Discussions By Condition: I cannot get a diagnosis.

6 years without a diagnosis i'm desprate somebody help me please

Posted In: I cannot get a diagnosis. 11 Replies
  • Posted By: jennypenny
  • March 25, 2013
  • 05:18 PM

I am 16 years old. I have been sick since I was 9. I get extreme cramping and irregular bowel movements that vary from day to day or even during the day. when I was 9 I got my period for the first time and the doctors blamed it on that. That one year when I was in 5th grade was ****. The pain was so bad I couldn't function let alone leave the bathroom. I tried everything fiber, probiotics and the doctors were stumped. then I got the stomach virus and felt better. I would only get pains the week before and during my period. I also always had pain when I had to use the bathroom I was always constipated or having diarrhea. But from 6th to 8th grade it wasn't as bad. then when I got to 9th grade I got so sick I ended up in the hospital and I couldn't even move I had shooting pains all through my stomach it was unbearable I was nauseous and the pain was constant It even hurt to breath. they did a sonogram that night everything was fine so they sent me home. A few months later I had a colonoscopy and endoscopy that came up normal and they told my mom they have nothing else to call it but ibs. Then I was at a loss they told me the pain was all in my head and I need to live with it. I also had another sonogram scheduled we kept the appt. even though blood work and stool cultures and the endoscopy and colonoscopy were fine. The sonogram showed a huge ovarian cyst it was so big that it stretched out my ovary. how did they miss that in the hospital. Well they put me on the birth control to shrink it. the pill helped about 50% and I was a little better in 10th grade. Now i'm in 11th and the pain got worse we redid all the tests everything was fine and there was no trace of ibs but this time i'm nauseous and very gassy. They tested my gallbladder because of my symptoms but i'm I a lot of pain after eating so I just don't eat and im down 16 pounds in 3 weeks. I have no life and constant pain. I did go to see a counselor to prove its not in my head so that end is taken care of to me this all sounds hormonal and gynecological but has anyone been through this I need answers does anyone have any suggestions or know what it could be.

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11 Replies:

  • I am 16 years old. I have been sick since I was 9. I get extreme cramping and irregular bowel movements that vary from day to day or even during the day. when I was 9 I got my period for the first time and the doctors blamed it on that. That one year when I was in 5th grade was ****. The pain was so bad I couldn't function let alone leave the bathroom. I tried everything fiber, probiotics and the doctors were stumped. then I got the stomach virus and felt better. I would only get pains the week before and during my period. I also always had pain when I had to use the bathroom I was always constipated or having diarrhea. But from 6th to 8th grade it wasn't as bad. then when I got to 9th grade I got so sick I ended up in the hospital and I couldn't even move I had shooting pains all through my stomach it was unbearable I was nauseous and the pain was constant It even hurt to breath. they did a sonogram that night everything was fine so they sent me home. A few months later I had a colonoscopy and endoscopy that came up normal and they told my mom they have nothing else to call it but ibs. Then I was at a loss they told me the pain was all in my head and I need to live with it. I also had another sonogram scheduled we kept the appt. even though blood work and stool cultures and the endoscopy and colonoscopy were fine. The sonogram showed a huge ovarian cyst it was so big that it stretched out my ovary. how did they miss that in the hospital. Well they put me on the birth control to shrink it. the pill helped about 50% and I was a little better in 10th grade. Now i'm in 11th and the pain got worse we redid all the tests everything was fine and there was no trace of ibs but this time i'm nauseous and very gassy. They tested my gallbladder because of my symptoms but i'm I a lot of pain after eating so I just don't eat and im down 16 pounds in 3 weeks. I have no life and constant pain. I did go to see a counselor to prove its not in my head so that end is taken care of to me this all sounds hormonal and gynecological but has anyone been through this I need answers does anyone have any suggestions or know what it could be. Where exactly is the pain located on your abdomen?
    xoxSteffixox 1 Replies Flag this Response
  • Where exactly is the pain located on your abdomen? It depends most of the time it is below my belly button but lined up with it and it radiates out to every where else. But other times the pain is all over my stomach I get a lot of different pains from nausea to gas to feeling like I am being stabbed or on fire.
    jennypenny 2 Replies Flag this Response
  • Where exactly is the pain located on your abdomen? In the middle of the general area below the belly button is the stabbing pains, the gas pains move around my stomach all the time, I have never had gas so bad that I can't even eat an more with out feeling like I'm going to puke. I take gas x every time I eat something to try and help the gas but it doesn't seem to work.
    jennypenny 2 Replies Flag this Response
  • I can relate to this and I can suggest something to try on your own that is fairly simple. I had severe cramping and stomach issues my whole life. I was also plagued with ovarian and uterine cysts. Even as a baby I had stomach problems. I also had severe inflammatory issues (arthritis, gall bladder, skin problems like hives or rashes). I suffered from heartburn so severe after eating that it actually made my face hurt from the radiating pain. After over 40 years of these problems that were never linked together, I happened to go on a diet that required you to cut out the 'white' foods. Well several of my issues went away. I thought at the time that I was possibly allergic to wheat (which is very hard and not reliable to test for) but later found out after I started getting hive-like things on my collarbones and on my ribs after ingesting certain foods that I was extremely gluten-intolerant and it was causing an inflammatory response in my body every time I ate it. I am now on a gluten-free diet and healthier than I have been since I was born. It would be easy to try it since nothing else seems to help you. Hope you get to feeling better no matter what.
    fireflii 1 Replies Flag this Response
  • I agree with the previous poster, cut out the white foods. Try a gluten-free diet, eliminate sugar and any genetically modified/processed foods. The first place to start is with diet.I've had a lot of problems with cysts over the years and understand now that sugar and fats had a large part to do with that. I would also eliminate dairy products. Give it a shot for at least a month and see how you feel.Might also find a good acupuncturist/herbalist who will give you Chinese herbs. Supporting your health in this way can only improve the situation.Best...
    Anonymous 42789 Replies Flag this Response
  • Another thing you can try is to cut out all lettuce, spinach from your diet. I am in my fortys now and suffered my entire life. I would have severe stomach pain, terrible, horrible gas pains etc. I realized it finally when I decided to be extremely healthy with my diet, eating only fruit and vegetables and salads. Well I got much, much worse instead of better! Through trial and error I discovered that it was the lettuce. The only lettuce or spinach I can eat is either organic lettuce or lettuce that I grow myself in my garden. I though I was crazy to be sensitive to lettuce but I have been meeting other people with the same problem. I don't know what it is on the lettuce but obviously it must be some preservative or pesticide etc. I hope you find the solution to your problems. It's just unbearable to have to live that way. I wish you the very best....
    debi625 1 Replies Flag this Response
  • Hey Jenny. I have some ideas about some things that it could be, but take them with a grain of salt :p I'm not a doctor and know *very* little about female problems like missed periods and stuff.So you were at one point diagnosed with IBS, but I guess they've decided that you don't have it anymore. In any case, the fact that you're having so many GI problems make me think of other conditions that are similar to it - Celiac's Disease and Crohn's disease can both cause lots of abdominal pain and, obviously, bowel movement trouble. Also, food allergies can play a huge role. Have you been checked for gluten intolerance, or other food allergies like wheat, soy, etc.? It may be worth looking into those things as well. Since your problems involve your GI tract, it's probably a good idea to get your vitamin levels checked (especially D and B12) - people with GI problems affecting the GI often are at risk for nutrient malabsorbtion, which can cause other symptoms or exacerbate the ones that you already have. There are many other autoimmune conditions that might involve the body attacking the GI. I think that this can sometimes happen with Sjorgen's Syndrome, for instance. It might be helpful to just google 'autoimmune conditions that affect GI tract', or something similar. Tests that can help detect characteristic inflammation going along with this include the ANA test and ESR and CRP tests. Have you had those done?Those are the main things that pop into my head when I read your symptoms. But you said that you think it's hormonal/gynecological and you might be right! Unfortunately, I know next to n/a about that stuff, except that sometimes deficiencies in nutrients can cause hormone problems. You might also want to look into Blind Loop Syndrome. That's a condition when part of the intestine gets blocked off for whatever reason, allowing bacteria to build up and cause trouble. That's about all I can think of, hopefully it helps. Try and think also about the changes that have been going on in your symptoms throughout the years. Could some of the new symptoms be due to the effects of any medication that you are on, or complications from previous surgery?
    Aaron-o 27 Replies Flag this Response
  • Did you get endoscopy done? I suspect you have loose liver valve(esophagus valve) that is causing gastric,fire and pain condition.
    medicalstudent 3 Replies Flag this Response
  • I am 16 years old. I have been sick since I was 9. I get extreme cramping and irregular bowel movements that vary from day to day or even during the day. when I was 9 I got my period for the first time and the doctors blamed it on that. That one year when I was in 5th grade was ****. The pain was so bad I couldn't function let alone leave the bathroom. I tried everything fiber, probiotics and the doctors were stumped. then I got the stomach virus and felt better. I would only get pains the week before and during my period. I also always had pain when I had to use the bathroom I was always constipated or having diarrhea. But from 6th to 8th grade it wasn't as bad. then when I got to 9th grade I got so sick I ended up in the hospital and I couldn't even move I had shooting pains all through my stomach it was unbearable I was nauseous and the pain was constant It even hurt to breath. they did a sonogram that night everything was fine so they sent me home. A few months later I had a colonoscopy and endoscopy that came up normal and they told my mom they have nothing else to call it but ibs. Then I was at a loss they told me the pain was all in my head and I need to live with it. I also had another sonogram scheduled we kept the appt. even though blood work and stool cultures and the endoscopy and colonoscopy were fine. The sonogram showed a huge ovarian cyst it was so big that it stretched out my ovary. how did they miss that in the hospital. Well they put me on the birth control to shrink it. the pill helped about 50% and I was a little better in 10th grade. Now i'm in 11th and the pain got worse we redid all the tests everything was fine and there was no trace of ibs but this time i'm nauseous and very gassy. They tested my gallbladder because of my symptoms but i'm I a lot of pain after eating so I just don't eat and im down 16 pounds in 3 weeks. I have no life and constant pain. I did go to see a counselor to prove its not in my head so that end is taken care of to me this all sounds hormonal and gynecological but has anyone been through this I need answers does anyone have any suggestions or know what it could be.Hi Sweetie,A good friend of mine had very similar symptoms as you. When she was 40 she had her gallbladder surgery, during which she asked the surgeon to take a peak around to "check out things" since afterall there will be room to look. After surgery the surgeon explained that she was filled with endometiosis (hoping I spelled that correctly). Sometimes the fibroids can escape from the uterus and go crazy around other organs, when it is close to the time of your period the cramping is intensified because the fibroids are squeezing themselves around the organs. I would consider questions that involve this.I wish you the very best of luck in this journey.
    Vonnrayy 1 Replies Flag this Response
  • Sure sounds like Ovarian Cysts to me! Just had my first bout w/ them at age 41. Do you get pains in your groin area right before the other pains start?
    ashleyzem 2 Replies Flag this Response
  • Where exactly is the pain located on your abdomen?It sounds like IBS. I have found that certain things I eat affect me greatly. I also have fibromyalgia, gout and lots of arthritis in my spine and in my knee and feet. They did a food allergy test on me and I was allergic to almost everything. They told me to start eliminating one thing at a time and if I got no better, then go to the next thing. Right away, I noticed that milk....diary product and onions were a huge problem for me. A 1/2 glass of milk and for 3 days, I have gas, diahrrea, constipation, stomach pains. I have learned to avoid these 2 things for sure. I would ask for a food allergy test for sure. It can't hurt. I also have been through the Drs shaking their heads and saying they could find nothing. Lots of tests run. It's so frustrating.
    lilyflower 1 Replies Flag this Response
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