Anxious about endo and bowel Implications - Endometriosis UK

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Anxious about endo and bowel Implications

Tracey29 profile image
4 Replies

This is my first post but I have been reading everyone's stories over the last week, gaining much reassurance-thank you.

I have had hideous periods for 12 years + and tried a variety of remedies including 2 mire a coils the first of which worked well, the second not so as I had lots of other discomforts. I had a 3rd coil fitted which was painful and I felt rotten. A few months down the line it was discovered the coil was in my cervix!! After the removal of the rogue coil and more symptoms and terrible periods it was discovered I had cysts on both ovaries which I was told would disappear naturally.....they didn't they just got bigger. My consultant recommended lap to remove cysts and do uterine ablation. I agreed but when I woke up I was told none of it had been possible as uterus stuck. MRI diagnosed adenomyosis and lots of end and as I am 47 I opted for hysterectomy. I have an amazing consultant who specialises in endo so felt v reassured. Booked to have total lap hysto on 29/12/14 woke up to be told it had not been possible as endo stuck bowel and uterus. I had 2 cysts removed from 1 ovary and removal of some endo at this time.I am now having zoladex for 4/5 months before hysterectomy but need bowel consultant present too and will possibly need bowel resection and will have uterine stents. I am so worried about the next few months, how I will feel on zoladex and pending surgery. I am also recovering from lap and cyst removal etc and whilst I feel ok internally I feel so sore around bladder and bowel= a miserable moany me!

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Tracey29
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Linds123 profile image
Linds123

Hi, it's horrid isn't it! I had an ovary attached to my bowel, when they did the scans to remove it they found that the cysts had got bigger and that the ovary was then attached to the back of the uterus and right ovary and the whole thing had rotated as a result. They did a lap to see what was actually going on to see what they could save, nothing it turns out! I went on zoladex for three months to shrink endo back so they could operate laparoscopically for my hysterectomy (with both ovaries removed) on 10 December. They managed to do the op without needing to re-section the bowel, they had a specialist there just in case but were clear before the op that they try their best not to re-section as it means longer recovery and time in hospital ( they aim to discharge within 24 hours if it is huts hysterectomy but resection means a week in hospital and they like to clear beds quickly. ) unfortunately they will only know when they are operating so it is rather daunting not knowing what will happen until you wake up :-( I had mild side affects to zoladex - occasional hot flushes but I havre read from others that theirs were a lot worse. Some kept diaries of their symptoms but tbh I'm not entirely convinced that these are really helpful - if I scrutinised everything that happened for the three months I had them I could blame it for a lot of other things that had I kept a diary before and after would have been discounted but that's just my view on it! The injections however aren't that pleasant and I would recommend getting some numbing cream to put on beforehand - I did and didn't have much pain at all and none of the bruising that some people have mentioned. I didn't have stents after my op - apparently it isn't my consultants style! I had a drain in after my first lap in January 2014 and it was uncomfortable and the removal was the weirdest feeling in the world and not one I'd be in a hurry to have again but not something I could ever describe! I only had it in for a few days.

Currently I'm very tired, be prepared not to be able to lift anything - cooking meals and making drinks have been nigh on impossible, especially if the water jug has been over filled. It is annoying but I'd rather heal properly than risk doing damage. I have had hot flushes but was getting them before but at night I'm now struggling to sleep which I understand is probably caused by not having hrt - I will start in a couple of months time as they wanted to make sure the endo died off before I started taking it (I'm 33). I'm due back to work on Thursday but got doctor today to check that I'll be ok. I had an infection just before Christmas and was taken into hospital for antibiotics (it was severe and they wanted them to be done through iv) and feel this has put me back a week in terms of recovery but I've been trying to do lots of walking when I have the energy as the nurses and doctors suggested.

I hope your op turns out to be straightforward x

Tracey29 profile image
Tracey29 in reply to Linds123

Hi, goodness what a similar story we have! Did you have a laparoscopic hysterectomy? X

Linds123 profile image
Linds123 in reply to Tracey29

Yes I did, the recovery is far quicker - I was supposed to be back at work on Thursday but because of the infection I'm going back next Thursday instead. I'm only going to work four day weeks for the following two as I have no idea how tired I'll actually be! For me the worst pain was because of the gas and my shoulders were a killer - especially as I had to fly home afterwards and getting to and from the plane was pretty unpleasant!

Tracey29 profile image
Tracey29

Sounds like you are super woman! I hope you continue to feel better and get back to normal x

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