Endometriosis & Bladder

[ADeeL91]

TMI!!

Currently sat on the loo. Been here for 3 hours. Crying my eyes out and pissing a pea sized drop of blood every thirty seconds. I had my laparoscopy in April after 8 years of fighting to have endo diagnosed. In the last two years my bladder is becoming the most affected area. I was on Prostap but it didn't agree with me. And I can't take any hormonal treatment because of depression. So it's down to pain relief to help me. Anyone else experience bladder problems cause of endo? What treatment options have best worked for you? I had a camera in my bladder last March and was told it was fine but inflamed. I now have symptoms of a UTI nearly every week. But antibiotics won't treat it. Doctors just put it down to endo and send me home on pain relief. When it's really bad I have to go to a&e to have morphine injections. I'm losing the fight in me now. And don't know how much longer I can carry on living with Endometriosis. I'm 23, I'm about to lose my third job because of it. And I can't see a resolution any time soon. My consultant keeps saying I can have the part of my bladder removed, but is yet to put me on a waiting list. And only back at the endo clinic in December. I can't wait that long if it carries on like this.

[Sweetyassi]

Hi,

Sorry to hear that you're suffering. I was in terrible agony like you bleeding in my urine, inflamed bladder. Had all the tests done found nothing. Was still in so much pain was considering committing suiside until my hubby found a private surgeon who found the reason for my pains and bleeding. I had Endo inside and on top of my bladder and on my ovaries and bowels, basically my insides were all stuck together. Since having the Endo removed and my insides unstuck I'm almost pain free. I have now been diagnosed with celiac disease which I'm told that my 1st Endo operation in 2009 caused it. I had so many uti and was told that I would have them for the rest of my life.

No pain meds helped me at all, I had injections which made it worse, I had numerous operations which didn't help apart from my last op which I had last year November. I'm still recovering slowly.

I hope you find some relief soon, if you need to talk I'm here for you.

Sweety.

[ADeeL91 in reply to Sweetyassi]

Thanks for you reply. You describe symptoms alot like mine. Even where your endo is. During every flare up I consider ending it. I'm just so lucky to have a partner who is supportive and few family and friends who know my depression feeds off my pain. So when I'm really suffering I'm rarely left alone for more than a few hours. Still doesn't make the pain easier but it means that i'm sort of distracted from the depression.

[Sweetyassi in reply to ADeeL91]

Yeah my family has helped along t especially my children they keep me distracted and remind me I can get through this all and how strong I am.

Sweety.

[Hidden]

You poor thing this sounds terrible! I don't have these issues my self but i know that inability to empty the bladder fully is going to lead to uti because of stagnant urine. I have a pot of urinalysis sticks in my bathroom cabinet (can buy from Amazon) so you can test your own urine and look for leukocytes, protein and blood present which could indicate infection. Trouble is long term antibiotics are not ideal for gut health plus resistance to bugs. I would recommend a supplement called d mannose. It's a simple sugar but bacteria in the bladder stick to it and you then excrete it. It's advised by urologists for chronic infection. It might just tide you over until you can get a longer term solution sorted. Really feel for you xx

[ADeeL91 in reply to Hidden]

Thank you, I will be ordering both shortly. Willing to give anything a try x

[Masondixon]

This sounds really hard to deal with, how are you doing now? I recently had a large endo mass removed from my bladder - initially I was told it might be a tumour. I'm now waiting for my lap, but have been told it is very rare to have endo in the bladder and to the extent to which I have it - in the muscle tissue as well. I'm waiting until after my lap to be advised of treatment, but am currently trying for a baby, so that will impact on my choices.

How have you been? Any advice or thoughts about specialists you may have seen?

I can completely relate to your pain and it is so scary when you keep weeing blood. I hope you've managed to stay strong xx

[Chinaxo]

Hello, sorry you are having such a tough time. It is really hard to deal with sometimes isn’t it?

It may be that you have Interstitial Cystitis - particularly if an infection is not showing in your urine and antibiotics are not helping. I had suspected that I had this for a while but was recently diagnosed during surgery where I was having a laparoscopy and they also did a cystoscopy. I am now waiting for a referral to a urologist to discuss this further. Have a look at the symptoms and see if this sounds like you.

If this is the case there are medications you can take to relax the bladder which can help, also diet related things which you can change (ie cutting out caffeine). I’m not there yet with anything helping as I can’t take the medication I’ve been offered, but let me know if you have any questions