Discussions By Condition: I cannot get a diagnosis.

There is no stress at home - ack!

Posted In: I cannot get a diagnosis. 7 Replies
  • Posted By: Anonymous
  • April 12, 2007
  • 10:06 PM

Just came from primary, who after being given this list asked if i was under any stress at home ...sigh. All of these symptoms could be caused by endometriosis. Gyn will not perform lap until everything else is ruled out. Am I being overly optimistic in believing this is endo, or does it sound like something else (I guess cancer most frightens me)? Thanks


46 yo female, 125 lbs, 5'5


Tests
Suspected adenomyosis, tipped uterus (vaginal ultrasound 10/06)
Left knee hyper-reflexive compared to right
Negative pap and negative endometrial biopsy, ovaries fine per ultrasound 10/06
Scheduled colonoscopy 6/07
Scheduled lumbosacral MRI w & w/o contrast 4/27


Back Symptoms last 6 months worse around period - altho becoming constant
Low back pain/pressure not relieved by resting - worse at night
Tailbone pain
Weakness in left leg when coming off of stair - sometimes just walking
Sensory issues sometimes - both legs (“vibrates” when touched)
Radiating pain to inner left thigh
RLS (present off and on for many years)
---- Gynecologist says above may not be gynecological and wants me to rule out other causes

Gynecological symptoms last 6 - 12 months (onset when going off of seasonale)
Burning uterus pain starting up to 10 days before period (requires heating pad and am in bed for at least 2 full days unable to function)
Large clots at period
Migraines at period and ovulation
Scant blood after sex (btw, 1st symptom which began 16 months ago)

Bowel symptoms last 4 - 6 months

Blood-tinged mucous on outside of stool - comes and goes - most recently blood along with diarrhea 2 nights ago
Bloating, gas and constipation relieved by cutting out wheat 3 months ago
Stool generally small pellets passed at least twice a day

Appetite and weight
Loss of appetite
Weight down 10-15 pounds (lost 10 pounds during a single period)

Insomnia
Extremely severe around period - in spite of taking ambien was still up 36 hours straight

Urinary
Cystitis around my period

Fatigue
Difficulty in accomplishing everyday tasks such as showering, emptying and loading dishwasher, doing laundry

- Problems are becoming more severe and spreading with each period despite supplementing with natural progesterone. I will not take any synthetics due to the onset of symptoms after bcps and history of breast and ovarian cancer in family. Btw, paternal aunt had severe case of endometriosis prior to breast cancer diagnosis.

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7 Replies:

  • Has anything been done to rule out cancer or HIV? That kind of weight loss is quite typical in either disease. You should also get some normal blood testing done to look for inflamatory markers (C-Reactive Protein) and check for colitis.
    Anonymous 42,789 Replies Flag this Response
  • I found out I was HIV neg 10/06 when a life ins exam tested for it 10 pounds of the weight loss came during one menstrual period when I didnt eat the entire time becoz there was so much pain with bowel movements. After that I stopped eating wheat - I think that may be where the other fluctuating 5 pounds went. I've also been eating really lightly and blandly trying to keep my stomach straight. Ex: I just had some flourless choc cake and my stomach is starting to act up. What is the the other test you mentioned for? The colonoscopy and back mri should rule out those cancer questions, all gyn cancers which would make the most sense have been ruled out Thks
    Anonymous 42,789 Replies Flag this Response
  • never mind, i see the answer...colonoscopy shld rule colitis in or out. I've also read that endo can grow on the outside of the bowel and cause blood in stool..would be good to know if there is c reactive protein for other inflammatory conditions too..thks again
    Anonymous 42,789 Replies Flag this Response
  • For your stomach, intestinal and bowel symptoms, I would see a gastrointerologist. You could possibly have celiac disease. I had a friend who has had some similar symptoms to yours and was constantyl feelign sick and losing weight. For the heck of it they tested her for celiac disease and she had it. Celiacs cannot tolerate gluten, so they have to have a glutten free diet-no wheat. If you feel better when you stop eating wheat, then you may be a celiac.
    Anonymous 42,789 Replies Flag this Response
  • I greatly suspect celiac disease is at the root of this. In fact, untreated celiac disease is theorized to lead to endometriosis. I also really feel that my back pain &other related symptoms are due to my inflamed tipped uterus, which could have attached itself to my bowel with endometrial tissue, and if nothing else, is putting pressure on it as well. The back MRI should show this, altho endo tissue may not show up on mri. I guess I just have to be patient for 2 weeks to see if this is the case. Maybe I will schedule another appt with GI to see about getting tested for celiac disease while i am waiting for colonoscopy - thank you
    Anonymous 42,789 Replies Flag this Response
  • It sounds like the doctor is doing what he is supposed to be doing so far. Has he done blood work that is for showing any cancer markers in the blood? I'm thinking it is a tumor though, because of the neurological problems in the left leg. Something is hitting the nerves. Which should tell the doc where to take the MRI. The tumor can cause a lot of inflammation and some tumors can exists for decades before really getting worse. They can also turn to cancer. The big thing is the MRI, that will physically show them what is in there. Also, be sure that the radiologist report doesnt get lost and that when you go to your doctor's appointment, go pick up your films and show them to the doctor. Some Radiologists are morons and lose reports, like what happened to me. If the radiologist misses something, maybe your doctor will see it. It shouldnt be that way but I picked up my films from an MRI taken in 2000 a couple of years ago and VOILA - there was no report, it was lost, and it was a very ABNORMAL MRI. Does ice help with reducing pain at all? Have you tried that? Ice reduces inflammation if it is near to what is inflammed. Heat would actually make it more inflammed. That might be a clue as to what it is. Of course, it depends on where "it" is. Where do you live, why so long to get tests done? some of these are far from now, that is terrible! Around here I can get in in a matter of a week for tests.
    crabbycosmo 21 Replies Flag this Response
  • It sounds like the doctor is doing what he is supposed to be doing so far. Has he done blood work that is for showing any cancer markers in the blood? I'm thinking it is a tumor though, because of the neurological problems in the left leg. Something is hitting the nerves. Which should tell the doc where to take the MRI. The tumor can cause a lot of inflammation and some tumors can exists for decades before really getting worse. They can also turn to cancer. The big thing is the MRI, that will physically show them what is in there. Also, be sure that the radiologist report doesnt get lost and that when you go to your doctor's appointment, go pick up your films and show them to the doctor. Some Radiologists are morons and lose reports, like what happened to me. If the radiologist misses something, maybe your doctor will see it. It shouldnt be that way but I picked up my films from an MRI taken in 2000 a couple of years ago and VOILA - there was no report, it was lost, and it was a very ABNORMAL MRI. Does ice help with reducing pain at all? Have you tried that? Ice reduces inflammation if it is near to what is inflammed. Heat would actually make it more inflammed. That might be a clue as to what it is. Of course, it depends on where "it" is. Where do you live, why so long to get tests done? some of these are far from now, that is terrible! Around here I can get in in a matter of a week for tests. Blood has been perfectly normal. From what I have read it is rare for a tumor to originate at the base of the spine - that normally it is a secondary location for cancers of breast and lung. I am due to have a mammo in June (I'm in south florida and testing often runs 2 months behind, but my mammo from 04/06 was fine. Actually both ice (actually menthol cryoderm gel) and heat help. I guess becoz these problems popped up around my menstrual period, are most severe then, and I was diagnosed with adeno (basically endometriosis in the lining of the uterus) due to the uterine pain coming up just a few months and worsening with the arrival of the other issues, that the back pain and bowel issues arent occuring in a vacuum. I feel like they must all soehow be connected. Or, I'm just talking myself out of cancer and/or tumor becoz I really dont like that option. Thanks much for the MRI report and film tips. I'll do just that.
    Anonymous 42,789 Replies Flag this Response
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