Undiagnosed endo here as waiting for my third gynea consult.
i am just wondering if anybody has bladder symptoms?
I have a busy job and can find it hard to get to the toilet. But if I wait for ages and end up with a full bladder after emptying my bladder I get really bad cramps and pains?
I’m always worried to talk about other symptoms with the gynea incase they try to palm it off on another problem. Think it’s something I should mention?
Anybody else have this or know what it could be? Thanks!
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PBGV24
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I have endometriosis and painful bladder syndrome (PBS). The symptoms overlap, and they used to be known as the "evil twins of pelvic pain" as they are often linked. You should Google it and see if you think it's relevant to your symptoms and definitely discuss with your Dr!
I have that as well. May I ask how long it took until doctors took you seriously? I had my op in May, and still get unbearable pain during and a few days after my cycles. Been to the ER many times, where I would get flagged as a pain pill seeker…
I'm really sorry to hear that. It's so difficult to be taken seriously!! I've had symptoms of both conditions since I was a teen, I'm now 31.
I was first diagnosed with endo 10 years ago now, but didn't have a laparoscopy at that time. I managed ok on the pill until early in 2020 and symptoms returned ten-fold along with IBS symptoms and lots of weird symptoms like pins and needles, but I wasn't taken seriously at all. It took a year to get a gynaecology referral, a year to get seen, and I've been waiting on a lap coming up for a year now and expected to wait another (will be 4 years). I had an MRI with a private specialist, but it was negative. I paid £1000 and was in the scanner 10 minutes with no contrast or prior laxative treatment when I asked for a whole abdominal/pelvic scan to look at both my gut and reproductive organs.
With the bladder symptoms I flagged in 2017 that I kept having UTI symptoms, but I knew I didn't have an infection as I'm a microbiologist. I have persistent microscopic haematutia and that triggered a urology referral and had all the tests done and got PBS diagnosis by end of 2018. The trouble has been getting a treatment for it (I've been waiting for installations for 2 years now).
They also found I have inflammation in my small bowel, but no further investigations done and was just called IBS as I have other pelvic pain conditions and sometimes used painkillers to manage. Ridiculous!
First they gaslight you into believing there is nothing wrong, then you have overlapping conditions diagnosed so they blame the others and postpone treatment. It's a never ending cycle. I hope you are able to get to the bottom of your issues, keep persisting!
I’m so sorry that you had to go through all of that😓 medical gaslighting is awful and I don’t understand how they don’t get how it contributes to us having an influx of medical conditions! I really hope yet the help that you need!! Thank you so much for sharing your experience 💛
I have the same situation. Especially it wakes me up during the night to go to toilet and the cramps afterwards hurts. Also when I wake up in the morning to pee I have to lay down for 10 mins as the cramps are intense. I thought it was a symptom of endo
I have the exact symptoms it’s agony, I have endometriosis between my uterus and bladder so my understanding is that when my bladder starts to fill it irritates the lesions close by and that’s what causes the intense pain
I have Endo and Painful bladder syndrome (or interstitial cystitis). Both definitely overlap and you’re not going crazy. I loved the post above about them being ‘evil twins’. Sooo true! Sending you my best and keep advocating for yourself x
I had endo on the surface of my bladder. My symptoms were very low front pain when bladder was full and it was tender to press my stomach during a period, but also day’s afterwards. Like pressing a bruise.
Painful bladder syndrome, is quite common, in women. Especially if they have had catheter. I mistook painful bladder syndrome for endo at first and then arthritis. Painful bladder is an illness in its own right. Mine presented as radiating pain that filled my pelvis and went down my legs. It is extremely painful and is easily confused with endo. So endo masks it. It is extremely easy to treat, the hard part is getting the diagnosis. It was a physio that identified it from me. Endo is so life consuming that you can have other things wrong that get diagnosed as endo. Do talk to you doctor. Tell them about it. Say you think it might be painfull bladder syndome not just endo. I take two tabtes of cimetadine and its sorted. Some people need more complex treatment. Don't hesitate. Speak to doctors, it might seem as though they are in charge, but they aren't really they are there for you.
Yes, I also have been told I've got painful bladder syndrome recently but I get a lot of pain with holding and emptying, plus a small bladder capacity. I too have endo between my bladder and uterus. You should definitely mention it, where I am it takes so long to see the gynecology department so I went through my general doctor for a referral to a urogynecologist
I suffer with my bladder too. Since my lap it’s not been so bad, but prior to that I literally had to scream whilst I went for a wee as it hurt so much!
It took me ages for the docs to take me seriously that this was to do with my endo though. They kept wanting to do bladder surgery and I was so sure it was period related not a general bladder problem as they thought.
Wishing you the best in getting a diagnosis and support.
I have the same pains at the same times you describe. I was diagnosed with extensive endo via a private Endo specific ultrasound which was actually so impressive. I honestly believe the endo causes the bladder pains. It’s also a little worse at certain times of the month which makes me think it’s definitely not an unrelated bladder issue. I get the pains when needing to pass gas or a no.2 as well. Have been waiting to see a supposed amazing consultant in Guildford for nearly 18 months and all I can think is that this stuff is silently progressing inside me. NHS moved so slowly i might have to fork out the cash and go private for it to be removed at this rate. Don’t want to end up living with a colostomy bag or something!
Hello, yes I had this too, it's a common symptom of endo. I ended up seeing a urologists. And for me that was a waste of time. I strongly recommend looking up a specialist in endo. This is the link to where you can find the closest specialist in endometriosis. Normal gynecologist can not diagnosis it normally. I found that the hard way with 4 surgeries.
Again I strongly recommend a endo specialist. You have the right to pick your own doctor no just get who's given to you, again I learnt this after my 3rd surgery.
I have endo and bowel endo. I also have two large endo cysts. One was 18cm and pushing on my bladder and I would go for between 5 and 7 wee's in the middle of the night. It was really painful too. They have drained the large cyst and it has helped massively. I can actually sleep and only go for 1 or 2 wee's a night now which is more manageable so might be something your gyno looks into x
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