Discussions By Condition: I cannot get a diagnosis.

What is this pain?

Posted In: I cannot get a diagnosis. 16 Replies
  • Posted By: michali
  • February 10, 2007
  • 10:23 PM

For the first six months of last year, I had this slight annoying pain in my left lower pelvis. I had an ultrasound of ovary and pelvis and everything came back normal. Then in July, I was dx with follicular lymphoma and around the time of surgery to biopsy the nodes that were in the mesentery and much higher up than the pain, the pain went away! I was then treated with chemotherapy for the lymphoma and at the end of another six months, the pain in the left lower pelvis came back. My oncologist felt it might be a bowel problem and sent me for a colonoscopy, the results of which came back normal.

Any ideas what this might be? I feel I have had all tests available. My ct scans show nothing remarkable in the pelvis and I am due for another in a week or two to ensure the enlarged mesentery lymph nodes have gone.

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16 Replies:

  • hi :) it sounds like endometriosis. endo can cause pain there and does not show up on pelvic, ct scan, x ray, etc. The only test to diagnose it accurately is a laparoscopy. other symptoms can include: pain in the lower back and legs, pressure or pain in the pelvis/abdomen/rectum, painful periods, menstrual irregularities, and quite a few others. It can range from none or mild symptoms to major pain and problems. its not just a reproductive area problem, as it can grow onto your colon, intestines, ligaments, etc. if everything comes back normal when all your testing is finished- it would be good to ask your doctor about the symptoms of endometriosis and a possible laparoscopy. good luck :)
    kamsae 88 Replies
    • February 11, 2007
    • 04:05 PM
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  • Thanks for your response but I think I am too old to have that....I should have mentioned I am 61 and have had no periods since I was 47. I would think too that adhesions are unlikely as the only surgery I have had in that area was when I was 40 and was a tubal ligation. Luckily this is a pain I can live with if I have to! I have other problems which are more serious but it is always a bit worrying to have unexplained symptoms, especially in this day of such advanced technology.
    michali 10 Replies
    • February 11, 2007
    • 04:28 PM
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  • Its also commonly found in women with hysterectomies, post menopause, elderly, etc. (EXTREMELY RARE-in children and even in a few men!) the endometrial deposits can grow anywhere in the body- most common is the pelvic area, less common but frequent is the colonic and intestinal regions, rarely it has spread to the lungs,heart,and brain. the only place in the body that it has not yet been discovered in is the spleen. you can get more info through internet searches about this kind of spread with words like "bowel obstruction, intestinal, colonic,etc" one at a time combined with "endometriosis".
    kamsae 88 Replies
    • February 11, 2007
    • 05:03 PM
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  • Interesting points you have made! Only question now is why it would have disappeared completely for six months last year. My oncologist suggested that it was there all the time but I was focussed on my cancer treatment but I know definitely it went away completely in July ( I started chemo at the end of August) and did not return until mid January of this year. I would not opt for any surgery at this point of time. It is a pity it does not show up on scans, ultrasounds or colonoscopy!
    michali 10 Replies
    • February 11, 2007
    • 05:44 PM
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  • hello again:) the pain and symptoms usually are progreesive, but can be unnoticable depending on its location and severity. for example:lets say that the pain in your lower left quadrant is an endometrial deposit, cyst, or adhesion........ It causes pain as it irritates or puts pressure on the nerves and tissues it is against. If it is a cyst formation-it could rupture ,this would resolve the pressure against the nerves. inflammation would usually result but mild or short term discomfort is more likely.this could make the symptoms cease for a while. in a deposit formation- as hormone levels in your body change, the deposit can be reabsorbed into your tissues, also decreasing the symptoms. in an endometrial adhesion- The growth joins organs (example-colon and bladder) together. If the adhesion tears- then it could relieve the symptoms as well. If it is endometriosis:these symptoms are highly likely to appear again, though not as rapidly if you are post-menopausal, and not experiencing hormone fluxuations. other conditions can cause discomfort there too. do you have any bathroom troubles or eating difficulties?
    kamsae 88 Replies
    • February 11, 2007
    • 06:04 PM
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  • Wow! you really know your stuff! Thanks so much for all the information. What surprises me that no one has suggested endo to me, in spite of the fact they were baffled by the unexplained symptoms. No, I have no bathroom problems at all, or eating for that matter. As I say, I had a colonoscopy last Friday and that showed everything was normal, but of course, that only deals with the inside of the colon. Why is it that endo does not show up on ct scans and ultrasounds? I really appreciate your input. I have already learnt alot!
    michali 10 Replies
    • February 11, 2007
    • 06:38 PM
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  • :) thank you. long and complicated story actually. My low left side hurts constantly for the the last year. during the menstrual cycle i get really sick- terrible pain, nausea, cant poop, etc. its been getting worse with each period. i feel fine between periods other than the pain in the side. I can feel a hard mass there- so can the doctors but they dont know what it is. it didnt show on a pelvic exam/ pelvic ultrasound, or ct scan. i have a endoscopy and flex sigmoidoscopy scheduled for next tuesday. I have had back, leg, pain and bad menstrual cramps for years but it only became aggressive in the last 3 months. both of my sisters had these problems and had the laparoscopy, both had endometriosis(one had spread to the intestines and colon). the pain and progression has me terrified, and my doctor doesnt listen, so i have been studying everything i can find on it to get better results and hopefully fix me! I have been misdiagnosed 8 times- all diagnoses have only a few common factors- all shared with endo.
    kamsae 88 Replies
    • February 11, 2007
    • 07:17 PM
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  • sorry- the other question, i dont knowwhy it doesnt show on the other tests. all the websites say it doesnt- but with no further explanations. i think its probably becuase its the same kind of tissue that is normally in the body and doenst follow any particular size,shape,or color. can blend in or be concealed by other fluids and organs. i think regular fluid cysts show becuase of the liquid and ball form, tumors- because they are solid. good question, i wish i really knew!
    kamsae 88 Replies
    • February 11, 2007
    • 07:23 PM
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  • I am so sorry to hear about the pain you are in. I hope you will get answers soon so that you can be treated. I appreciate your input to my problem, which seems small in comparison.
    michali 10 Replies
    • February 11, 2007
    • 07:26 PM
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  • thank you. i am happy though to be pretty sure of what is wrong with me. its more frightening i think for people who have no idea. They can have obstructions and major problems from undiagnosed progression. Im lucky to have my sisters input and guidance. im not sure what else it could be for you. have they done a ct scan (for growths or physical abnormalities)?or blood tests to check for infection?
    kamsae 88 Replies
    • February 11, 2007
    • 07:35 PM
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  • Yes, I have had scans, ultrasound, blood test and colonoscopy. I am due to have another ct scan next week to check lymphoma so we will see if it shows anything the previous two did not show.
    michali 10 Replies
    • February 11, 2007
    • 08:23 PM
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  • Hi Michali:I was reading your post and I have a question about your follicular lymphoma?I noticed you mentioned it was in the mesentary....How did you get your diagnosis? Did you have abdominal pain??The reason I ask is because I'm 36 and I have been suffering with terrible upper abdominal pain and when I had a CT Scan done, they told me I have mesentary adenitis and general adenitis throughout my abdomen. The ER doc said it was probably a virus, however I've had this pain for a month now and it's only getting worse...When I read about mesentary adenitis, everything I saw indicated children and teens get this, but, it's very uncommon in adults.Anyway, I'm worried maybe I have cancer, so any help you can give me is appreciated.
    Anonymous 42789 Replies
    • February 11, 2007
    • 09:51 PM
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  • Hi, I had to read up on mesenteric adenitis! I agree with you that is rather long for it to be going on as you have had it for a month now. I would go back to the doctor if I were you, but it may be that the virus is taking longer to leave your system, particularly as they said you had general abdominal adenitis.As to my lymphoma, it showed up on a ct scan that was done to try and find the reason for my low left side pain in the pelvis. The enlarged lymph nodes showed up in the mesentery....higher up than the location of the pain I was/am now getting again. Because of the formation of the lymph nodes, the radiologist suggested it was lymphoma, which was confirmed by a biopsy. I had no pain in the area of the enlarged lymph nodes.I hope you get answers to your symptoms soon. It is awful not knowing and the mind can run riot with all the possiblities!
    michali 10 Replies
    • February 11, 2007
    • 10:56 PM
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  • can you tell me a little more about your lymphoma? My gastrointerology tests came back good- but my pap smear was abnormal and im still having bleeding episodes and increasingly severe pain. cancer is a major fear and my lymph nodes have been swelling one after another since early january. theres no fevers and ive been on antibiotics but no changes. some hurt and some dont. any of these things with you?
    kamsae 88 Replies
    • February 14, 2007
    • 03:53 PM
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  • No, I had none of those symptoms. Mine only showed up when I had the scan for the pain I am getting in the left lower pelvis. And that is not a severe pain at all. The pattern of the lymph nodes in the mesentery made the radiologist suspect lymphoma before the biopsy, which is the only certain way to make a diagnosis of lymphoma.I do hope you get answers soon. Have you had a pelvic ultrasound?
    Anonymous 42789 Replies
    • February 14, 2007
    • 04:42 PM
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  • Sorry, that was me in the previous post! Also, do blood works show anything? They would normally indicate if there is an infection.
    michali 10 Replies
    • February 14, 2007
    • 04:44 PM
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