Endo & the bladder

Hi everyone, been a while since I wrote on here. I had my first lap in may 2013 and had endo removed and cyst on cervix removed. I have never felt well after the lap and if anything felt worse.

I have tried zoladex and all hormone treatments which aren't helping but over the last 3 months or so it's started burning when I go to the toilet, like I have cystitis but the test show no infection but blood in my urine. This isn't getting any better and my doctor has said the endo could now be in my bladder. The pain I get most days is left sided and feels like I'm bruised inside and someone is pulling and tugging the bruise area it's agony, sorry that's the best way I can describe it. Some days it's like a horrible stabbing pain and I can't move out of a certain spot.

I'm wondering anyone who's been diagnosed with bladder endo if this sounds similar?

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9 Replies

  • Hi, I have quite bad bladder endo as the endo has penetrated my bladder wall and I now have to have a portion of my bladder removed. Any who symptoms of bladder endo tend to be pain urinating, lower back pain, urinating frequently at night and frequently in general and a strong urgency to urinate.

    Sounds like your pain could be a mixture of endo on your bladder wall and endo in your pelvic area in general (stabbing pain).

    Have you had a MRI done? What has your doctor suggested as treatment?


  • Thanks for the reply hun. I do have urgency all the time to urinate but I had my bladder stretched about 15 years ago as I kept getting urine infections and I've just always thought it was because of that. I've never had problems with urine infections after I had that op 15 years ago up until a few months ago but no signs of infection, just the pain and blood.

    My gp has wrote to my gynae con to ask if he can bring my appointment forward from Jan next year so I've got an appointment a week this Thursday. Apparently my gynae con us a urogynaecologist so can my gp thinks he is going to do a cystoscopy and another laporoscopy.

    I was just wondering if it does sound like endo of the bladder and by what you've said it does.

    Are you still waiting for your op to remove part of your bladder hun?

    I really hope it isn't that but another part of me is thinking if it is maybe they can treat it and the ops will be more of a success than last time.

    I've currently stopped all treatment like gnrh and contraception as it makes the pain worse for me. Last thing I tried was the evra patch which is mainly oestrogen so not to sure why I was put on that as I'm sure that feeds the endo, I literally couldn't get out of bed for days.

    Just taking codine, tramadol and amitriptyline for the pain at the min

  • Hi I've been on zoladex for over a year now and seemed to going well.But past few months have hand countless urine infections and have just started having pain in my left side like pulling stabbing similar to what you described have now been referred bak to endo clinic as have not not had appointment for over a year my go thinks it is endo lesions but we shall see .sorry not to be of any help but sometimes knowing someone has a similar symptom makes us feel not quite so alone with this .Hope you get to bottom of the pain soon take care .....

  • I have endo in n on my bladder and ureter and have had to have part of my bladder removed I now also have nerve damage and have to use a catheter so please get seen asap as I thought nothing off it until it was too late and I now also have damage to my kidney as the endo blocked my ureter so my kidney couldn't drain and ended up distended and damaged.

  • Hey hun, just came across your post. Hope your feeling ok today. I sent you an email yesterday. Lots of love.xxx

  • Keep getting your doctors to grow a sample at the lab. I went couple of months ago with same pains. GP said cystitis but after 2 different antibiotics and no relief they said I kept contaminating the samples so I had mixed growth and gave up. Roll forwards 6 weeks and I went back as now I was peeing loads more at night and my pee smelt funny. This time a pure culture was managed to be grown and it only responds to a few random antibiotics. My cystitis seems to be cyclical. Although my surgeon doubts endo related my GP said hormone changes each month can encourage cystitis and cause interstitial cystitis.

  • Hi there.

    I have endo and was also diagnosed with interstitial cystitis - constant cystitis. I've had steroid injections in my bladder and cystoscopies and nothing was found. I believe that the endo is causing my bladder problems and I also have gut problems. I think it's all related. Stay off coffee and sugar and wheat as dairy for a start - these are bladder irritants. It does feel hopeless when nobody really know what's going on but you have to try and listen to your body. The more I read about endo the more I am beginning to think it might be to do with hormone imbalance. I'm looking in to this at the moment as I refuse to take the drugs doctors give me when not only do they not know if they are going to help but thy also end up giving your other side effects and I certainly don't new anything else to deal with.

    Nt sure I any of that helps but look into ic and ic diets and that might help you xx

    You are not alone xxx

  • My symptoms were almost exactly the same when I was taking the contraceptive pill. The docs thought I had UTI's but like you they never found anything but blood in my urine. They couldn't do anything for me so I decided to stop taking the pill and my symptoms really cleared up. The endo symptoms got worse but the 'uti' symptoms cleared up. But I have exactly the same tugging pains but down my right side, it's the side I have a polycystic ovary. But apparently taking some contraceptive pills can inhibit your body's production of your natural estrogen and that can lead to the pee issues. It sucks as I have to choose between the endo pain and the pee pain.

  • It is awful, the burning wakes me up in night. Then i can't get back to sleep because it's so uncomfortable. I haven't been on any contraception since 3 Jabs of zoladex that ended in march and I think my symptoms of uti started in June maybe. My doctor has sent it for testing so many times now and the only thing it picks up is blood.

    Ive found myself a new endo specialist who is fantastic and is going to do excision surgery and do my bladder and bowel too. He thinks it's endo in my bladder, it must be connected if there is no infection but I have all the symptoms of a uti.

    What us endo girls have to go through.

    Snookie-wookie have you had surgery to remove the endo? If so when was it? Xx

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