the point where the endo has been left to grow into the bowel xx

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