Was just wondering if anyone has been diagnosed with endo on their uterosacral ligaments who also experience severe bladder pain. I have been reading some papers suggesting that there is likely a link but was interested to know what other people’s experiences are.
I was suffering with severe bladder problems for well over a year, constantly going to A&E with what felt like the worst UTI imaginable and every time my urine sample would come back clear. I eventually had a cystoscopy where they tried to tell me I had interstitial cystitis.
My laparoscopy was conducted by general gynae so none of the endo could be removed from the ligaments. Is it likely they would have looked at my ureter too during that surgery, or does that have to be done with a urologist present/different surgery? I’m wondering if I may have endo on my ureter also?
If anyone has any knowledge on this please let me know X
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All I can tell you is that I had a laparoscopy with a general gynae and he didn’t say anything about endo on my bladder but said my ovary was covered and I needed to be referred to a specialist. Two years later I have just had my laparoscopy by a specialist and the endometriosis was everywhere including covering the majority of my bladder. I think if you are none specialist they really do not know what they are looking for so don’t rule anything out.
I have painful bladder syndrome and was in the process of being treated with bladder instillation which helps heal the bladder (before covid stuff kicked off). Was being treated by urology nurses. They put catheter in and drain all the urine out, then a 50ml syringe filled with a treatment solution is flushed into your bladder. It’s meant to coat the lining of the bladder. This is done every week for a month, then every 2 weeks for another month, then monthly treatments thereafter. May be worthwhile speaking to a urologist? xx
My urologist actually offered me this, but was before I’d had my laparoscopy and I was adamant it had more to do with endo than anything else so I turned it down. How have you found it so far? X
I’d only had 2 done by time it got cancelled. Hasn’t helped much yet. Think I’ll have to go back to the start of treatment for it to be beneficial.
I’m waiting on laparoscopy though. Have a lot of bladder and bowel symptoms so gonna make sure they look everywhere hopefully! Always have lots of blood in my urine, doesn’t matter what time of the month it is. I’m on combined pill constantly so don’t get a period just now. But still have the pain that goes along with them xx
Yes I had endo removed from my us ligament about 18mths ago. It caused symptoms like you describe. Painful urination. I'd lost count of how many urine samples I'd had tested that came back clear. I was also getting bouts of kidney pain. I think the inflammation was causing urine to back up. Mine was deeply infiltrating endo and my surgeon showed me afterwards how close it had got to my ureter. He'd cut within a few mm of it. I had excision surgery but he was a specialist. Now mine had been undiagnosed for years and id had a lap with a general gynaecologist registrar previously who said there was nothing wrong with me (they obviously didn't look v far).
The positive take away from this is mine wasn't actually on my ureter yet (just) and the urinary symptoms resolved after surgery. Are you being referred onto a specialist for treatment?
Thank you this is so helpful! And really good to know that it helped to resolve your bladder issues. Unfortunately I haven’t heard anything since my surgery. I called the hospital a month afterwards to ask what had happened to my follow up and they told me they couldn’t find one, and obviously with everything that’s now happened I haven’t really chased it up further. But it wouldn’t be the first time they’ve purposely removed me from their referrals! I’m really hoping I can eventually have another surgery to remove what is there, but they wrote that everything was mild on my diagnosis letter and even then still tried to blame my symptoms on IBS even when they’d seen the endo. So will see how far I get X
You might be interested to know that your hypogastric nerve runs through your us ligament so you'd expect bowel issues because of the endo there - not true IBS though.
Really hope you can get somewhere with your follow up!
I’ve just been referred privately to see urogynaecologist (fortunately still had insurance through work despite being signed off since December as would have been waiting upto a year on nhs and the last time I saw a urogynaecologist on nhs he told me it was all in my brain! Very helpful-not!)
I’ve had 4 surgeries for stage 4 endo and been left with a terrible bladder. My ligaments, bowel, pod, tubes, womb and ovaries were stuck all over the place and covered in diesels.
Left me needing to wee in excess of 40 times a day.
She was quite helpful and said that sometimes the bladder can be badly effected just from being disturbed in surgery. And sometimes never recovers. And as a result of ongoing pain all my muscles in that area are extremely tense which isn’t helping. I’ve been referred for internal physio on nhs for this.
Although I need further tests she’s given me this alkaline diet to follow and said not to drink anything other than 1 coffee a day, apple squash or black current squash. I
guess you’ve probably been told the same?
It hasn’t got rid of the problem but has certainly helped a bit especially not needing to get up 9 times at night. And also taking low dose pregabalin which helps with that too.
She also recommended a supplement called d-mannose.
And a medication called Mirabegron which I’m yet to start.
I’m sorry to hear you’ve been through so much with your endo! Glad to hear you have found some treatments that have started to help.
I have been on an alkaline diet for probably the past year now as I also suffer with severe acid reflux (again potentially related?), so I now don’t drink anything other than water and the odd herbal tea and have cut lots of foods out of my diet - mostly just to keep my stomach at ease!
I’ve tried d-mannose for a while, but I feel this is mostly to relieve UTI’s which I wasn’t actually having in the end so gave up on that too, but might be worth trying again. And I haven’t heard of mirabegron so will look into it!
I think a lot of mine could possibly be tension related too, I know a certain degree of it is getting into a habit of needing to see constantly so I’ve done my best to reduce any stress and stay calm about it all, but can be near impossible during a really bad bladder flare up.
Yes a lot more to be done! The past few months I have definitely noticed that when my acid reflux is worse my bladder is far more painful also. Perhaps the whole body becomes inflamed or the stomach acid passes into the bladder? Would be really interesting to know. X
I have had a decade of cystitis/interstitial cystitis all treated with repeated antibiotics that gave me secondary infections, despite lab tests coming back negative. I had an ' investigative ' laparoscopy in September 2018. I don't think he looked everywhere in view of the current and recurring symptoms that I am left to deal with solo. No treatment for cystitis/IC. I am currently battling yet another cystitis. I also have IBS symptoms, to the point that I have had to put myself since May last year on an exclusion diet that excludes lemon, caffeine, tomato purée, hot spices, among other things. In terms of treatment, I have treated myself with Cytacalm (sodium citrate) and I am just starting D-manose. I am not yet sure about the D-manose.
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