Discussions By Condition: I cannot get a diagnosis.

full of crap- DR. or Me?

Posted In: I cannot get a diagnosis. 107 Replies
  • Posted By: kamsae
  • January 30, 2007
  • 01:33 AM

yikes, went to a GI dr today and walked out bawling again. Another crappy mis-diagnosis i believe. this makes 8. Last year my lower left side swelled up and began hurting severely. this pain and mass is always present but with no other symptoms. Around the time of my period my stomach will swell to appear 6 months pregnant, I cant eat or drink or it stops just between my ribs and hurts or makes me vomit. After the priod, it goes back to normal. I believe that i have intestinal or colonic endometriosis but cant make the doctor listen.

For 5 years ive had menstrual problems and this severe reaoccurring abdominal swelling- and recieved the following diagnosises:
Pelvic inflammatory disease----no matching symptoms except pain.
polycystic ovarian disease-----no matching symptoms except weight gain.
Ovarian cysts----------------wouldnt be persisant/rarely present.
uterine fibroids---------------based on adenomyosis/enlarged uterus.
irritable bowel syndrome------no tests done! dr. felt the mass in my low. abdomen and said it was my sigmoid and is only inflammation from IBS.
Metabolic syndrome----------no matching symptoms except weight gain.
Adenomyosis--------------excess endometrial growth in the uterus lining.

The pelvic ultrasound and exam show nothing abnormal-but i dont think it would show the form of endometriosis that i think i have. Ob/Gyn wasnt helping-just gave me the brush off so today i had a GI appointment (since the first dr. said the mass was in my sigmoid) I believe he said im full of crap! actually- he thinks i have diverticulosis or diverticulitis. i dont believe it. I think i have one disease with the same symptoms as the previous 8-
not 8 diseases with only 2 symptoms from each! anyway i left so he wouldnt seee me crying with the frustration of not being able to get my points across. how can i get a laparoscopy? why dont they want to do it? both of my sisters have endo and had no problems getting diagnosed and treated. help please? could they be right on any of the other diseases?

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  • yikes- no insight? had a bad reaction to the med given by the GI dr. thought i was dying. period is over now and stomach is back to normal size but vomiting and pain are still here- and the low back pain is at the level of having to be drugged up all day to function. dr. says she thinks its appendicitis- no fever though and pain is on the opposite side. strange. they drew blood to check for elavated white cells and sent me home. I awoke with red blotches/lines across my low right side, it spread in a day to cover from hip to hip and from navel line to pelvis line. Identical to a bad sunburn at this point. a few more hours and it was gone.
    kamsae 88 Replies
    • January 31, 2007
    • 01:27 PM
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  • went to th ER when i could barely walk (shaky legs,dizziness,pain) they did a pelvic exam/ urinalysis/cbc count.Pelvic felt a mass about 3 cm(left side by sigmoid)-said likely ovarian cyst.urinalysis was normal.cbc shows elavated white blood cells still.gave me a shot of something to stop the nausea and vomiting. worked great- first time i could eat in 6 days.(besides sipping broth).Now not vomiting but increasingly excruciating pain in low back,legs,rectum,left lower pelvis. Headache from any light or focusing eyes. they said that the "heart attack syptoms" (dizziness,involuntary movements,tremors,loss of balance, palpitations) were from the reaction to zelnorm and should pass. they have gotten less intense but still present. I think the mass (ovarian cyst) is blocking the sigmoid or maybe from within the sigmoid. no blood though or fever. some mucus. any ideas?
    kamsae 88 Replies
    • February 2, 2007
    • 02:17 AM
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  • When Medical doctors seem like all they care about is their big fat paycheck and not the suffering patient, its time to go seek alternative health measures. Try an acupunturist, homeopathic doctor and so on. Search for more holistic. Holisic doctors treat you as a WHOLE person, body mind and spirit, NOT just your symptoms. Sadly all allopathic medicine can do is diagnose and prescribe drugs which NEVER cure, only mask a symptom.I wish you health and I hope you feel better soon :)Stacy
    HappyHealthyGirl 26 Replies
    • February 2, 2007
    • 03:57 AM
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  • Hi, Kamsae. I'm a 27 year old female. Who has been dealing with doctors loooking at me and just scratching their heads for many years now. Most recently, I ended up in the hospital with severe abdominal pain. Of course, they did a million tests but still found nothing. It's been almost a year now, and I've had tests including MRIs, CT scans, EKGs, endoscopy, colonoscopy, and others I don't remember. I have several liver tumors that it took doctors 5 months to come up with a 95% certainty that they're not cancerous. I also supposedly have endometriosis (diagnosed 3 years ago after four years of unexplained pain), although my doctor also talked my out of a laproscopy. In most of today's information on endometriosis, it is strongly stated that you MUST have a laproscopy in order to be diagnosed. I'm concerned because I was on meds for 2 and a 1/2 years that put my in pseudo-menopause in order to control the pain. What I wanted to tell you is that I've learned that doctors just don't care enough today. I learned the hard way that the only way to get anything out of them is to demand it. If your doctor won't get you a laproscopy, go to another doctor, and another, until you get one that gives you what you want! I tend to agree with you that you probably have endometriosis. So, get REAL assertive as it's the only way to get through to these doctors! I know, because I'm living a similar version of your frustration!
    Anonymous 42789 Replies
    • February 2, 2007
    • 09:00 PM
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  • Hi, Kamsae. I'm a 27 year old female. Who has been dealing with doctors loooking at me and just scratching their heads for many years now. Most recently, I ended up in the hospital with severe abdominal pain. Of course, they did a million tests but still found nothing. It's been almost a year now, and I've had tests including MRIs, CT scans, EKGs, endoscopy, colonoscopy, and others I don't remember. I have several liver tumors that it took doctors 5 months to come up with a 95% certainty that they're not cancerous. I also supposedly have endometriosis (diagnosed 3 years ago after four years of unexplained pain), although my doctor also talked my out of a laproscopy. In most of today's information on endometriosis, it is strongly stated that you MUST have a laproscopy in order to be diagnosed. I'm concerned because I was on meds for 2 and a 1/2 years that put my in pseudo-menopause in order to control the pain. What I wanted to tell you is that I've learned that doctors just don't care enough today. I learned the hard way that the only way to get anything out of them is to demand it. If your doctor won't get you a laproscopy, go to another doctor, and another, until you get one that gives you what you want! I tend to agree with you that you probably have endometriosis. So, get REAL assertive as it's the only way to get through to these doctors! I know, because I'm living a similar version of your frustration! I just registered - this was my input above. As a PS to you, I was also mistakenly diagnosed with appendicitis when I first showed up at the ER with severe abdominal pain
    laquenosabe 15 Replies
    • February 2, 2007
    • 09:10 PM
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  • I understand the frustration due the inability to get an accurate diagnosis. You stated that you've been having these various symptoms for eight years and have seen many medical professionals. There could be a problem with how these MDs are viewing your case. First of all they do collaborate with one another especially if you are being referred for a specific complaints. If you've been seen by two or more doctors, they most likely have conferred with one another. If you've subsequently presented with new or unexplained symptoms after examination they could be stalling because they simply don't know what is going on. If you feel you that they are not listening (i.e. the GI MD) go to an appointment prepared. Write your problem(s), symptoms and their onset (when they began) down. Make certain your top three questions/problems are at the top of the list. Be matter of fact and don't go into a lengthy story about previous problems. Be specific about why you are there. Use your time wisely while with the phsycian. Find a physician that isn't familiar with your case. As I've said present with your top three complaints and don't go into your history about when and who did/or didn't do this or that. Be a prepared patient and hopefully you'll find a solution to your problems.Good Luck
    SleeplessInTheSouth 7 Replies
    • February 2, 2007
    • 09:57 PM
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  • thank you for the advice and replies. i feel really weird today, i ve taken laxatives/stimulants/stool softeners/high fiber/lots of fluids for the last 3 days- trying the stubborn doctors ideas. this morning it worked but not well. small rocks with mucus and old blood, very difficult and painfull. whole body feels bad. im trying to get a babysitter so i can go to the ER. im just so afraid they wont find it and ill have another emotional breakdown. end up walking out bawling and embarrassed with more painkillers and laxatives. and you are right about the collaboration of the doctors. the GI and ob/gyn were both refferals from the primary physician. both of completely dissmiss any other diagnosises (without testing) and say that they agree with primary care dr on IBS. its not right though. I love hot wings, cheese, jalapenos,etc and have never had any bowel problems. (only during the menstrual cycle and increasingly severe with each).
    kamsae 88 Replies
    • February 3, 2007
    • 08:29 PM
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  • I would be tempted to lie to the dr and say you're having irregular menstrual bleeding and want an endometrial biospy. That at least will rule out endo cancer which you must be worried about with a 3cm mass in there. Go to a new doctor and ask for a laparscopy. Take natural progesterone cream in the meantime (Life flo is on Amazon) and read Dr John Lee's book What Your Doctor may not tell you about premenopause (even if you're young) - it's basically a book that explores hormone imbalances.Right now, read http://www.adeno101.com/
    Anonymous 42789 Replies
    • February 4, 2007
    • 00:28 AM
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  • I went back to the ER and was given cbc count=still high, urinalysis=normal. on physical exam -doctor said the mass does not feel like a cyst and did a ct scan with contrast, he said that based on the images, it is NOT stool,cyst,or diverticulitis. but he doesnt know what it is. he also doesnt think its the sigmoid. it didnt seem life threatening so i was sent home. severe pain in both sides,back pelvis and legs. my eyes are red and sore and lips/skin dry. hands and feet are cold and thermometer still says between 97.7 and 98.7, and gas foul enough to make me vomit.
    kamsae 88 Replies
    • February 4, 2007
    • 03:49 PM
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  • I had similar situations with Drs after my stomach incision was hurting very bad years after having a c-section. I swear they laughed at me thinking my scar shouldn't be hurting that bad. That was 12 yrs agao when I went to a plastic surgeon to relieve the pain and pulling of my scar. Thats whenthey found endometriosis. Fast forward to 2005 and I was in so much pain I could hardly walk. Logn story vut my Priamry Dr said not to have laproscopic surgery to see if it was endo. So I went to the Obgyn and wasked ehr and she sis the surgery last Feb. Found LOTS of adhesions and cysts on teh ovaries, she claned it up a bit and said I'd need hysterectomy. Had the hysterectomy in May 06. Almost immediate relief in my hips and legs pain after it. I had a toatl remaoal of ovaries and uterus. I feel so much relief!!! I'll take the hot flashes now over the pain I had any day!!!!!
    Anonymous 42789 Replies
    • February 5, 2007
    • 00:27 AM
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  • came back from ob/gyn this morning and he said the ovary and fallopian tube are inflamed. huh?:confused: that didnt show on CT scan- would not cuase bm problems, or an unidentified mass present and growing for a year. im ready to give up and buy a portable heating pad with built in IV meds:( . Gave me doxycycline- here we go again with the C-Diff. feeling better though with each day regarding the nausea, vomiting, and constipation. Its just the dang pain that wont stop. god help me, im tired of drugs. im 25 and just cant function anymore.
    kamsae 88 Replies
    • February 6, 2007
    • 06:54 PM
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  • Complications of Crohn’s Disease

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  • I went back to the ER and was given cbc count=still high, urinalysis=normal. on physical exam -doctor said the mass does not feel like a cyst and did a ct scan with contrast, he said that based on the images, it is NOT stool,cyst,or diverticulitis. but he doesnt know what it is. he also doesnt think its the sigmoid. it didnt seem life threatening so i was sent home. severe pain in both sides,back pelvis and legs. my eyes are red and sore and lips/skin dry. hands and feet are cold and thermometer still says between 97.7 and 98.7, and gas foul enough to make me vomit. Hello Kamsae. I am concerned for you! It seems you're dealing with absolute idiots! I cannot believe so many doctors are just spouting at the mouth without giving you much needed tests! I want to suggest that you stop visiting the ER so often - it at all possible, make an appointment to visit a different specialist each time you start feeling bad. Or, spend one day making various appointments to various specialists, because sometimes it may be a few weeks before you can get an appointment. I think you should see a gastroenterologist first. Insist on having a colonoscopy! It's not a fun test, but I think it's a must for you since you're having gas/constipation issues, and there was blood and mucus in your stool. A doctor saying he "doesn't think" it's the sigmoid is not good enough! Make them go in and examine the sigmoid FIRST, and THEN decide whether or not it's the sigmoid! Also, it is possible that some of your pain is from endometriosis, especially considering you have adenomyosis. The mass you have may be an overgrown endometrial tumor - this wouldn't be life treatening, but it's painful! So, I also suggest you visit an endometriosis specialist if any exists in your area, or visit an ob-gyn. Insist upon an exploratory laproscopy. Again, I'm all about crossing stuff off the list! I've been in your shoes, and I want to tell you NOT to listen to the foolish doctors - it's NOT in your head!! There are a lot of us out there - those of us who live with severe pain and/or masses that do un-diagnosed! My masses are in my liver, and I don't yet know what they are. But I've stopped letting doctors tell me what they "think". You have to force doctors now-a-days. You tell them what you want them to check for, because if not they'll keep sending you home with a different painkiller each time. I lived in the Washington, DC metro area up until recently - if you are anywhere near that area, I can help you with doctors and specialists, if you'd like. I'm currently in Philadelphia, so I could help a bit with that area too. Good luck, and I hope this helps you some.
    laquenosabe 15 Replies
    • February 12, 2007
    • 02:56 PM
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  • thank you, i agree. I have an endoscopy and flex sigmoidoscopy tommorrow morning. its kinda stupid-but im really scared. I have never had any operations or procedures done. Im doing my best to not back out again- a family member will drop me off and pick me up to keep me from leaving! feels childish-but im panicked. i think its not the GI tests for tommorrow as much as it is the surgerys on thursday. Im suppossed to have a laparoscopy and histeroscopy, depending on what they see i will probably have lasik ablation and dialation and curretage. i dont think he will do it right though. he said if he found the "blue bubbles" he would remove some-but not all. His explanation for this was that "removing them is an insult to the body- scar tissue will form and cause more pain". I think that If he leaves some in there then it will keep growing. this doesnt sound right. He also said that if there is involvement with the colon-he would not change it at all. I guess refer me to a GI surgeon.I have been fighting so hard to get the test and now im terrified of following through with it. I really wish he would have lied to me and sugarcoated it a little! he said that it would feel like someone stabbed me with a pencil for 2 to 3 days and i should have someone there to care for my kids. dear god. I need courage and tranquilizers.
    kamsae 88 Replies
    • February 13, 2007
    • 03:28 AM
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  • Hey, you stole my story! Actually I was interested in your post. I've had similar experience and symptoms. Recently had a laparoscopy/hysteroscoy and DnC. My sister has severe endo, but mine was minimal. I thought it would be really BAD, because I too have that "cyst" feeling on the lower right, I too look 6 months pregnant etc. My tests were good, there was nothing there. Like I said, just a little endo that was zapped during the procedure. However, I must agree with the person who suggests "a little white lie" to get the procedure done. I do have "heavy" cycles with lots of pain and so I insisted on the laparoscopy and that's how it was done. But don't be surprised if it's not Endo, or if they can't determine the cause of that growth. Good luck!
    Sleepy Sally 3 Replies
    • February 13, 2007
    • 04:08 AM
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  • Kamsae, I do hope you make progress. Your situation sounds quite painful. I was just wondering if with your GI troubles if anyone has mentioned the possibility of Crohn's disease. It typically develops in early 20's, is chronic, and is characterized by inflammation of the digestive tract. For most people this causes diarrhea, but for some it has the opposite effect-constipation."The most common symptoms of Crohn’s disease are abdominal pain, often in the lower right area, and diarrhea. Rectal bleeding, weight loss, arthritis, skin problems, and fever may also occur."Also wanted to mention "Because the symptoms of Crohn’s disease are similar to other intestinal disorders, such as irritable bowel syndrome and ulcerative colitis, it can be difficult to diagnose. Ulcerative colitis causes inflammation and ulcers in the top layer of the lining of the large intestine." since you did mention a mass in your abdomen.Good luck.
    Anonymous 42789 Replies
    • February 13, 2007
    • 05:15 AM
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  • thank you. I just got back from the GI dr. the endoscopy found one little growth in my stomach-they are doing a biopsy and will call me with the results. The flex sigmoidoscopy showed nothing abnormal. He said the pain and digestive symptoms are not from any gastrointestinal cause. The new ob/gyn called me back and cancelled the laparoscopy and hesteroscopy. the pap smear he did a few days ago came back abnormal. I am to see him for further examination on thursday. please dont be cancer.:(
    kamsae 88 Replies
    • February 13, 2007
    • 11:09 PM
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  • I am wondering if the ruptured cyst caused the abnormal pap. 3 days before it was done i had brown bloody fluid discharged. it stopped after 1 day, but now its back. this time it started bright red and was followed by the brown kind. the pain is different now too. it feels like contractions and pinches in the cervix and pelvic area. very scary. I am supposed to go back to the dr tommorrow morning but im afraid it will be abnormal again from todays bleeding. i dont know. im so scared and confused that i just cant function. i had to take my kids to a babysitter last night becuase i couldnt stop shaking and crying. i dont want them to see me like that.if it is cancer, i dont know what ill do to cope. if its from endometriosis then there is more hope. at least i proved that im not "full of crap". bowel habits are still normal, but i start my period again in 6 days, we'll see what happens then. Im very thankfull that the GI tract is not sick. i always worried about colon cancer and digestive diseases, but now that i know that this system is healthy- it eases my fears a good bit.
    kamsae 88 Replies
    • February 14, 2007
    • 03:44 PM
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  • Kamsae, I'm so glad to here that the results from the GI tract are all negative! It's always good to be able to cross something off the list of possible things wrong with you. As for the small growth in your stomach, I'm hoping for the best for you! I know you are worried about an abnormal PAP, but sometimes something as simple at an infection can cause an abnormal PAP. I would definately let the nurse know you're getting the strange blood discharge, however. On a PS note to you, I have endometriosis on my cervix, and when I get my monthly, my discharge is similar to what you described: sometimes bright, blood red in color, and sometimes brown and thick. It never occurred to me that might not be the same for all women - maybe it's a cause of the endometriosis? I'm not sure...Anyway, good luck with the PAP smear test - hopefully it's nothing serious!
    laquenosabe 15 Replies
    • February 15, 2007
    • 03:01 PM
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  • Kamsae,I had to write because I went thru problems similar to yours for over 30 years before I got an answer! I know how depressing it can be and how hopeless one can feel after searching for answers for years. I must have seen at least 50 doctors and had every test and procedure there is before I found Dr. Andrew Cook at the VitalCare Institute of Health in Los Gatos, California. Dr. Cook is an expert in dealing with endometriosis and other conditions that can cause abdominal/pelvic pain in women. He found that I had endometriosis and adhesions that went from my fallopian tubes to the bowel. He got rid of the endometriosis and actually had to remove a section of the diseased bowel but I am 2 years post-surgery and I no longer have pain!!! You can find him on the internet. If you have any other questions you can write to me at maxoh@yahoo.com.Good Luck!Lisa
    Anonymous 42789 Replies
    • February 15, 2007
    • 11:03 PM
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  • thank you everyone, it reallys helps to hear from others. I had the colposcopy and biopsy today. the pain was worse than the labor and delivery of my first child.i just couldnt believe it. he said i was overreacting. butt hole. I dont believe he would think that if someone was cutting off pieces of HIS inflamed insides. He said it had some obvious changes but didnt look bad. i get the results in about 7 days. They had me stay for about an hour after he was finished because i reacted so badly. lots of bleeding, shaking, nausea, and pain. im feeling some better now, just weird-like postpartum, emotionaly and physically. 4 more days to the menstrual cycle so its probably got a lot to do with it. thanks again, i will post when i get results or more symptoms.
    kamsae 88 Replies
    • February 15, 2007
    • 11:30 PM
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