Endometriosis Community
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Bladder, Kidney, Abdominal Pain, Pressure, Etc.

I was diagnosed 2 yrs ago with endometriosis after the gyno biopsied a nodule on my uterus, along with many endo symptoms. With all the increasing intestinal and abdominal issues they think it has spread on my intestines also.

I have put off surgery due to thinking there may be more going on than endo - Now for over a month I have constant pain in left kidney around to spleen and all down my left side of abdomen to my bladder, with sharp pains coming and going through all those areas, also feels swollen painful and lumpy down my left side of abdomen.

My bladder is the worst as I always feel pressure like bladder is going to burst, urinating does not help and even feels worse after. I did have alot of blood in urine & infection a month ago, but has resolved only to have bladder, kidney pain, etc keep worsening.

Also having trouble eating, too much pressure, alot of nausea, dizzyness, fever comes & goes, chills/sweats and I keep loosing weight (went from my normal 155 down to 130 in last 6 months).

CT without contrast did not show any kidney stones, it only showed pelvic phleboliths (calcium like stones in my pelvic veins which dr. didn't seem concerned about those). I am supposed to see urologist for cytoscope, but cant get in for 3 weeks.

I am wondering if endo could be causing all the kidney, bladder pressure, pain, left side pain, increasing sickness, weight loss, etc.

I also read that a pelvic MRI should be done before endo surgery to see if it is deep into organs so they can prepare and do the correct prep for surgery, but no one has ever ordered a pelvic or abdominal MRI for me, even after these 2 years of increasing problems.

Would an MRI show other problems that may be going on that the CT without contrast wouldn't show? Should I request an mri before scheduling surgery? Does this all sound like endo or maybe other problems?

I also noticed my left ovary - same side as all my additional pain, increased from 15mm in length to 4.6 cm in length within a year and also wonder if that is normal for ovary to almost triple in size in a year. (I don't think that is causing all my abdominal, pelvic, bladder, kidney problems, but I thought I should mention it just incase).

Any info or advice on these issues is greatly appreciated, as I am worried and severely suffering from this constantly every day.
Thank you.
1 Responses
Avatar universal
Hi Angelize,

I too have battled with endometriosis and it is a most challenging disease!  I have had a complete hysterectomy with ovaries removed to supposedly cure the disease, but it did not...unfortunately it caused many more issues as the only way to remove (there is no 100% cure for this disease) but the closest thing to being cured is through excision surgery (where they cut the disease out) if they do ablation it will only cover the surface of the disease where the disease it's self is much like plantars warts (very deep roots) I have lost many organs to this disease needlessly because I did not get to an endomtriosis specialist so I would strongly recommend you find one...there are only about 100 world wide so just because they say they are does not mean they truly are so ask them if they do excision (cut the disease out) as this is the only way to remove the disease.

Many of your symptoms sound very much like my endometriosis and I did have bowel endometriosis which lead me to having a bowel resection because it took me so long to get to the specialists.It has been removed from my bladder twice as well as my ureters and because it is a disease that causes MUCH inflammation everything it touches can be painful although this is not always the case which is why Dr.'s are still struggling to figure this disease out, which is why a specialist is what all endo gals need to see...I even flew several states away to get to one of the best endo surgeons worldwide and she was worth it as I am so much better now 2 years out from my hopefully final excision surgery.

Have you been tested via cystoscopy for interstitial cystitis? As it is commonly referred to as endo's evil twin sister...I have that and it can cause severe bladder pain which I manage with diet and occasionally pyridium.

As far as tests (MRI's, ultra sounds and so on) they do not show endometriosis. I had all those tests prior to my hysterectomy and they showed nothing when the surgeon got inside my abdomen it was stage 4 with organs glued together ~ it was so bad that the gyn thought my appendix had burst but below all the adhesion's my appendix was fine...so it was left only to be removed later in my first excision surgery and it was full of endo even though it's appearance was completely normal, pathology told a different story so the only way to definitely check for endometriosis is through surgery ~ unfortunately. Please find an endometriosis surgeon so that when they go in to look for endo they will also be able to remove the disease with excision! If I can help you with any other questions please ask! I have been dealing with this disease for over 20 years...I am in contact with many of the top notch endometriosis excision specialists and would love to see you get to a better place as I have...unfortunately endmetriosis can be alot like a grain of sand in the eye (causes severe pain, but hard to see) so in order to have your best chance of being pain free you definitely want and need to find an endometriosis specialist!
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