Endometriosis of the bladder?

[avelvetcrowbar]

Hello! PCOS & Endometriosis.

Just another bladder/urinary related post as I have my urology appointment on Monday with a consultant to arrange a cystoscopy and I'm just planning out everything I want to say (sometimes I panic and don't get across how bad I really feel)

For at least 6 months now I've had constant bladder problems- mainly following my lap in early March this time last year. I can't hold my wee for long. My bladder aches. It stings and hurts to wee. I can't empty it properly. I have to go constantly 20x a day were talking. It wakes me up in the night. I have sharp stabbing pains sometimes in my urethra. Has any one had bladder endometriosis or anything similar?

It would be amazing if you had any similar symptoms/experiences if you could let me know!

Thanks!

Jordan.

X

[AbbieRowbotham94]

hey ive had endo for almost 5 years now I got diagnosed at the age of 16 after years of constant abdominal pain ive just recently had a op due to the pain I was in and they removed some endo that they could see also a cysts on my ovarie and blood from my pelvic, just before I had my operation I couldnt wee by myself at all and now im under urology havent had my appointment come through yet still waiting for it but I have to do self catheterisation endo has changed my life so much the past 5 years and it seems to be getting worse they are thinking of doing another operation now to see what is going on with my bladder xxx

[Joey_Eds13]

Hi!

Really sorry to hear your pain is so bad! I can massively sympathise...and shed a little positivity as I am now pain free!

I had surgery in June last year to remove a 3cmx4cm nodule of endo that was sitting between my uterus and bladder. It had infiltrated through my bladder wall which meant that I was getting blood in my urine during my period and the most debilitating pain. I had a few diagnostic tests including lap and cystoscopy but my actual surgery was quite major and I've got a bikini line/c section type scar. I had to have a catheter for 2 weeks post op so that my bladder could heal. As horrible as it all sounds, I have no regrets, as I'm pain free at last.

My husband and I are now trying for our first baby, so fingers crossed we get some luck soon.

Good luck with everything and stay positive. Xxx

[angelyn]

Hi there!

I saw your post and had to respond! I also panic and don't remember what I need to say. I've started taking my bf with me to appointments to back me up. From what I've read, only about 4% of people with Endo get it on the bladder. I was diagnosed with endo on my bladder via laporoscopy on xmas eve.

My symptoms started about a year ago with a burning pain in my pelvic area the week afer my period. It felt as if someone had stuck a hot coal in there and left it to burn. Over the last year it progressively got worse. My periods also changed from 1 week long every 3 weeks, to lasting 2 weeks and happening every 2 weeks.

About 5/6 months ago I started getting severe kidney pain. When it started it went round my side up to my back under my ribs. It could be a stabbing pain like that or my kidneys would throb and ache throughout the day. At the moment I have kidney pain everyday and the burning pain most days. Sometimes when Im on my period it feels like I have a UTI-not the burning in the urethra feeling, or feeling like I need to wee alot. But I get a very sore bladder, and it feels uncomfortable. The sore bladder can be so bad I can't walk. The stabbing kidney pains literally make my entire body spasm and I cry out in pain. (Not great if you work in an open plan office with 25 other people).

I ran out of painkillers this week and couldnt think about anything but the pain, couldnt sleep as bladder and kidneys so sore. I had to get up quite a few times in the night to wee, because it seems like the burning pain in my pelvic area was worse if I had a full (or half full even) bladder. So this symptom I will be raising at my next gynae appointment.

I tested positive for blood in my urine, but negative for infection (in both urine and blood samples) and had a negative ultrasound result when checking for kidney stones.

Although they found endo on the outside of my bladder, they didnt remove at as the location was too risky. However, I am surprised that no one is checking if I have endo in my bladder, especially with all this kidney pain Im having. I'm being sent for an MRI to check for adenomysosis as my consultant is puzzled by the amount of pain im in. At present the kidney pain is still a mystery.

I have read that some women have had similar to me, and their bloodtests to check kidney function have come back ok, but then later they had kidney problems on one specific kidney. This tends to only show up once you have massive kidney issues in the blood test, or earlier if they do something called a pyleogram.

Sometimes I have felt like its hard to urinate and there was once where I thought I couldn't urinate at all, but I thought maybe I imagined it. I will be raising these new symptoms at my next gynae app in april. They did mention before I had my lap that I may need a referral to a urologist as well.

My consultant said that if my MRI showed adenomyosis then I'm probably looking at a hysterectomy since it doesnt respond well to endo. Sods law will be if I have both. However, children is not something that I've wanted, but I realise how terrible this can be as it happened to one of my close friends. If its negative for adeno, then he wants to list me for surgery to try and remove the endo that they did find on the outside of my bladder.

My gp wouldnt refer me to urology as all the tests came up negative for infection and stones as well as my main symptom being pain. At my next gynae app I will push the uro angle as Im really worried about the kidney pain. Im currently on tramadol, naproxin and amytriptaline. I will be going back to my gp to ask for stronger pain killers as Im still experiencing pain. (At my lap they gave me morphine, and I still had kidney pain in the recovery ward)

I would ask them to check your blood and urine for signs of infection as if there is even the vaguest chance that you have a uti, it could travel to your kidneys if left untreated, and that is nothing to mess with. In the mean time you need to have your pain managed, so definitely push for painkillers strong enough as I know, burning coal bladder is ridiculously painful.

hugs

xx

[avelvetcrowbar in reply to angelyn]

Thanks so much for your really detailed and helpful comment. It means the world as I've been going crazy wondering what could possibly be happening with my body! As it's been for a long time now with no answers and I'm hoping to have some soon but I'm desperate to just be prepared for what it could be. I've just had some blood test done at the doctors on friday- I've also in the past 8/9 months had about 7 or 8 (or probably just one long issue) suspected utis- my lab results come back showing blood and such but it's totally unresponsive to anit-biotics. I've been on them solid for about 5 months now with no avail or relief. Im absolutely desperate to have someverything sort of relief from the pain and symptoms. With my ovaries and also my endo and pelvic pain and fatigue- with a crazy bladder on top I can barely cope and it's really affecting my studies! I've been referred back to gynecology for a mri and another consultation to see about another laparoscopy (this will be my 3rd) and then I also have a urologist appt tomorrow to organise having a cystoscopy. I'm so sorry you've had so much suffering with it and that you're having to consider hysterectomy as some sort of help. It's terrible. I would love children so if that was the worst case scenario for me I'd be pretty devastated.

My bladder symptoms have been the worst they've ever been. I have to pee urgently and constantly. Through the night. My bladder feels swollen, like a water balloon full to bursting- emptying it doesn't give me any relief at all. Sometimes I can't pee at all. And sometimes I pee only to feel like I have to go again a few minutes later. The burning and uncomfortable feeling is constant. I've only been told to take paracetamol or ibuprofen as pain relief despite stressing how much pain I'm in.

I'm pretty anxious about what it will all reveal but know I can'to put it off any longer. I'll keep everyone updated and I really hope that you are okay- thank you for sharing your experiences and story with me! I'm pretty depressed at the moment (I also suffer from depress) so it's some comfort to hear from people in a similar situation. Xxx

[Sweetyassi]

Hi,

I was in the same boat as you, been suffering terrible bladder, bowel pains, stabbing, burning constantly going for a wee I couldn't handle the pains. No pain killers worked on me. I had numerous operations and still no relief until I went to see a private consultant who found massive Endo sitting on top of my bladder and had penetrated through the bladder wall causing bleeding when I urinate. He removed the Endo and adhiesions, he unstuck my bowels, bladder, ovaries, vagina. Basically my insides were a big mess which the NHS doctors missed. I'm now pain free, and can walk around, get up without being in pain. I'm still recovering as I had my operation last year November.

If you need to chat just message me.

Hope everything works out for you, good luck.

Sweetyxxx

[avelvetcrowbar in reply to Sweetyassi]

Thank you SO much for your comment. It's a relief just to hear back from someone who seems to know exactly where I'm coming from! I'm sorry to hear you've had to go through such trouble too! I feel like I'm going a little crazy with everything if I'm honest! I'm worried that with another lap on the nhs that things will get missed for me too- but it's not an option for me to ever go private as I not overly well off and I'm a university student so it's just not feasible. I have a urology consultant appointment in the morning so I'm hoping that I'll be going in the right direction to figuring out what's going on. All I know is I can't go on any longer with how it is. I just Can't. I've been referred on Friday back to gynecology to see about having another laparoscopy due to constant chronic pain and worsening of my periods and bleeding and clotting despite being on the pill and such. Pretty certain it's come back since my operation last March and that it's been reaking havoc on my bladder and such. Hope you're recovering well and thanks again for replying! I'll keep everyone updated! Xxx

[Sweetyassi in reply to avelvetcrowbar]

Trust me you're not going crazy, I thought I was going crazy to.

I couldn't afford to go private but I was so desperate that I sold so many things just to get the money to go private. I'm not working only my hubby is and he works part time doing night shift.

I hope everything works out for you, keep us all posted.

If you need to chat I'm here for you.

Good luck

Sweety

[Steff2582344]

I have had the same problem as you for nearly a year now. Am awaiting my first laparoscopy but have had a cystocopy and they're still not sure what is wrong,

I hope it is on its way to beings sorted for you x

[Lilo915]

The symptoms you describe are exactly the same as mine! I literally feel like I constantly have a uti even though tests are always negative. I have to sit on the toilet for at least 15 mins while I pee because most times I never feel empty or keep getting the urge to go 5 more times! It's so difficult explaining it to people around us who have no idea how exhausting or uncomfortable it is. As much as I hate to hear of other people with the same symptoms it's almost a relief because my old consultant seemed to think it wasn't endo related even though it flares up worse during my period. My symptoms didn't really start until after my lap 10 months ago also, they found endo on both my ureters amongst other places and I was told they removed "everything they could" which leaves me wondering if they missed something/is there scarring now that's causing this pain/has it grown back?! Before the lap I did urinate a lot more frequently than others but that was really my only issue with my bladder.. Now it's a constant unrelenting problem. I can only imagine how much more difficult it would be as a student to have these symptoms too, I really hope the cystoscopy reveals something to put you at ease or you finally get some answers. X