Is it endometriosis, ovarian cancer or something else?

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Hi ladies

I need your help.

I was diagnosed with Ulcerative colitis in December 2009 when I was 34 weeks pregnant. Had a flare-up then that lasted 3 months. Flared again in Sep 2011 and was put on prednisone (3 months). Managed to get in remission shortly after.

Been in remission ever since.

However, 6 weeks ago started getting pain in lower right abdomen that radiated few inches from my belly button down my lower abdomen and groin toward my right leg, and also my lower back and felt urgency with urination.

Went to emergency and they ruled out appendicitis, UTI, hernia (blood work, urine and ultrasound all came back fine). Had colonoscopy few days later, Ulcerative colitis not active.

Had a CT scan of my abdomen to check for kidney stones. Results negative, ovaries and uterus look normal, no masses or tumors, no hernia.

Pain is still there, started dull/annoying and now sharp/stabbing. It comes and goes. My right abdomen seems a bit swollen (to me at least, maybe I’m just seeing things now) and it is causing discomfort with my c section scar. Pain comes on more when I’m sitting or bending over. Few doctors suggested endometriosis. Going to see gynecologist in September (no earlier time available) Blood test done for CA125 – came back fine.

My last urine test came back with traces of blood in it but no infection.

So my doctor is sending me to see a Urologist to investigate this further. I guess he will be doing cystoscopy using local anesthesia. yikes Not looking forward to it at all

I’m a bit worried, is it ovarian cancer, endometriosis or bladder issue

In a bit of a panic mode as I need to know what is causing this .. Any thoughts ?

Thank you for listening

 

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  • Posted

    blood in your urine can be caused by damage or infection so I would wait for the results and I hope that you are Ok.
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  • Posted

    Don't worry about a cystoscopy, it's over in minutes and isn't painful at all, I watched mine on the screen.

    I think they are just being thorough.

    The ct would have shown up if there was anything to worry about on your ovaries, plus the blood test was negative.

    It could be endometriosis, especially if the pain is worse around the time of your period, or it could be a hormone  problem.

    It could even be referred pain from your back if it hurts more sitting and bending.

    I hope the urologist can help you, Try not to worry too much, it seems that you are getting everything checked out.x.

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  • Posted

    No panic please, you have had a very good screen already (re ovarian cancer) and time now to go on with further investigation a bit more relaxed.

    I can give you some ideas due to our own frustrating unsolved chronic lower abdominal pain odysee to ask your doc at next consultation as it seems we need to do the digging for them:

     

    Your CA125 is neg, that is a good start.

    Does it 100% exclude endometriosis? no.

    Is a normal ovary and uterus in ultrasound scan excluding 100% endometriosis? no, BUT is a very good start since these are the most common places.

    There is actually an ultrasound (deep ultrasound with bowel prep) for endometriosis check as one possibility to check, but again: it is not 100% exclusion if nothing is found.

    When those two screens are neg, it comes down to history,

    you will be asked:

    how the pain feels (like menstruation cramping or different)

    you need to write the times/days down please together with your cycle.

    This gives the most valuable info to your gyn, if it could be endometriosis.

    You need to provide a good history and you have time to do so until Sep.

    (we are actually now trying the contraceptive pill if pain will change with it. It takes 3 months to influence the constant luteal cysts we experience, time, time, time.)

    There is only laparoscopy and special MRI left to exclude endometriosis if still suspected. (We did not get the MRI due to history (pain, days) not fitting into endometriosis.)

    There is one thing though, too, you had a cesarian. (My daughter had no surgery prior laparoscopy and still had adhesions along her ascending colon!)

    Ask if you could have adhesions please.

    Adhesions can cause pain. Surgery often causes adhesions.

    They can only be seen in a laparoscopy, our MRI enterography did not pick up on them.

    Abdominal pain is a huge field unfortunately.

    It can be anything else or nothing (after months of pain we are told now, that it was 'a chronic neuropath pain' and needed to see a pain specialist to block pain nerves....)

    About blood in urine, depends how much blood. If it is not macroscopically visible (red), just showing up as a few dots or fine tinge on the chemical test stripe.

    A few blood cells can go through even if you are low in vitamin C, the blood vessle walls seem to get influenced even with a bit of vitamine deficiancy (cave: if you test for glucose in urine chemically, a vit C intake boost makes false neg results). Of course there are other reasons too.

    It is good, if your bladder is investigated since you do have pain in the area. 

    Also you could ring up at your gyn (if you have already a good written down history of menstruation cycle and on which days the pain occured) and say, that you were terribly sorry, but pain so bad, if you could be put on the waiting list please.

    I have just gotten a call from pain specialist, instead of August we can come today! It does happen, waiting lists do work!

    All all the best!!!!!

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  • Posted

    Thank you all for your responses. I just came home from my doctor. I tought she requested ca125 with last blood work , but I guess that wasn't the case. I'm getting that done tomorrow. My urologist appointment is on July 4 ( fairly soon) . I called gyno about cancellation list but was told I can get in earlier only if I was pregnant. I'm going to see if I can find a private gyno clinic here in Canada. In the meantime, I m starting progestrin only pill tomorrow.

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    • Posted

      Oh lucky!

      (I asked for CA125 and due to normal pelvic ultrasound and history was refused 'too inconclusive anyway' she said. duh, so not true.)

      So you will get your CA125, good!

      Please keep adhesions in mind.

      And very frustrating with the staff at the front desk at gyn.

      It comes down to them, too. If they can be bothered, cancellation lists are work.

      Yes, your health is worth every cent, we are 1000s out of pocket privately, no savings, we struggle, but you do what you need to do.

      I hope you can find a culprit and tackle it. 

      Fingers crossed!

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    • Posted

      Thanks Sanya ! You have been lovely. I need to keep pushing for answers. And , yes I will keep adhesions in mind.

      I hope you find answers too.

      God, I love this forum.. So much support and positive vibes .

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    • Posted

      Love it, too!

      BTW little update after our pain specialist.

      We will go on neuropathic pain medication (guts are causing chronic spasm without a reason found in colonoscopy, but are stretched; cecum constipation even daily bowel movement, transverse colon prolapsed - all visible in xray- dismissed so far by GP and 2 gastroenterologists, and radiologists), increase osmotic powder for stool softness/avoidance of cecum constipation;

      physio for abdominal muscle pain spasm (separate issue).

      If not soon improvement, will get local anaesthetic into abdominal rectus muscle.

      In short:

      Ligaments stretched can cause muscles to be out of line (pain)

      Guts stretched - even for benign reason like chronic constipation- cause pain and not stop once constipation gone, takes time to retract. (if one has hyperflexibility in ligaments, thumb-bending to underarm no problem, it seems a bigger correlation to something like this happening over time)

      Hope you find some answers too soon! Good luck!

       

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    • Posted

      oh wow.. You have a lot going on.

      But at least you have a plan, so keep pushing.

      Is this for yourself or your daughter?

       

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    • Posted

      For my dear teenaged daughter, Yes, at least a plan to try out and makes sense. If nothing get's better, there are still a few spots (like small intestine, autoimmune GI disease) to be checked. It is not IBS, the prime symptoms are not exsiting, I doubt it is just in her head like the 'psychology' draw is opened very quickly for teenagers from the very beginning; I like it as an additional help, but not as the only help from the beginning. For now enough has been investigated, enough blood shed, she was very brave going through everything - unfortunately it takes too much time to get things done, waiting times, we could have been there months ago where we are now, if things moved faster -  and she does accept anything, because she wants to see her friends again back at school.
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  • Posted

    Hi Deana. Hats off to your medical team around you, as all the possibilites seem to be checked out /being screened etc. Good to be thorough if not for elimination purposes. If you have UC, the gold standard is colonoscopy - which you said was fine. Just one thing - did they take biopsies to check in case microscopic uc? You didnt mention faecal calprotectin stool test to check for inflammation - but if you've had colonoscopy this is better. The only other thing i can think of is possible scar tissues (adhesions) from your c section like sanya suggested possibly causing you pain, otherwise I would try not to worry & await all test results. I would personally be very happy with the wide range of tests/scans they are doing as covers everything. xx
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    • Posted

      Hi looloo

      As far as i know they didn't take biopsies to check for micoscopic uc.They did do blood work prior to my appoitment to check my immflamation marker and accoring to them it looked good. 

      Had a bit of an issue this morning with blood and mucous in my stool. My stool was white/clay in colour and I have been getting stabbing pain right under my right breast. Have been extremly tired and nauseaus and have a little fever now.  

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    • Posted

      Hi Deana. 1) I would double check whether they did biopsies/& results. They usually take biopsies on colonoscopies. Also, my blood markers for inflammation were normal recently, but my faecal calprotectin stool test came back abnormally raised for intestinal inflammation, so bloods don't always show problems. 2) If you've had blood/mucus in your stools it maybe worth you doing a faecal calprotectin stool test which can normally be arranged by you doing a poo sample through via your gastroenterolgy department. To me your symptoms sound like colitis. xxx

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    • Posted

      right upper side and clay stool? 

      On the other hand a one off clay stool is often fully 'normal' re liver bile production or gallbladder drainage and also (pain) medication can cause that colour...

      But mention it to your doc/history pls.

       

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    • Posted

      A LITTLE UPDATE

      -had a blood test Ca-125 (cancer tumour marker) - 9 kU/L (reference range normal <35), HCG - <5 U/L (= undetectable), AFP - 3 ug/L (reference range for normal/negative <9)  ALL CAME BACK NORMAL

      -had another ultrasound to check gallbladder - CAME BACK NORMAL

      -had anothe blood test - CAME BACK NORMAL, LIVER ENZYMES GOOD.. EXCEPT Inflammatory marker up a bit- non-specific.

      So they have rulled most of it out.

      My next appointment is Urologist on Monday.

      They want to scope my bladder.. oh joys.. Also, I started progrestin only pill yesterday to help with my period and potential endometriosis. Gyno appointment in Sep. I'm going to Europe in August, and I got an appointmnet with GYNO there.

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    • Posted

      A LITTLE UPDATE

      -had a blood test Ca-125 (cancer tumour marker) - 9 kU/L (reference range normal <35), HCG - <5 U/L (= undetectable), AFP - 3 ug/L (reference range for normal/negative <9)  ALL CAME BACK NORMAL

      -had another ultrasound to check gallbladder - CAME BACK NORMAL

      -had anothe blood test - CAME BACK NORMAL, LIVER ENZYMES GOOD.. EXCEPT Inflammatory marker up a bit- non-specific.

      So they have rulled most of it out.

      My next appointment is Urologist on Monday.

      They want to scope my bladder.. oh joys.. Also, I started progrestin only pill yesterday to help with my period and potential endometriosis. Gyno appointment in Sep. I'm going to Europe in August, and I got an appointmnet with GYNO there.

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    • Posted

      Don't worry about cystoscope Deana, it's absolutely nothing, a bit of fiddling to get scope in, that's all.

      I found it fascinating, watching it, looks like another planet, I had my rectocele then, and it looked huge like a mountain! Wouldn't have thought it would have shown on a bladder scan.

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    • Posted

      wow you are brave Laura!

      I had an emergency colonoscopy when I was 34 weeks pregnant. No sedation as it wasn't safe for the baby, they just gave me morphine for the pain.

      They asked if I wanted to watch the screen.. I was like " NO THANK YOU !"  lol

       

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    • Posted

      Your soooooooooooooooo brave!!! I have colonoscopy tomorrow - will not be watching, & will be having sedation!!! Just hope I am not to sleepy tomorrow night so I can watch the euro match with my hubby in the evening! xx

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    • Posted

      I'm not brave, sedation doesn't work on me, so I don't have it nowadays, so I can drive myself home.

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    • Posted

      Hi Deana. Thankyou for asking hun. The bowel prep before was awful as expected from previous scopes. had 2 doses of moviprep one fri evening, 2nd sat am, between the 2 I had over 60 watery bm's - like a sodding tap! The scope was as expected pain wise, at least with that you can ask for more pain relief to be injected during the scope if you need it so you have some control compared to the prep!! The colon was quiescent to the naked eye, so have to wait for biopsy results to see if any inflammation not visible/tissue changes & they also found a small sessile polyp in the ascending colon which they removed & sent off for analysis. little bit worried about type of polyp & location ( had a benign hyperplastic polyp removed from left colon 3.3yrs ago). I've also asked my gastro consultant to consider contrast mri scan on my small bowel as its never been looked at in full plus other reasons leading me to think they should have a look (awaiting a reply from him). so having to wait for biopsy results now in 2-3wks before going forward further. I see from your other posts you're no further forward with identifying root of your problem yet, but at least they are being thorough & eliminating things. Did you ever double check if they took biopsies during your colonoscopy & the results? Also have they ever looked at your small bowel? colonoscopies & endoscopies only see the very end & beginning of small bowel respectively, so what about all that intestine in between? Would be worth asking about if you have bowel symptoms such as abdo pain, diarrea, frequency & urgency symptoms. xxx

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    • Posted

      I am sorry to read: Bowel prep was awful?

      I hope they did not give you an old fashioned cramping preparation.

      My daughter and mum got 'Picolax' which keeps water in the guts (osmotic), but does not actively cause 'cramps' to push it out as was so often given in former times. No need for enemas either. Yes, not nice running to toilet often (again it was not that often as expected and the colon was 'squeaky clean' said doc), but it should not hurt.

      We were actually astonished how easy and pain free the new prep was since my old fashioned clean out for operations always hurt like hell with cramping. (unless intestine is so upset already, that also osmotic prep would hurt??) What did you get for prep?....just out of interest. Because if it was old-fashioned cramping stuff, you definitely need to look for another pain free alternative in case ever needed again. Some docs are using xyz for years not even considering new preps. Poor you.

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    • Posted

      ah, moviprep, here it says it anyway. TA!

      Moviprep is known to cause 'considerable cramping'

      especially when taken in one sitting.

      (ncbi page has a very good study of all available cleansing procedures and products. Pros and cons, often the amount of liquid that can be drunk is the limiting factor.

      Moviprep: PEG 3350 with 10.6 gm of Ascorbic acid/Sodium ascorbate...

      Picolax is different: 0.01g of Sodium picosulfate, 3.5gm of magnesium oxide and 12g of citric acid. Picolax also used for children, and that is always a good hint, that it is well looked at 'cramping' side.

       Maybe you could ask your doc if Moviprep had to be used for you and if you could try Picolax next time. ???

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    • Posted

      Hi Sanya. Thanks for commenting. funnily enough the pre-procedure chat with nurse i asked if there was another prep in case i had to have any more procedures in future-she said about picolax, & its more tolerable as you just drink one glass of it followed by lots of plain water to activate it. the moviprep each dose is 1 litre of sachets/water that tastes like sweet salt water & almost made me gag at times drinking it, let alone the after effects - all in all a horrid prep. i will ask if i need to in future if i can do picolax - at least it will be easier to get down & may cause less abdo pain like you say. I will update you when i get my biopsy results. xx

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    • Posted

      That is good news, thats funny, 

      and being kind of confirmed from two ends, makes you mabye at least a bit relieved about next prep in case ever needed again.

      One just wonders why you were not given Picolax in the first place...rolleyes

      I can buy Picolax over the counter where I live (and I did already to have a spare one home, just in case)....and kept the prep leavlet, that worked a beauty for my daughter (depending if morning or afternoon colonoscopy was scheduled, the timing of dose and diet was different).

      It really was not bad considering the colon had to be cleaned out.

      All the best and keeping fingers and toes crossed!

       

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