Does anyone experience a really painful bladder? It's come on the last few weeks and it's got so painful, especially if my bladder gets at all full. I'm on morphine for the pain but still not getting much relief or sleep! I'll call my doctor again today, just wondered if anyone else had this?
xx
Hi there Kirstie, I have terrible problems with my bladder which has been really badly damaged by the endo. I'm having an operation next week to clear my endo and the damage that it's done to my pelvis and bowel, but most importantly to try to repair the damage to my bladder and to re-inflate, it as it's now very small due to the endo and covered in scarring and banding. I have had problems peeing now for about 2 years and I'm in constant pain with my bladder and ureta. The worst is the nerve pain that I get there and no amount of pain killers will let me sleep once that kicks in. I can't take morphine/oromorph etc. because opiates make my bladder stop functioning completely and I have to be catheterised. I'm on gabapantin which has really helped me cope with huge pain for a long time. It takes a week or so to really kick in and makes you spaced out for the first few days, but it helps me a lot. I take ibruprophen and paracetamol daily too and when the nerve pain is really bad diazepam as it's the only thing that has any impact at all on it and my only chance of sleeping through it. The endo pain all over my pelvis and on my bowel is bad and it's every day of the year, but the bladder pain is the worst. I feel for you if you have pain there. If I were you I'd defiantly talk to your GP again. Good luck honey.
Hi 
i noticed you mentioned nerve pain. The bladder problems and nerve pain can be linked to your lower back being out of alignment. I assume you probably have back pain associated with this? I have the same problems and am going to a chiropractor for help. There are charts of the spine that show what areas of the body are caused problems when the spine is out of wack. The low back points to endo,bladder problems. Its very interesting! when you say nerve though thats a further confirmation it's steming from our spine. A chiropractor has just done wonders for my mom and shes the one who told me about all this. Im going to go to him for my bladder low back pain and nerve pain in my back and legs.
Good luck !
Hi yes I had bladder pain. You can check out my post history but basically I had bladder pain all the time. The docs tried to tell me it couldn't be endo because my pain wasn't cyclical. It didn't show up on a scan either.
But when they did a laporoscopy they found endo on my bladder. it makes sense to me that because you have something foreign stuck to your bladder all the time, it would hurt all the time. Sure endo is more painful (for some) at certain times of the month...but I liken it to a benign tumour that bleeds occasionally- sure the bleeding hurts but so does having the tumour there all the time.
Anyway. It seemed to improve a lot after they removed it. But I wasn't able to come off my painkillers(morphine) for the kidney pain (Still on them now), so I can't be sure.
Xx
I have endo on my bladder and suffer with bladder pain more so when my bladders full. I've noticed when I drink anything other than water it flares up and hurts more. I also find it flares worse when I'm stressed. I've been referred to a gyne/urologist just waiting for the app now. My friend had it on her bladder too she was treated at a specialist centre her story wasn't too great and her symptoms were worse after lots of surgery compared to before which puts me off having the endo removed. Hope you find something that works.
Thanks for the replies, the pains much worse when I sit or lay you'd think it was really inflamed, I've been taking ibuprofen on top of the morphine and have managed to get an appointment with my doctor. I have always had bladder problems with incontinence and constant UTI's but this feels different. I am waiting to be operated on by a specialist actually can't wait, need some relief xx
I get pain like my bladder and insides are falling out I have been bleeding 11 months
then 6 weeks ago had the depo injection was horrendous bleeding for 4 weeks now stopped but bladder still feels like there is a baby's head ready to pop out? Pain is excruciating till I pee then it goes a little but still pains over tummy like stabbing needle
Does your GP or gynaecologist know how you're feeling? x
Hi thanks for reply - yes I told them I have to go back hospital on 7 December but it's very depressing and I. O others have worse things going on just didn't no if anyone had the same xx
Hi sorry to hear that your suffering with bladder pain.
I'm the same, I'm on morphine patch for pain but it's not helping much. I have endo on my bladder which has wedged itself inside my bladder wall causing me agony and bleeding in my urine. The endo has attached itself to my right side colon. I get burning and stabbing pains all the time day and night, I have trouble sleeping.
I'm having a camera test done this week Friday, they will also perform a contrast dye and take biopsy. I will be put to sleep and have been told to pack a over night bag because they think I will probably spend the night there.
Sweety.
Hi there! Had bladder pain for a year now, going from doctor to doctor and getting nowhere. Finally found a specialist and had a lap last Friday. They found endo on my bladder and several other places. My doctor used the DaVinci method to remove, robotic surgery, and already feel much relief. Hardly any bleeding either. Keep looking for a good doctor. Hope this helps! Good luck!
I have endometriosis, and have bladder pain, pelvic pain and cramping pain, and I took herbal treatment Fuyan Pill for 4 months, then these pain get relieved, and bleeding also has stoped. Because previously my period last for more than 3 weeks, now it's only 3-4 days, and very light.
Wow reading these replies sound like me!. I have endo on and in my bladder and it has damaged my urethea. I'm having surgery in 12th December. The reply about blood in your urine is the same as me I have it every day and I used to feel like my insides were dropping out and it felt like I was going into labour with the baby's head engaged. When I said this out loud I was made to feel like I was strange that's what it felt like. THis is why we go on here we can talk to people that experience the same crappy stuff.
All I am gonna say is don't give up endo in the bladder doesn't always show up on scans I had to fight for a MRI and kept getting fobbed off don't let them do that to you. It's your body you know what is happening. The endo nurse was great and helped me, I wish I was introduced to her years ago.
Take care everyone I hope you get some answers soon and remember we are here for those crappy days we all get. Xx
Hmm I wonder if it'll be found on or in my bladder when I'm operated on because I'm bleeding as well atm and the pains so constant. Will be so relieved to be operated on and know what's what and to actually have some time pain free. This place is so helpful, when people know exactly what you're going on about xx
Hi all, newbie on here! Just turned 40 and no babies. I've been hesitant to post a message as I'm in the process investigation for pelvic pain. I've been suffering with a painful bladder for a year now with frequent pressure on it for about two weeks of the month. Gyne thinks I may have Endo but says there's nothing they can do about that... Um not sure that's entirely true. Anyway I've insisted on a transvaginal ultrasound to hopefully see what's what. Hoping this scan will shed some light as too my pelvic floor feels like it's about to drop. I've now been given buscopan for IBS which I'm confused about as I don't have anything like IBS symptoms.... Seems like a curve balls been thrown at me .. Has this happened to anyone else here ... ?
I did, I had a transvaginal scan and it didn't show anything so they told me it's probably 'just ibs' and to take buscopan, had a laparoscopy and of course it was endo, misdiagnosis is so common
Oh that's not good Kirstiexxx at my last gyne appointment two weeks ago I was having to convince the consultant that my symptoms totally don't match Ibs.. It seems like a waste of time to go against the symptoms I am experiencing. I've now got to go through the Gastrenterologist... The buscopan is not right for my symptoms it's for spasm like cramps and I have sharp stabbing pain. Plus one of my ovaries couldn't be seen on the ultra sound so I'm imagining if I have endo then my ovary could have been covered ... Oh this system seems backwards ...a lot of time wasted with no real action taken. Thanks Kirstie for your experience .
I had laparoscopy found endometriosis in womb , looked in bladder and diagnosed painful bladder syndrome , also have IBS , gynecologists said common to have 2 or 3 of these together , trouble is sometimes when in pain at night not sure which one is causing problem 😐
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