Bladder issues with endo: Has anyone... - Endometriosis UK

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Bladder issues with endo

JoanneCrow profile image
JoanneCrow

Has anyone suffered any bladder issues with endo?

I often struggle to go for a wee, I need to go but once I get to the toilet it doesn’t come or I have to really push so I can wee. I’ve had tests and antibiotics and definitely don’t have a uti so I’m wondering if maybe it’s my endo that’s causing the issues?

31 Replies

I'm undiagnosed but my GP suspects my bladder issues over the years that have always baffled them are probably endometriosis. I've been so many times with suspected kidney and water infections but all tests come back clear, never any explanation. So many CT scans and urine tests, they frequently find traces of blood when I'm not on my period too. So it's looking that way! Have a peek on the Endometriosis UK site, there's a whole section on endometriosis and the bladder that I found super useful.

I had Endo on my bladder! And I have it again, on my bladder!

Frequent urination, urgency to urinate, pain on urination was probably my noticeable symptoms... Over the years it got to a point where I would withhold fluids, especially if I had to go somewhere.... Most painful thing I have ever experienced is a full bladder for an ultrasound! The first lot I had excised.

I have gone through times of passing blood clots! That hurt.. unsure if it was from the bladder or kidneys! I did have to have my kidneys stented after investigations....

Xx

JoanneCrow profile image
JoanneCrow in reply to Heloo85

Thank you, I looked online and pain when urinating seems to be the biggest symptom but I don’t have any pain I just can’t go if that makes sense? I do urinate quite frequently but I also drink ALOT of water and generally have always gone quite a lot so I’m unsure if it could be the endo x

Heloo85 profile image
Heloo85 in reply to JoanneCrow

The struggling to empty could just be that you’re leaving it to long to go! The fuller your bladder the harder it is to get going! Do you hold your wee?

It could still be Endo mind, or adhesions, but also holding can make it difficult! Xx

JoanneCrow profile image
JoanneCrow in reply to Heloo85

Not really tbh, I never really hold it in!

I have heard that people get adhesions after c sections as well and I have had one last year so not sure if that will be causing it. I’m currently just waiting for a scan and then going from there!

I already have endo but it was dealt with via surgery and I was fine until I had my daughter so I think it’s back with a vengeance! Xx

Heloo85 profile image
Heloo85 in reply to JoanneCrow

Well a c section will cause adhesions so could be that!

Pretty sure most my pain is from adhesions and not actually Endo as my pain isn’t cyclic! Xx

JoanneCrow profile image
JoanneCrow in reply to Heloo85

Yes my pain is all the time, so do you think it’s likely adhesions then? Would they find that on a scan? X

Heloo85 profile image
Heloo85 in reply to JoanneCrow

Unfortunately no, adhesions don’t show on scans! They can however, see if they are likely on MRI and CT by looking at organ position and if organs move like they should!

I honestly don’t know.. If Endo is so severe that it’s worked it’s way through your bladder wall, no doubt it would likely hurt most of the time... If it was just superficial, then it would likely just cause problems at the time of the month!

But, then everyone is different with Endo... Symptoms may not even match severity of disease! Xx

JoanneCrow profile image
JoanneCrow in reply to Heloo85

Okay thank you, I really appreciate the advice. I hope you manage to get sorted soon too xx

I have a bladder prolapse and am having physio, have been told my pelvic floor is too tight so that’s why I struggle to pee first thing in the morning so now instead of tightening the muscles I have to relax them. Could be something like that. x

JoanneCrow profile image
JoanneCrow in reply to EndoJaz

Oh wow! How did you find that out if you don’t mind me asking? X

After my hysterectomy4 yrs ago I noticed the prolapse and after further excision in Sept I finally went to the GP who arranged physio appts on the phone. First of all I had to do the pelvic floor strengthening exercises but then this problem peeing in the morning started so now I have to do pelvic relaxation exercises as she said constipation and that could be caused by over tight muscles. I have an actual appt in 6 weeks to see what’s what. X

JoanneCrow profile image
JoanneCrow in reply to EndoJaz

Thank you! I hope it all gets sorted for you x

Hi there, I have endometriosis and interstitial cystitis, which is an inflammatory bladder condition that causes the bladder to spasm, which can result in frequent, painful and sometimes difficult urination. It is not unusual to have an overlap with endo so maybe worth investigating. Sadly, there is no cure, but there are treatment options that can help you manage some of the symptoms. Mine was diagnosed by a bladder biopsy after my third endo recurrence. Now I know, I am able to manage it much better, although it does add to the already difficult endo flares. Hope you feel better very soon and get to the bottom of it xxx

I have had similar issues in the past...and it was endo related. Perhaps ask your GP or specialist for further support and investigation?

JoanneCrow profile image
JoanneCrow in reply to SingGirl

Yes I have spoken to my GP but because I had no infection and antibiotics didn’t help they kind of just left it as that. I’m awaiting a scan atm as I’m in the long process of ruling everything out to see if my endo is back!

SingGirl profile image
SingGirl in reply to JoanneCrow

Very sorry you are going through this. It's horrible - I ended up having to go private eventually. Its not cheap but sometimes getting an initial visit private means they can then see you on the NHS. Wishing you well

JoanneCrow profile image
JoanneCrow in reply to SingGirl

Yes that’s how I managed to get diagnosed originally because I was under 18 and on my dads health insurance! Unfortunately I don’t think it’s feasible for me at the moment! X

Hello, yes I have this exact problem.It is overactive but very hesitant at the same time.

I have stage 4 endometriosis and have suffered with my bladder since first excision.

I had cystoscopy in December too.

Apparently there was no endo inside but I’ve been told the bladder has been scarred and nerves damaged on the outside as a result of surgery and the disease itself causing both issues (overactive and being unable to start the flow of urine).

I’m now taking mirabegron which helps with the overactivity but hasn’t done anything for the rest.

However I have just started pelvic physio who has advised that my floor is incredibly tense also as a result of surgery and disease and I believe that is what is causing being unable to start.

It could likely be the same for you.

Sadly I had to go private to actually get things moving with regards the bladder and physio but once I’d paid for the initial consultation which was £150 I’ve been able to have the rest done on the NHS relatively quickly.

Best wishes to you xxx

JoanneCrow profile image
JoanneCrow in reply to Lily1986

Thank you 😊 I think I might have to look into private as atm I’m waiting for a scan which could take god knows how long due to the current situation!

Yes I have this!!! Lots of cramping and urgency to go, and then lots of pain after going

Hi. I had all my bits removed and been suffering with bladder pain, and problems going to the toilet, even when full bladder. And the frequency is awful and pain at times. Also going places i wouldn't drink much due to pain if i had a full bladder and feeling like I need to wee even after i had just been. Been under urology a while now, tried thre meds to prolong , no change, all tests done, no infections, had my bladder stretched to see if it would help. All still the same. I have prolapse and it's getting worse they said. To bad that any pelvic floor exercise, therapy or pessary will work, I have been refereed back to see gyne at the end of the month, to discuss further surgery. I don't just get bladder pain, but i get pain again in my bum (hard to describe where it feels) and down my legs & lower back pain. Pain where my ovaries would have been. Always feel like i have a bladder infection but comes back clear each time. It was general gyne that done my big op, and pathology come back that endo & adeno were present. My uterus was large & hard to cut out she said. This time i am going to insist on seeing an endo specialist. I've stopped taking HRT because the patch I used was always hard to get hold of, but they put me on vagifem. I'm at my wits end with all this now, sounds bad but thankfully been in lockdown as its not good to have a social life. I work from home anyway so that's a good thing.

Hope you get sorted soon hun xx

JoanneCrow profile image
JoanneCrow in reply to mrsJM

I’m sorry to hear you are suffering.

It’s odd because other than general endo pain and cramps I don’t have any pain in regards to my bladder. It doesn’t hurt when I go or after, I literally just struggle to get the urine flow started! Sometimes I really have to push and forced it to start but again there’s no pain throughout all of it!

I’m awaiting a scan in regards to my endo so I’m hoping something might show up then fingers crossed 🤞🏻 x

I have a lot of bladder issues due to endometriosis. It’s not easy to be diagnosed and I blame that as to why I have been left the way I am. It’s resulted in me needing a catheter. The nerve damage can’t be repaired. It’s difficult but be persistent for answers until you find out what is actually going on xx

Thank you, I’m sorry to hear that this has happened to you.

It’s so frustrating with my GP, it’s almost as if if it’s not what they think it is then they don’t investigate further. They gave me antibiotics for a UTI and sent my urine to the lab which came back clear and I was still suffering after antibiotics because I didn’t have a UTI and they just left it as that rather than refer me or investigate further 😢 x

It is very frustrating bug be persistent. Ask for answers or even a second opinion. I went private for a lot of my urology to reduce waits. I hope you get some answers nobody realises how debilitating bladder issues are especially when you need to get to a toilet quickly. Xx

I was diagnosed with endo inside my bladder over 10yrs ago. I had pain for years which got increasingly worse and built to having 3 weeks out of 4 in pain. Urgency, stinging, blood in urine, constipation, diarrhoea, cramping etc. By chance when I went for an ultra sound of my ovaries, they found a lesion in my bladder. We could all see it on the screen. A biopsy showed it was endo.

The gynae said a laparoscopy would be too risky so I had 18 months of Zoladax. My ovaries switched off and as a result the endo had no oestrogen to feed off. It was life changing. My body had to time to rest and recover.

Since then, endo pain has been minimal and I don’t take anything other than paracetamol during my period.

It looks like the endo has affected my fertility so I now need to decide if I have a laparoscopy to release my ovaries a bit as they are stuck high.

Also, this helped me a lot with bladder issues- waterfall d mannose from the sweet cures website. Honestly, it was the only thing that ever helped with the pain and urgency.

I don’t know if any of that helps. Good luck x x

Hi! Sorry to hear you went through all that but it sounds like you are doing well now with the pain which is great!

See I’m not sure if it’s related to my endo, I’m 99% sure I’m currently having an endo flare up I’m just waiting for scans etc to be confirmed but alongside this I’m having the bladder issue. I don’t have any pain, blood, urgency, nothing at all like that. It is literally just that when I need to go nothing comes out or takes me a really long time and a lot of straining to get the flow going! Xx

mrsJM profile image
mrsJM in reply to JoanneCrow

Hi hun. I have the same issues with trying to go aswell. I had flow tests done & scans. My bladder does not empty, they thought at first maybe my urethra was blocked. Went under for a ridged cystoscopy and no blockage but my prolapse. I'm not convinced my pain is the prolapse, so I will see what happens when I see gyne at the end of thr month.. hope you get sorted & wish you well xx

Ah, I see. It sounds like it is related. The inflammation and pressure on nerves could be affecting your bladder. I hope you get some answers soon. It is all a minefield! x x x

Thank you for the advice. Hopefully my scan will show something! If not I’ll keep pushing for answers! Xx

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