Endo, bladder and bowel problems??

[debstar86]

Hi ya all, I'm new on here and just wanting to know I'm not alone really... I had appendix removed in 2012 to which I was told I had a lot of scarring when they had a good look around to my request as I'd been suffering pelvic pain, cramps etc and believed I was an endometriosis sufferer. The surgeon confirmed it orally but did not record it!! 2 and a half year on and I just felt like I can't cope no more... I gave birth 5 months ago and was hoping it would improve but I'm actually worse off!! With every period the pain just gets worse, I now seem 2 be experiencing bladder and bowel problems... I constantly feel like I have a kidney infection or really bad uti but my urine is always clear, I have awful back pain, constant stomach cramps, pain before and after passing and I'm literally making a trip to the toilet every half hour to which most of the time it's not full and if I hold myself the pain just gets to much... onto my bowel, it's been said I suffer from ibs although I'm dead certain it's the endo causing me problems. I frequently suffer from constipation and extreme bloating but lately have been experiencing extreme cramps until I've had a bowel movement but to actually go a toilet is so painful I could cry, I've also experience some bleeding from my rectum during a movement.

Is anyone else having this? And can endo cause these types of problems or am I getting it wrong? I honestly don't know where to turn but I know I can't take anymore, it's affecting my daily life now

[Tboag]

I think you should go to your Gp and be referred again to a gyne doc, preferably an endo specialist, it sounds like it could be endo, don't go another day suffering alone, you need to find out if there is anything that can make you feel better, a baby is hard enough without feeling unwell as well, good luck.

[debstar86 in reply to Tboag]

Thank you so much for reply.. I've made a doctor's appointment so I can have it looked into... I'm on the pill as I was hoping that would help as I've heard it can but nothing works not even pain killers... I'm due on this weekend and I can't even describe the pain in my pelvis, it's like a constant pain like pressure and I get a pulse like pain in 1 particular area, it drives me insane... do all sufferers have issues with heavy bleeding? As I would say I have a normal flow it's more pain and with the related problems with my bladder and bowel I can only put it down 2 this... Thanks again x

[Ginger5641]

Possibly sounds like you need to have that rechecked out. Because can be many explanations. The Endometriosis can come back, but doesn't necessarily mean so. That's something that has to be checked out by a Dr. And take that seriously. Good luck to you. Hope your pain gets better.

[angelyn]

I've copied much of my post from another thread but relevant. I don't have the bowel issues, but 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. You also may have something called Interstital Cystitis (IC), which can cause symptoms like that. I think they diagnose that with a cystoscopy. Many women with endo get fobbed off with an IBS diagnosis. They even tried to tell me I had IBS, even though I had no symptoms relating to my bowel. However, one of my gps did say that endo with bowel involvement can cause agonising pain when you pass a movement.

hugs

xx

[elliepet]

I had the same problem, had my appendix out when i was 15, always suffered with periods from the age of 10, always really heavy. Then over a year ago (now 27) after having a horrible kidney infection which caused me to bleed bad and had to go a& e ever since then i had pressure feelings like water infections on and off every month for over a year, docs kept giving me antibiotics even tho no sign of infection most of the time and the pain would always be so bad around my period. So i suspected endo and in October had a laparoscopy which confirmed I had endo mild and they said they treated it by laser however the pressure in my bladder continued and i still suffer bad with periods making me feel like i have the flu everytime. I am now on the waiting list to have a biopsy on my bladder as they believe it is something else and not endo as they treated that. Been trying to conceive since the end of November, no luck so far.