Discussions By Condition: I cannot get a diagnosis.

beyond desperate with baffling symptoms

Posted In: I cannot get a diagnosis. 88 Replies
  • Posted By: nosmartyr
  • January 31, 2007
  • 07:26 PM

My symptoms seem to come from a variety of disorders, but I haven't got any diagnoses other than endometriosis. I really doubt that it's causing all this. There is an abnormal structure in my uterus, but no one can tell me what. I've had 2 transvaginal ultrasounds, a CT, and a colonoscopy. Blood work has come back fine twice. I'm worried that it might be due to some neurological disorder. Here are my symptoms:Abdominal pain on the lower right that is constant and in the lower left that is periodic. Sometimes the pain will spike within an hour for no apparent reason to the point that I'm screaming, writhing, and tensing my whole body for hours and hours. I'd say it feels like the pain is coming in waves, but it's constant, so it's just increasing in waves. These writhe sessions, as I've come to call them, last up to 8 hours sometimes. My back hurts, lower and upper, as well as my shoulders and neck. I always keep a heating pad on and that helps, but means I can't leave the bed. These symptoms started over a year ago. The newer ones are hot flashes, headaches that last 12 hours and are only on the right side of my head(feels like I have the worst earache, like blood will shoot out my ear any second-the pressure behind my eye is so painful it feels like my eye is going to burst and my vision blurs-my temple throbs with pressure-my neck and shouler are so tight it feels like my muscles are going to snap)and these headachse aren't made any worse by light or sound or position or by rubbing, tapping, heating any part of my face or neck. The headaches start about a week and a half beofre my period and last all thru it and a week after it. I think this may be coincidence(my gyn just thinks they are period headachs) since I've never heard of anyone describe these symptoms as i experience them. During the period that I get the headaches I also get nauseous(dizziness, vertigo), but only on the days I'm not having the headache. The headaches and nausea both start about two hours after I wake up. The nausea lasts for about 8 hours. So, the first day I'll get really nauseous, the next day be fine except for the debilitating abdominal pain, the next day I'll get the headache, the next day I'll be fine, the next day I'll get the nausea, the next day the headache, next the nausea, then the headache..and they taper off like they came in. I've always had very poor balance, coordination, spatial perception. I didn't drive til I was 21 because of it. Lately(3 weeks) my balance has been worse, I'm always dizzy even when I'm sitting down, my spatial perception is so off that I'm always thrown by how close I am to stuff, esp when navigating to the bathroom. On my nauseous days every slight movement of my head causes the room to spin and me to reel with the sensation that I'm going to vomit. I've never thrown up on a nauseous day, though. I just really think I am, even tho I have never, maybe this time I will..it's that strong. For about a week I've been having trouble forming complete thoughts and though I've never had any issue at all with dyslexia I find myself typing and writing words all out of order. I don't recall things that just occured and often holler for my boyfriend when he is in another room, cuz to me he just vanished even though he told me slowly and carefully that he was leaving the room. Sometimes I look at an everyday object and can't place what it is, as if it's some alien form that I've never seen before. Most recently this happened with a water bottle that I have by my side 24/7 cuz I aslo have dry mouth. I don't have regular bowel movements. I go maybe every three days and when I do I have a very sharp aching along with sudden intense nausea that makes me rush to the bathroom. When I get there I just feel like I'm going to have loose stool. Instead I sit for 40 minutes to an hour with a huge boulder half in-half out and it feels like my pushing muscle is not working. It starts out okay, feels like it's gonna do it's job, but then craps out on me before the job is finished. It's gross, but I have to work it out with my finger just to get off the toilet. About 3 hours later I'll feel like I might have to poop again and I do, but this time it goes out easily and is very skinny and looks just like that old playdough pressed out a square snake and is greeninsh and slimy looking with rough edges. I pee very frequently(next on the list is interstitial cystitis-but I only have this one sign) and with small amounts of liquid. I can only drink half a can of natural soda before I have to pee and when I do it's clear, like the soda. I am never hungry, but I eat maybe a whole meals worth throughout the day. I tried taking colace, natural fiber supplements, and eating only fiber to regulate my stools to no effect. All of those at the same time didn't even do anything. I should mention that I recently developed a wheat allergy, so now i'm on an organic only, wheat and gluten free diet. Before I changed to the organic diet I was having a somewhat soft BM every morning like clockwork that was bloody as heck and so painful that I'd often scream. Back then I'd sometimes pass nothing but blood, thick, goopy, bright red blood. Now I just have bloody stool occassionally and only when I'm on my period. I use a wheelchair when I go out, which is rarely, cuz walking will induce the writhe sesions I spoke of earlier. Even walking down a flight of 13 stairs will cause such a spike in my pain that I crumple to the floor. When I walk I can feel a tugging synced with my right side pain that gets worse as I swing my leg behind my body. I had a lap dome to remove he endo and never experienced any relief for even an hour after the surgery. The good that came of that was the pain med, darvocet, that just knocked me out. I've been trying to get more narcotics ever since, but I am just told to take ibuprofen, naproxen, ultram. These don't help at all. I know the only reason the narcotic makes me feel better is cuz its masking my pain, but if you were in this much pain youd be begging for it too. Does anyone (please) have any idea what these symptoms could be related to? And do you have any idea how I can communicate to my doctors the amount of suffering I experience daily without being dramatic and sounding crazy? I need a strong painkiller. I got two oxycodone from a friends mom. They had 512 written on them. They only helped take a bit of th edge off for two hours and I had thought they were strong, since so many folks get adicted to them. Oh, please, tell me anything you think may be the problem. I'm beyond desperate here.

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88 Replies:

  • Your whole system is intoxicated. And you might have parasites or Candida.I think the liver is loaded due to the drugs you are taking.How much water do you drink? how much protein do you take?Make sure you drink 9+ glasses of water, and that you do not consume more than 35grams of protein per day.*Do not eat sugar*Do not consume dairy*Consume flaxseed oil (2 tbs) and Probiotics.Take Care.
    Anonymous 42,789 Replies
    • January 31, 2007
    • 07:41 PM
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  • ive only been taking the tramadol and muscle relaxer for two days now. i used to take a lot of advil per docs orders even tho it did nothing to help. i don't eat meat, just cuz i haven't wanted it this last few months.ive always had an intolerance to dairy, so I don't cunsume that either. i drink water constanly due to the dry mouth. i'm gonna read about parasites and candida now. thank you so much for your input. I'm going to mention all this to my doctor.
    Anonymous 42,789 Replies
    • January 31, 2007
    • 07:49 PM
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  • okay, that could(candida) i have a lot of those too. i didn't even think to mention ringing in my ear in my original post. i've had pneumonia 3 times and bronchitis at least 5 times very seriously, so do you think it could be a result of having been treated with so many antibiotics in my lifetime?
    Anonymous 42,789 Replies
    • January 31, 2007
    • 07:58 PM
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  • ive only been taking the tramadol and muscle relaxer for two days now. i used to take a lot of advil per docs orders even tho it did nothing to help. i don't eat meat, just cuz i haven't wanted it this last few months.ive always had an intolerance to dairy, so I don't cunsume that either. i drink water constanly due to the dry mouth. i'm gonna read about parasites and candida now. thank you so much for your input. I'm going to mention all this to my doctor.Non steroidal pain killers like Advil are deadly- but the FDA does not want you to know that.I was recently told about a woman who nearly bled to death at the dentist.She was taking ibuprofen. The drug made her body's chemistry get so altered, that the clotting response did not take place inside of her mouth ( as needed for the dental procedure). Instead she was clotting internally and started bleeding from different opening of her body.She survived the incident- but when the terrified doctor reported this incident to the FDA- they said they have more cases like that registered.Non steroidal pain killers kill thousand of people every year in this country- but it is never written in their death certificate.*Don't take drugs :(You can do cleansing and take Magnesium, Selenium, and Vitamin C, also Sylmarin.Be Well.
    Anonymous 42,789 Replies
    • January 31, 2007
    • 08:02 PM
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  • okay, that could(candida) i have a lot of those too. i didn't even think to mention ringing in my ear in my original post. i've had pneumonia 3 times and bronchitis at least 5 times very seriously, so do you think it could be a result of having been treated with so many antibiotics in my lifetime?Yes- Antibiotic is Mold. The Mold does not just kill the "infection"- it kills all cells. Since the intestines' membranes are so thin, those things can easily dig a whole on your gut and let undigested food scape out to the bloodstream. Making your whole body go in panic mode.Steroids do the same darn thing and more...There are many paths to healing. Love and Laughter are essentials.If you are interested: "Never Be Sick Again", Eat Right 4 your Type, and Mercola.com are good to start.Be Well!You are not alone.
    Anonymous 42,789 Replies
    • January 31, 2007
    • 08:08 PM
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  • I have a lot of your symptoms though not to the same degree. You probably have adenomyosis as well as endometriosis and your endo could have traveled to different parts of your body (it even travels to the brain in rare cases). I am pretty sure you must be perimenpausal becoz many of your symptoms could be due to a hormonal imbalance. You really need to see someone who is an expert on endometriosis - and I would strongly suggest that person be a naturopath/acupuncturist. You probably need to be taking natural hormones (like progesterone cream) and have a complete hormonal work-up. By all DO NOT take birth control pills or synthesized HRT like premarin. You sound very estrogen dominant. Here is a site for you to check out and a support board where you will find other people who suffer as severely as you do:http://www.adeno101.com/http://www.theendoclub.com/yourstories.htm
    Anonymous 42,789 Replies
    • January 31, 2007
    • 08:13 PM
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  • Also read What you Doctor May Not Tell You about Premenopause by Dr John Lee
    Anonymous 42,789 Replies
    • January 31, 2007
    • 08:15 PM
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  • Thank you all. I'm 23 years old and have been unable to work, drive, walk, even care for myself. I had a gyn who was pushing Lupron on me like you wuldn't believe. She refused to give me anything for the pain that has taken my life from me until I agreed to get the 3 month shot. This same doctor did my lap to remove adhesions. Do you think that maybe she gave me my first dose and didn't tell me?
    nosmartyr 40 Replies
    • February 1, 2007
    • 04:17 AM
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  • Not a day goes by that I am pain free. I asume my whole body aches constantly since every other day at least I spend hours writhing around on my bed involuntarily. Writhe sessions are intense, the pain is all I can experience during these hours. I mean, I'll fall off the bed and not even realize it til the pain has subsided or my boyfriend tries to help me. I try so hard for him. The pain is worse when I'm on my period, but it in no way revolves around my cycle. Throughout the day, if I am as inactive as humanly possible, I can use meditation to kind of ignore the pain. Maybe all the intense concentration throughout the day is resulting in my mind being absent? I've been to the emergency room and was treated so poorly that I don't want to go back and besides that, can't afford it. If it didn't happen on a regualr basis it would sure seem like an emergency, but in a way I'm used to it as it's just part of my miserable life.
    nosmartyr 40 Replies
    • February 1, 2007
    • 05:20 AM
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  • I really think that, if anything, the endo is a result of an underlying condition. The thing in my uterus is really concerning, of course. Does anyone have any idea what that could be? My doctor can feel it in just a physical exam and said that it seems to be almost dividing my uterus. Sorry, I'm posting a lot. All I do is sit here all day or sit in the bedroom all day. Posting makes me feel like I'm taking action in some way.
    nosmartyr 40 Replies
    • February 1, 2007
    • 05:33 AM
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  • http://www.theendoclub.com/yourstories.htmhttp://www.adeno101.com/http://health.groups.yahoo.com/group/adenomyosis_support/Get yourself some natural progesterone cream (amazon carries it) - make sure there is no estrogen in it and follow the instructions on the bottle...read about all natural treatments for endo and adeno like diet and vitamins & herbs and start implementing these changes asapdidn't your doctor see what the structure was when he did the lap? Maybe he needs to do a hysteroscopy, and certainly get an endo biopsy. god, i hate gynecologists lately.
    Anonymous 42,789 Replies
    • February 1, 2007
    • 09:10 AM
    • 0
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  • didn't your doctor see what the structure was when he did the lap? Maybe he needs to do a hysteroscopy, and certainly get an endo biopsy. god, i hate gynecologists lately.She( can you believe another woman is so insensitive to my pain) said she felt the structure during my lap. My new gyn can feel it just by touching my abdomen, but Dr. Martin couldn't. She didn't order a US prior to surgery either or tell me about cutting my nerves in pre-lap exam. Not only that, but she told me she would be using a knife for precision and afterward, when I asked about the appearance of my insides in the pics, I found out that she had used a laser after all. The results of my TVUS were given to me after hours and in a very unprofessional maner. She was on the highway(by the sound of it) and told me she had never seen anything like that before and that it may be cancer, but I shouldn't worry about that, cuz it really probably isn't. After that she was out of town for two weeks. every call I made after she came back was ignored for an entire week. When my calls were returned and I asked for more tests to be done, she told me every symptom i have is just from endo and take Lupron, take Lupron, take Lupron. Before the lap she had said that surgery was the cure and now she tells me Lupron is the cure. I hate her sooooo much. And dont' even get me started on her idiot nurse who told me Lupron didn't affect emotions, that ultram and tramadol were completly different meds, and if I wanted to waste my money she'd refer me to a pain management specialist.
    nosmartyr 40 Replies
    • February 1, 2007
    • 04:07 PM
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  • i just read side effects of naproxen and they are disturbing. should I stop taking it? i have taken a whole lot of naproxen in my lifetime for cramps and headaches in the form of alieve and prescription maproxen cuz it's what has been given to me over and over for my abdominal pain. do you think it could be contributing to my pain?
    nosmartyr 40 Replies
    • February 1, 2007
    • 04:17 PM
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  • i just read side effects of naproxen and they are disturbing. should I stop taking it? i have taken a whole lot of naproxen in my lifetime for cramps and headaches in the form of alieve and prescription maproxen cuz it's what has been given to me over and over for my abdominal pain. do you think it could be contributing to my pain?I think you have to talk to your doctor or another specialist about how to go about stopping the meds. Those drugs are not going to really cure you.Try to get in touch with a good experienced acupuncturist who specializes in Women's Health.There is a great book- "Never Be Sick Again"- the authors website isBeyondhealth.com He deals with general health management and prevention, but his team will help you pick supplements that are good to fight your condition. The author, Raymond Francis have researched on natural mechanisms to turn off disease too, even cancer. One of his case studies and success stories is his own brother. He had given no hope about his prostate cancer but he survived. That was 12 years ago.Take care.
    Anonymous 42,789 Replies
    • February 1, 2007
    • 04:32 PM
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  • is there any possibility that ive been damaged by adhesions tearing inside of me? there have been a few occassions where ive changed possition after a long period of(i had avery boring job for awhile)time and could hear and feel tearing within my abdomen that was excruciatingly painful.
    nosmartyr 40 Replies
    • February 1, 2007
    • 06:01 PM
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  • ive always wanted to try acupuncture anyway. i had very bad back pain that i thought it could relieve. kansas isnt the best place for any thinking outside the box, really. i'd certainly like to try any other homeopathic remedies anyone has had success with for the endo. right now, i am mostly concerned with the structure in my uterus. i still appreciate any and feedback regarding endo, though. keep it comin
    nosmartyr 40 Replies
    • February 1, 2007
    • 06:07 PM
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  • I can't believe she'd scare you and mention cancer and then not follow up on it - that's just insane. You need another doctor and you need a biopsy...uterine cancer is curable in its early stages. Make this your paramount mission. Once u get the clear on the cancer, look hard at other possibilities like adeno and fibroids (my suspicion). Then try to get it under control with natural approaches.
    Anonymous 42,789 Replies
    • February 1, 2007
    • 07:04 PM
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  • I don't know if it has anything to do with any of my other symptoms, but I have a lot of moles. I have very pale skin, reddish brown hair, and very light blue eyes. I've had many blistering sunburns and i have never ever tanned. About every other day i notice a new mole somewhere. I have a couple new ones on my leg and I was just noticing that some new ones on my left arm form a wavy line. Also, 3 of my older moles itched, bled, oozed, scabbed up, and fallen off. Of the 3 two grew back larger and differently colored and the 1 just left a scar even though I never picked at it. Another one (hmm, only one isn't on my left) on my left leg that I ve had since I was little has gotten bigger and it isn't pretty to look at. The only right one worth noting used to be one of a set. i had 2 small moles on my arm that were the same size and shape and color, they looked like little eyes looking at me. now one isn't raised anymore and it's not even round. i can see darker little spots within it. so, i dunno i f i should worry about it or not. It'd be kind of nice to see a doctor who could just look, test, tell me what's going on, and be done with it. I've been meaning to go to a dermatologist for years, but etwas always comes up. Should i see a derm now?
    nosmartyr 40 Replies
    • February 1, 2007
    • 07:05 PM
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  • clean your whole body! It sounds like an intestinal disorder, considering the pain and stool color. Research food intolerance diets to find out what you are eating that your body hates. Look up what green stools mean. We need doctors who will take the time to look at all our symptoms. Don't give up. Find doctors who will listen. Have all the tests done - CBC, hormones, thyroid, everything. Have you been to an internist? A BOARD CERTIFIED internist.
    Anonymous 42,789 Replies
    • February 1, 2007
    • 09:48 PM
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  • I thought I'd give an update of my condition. Four days ago, just sitting here at the computer I began to have intense shooting pain from my lower to middle back. The night before it had been so sore I slept on my belly(i never do that) with a heating pad on my back. Oddly enough I was researching back pain. The pain only lasted 5 minutes at the initial severity, then became a 7 that was made worse by moving. I spent all day in bed with the heating pad. I was adjusting myself a few hours later and reached, not far, for the heating pad and pain shot through my arm. I immediatly began bawling again and it hurt like that for a few hours. We went to see the doctor the next day and she tested my reflexes, pressed on my back, and told me I had injured my back. She asked me if I was doing anything strenuous over the weekend. Of, course, I wasn't. I didn't even have a single outing with out my wheelchair. I don't even push it myself. While I was there I got the results back from the US done last Friday. It turns out I have a complex cyst on my left ovary and a softball sized fibroid in my uterus. She gave me a srip for cyclobenzaprine and vicodin(thank god I finally got a freakin pain med) which I filled that day and took. The vicodin helps a whole lot. The muscle relaxer seemed to relieve my arm pain the next day. Is it normal to hurt a muscle so badly from just sitting? And the thing I reached for wasn't even out of reach. I looked up complex cyst and found out that it could be cancerous, but my doctor sure didn't tell me that. I have no idea how a fibroid that large could have been missed twice on US. If anyone has a similar story, please let me know. My gyn has suggested I may have two uterusus, if that helps anything. So, I was taking the vicodin for two solid days and hadn't had a BM three days before that. Today, I had to go to the ER my constipation was so bad. My anus was prolapsing when I wasn't even pushing. I had two enmas and got a CT that revealed my whole bowel was filled with stool. I was told to take magnesium citrate. I took it a year ago before my colonoscopy and it worked a whole lot better then. I've had almost a whole bottle and very little stool, but a whole lot of gas. Why isn't this working very well? I really need to get cleaned out. Why do I get constipated during my period and why am I constipated when i eat fruit an take fiber supplements? Aren't these sposed to make it better? I don't have diarrhea alternating with constipation either. Just hard, dry stools, every four or so days. I get a wave of nausea, go to the bathroom, poop some hard large ball, then stop before I feel emptied. It hardly seems like a normal way for my bowels to function. I'm so frustrated rite now. I just want to poop.
    nosmartyr 40 Replies
    • February 8, 2007
    • 04:05 AM
    • 0
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