I may have mentioned this before on here but honestly I just want to hear people’s stories and not feel alone in this.
I currently get really bad bladder pain (what I assume is bladder pain). I get pain when my bladder is full and really bad pain as I emptying and after it is empty. It’s pain like I’ve never felt before. Sometimes it’s so bad it makes me want nauseous or I find myself holding my breath! I also often constantly feel like my bladder needs emptying even after I’ve just passed urine.
I am 25, and this has just been getting worse. This morning was probably the worst ever. I couldn’t even breath or move. I had to get dressed sat on the floor because the pain was just too much.
My appetite has now gone so breakfast took me over an hour to eat…it was two slices of bread.
I have finally got my doctor to refer me to a gynaecologist after struggling with getting the coil fitted, so that is progress.
But this bladder pain is just something else! It makes me not want to go to the toilet. Sometimes the pain radiates to my hips.
I have never had a UTI and each time the pain has been really bad I have checked my urine just in case and each time there’s no UTI. I have even been on a course of antibiotics as one doctor was convinced it was a UTI even though the urine sample didn’t show anything. They obviously did nothing for the pain.
I’m just posting to see if anyone else has something similar and whether it is linked to endo?
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Poppy96
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I felt like this for years, my GP is useless and never treated my symptoms. I have a private laparoscopy Feb 21 and mentioned I still had these symptoms, his reply “it’s not endo related” suggested Mirabegron and my GP prescribed it and they have been a magical cure for me! Apparently my bladder was constantly contracted and the medication relaxes it 🤷🏻♀️ it works 😅
Thank you for sharing. This looks interesting. My GP was deciding whether to send me to urology or gynaecology. She decided on gynaecology so I will definitely have a look into what you mentioned 😊
Hi, I had a similar thing to you, constantly felt like a UTI, when I had my lap my gynae referred me to a urologist and they did a cystoscopy and dilated my urethra. It wasn't very pleasant but it did give me some relief although it does come and go. Have you looked up interstitial cystitis? That goes along with endo and that's what I've got. Stress definitely makes it worse and drinking lots before bed for me, there's some info and tips online maybe it will help you? Good luck and hope you feel better soon : )
Weirdly that condition comes up every time I google my symptoms. It is all the symptoms I get but at the same time I am hoping it isn’t 🙈 I don’t think I can take another condition that has no cure 🤦♀️. I didn’t realise it can come with Endo, that would seem to make sense. Thank you I will definitely take another look again 😊
I know, it is very frustrating. If you can get your GP to refer you to a urologist they can have a proper look and although the cystoscopy was not very nice it did help my symptoms. Also there are foods that make it worse like tomatoes so it may be worth keeping a food diary? See if certain foods make it worse. For me if I am having an endo flare my bladder will also be angry too and also over ovulation and right before my period it flares up but weirdly because I know what it is and when it's likely to happen I can sort of accept it even though it's so frustrating. I hope you get some answers and feel better
I’m so sorry to hear you are going through this. This had been happening to me for years and unfortunately now (managed to find ways to reduce pain in terms of diet and lifestyle).
When I first started having these pains I got treated for pelvic inflammatory disease (PID) symptoms are similar but it didn’t work so they ruled it out.
Gyno was not very helpful with me and did not know how to deal with my pains. I would get examined and the gyno would just say “you’re just a bit tender but everything else looks fine”.
Ive been recommended to see a urologist and I am waiting for that.
Endo can be found in various areas of the body. So it would not be surprising if there could be potentially endo on your bladder.
Endometriosis UK explains endo and the bladder well:
Yeah it’s a nightmare as so many condition have all similar symptoms which means I feel like I end up running around in circles and no one knows who needs to help. My GP was trying to decide between gynaecology or urology to refer me to and she decided on gynaecology luckily it won’t be too wasted as I can hopefully finally chat to someone about the endo even if they can’t help with the bladder issue.
Thank you I hope you manage to get some relief too! 😊
I’m so sorry to hear about the pain you are experiencing. I used to have the same but only when I was on my period and we think this was related to my endo. I actually managed to stop this pain pre-lap, I went to a endo specialist nutritionist at Wild Clinics and through diet tweaks and supplements we managed to stop this pain. I had other pains that nothing but the lap would fix, but I was amazed by the results from these small changes!
My GP seems convinced it’s endo but I often get the pain when not in relation to my period which I guess then makes it more confusing 😕. I have noticed that diet seems to be a good way to reduce pain. I am also coeliac so am currently already on a strict diet, so I might have a look at this further. A lot of people say cutting gluten and dairy has helped unfortunately I’m strict gf free and dairy free due to coeliac etc and that hasn’t made any difference. But maybe I should look into some other foods. Thank you 😊
Increasing omega 3 either naturally or CIA supplement I think was the key for me. Wild nutrition do a really good omega 3 supplement - you could try that. Hope you find some relief, as I know first hand how awful it is.
I had similar problems after my laparoscopy late last year. My gynaecologist referred me to a women's health physiotherapist. She said I had overactive pelvic floor muscles as a result of the ongoing pain from my endo. After working hard at stretching and relaxation exercises with the physio I rarely get these symptoms now. I hope you find some relief!
I also get bladder pain too…. Like in the mornings I wake up in excruciating pain when my bladder is full however I never used to get this before endo. This happens to me every night now. And i basically wake up when my bladder is full cos the pain is so bad that I have to go toilet right then.
I have also found myself urinating a lot more often. Upto 3 times an hour at times!
I have had a laparoscopy and they found nothing wrong with my bladder. They found endo on the back of my uterus which they removed. However I still get this bladder pain.
Does it make you that poorly u can’t even get out of bed I feel like I’ve constantly got a water infection all the time even though I’m on permanent antibiotics xxx
i also having similar experience. my gynecologist says that my balder is clean, he was doing intravaginal ultrasound and also checked during laparoscopy, but he didn't do cystoscopy, so he is not 100% sure. Maybe my blader also is constantly contracted... hmm.. ? I definitely will go to urologist.
Yes . My periods were fairly normal too .. however the pain I would get was bladder related then in the end started to affect my back . I too would cry with pain when going to the loo but no uti.. went on for years on and off . Finally a random locum doctor sent me to a gynecologist. I had endemitriosis on my bladder !!
I had a laperoscopy which isn’t nice but it’s been over a year now and feel so much better . No pain when I wee anymore and no back pains . I get cross that doctors think you have to be bleeding severely before they will consider endemitriosis!
This sounds so like me. My periods have never been normal but they haven’t exactly been really heavy either. They mentioned they could see two patches of endometriosis during some scans but never told me where. About a month or so after, the bladder pain just began to get extremely bad. I also had really bad lower back pain a few days ago. So much so I tried stretching it out to see if it would help but the pain was so bad I passed out🤦♀️. I’m wondering whether that is related also as I just thought I might have slept funny. Thank you for sharing, it’s really helpful to see other people’s stories. I’m so glad your pain is better too 😊
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