Advice

Hi ladies.

Hope you are all well. I was diagnosed with endo nearly 3 years ago. I've noticed that as the time has gone on, I struggle to go to the loo, sometimes taking 3 hours! Does anybody else suffer with this? Also passing urine can be painful and feel very hot.

Finally has anybody had a hysterectomy at 25? After some advice for the long term problems. X

7 Replies

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  • Hi,

    I have replied to your earlier thread.

    As far as the difficulty in defecation is concerned, i think your endo might have spread to other organs like bowel or bladder.

    You definately need MRI scans and diagnostic laproscopy to evaluate the extent of endo lesions.

    A competent surgeon will be able to remove endo lesion from the bowel and bladder too.

    As i wrote before, please do read about the side effects of hystrectomy specially at such a young age. You need your hormones for the normal functioning of body.

    x

  • Hiya,

    I have always had major trouble with my bowels, even before I was diagnosed officially with Endo. My Gp kept insisting I had IBS and treated me as such, but it was useless. Only once I grew a grapefruit size cyst on my ovary did they take a proper look and discovered I actually had reached severe stage 4 Endo. Most frustrating. After this point I had lots of surgery to correct, BUT the long and short of this is this... My gynae advised me to take a daily sachet of Movicol to ease my sypmtoms (cramping, pain, constipation, diarehea, bloating etc, sometimes needing a no.2 upto 5 or 6 times a day). I was a little concerned with this initially and thought that it may make trouble worse and I was worried about getting caught short at times. No need!! I take my sachet at approx 4pm every day and simply go to the loo in the morning 1st thing. It's great!! Im surprised how good it works. It has taken down my bloating, cramping etc and I generally have had a decent year, BUT it now seems to b returning again :-( So.. IMO it's worth a try and maybe it will make life more pleasant for u. ALso b aware that pain meds always make u constipated and the more u take the more it affects ur body. My daughter who had a major spinal op last year struggled with pain before her op. She had ALOT of pain meds daily for approx 2 years and ended up with a complete bowel obstruction due to pain meds. So definatly worth a go, but do it for at least a week for it to start making a difference. BTW - my body knows when I have skipped a dose these days and they symptoms immendiately start to return for me. Good luck and god bless xx

  • I've had lap done before which didn't help. I saw my consultant on Friday who seemed to think the next option would be a hysterectomy, hence the fact I asked if anyone else has had one young, trying to get opinions.

    I will give the Movicol a try, any things better than not beig able to tothe loo for 2 weeks!

    Thanks for your replies x

  • I would be cautious about having a hysterectomy so young, instead I would seek a specialist endo surgeon who can excise the endo (which is cutting it out instead of just lasering the surface lesions), who can work on any endo in/on your bowel & bladder too. If you have a hysterectomy this will only take away the endo on/in your womb but leave all the endo on your other organs, which can continue to grow & spread on your bowels, bladder etc... My Mum had a hysterectomy at about 25 due to endo but still has endo on her other organs, as well as suffering from arthiritis due to hormone issues and a prolapse (for which she had to go for another serious surgery for). It has caused her a lot of problems.

  • Sadly this is all normal. I would not have a hysterectomy though. I am about to have surgery with an endometriosis specialist surgeon at arrows park hospital in Liverpool. It is a long way from where I live, but he is going to operate on me, something that I had previously been told could not be done because my case was inoperable. I too had been advised to have a child quickly and then get a full hysterectomy. Do your research first... a lot of research. A hysterectomy is not something that you can reverse.

  • My endometriosis is in the pouch of Douglas which causes massive problems going to the loo, and the pressure from the swelling makes me need to pee every five seconds. I changed my diet having read Carolyn levetts book, and eat mostly fruit, veg, natural Greek yogurt and cottage cheese. I cut out alcohol, coffee and black tea and I started wearing maternity jeans which helps with the pressure pain.

  • Yes, I too have suffered a whole symphony of symptoms relating to endo, adhesions and apparently I have Diverculitis Disease and arthritis in my hips, which I wonder if this has been brought about by use of Zoladex a couple of years ago! Oh, and a mid high receoteole and IBS. The pain meds containing codeine play havoc with my bowels complicated by Diverculitis and IBS. I get severe constipation and have to take Fybogel, Merbervine, Lactalose and even the odd Senna to keep my bowels moving, it is painful and uncomfortable and I am bloated most of the time. The strange thing is every now and then I get sudden diarreoh which may be Diverculitis and this has made me incontinent at times, not nice! I am not supposed to take Ibuprofen 400mg because I am asthmatic, but to give my bowels a break, I do from time to time as I think it might help with inflammation. Most of my pain is right sided just above where my ovary might be (I am menopausal now). It seems deep inside my right hip. However, when my Gp presses it, it is so deep it doesn't hurt on the surface yet causes me immense pain particularly at night when my bladder and bowel start to fill and I am woken by nightly pain, forcing me to go back and forth to urinate. I do wee a lot anyway, and it hurts if I don't. As I now have no fallopian tubes, removed due to endo and am menopausal. Not sure where to go from here? I keep hearing scarey stories about hysterectomy and ultrasound indicates uterus ok so with only probably shrivelled ovaries left minus tubes it's incredibly hard to know where to go from here. Laparscopies and Hysteroscopies previously found lots of endo and adhesions but they did say I had 'as much removed as was safe to do so, due to close proximity to bowel. My ovary was stuck to my bowel and adhesions adhered the other side of my pelvis (tube stumps stuck to bowel). I gather this means they had to leave tiny traces due to closeness and attachment to bowel. Anyway, all I know is I get right pinching intensely and can't wear anything but loose waistbands and get chronic hip and low back pain and literally writhe in pain in bed during the night, trying to pull my body in weird positions to attempt to stretch out the tight pinching twisted feeling in my right pelvis.

    I feel so exhausted all the time and am so sick of rollercoaster symptoms and the crippling anxiety this causes in a world that doesn't seem to care or understand and expects me to function like a normal person. Thanks for listening to my rant. I thank you for time and thank heavens for this site for all of us endo and adhesions sufferers to express our pain and frustration.

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