Endo in the bladder

Hi all! I have been a little worried recently about having endometriosis in my bladder. I heard that ON the bladder is quite common for us sufferers, but actually IN it is very rare. My doctor took a urine sample from me when I was suffering from my usual monthly UTI type symptoms, just to check if there was in fact an infection, and it came back clear. So, does that fact that there was no sign of blood in my urine mean that the endo probably isn't IN my bladder?

Thanks as always xxx

9 Replies

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  • Hi Steph have you looked into the possibility of IC?

  • Have you had a look at Interstitial Cystitis? Its inflammation of the inner lining of the bladder, also known as painful bladder syndrome. Apparently if you have endo its highly likely you also have IC. IC is usually diagnosed by cystoscopy and bladder distension. Don't be fooled by the cystitis bit, its not an infection which is why labs are always clear. I have been diagnosed with IC, endo (on everything according to my lap results), fibroids as well as just having had a polyp removed. My consultant tells me I have endo on my bladder as well. I'm just in the process of waiting for my next period as he is not sure if the polyp was the cause of my pain. If its the endo I am going to have Total Pelvic Peritoneal Excision as well as hysterectomy. I am on meds and regular bladder installations for the IC as it is treatable but not curable.

  • Hi! No i hadn't even heard of it. It sounds awful :( I am seeing my gyno next week so I'll talk to him about it. Do you have stage 4 endo then? Do you have any children? xx

  • No. I only have stage 2 endo but its everywhere. No, I don't have or have ever had the desire to have children. Apparently u can have stage 4 endo and have no problems but you can also have stage 1 and be in pain. Everyone is different.

  • Hi,

    I had Endo inside my bladder. I suffered a great deal from UTI IC, blood in my urine. I had Endo removed from inside and on top of my bladder 2 years ago. I was pain free for 6 months and was starting to feel normal again until all my bladder symptoms came back, I have been on antibiotics for 6 months, each time I stop taking them my bleeding and sharp pains, burning pains return. My consultant thinks it's either Endo come back or its adhesions inside my bladder. He checked my bladder and didn't like the feel of it so he knows something is wrong. Whenever I do a urine test it comes back normal but I know it's not.

    Sweety.

  • Thanks sweety! I'm going to discusss with my doctor next week. Can I ask if you have managed to have children?

  • Your welcome, yes I managed to have 3 children before I was diagnosed with severe Endo. I had mild Endo as a teenager but after having my children and stress in my life the Endo got worse.

    Do you have any children?

    Sweety.

  • No, but my husband and I have just started trying. I'm 34, he is 39. Had we known earlier about my endo we would have tried much sooner. I think I have it pretty bad :( Do you know much about it? Do you know if it's possible to fall pregnant naturally with severe endo? Or am I destined to go down the long road of fertility treatment?

    xxx

  • Hey, sorry to jump in to this mid-conversation but I just wanted to say, although it can be more difficult, it is possible to fall pregnant with severe endo.

    My story: We had been ttc for four years and eventually went through two rounds of IVF treatment last year, both of which sadly failed. Then by some miracle I found I was pregnant in January this year (naturally!) while I was waiting for my third round of IVF! Sadly I miscarried at 12 weeks but I proved it was possible to actually get pregnant in the first place which I suppose is a positive thing. I am 38 years old so age isn't on my side either.

    My last surgery was six years ago. I had it to remove a large ovarian cyst that was really bothering me and at the same time they went in with a camera and that was when I found out I had endo. Symptoms improved after that but after my IVF treatment last year my symptoms got unbearable again so I went back two weeks ago for a lap and found out I had stage four endo pretty much everywhere 🙁 It causes me a lot of problems with my bladder too. I feel like I constantly have a bladder infection and constantly needing to pee like something is always pressing on it. So I have been referred to a specialist centre for surgery to treat it all and we won't try to conceive again until after this now.

    I know my story isn't massively positive but I just wanted to say you're not alone and also that it IS possible to get pregnant with severe endo so don't lose hope. Good luck x