Endometriosis and bladder problems

Hi everyone,  I wanted to know if any of you have experienced bladder problems. I was diagnosed 12 years ago with endo and have had 3 lap and diathermy (which really relieve the pain for a while).I have also had 2 cesarean sections 1 in 2012 and 1 in December 2014. (Very lucky to have my babies).I've been put on every contraception and nothing ever relieves pain but the operation. I've been in severe pain for over 9 months now post c scion but in October last year I started getting what I thought was a uti.burning pain whilst weeing and also if my bladder was empty.the doctors gave me antibiotics and they didn't work.they gave me another course and sent sample away for analysis.it came back no bacteria so they told me to stop taking them.I was still getting the burning so I kept going back.in January this year I ended up in a and e because the pain was crippling and they gave me more anti biotics.this time they did help slightly but not to take it away completely, they said the endo was probably on my bladder causing it to more susceptible to infection. Then every period I've had has been excruciating. The last one so much so I could hardly get to the toilet to wee and when I did it felt like someone was stabbing me in the stomach and back,I had so much pain but bled a lot less the usual.the pain lasted much longer than the period.I've been in pain all month and have been put back on anti biotics today.I'm back at the hospital in may but I'm just wondering if this is normal endo on bladder symptoms or if it could be something else there putting down to my endo.anybody experiences would be really helpful and appreciated x

15 Replies

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  • Hi, are you being seen at a bsge centre, as bladder endo should only be dealt with with excision from a specialist, xx

  • Could be interstitial cystitis, I think endo is also related to this. Xx 

  • Hi I have had very similar experiences to you. I have endo and also last year started having problems with my bladder, (just like you) So I have been seeing a urologist too as well as having another laparoscopy. Tried a number of things, I have been diagnosed with an overactive bladder. I have been given 2 drugs vesicare and amitriptyline, so far it has changed my life. The pain has gone considerably. Hope this helps.

  • I have IC and endo they go hand in hand with each other. My urologist thinks my IC causes most my pain rather than the endo but I done 6 months on zoledex and some of my pain went away but not my bladder problems.  Have you noticed it's worse with certain foods and drinks?if I have a bad day with food or have alcohol I am in so much pain the next day. I don't have pain all the time but I always feel like I need a wee and just about to wet myself. I used to get really obsessed about where the nearest toilet was but I've taught myself to chill out a bit more as I always feel like I need a wee and if I've just been I don't need to go again. I've had lots of tests on my bladder and know I empty well. Look up IC and see if any symptoms relate to you. Its very misunderstood by doctors and i had to tell them I thought I had it and luckily they started investigating taken years though.  I get a lot of pain after I've been for a wee. I sometimes have to go lay down for 10 mins until it passes. Hope you get sorted soon😚

  • Thank you so much everyone.I hd a review of my painkillers yesterday with the doctor and I asked about ic he said it could be but he thinks it's more endo related because the constant burning feeling isn't an ic sign!!but when I looked it up online I do think I have some of the same symptoms.I don't really notice a change after certain foods but I do get the pain when my bladders full and if I haven't been for a while when I go the pain after is horrible. I find if I lie on my back rather than my sides the pain is less too.I just wonder if ill need to be referred to a urologist as well as my gynae or if my gynae will be able to find out what it is. The main reason I'm thinking it's something more is my period.the last one especially I felt like something was preventing the bleed.almost like my stomach was filling up with it instead of it coming up.and the pressure was awful.I just hope they can find out what it is and help because it really affects your whole life and I'm starting to get really depressed about it all.thank you all for your suggestions it's really helped xx

  • Hello, you havnt mentioned if your laps where done by a general gyne IR a specialist at a bsge centre, but judging by the fact that they used diathermy, it's probably gyne, the gold standard of treatment for endo is to be referred to a bsge centre, so a professional experience d endo specialist can do a laparoscopy, these use excision surgery not diathermy, as if the endo is burnt /shaved off it can easily grow back, excision cuts it out, sort of from the root, so much better. Your gp might not know about these centres, mine didn't, so look up a centre close to you, and take a copy of it to gp and ask for referral, good luck, also look up a lady called Lindle, and read her posts xx

  • Hi I hadn't heard of bsge centres but I've just looked them up and there's one about an hour away.which I would defiantly do the journey for a specialist that can help.Thank you so much for the advice I will definitely ask my doctor if he will refer me.yes I did have diathermy 3 times and each time it came back within 12 months so it defiantly didn't work well for me.xx

  • I know it's terrible that no one knows about these centres, I have to drive 1 hour as well, and depending on time can take 2 hours, but it's worth it, I had a lap in march last year and a hysterectomy in July for adenomyosis, and I'm still in pain, apparently if you have Endo on uterosacral ligaments only a specialist should deal with you, and my gyne still operated, there is a nhs contract that states where and when you should be under a specialist, this is on Lindles posts, read them they are very interesting and informative, good luck, and let me know how you get on, 

  • Hi, I've got the same problem as you. I found out I had Endo inside my bladder causing bladder infections. I've tried every painkiller and nothing helps. The pains are so horrible I hate going to the toilet. I have been on antibiotics since lasted Christmas and while I'm on them I get no burning pain but my bladder still hurts. I had Endo removed in 2014 in my bladder and I was pain free for 6 months, now I'm back on antibiotics and my Endo has returned with adhesions inside my bladder and everywhere else. 

    Due to my bowels being damaged by Endo in 2009 I have been diagnosed with celiac disease and disc protrusion and thinning of my hip bones. I'm in constant pain everywhere. Fed up with the bladder infection. I'm wearing morphine patch to see if that helps with my bladder pains, so far it hasn't helped that much, it's only helping with my spine pains.

    The only thing that works for me is having the Endo removed, but it always comes back. I'm on a gluten, dairy, soya free, no red meat diet. I'm mostly in a liquid diet due to having eating disorder due to pains.

    I hope you find something that helps you. Try and ask for a scan to be done inside your bladder to rule out any Endo being inside the bladder. Good luck.

    Sweety.

  • Oh no its so horrible isn't it.but it sounds like you've really been through it.I'm the same with the antibiotics.while I'm on them the burning is a lot better but they give me a five day course and after I complete it it just comes back within a day.I know what you mean about going to the loo!I feel like the only way to prevent the burning being overwhelming is to drink loads of water but then I'm constantly going to the loo and in pain again.it's like a vicious circle.I'm thinking that my c section has done something.thy had to remove my old scar from my previous one because it had healed so badly but I think there were adhesions there because I had a lot of pain in it.they said the endo might cause more adhesions afterwards so im wondering if some have become stuck between my bladder and womb.I feel so sorry for you going through all of that pain it must be so hard to live with.x

  • Yes it's really horrible and painful, I found out after my last op that my bowels were stuck to my bladder and both ovaries. I don't have a womb as I had partial hystercretomy done a few years ago. 

    Maybe your womb is stuck to your bladder due to adhesions that causing infection and pain. That's the thing about having operations, it can cause adhesions and more pain. The healing process after having any operation is a long time even if it's a minor operation, everyone is different and heal in different times.

    I'm having Zoladex injection for 3 months and that's causing me more grief and making my depression worse.

    Sweety.

  • I bet it is its so hard.you've really been through the mill and to still be getting pain now you must feel so down. I know what his last 6 months has done to me mentally so I completely understand how you must feel.yeah I think because I've had a lot of surgery it's made it all so much worse.  X

  • Yeah it's very hard, exhausting physically and mentally it just never ends.

    How are you feeling now?

    Sweety.

  • It is horrible.I've started to feel so much worse now as I'm due my period next Wednesday so this week for me is always the hardest.hospital next Wednesday though so I'm keeping everything  crossed x

  • Oh no! Are any pain killers helping you at all?

    I miss having periods, it's like I'm missing something as a woman.

    Good luck with your appointment, hope it goes well for you. Let me know how it goes.

    I've had a rough few weeks myself, my spine hurts so bad when I lay on my back at night. I haven't had much sleep in 2 nights, I feel like a zombie at the moment. My eyes hurt and feel tired as I need sleep.

    Sweety.

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