Can mild endo be found in pelvic area but causing issues in other areas?

Hi all

Has anyone been told they have mild endo in pelvic area on 1st lap for the main problem to be located in other areas?

I had a lap last Sept and mild endo was removed from my pelvic wall. One patch was located just in front of my bladder. My consultant said I did not need any follow up with him but if my symptoms did not improve or came back then to go back to GP and get a referral back to him.

Prior to this I had been going back and forth between my GP and the Urology department of my local hospital because initially they thought it was kidney stones. My CT scan did show what they thought might be a small stone stuck in my ureter but when they operated they could not locate anything. They said my bladder looked OK but the tubes were tight so was a bit difficult to have a proper look! To be honest they were really unhelpful and just told me it wasn’t a urological problem.

My question is has anyone else had similar experience? Although initially after the lap I did feel much better over the course of 6 months the same symptoms along with some bowel issues have come back. I have asked to be referred back to the consultant who did the lap so I can ask for an MRI scan to rule out anything else. This may be a stupid question but can endo be found within the ureter so not picked up in a lap? If it was on the outside would my consultant have been able to see it?

Any advice given would be greatly received before I see this consultant again xx

7 Replies

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  • I think if it was on the outside of the ureter they can see it. If it's on the inside then a lap wouldn't pick that up. Perhaps an MRI might pick up if there is something in your tubes? Is your consultant an endo specialist?

    What were your symptoms with the bladder? I had the same - one of my areas was a patch in front of bladder. I had excruciating bladder pain - the worst being first 24 to 48 hours of period and ovulation. I honestly thought it must be on or in my bladder as it was so painful and peeing was unbearable (then after peeing I had a deep relentless aching pain). Now it's been excised that's gone away (I had it done mid Nov). Thinking about it, I guess the bladder filled with urine and pressed on the patch of endo or something. When I urinated it must have shifted things around and perhaps pulled on that area.

  • I don't think he is an endo specialist as such it says on his profile he has an interest in endo. My main problems were needing to wee more, I did pass blood in my urine which is why they thought it was a stone. General lower back and hip pain and pelvic pain which. I also had loin and side pain but never pain when passing urine. As I felt good after the lap and as time goes by these symptoms have come back I am just wondering if something got missed. It's only been 6 months since my op so I would have thought to soon for the areas that were treated to be causing the problem again?

  • Hi - can you send me the name of the consultant and hospital so we can check the consultant out. All obstetric gynaecologists have an 'interest' in endo as it comes under the general gynaecology umbrella but a specialist will have specialist laparoscopy training/experience under his/her belt.

    Have a look at my posts on endo and its symptoms and how to find a specialist to give you some background to the issue. I will be back tonight. x

  • I'd want to see an endo specialist if I were you. I'd definitely want to know why there is blood in your urine. As you said, if this issue is there now it seems they missed some endo during surgery or something else is wrong.

  • Hello, do you no if they used laser or excision on the areas of endo that they removed??

    6 months is a long time really and it is possible that you have endo back in other places too, try to get a referral to a endo specialist

    Good luck

  • Yes! There are a few of us on here with the kidney pain you speak of.

    Had lap and endo found on bladder but not removed.

    Main symptoms

    Periods changed from 1 week every 3 weeks to last 2 weeks an happen every 2 weeks

    Started off having burning pain in pelvis around ovulation

    Started having excruciating flank and kidney pain.

    Blood in urine but no infection or kidney stones.

    lthe burning pain and kidney pain are now both daily.

    kidney pain gets worse when I'm on my period,when my bladder full or immediately after a wee.

    Apparently the endo they found on my bladder was 2 small spots. Doctors are at a loss as to why I'm in so much pain in the kidney area. (I'm now on morphine,tramadol and other stuff).

    I read a medical paper about endo inside the urinary tract and kidney pain is a symptom.

    So ive just had pelvic mri. I'll hear results next week. Just like my lap I'm not sure if anyone looked at my kidneys. I'll be pushing for them to check if it's on my kidneys or inside my bladder/ureters, since they already found it on outside of bladder.

    I've followed a number of ladies with kidney pain so have a look on my profile. I think that who I've followed is visible there. You can read my journey start to now.

    Long story short small bladder endo found in lap. Debilitating kidney pain still a mystery. Will update when I know more.

    an mri I think may show endo in ureters if they are specifically looking there. A cystoscopy can look inside bladder I think but can't see endo in lining of bladder think that's mri. Not all bladder endo shows in mri either.

    Xxx

  • Hi again Carey

    I have been looking at both your posts again and see your symptoms returned 6 months or so after your lap (lower back, hip and leg pain with change of bowel habits) and the mirena hasn't helped. I know that the CT you had showed some sort of abnormality of your left ureter but when they operated the tubes were 'tight' so they could not have a proper look. This does indicate that the op was effectively unfinished and I see that the endo they did find on your pelvic wall and bladder was just ablated which always means that removal might not have been thorough. The surgeon told you to ask for a further referral if your symptoms did not go away or came back. This almost suggests he was expecting it? And your GP said that endo hidden endo in the bowel area might not be found.

    So the scene is set for requesting another referral and presumably your GP will be very happy with this, but it is all about going to the right place and getting the referral letter right. I should take some time writing down your history and symptoms when you go to him/her and include all of the above - the abnormal appearance of the ureter that was never resolved, his/her own comment to you that endo in the bowel area might have been missed, the consultant telling you to go back if symptoms weren't resoved almost as though he was expecting it. Then bring up the ureter issue and say you have come across several women on a support group that have had this overlooked and you are really concerned about it. Different GPs are different in how they accept patients researching their conditions (they shouldn't be) but mention that it is almost always the left ureter and usually the only symptom is high blood pressure, often cyclical, that you have had recorded. I am giving links below to 2 papers that mention the difficulty in diagnosing but both mention hypertension.

    ncbi.nlm.nih.gov/pmc/articl...

    air.unimi.it/retrieve/handl...

    Then you can refer back to being told to request another referral but say you want it to be an endo centre who specialise in identifying this sort of complex endo if it is there, and take the list with you. Be sure to be part of the letter to make sure it says that there is a concern for endo in the bowel area and on the left ureter that might have been missed.

    Let me know how you get on x

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