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Urgency to pee when lying down

Hello,

I’ve been pretty sure that I’ve had endometriosis for the last 4 years since I’ve been having painful menstrual cramps and painful sex after ovulation lasting through my period. Just in the last couple of weeks, I’ve started feeling like I have to pee so bad as soon as I lie down. I’ve been to a Gyno who thinks I probably have endometriosis but that it isn’t related to this and to a urologist who isn’t in any hurry to do a cystoscopy. Has anyone had this symptom with endometriosis? I am absolutely miserable and unable to sleep at night. I’ve heard of people having urinary urgency with endometriosis but haven’t heard of it only happening when lying down before. Also, I’ve tested negative for a UTI and my renal scans are clear. Thanks!!

  1. I haven't exactly had the urgency when lying down, but definitely when sitting down. I had large endometriomas that were probably pushing on my bladder somehow. As soon as I had them removed, the urgency feeling went away (until losing both ovaries and now I have urgency because I'm in menopause). I hope some others chime in who might have experienced this! In any case, I think it's worth getting a second opinion. It sounds like there is definitely something going on, and losing sleep is not something anyone should face. ~Katrina, Endometriosis.net Advocate

    1. This is an interesting question! You’re not alone in this experience. Having to pee when you lie down at night actually has a name: nocturnia. It can happen for a handful of reasons that may or may not be related to endo. One has to do with circulation and fluid that builds up in the body. Nocturnia is common in people with diabetes or a higher body mass index. (It might happen with endo, but it hasn’t been studied as far as I know.)


      With that said….


      I don’t have either of those conditions and nocturnia happens to me. I do have severe interstitial cystitis, which is just bladder inflammation. It’s not related to endo lesions, per se, but IC is very common in people with endo. And my bladder sensitivity/urgency symptoms are worse around ovulation and during my period. I sometimes have to pee right when I lay down to go to bed.


      Excision surgery did help ease some of my bladder sensitivity issues, maybe because he got rid of some of the extra inflammation in my body. I also saw a urogynecologist after my excision surgery. That’s someone who specializes in urinary issues in female bodies. He suggested I see a pelvic floor/spinal physical therapist specifically for these bladder issues. And she really helped! https://endometriosis.net/living/bladder-pelvic-pain


      I definitely would suggest talking to a urogynecologist or endometriosis specialist who knows about endo and bladder issues. My first OB/GYNs and urologists told me my endo wasn’t related to my pee problems. And they were wrong! Let me know if you have any other questions, and I’ll try to point you in the right direction - Keri (endometriosis.net team member)

      1. I forgot to add that an enlarged uterus, like what might happen with adenomyosis is another possible cause for needing to pee when you lie down. That might be worth asking your doctor about! - Keri (endometriosis.net team member)

        1. Hi ,


          I wanted to share with you that we shared your forum post on our Facebook page and it got quite a few comments back with people sharing their symptoms, treatments, and things that they learned. I really hope it helps give you some insight into what you've been experiencing.


          Here's the link (apologies for how long it is): https://www.facebook.com/EndometriosisDotNet/posts/pfbid0pUkhrkMo9TRohLsL3d6rbXXTEuN9HxLyFAU5EGtE4n6EgNZ4FMMmhcd1iK9EmpJql


          Sending you lots of love this Monday morning dear, warrior!


          🧡 Kayleigh, Endometriosis.net team

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