Endo on bladder

Has anybody had endo on the bladder but not on the reproductive organs?

I have had all of the symptoms of endo, and was worried about my fertility, so I had the lap. Because my main concern was fertility the surgeon looked at my womb and ovaries, everything was clear and I was relieved of course. My pill helps control the symptoms so I have just continued with this. However, I get a lot of bladder related issues. I have symptoms of a urine infection but no infection, I've had visible blood in my wee and passed a little lump. The urologist asked about my previous worries of endo and he said bladder endo could cause my symptoms. So if my surgeon didn't look at the bladder, could it be there but everything else clear because she told me if it's not on my reproductive organs its not likely to be anywhere else?! Help I'm a bit stuck now on what to do next....

[Lyn84]

I have endo on my bladder and urethra and it causes me to feel the need to wee a lot when ive barely drank anything and before i was diagnosed i woke up one morning with blood pouring from my urethra i do have some endo on my ovary also. I think they didn't investigate everywhere for me either as i suffer with the pain near my appendix and in my groin also.

[Hidden in reply to Lyn84]

Do you have any other bladder symptoms? Xx

[Lyn84 in reply to Hidden]

I can get really bad pain there when on my period i once had the worst period pain I've ever experienced when it flared up i was crying my eyes out with it

[tamka38 in reply to Lyn84]

Am getting checked for Endometriosis and premenopausal because I have painful periods and night sweats my lower back pain vibrating in the back of the head and my doctor says is migraines and I had blood in my urine and right now my mean concern is having to wee a lot too when I barely drink a lot too I have been to the doctors I have had a EEG EMG and blood work done again X-ray of my lower back and neck waiting on test results and I have to do a sleep study next month and start physical therapy next month been to a ENT and Eye doctor am getting tired of seeking doctors now am just praying everything comes back normal and I have appt on the 28th for a Pap smear and hope she can answer some of my questions trying my hardest to keep it together so I want have a panic attack

[Lyn84 in reply to tamka38]

I did struggle to get diagnosed especially when i was bleeding from urethra they kept saying it was my period coming early and when i saw the dr because my bladder was so weak once the blood tests showed nothing they took it no further and just told me to train my bladder to be stronger by holding it in longer and longer. I've never suffered headaches luckily but i do get extreme fatigue with it and its painful when i ovulate

[Hidden]

I don't think she looked everywhere and I didn't get a discharge note just a letter to my gp to say I didn't have endo and I was discharged!

[JL0ck]

Hey, I was diagnosed with endo this time last year and have just had my second lap to remove it. I am concerned about my bladder problems also and feel something is not right. I have felt this way for about 3 years but once I was diagnosed with endo I just assumed the bladder and lower back pain was due to that. I mentioned to the surgeon before my lap this month that I was concerned about my bladder and she said she would have a look but there was no mention of my bladder on my notes/comments so don’t know where to go from here.

I need to urinate so frequently. I do drink a lot of water but even when I haven’t drank I need to go. I wake up every morning with a really bad dull ache in my Lower back and my bladder is in agony and takes a while to empty.

[Hidden in reply to JL0ck]

Yes it's tough. I dont have infection, my urine has been tested... But I have all of the symptoms. So it makes me wonder what's causing this! Also, I must drink plenty because when I have all these problems, I never have that dark urine associated with dehydration etc. It's always very clear. It's strange... Something's not right at all.

[JL0ck in reply to Hidden]

I feel exactly the same I think I need to go back to my consultant. I wish you the best of luck with everything x

[Staples7]

Hi! Yes you can definitely have endo on your other organs even if not on your reproductive. I had a lap about eight months ago they excised endo from my bladder, ureters, bowel, appendix, and intestines. I am struggling with infertility due to the endo even though it is not on my reproductive organs. Also, My surgeon gave me a copy of what was found in surgery along with photos, maybe you can try to get that from your doctor. Good luck to you!

[ElaineKC]

Have a Urologist do a cystoscope. After my lap.....where they removed adhesions from around my bladder, I was still experiencing bladder issues, urge frequency, retained urine, pain on full bladder. The scope showed nothing significant on my lining but the Urologist could see dark shadows which he said was either scar tissue or endo in the outside of the bladder.

Waiting for a referral to an endo specialist.

[Vincentcat]

Hi there. I had my first lap in June last year and one of my main symptoms was bladder pain, mainly stinging pain when I'm just about to finishing weeing and muscle straining sensation. Also if I really need to go I'm in a lot of pain afterwards. Like the others said I told my consultant this but nothing was found on my bladder.

Can I ask have you had any children? Did you go with an endo specialist?

The majority of my worst endo was found on my colon and rectum, and then adenomyosis on my uterus. Im sure endo can be found in your body not on your reproductive organs. My consultant said it's possible my bladder problems and pain is due to referred pain, pain coming from another organ or part of my body but being felt in my bladder.

I have another lap scheduled within the next 3 months. If I'm still experiencing this pain after this next lap I'll be referred to a urologist for a cystoscopy.

I also regularly take water samples to my gp so they can rule out a water infection because all the symptoms are the same.

I hope this helps xx

[Hidden in reply to Vincentcat]

25 with no children and she wasn't an endo specialist no... This I why I worry. She looked in obvious places but not all over. Because it wasn't on my ovaries or uterus she just said no endo and discharged me with no explanation for my heavy periods and migrains etc. And didn't look at my bladder at all while she was in there, but I have had symptoms relating to the bladder for a while...

[Vincentcat in reply to Hidden]

I would certainly be sure that any further consultations you have are only with an endo specialist. Until this time I think you should try not to worry and manage the pain anyway you can. I do think until you've seen a specialist, even without a lap, they're a lot more experienced and knowledgeable on this disease, and they'll be able to offer temporary aids until they do another lap. If you have to go to A&E, atleast you'll get some strong pain relief whilst it's really bad.

Lots of love, keep us all posted xxx