I am a 21yr old who is so tired of feeling sick and not having any answers. For as long as I can remember I haven't felt well. When I was only 13 I started to have extremely severe pain on my periods along with a heavy flow and horrible cramps that would cause pain throughout all of my abdomen and even into my legs/thighs. I went from doctor to doctor trying to figure out what was wrong, but no tests revealed anything. I have major headaches and migraines that started at this age and have continued without relief from medication, lifestyle changes, exercise, etc On average I get at least one migraine a day. I started to develop serious pain during urination and around the kidneys. This would happen on and off until a Womens health doctor decided it was probably most likely attributed to endometriosis.
Because I was so young (at this point 15) I wasn't allowed to have lapro to check it out. So I simply went to birth control that lasted for three months at a time, which was often immediately followed by another treatment so I would go without a period for six months at a time. Then I started my treatments in lupron, depro, etc which mimicked menopause (not super fun when going to prom, etc) but better than the severe pain from my menstrual cycles. Eventually after a few years of these types of treatments I switched back to six month bc pills and finally back to monthly birth control. I was tired of the excess weight gain and swelling which seemed to be caused by the treatments, and was in really good shape (with religious exercise schedules, dieting) and my wedding was coming up.
As luck would have it I started to have horrible break through bleeding which started two weeks before my wedding and lasted through the honeymoon (awesome...). I was having issues with my stomach too, along with the typical migraines and mild diarrhea. I tried to ignore it as much as possible because of my lack of insurance and frustration with feeling like no one believed I was in as much pain as I felt I was.
In October I went to the dentist who said that I was doing an excellent job cleaning my teeth, but something was wearing them down such as extreme acid reflex. Since I was a kid I avoided acidic foods because they seemed to bother me but I had no idea that it was serious enough to cause the damage to my throat and teeth.
I went to a nurse practitioner who prescribed me large dosages of prilosec. This didn't ease the acid which continued to still bother me and I noticed would burn my throat. I also had break through bleeding which wasn't going away but was minimal enough to deal with. In february I went on a trip and started to have extreme pain in my lower left abdomen. This was also followed by diarrhea that started suddenly but continued for a very long time (from feb-august). When I went to the doctor she suggested I go completely off dairy (have been lactose intolerant since I was 13, but would on very rare occasions use dietary supplements) as well as all gluten, sugar, greasy fats, and red meats, as well as caffeine & alcohol.
My pain spread from only being on the left lower quadrant to my right quadrant too. This was followed by a new problem that I had horrible pain when I would eat anything. Eventually this pain changed in to upper right quadrant pain which was stabbing and would radiate to my back. I had ultra sounds which came out inconclusive (except for an enlarged liver) and were extremely excruciating when I had to fill my bladder for the tests. I started to hurt so much when I ate, and really dreaded the diarrhea which was constant. I began to lose weight and went from 135lbs to lower than 110 in a matter of only a few weeks. I visibly looked like a skeleton, was extremely weak and fatigued. My joined began to ache, headaches got worse, but the worst part was that nearly all my tests were negative or said nothing. I had a Hida scan which showed my gallbladder was only 17% functioning and nearly didn't make it for the length of the test.
I had every blood work, stool tests, urine lab, ct scan possible which didn't reveal anything. I had a colonoscopy and endoscopy which showed nothing either. Even though my painwas so bad my husband made me force myself to eat so I did start to gain back some weight. In June I had what I think was a gallbladder attack but wouldn't go to the hospital because of no insurance and absolutely no faith left in doctors. During this time I had a fever, was vomiting uncontrollably for over 24 hours, including even when my stomach was well over empty and drinking water would only cause the vomiting to start over.
I would like to also point out that I stopped taking acid reflux medication because I could barely eat, let alone take pills. After this attack occurred I could no longer stand not having insurance so I applied for every type of medical assistance known to man. The doctors from my endo/colonoscopy felt that I should have my gallbladder removed, but once I changed on to OHSU medical programs the general practitioner was not convinced. After all I was now back up to 119 lbs so I was apparently "perfectly healthy." he ran a few tests which I guess didn't convince him of a serious condition and threw out the ideas of the tests before. My joints still ached, my pain was spreading up to my upper left abdomen as well, making it a large torso of pain, and seemed to bother my heart and lungs for some reason?
Endometriosis has repeatedly been thrown out as a cause, but he concluded ibs. When I explained that they are often mistaken for each other he was sone listening to me, so he prescribed me amitryptilene. Unfortunately I had already been on this medicine for migraine control for some time, but he was convinced it would help my pain. He also started me on Zantac and Seasonique.
After a few weeks my diarrhea stopped but now it turned in to extreme constipation where i wouldn't have a movement for over a week at least. I developed this new problem which started to really scare me. Entire portions of my body would go numb (mostly hands and feet), would feel like they had no blood flow and would turn purple or blue colors. I went back to this doctor who told me that I had too many symptoms to treat and since I was still able to work that I was perfectly fine. I wanted to say "I've been dealing with pain my whole life because of irresponsible doctors like you" but I held myself back and resolved to consider the fact that maybe I actually am crazy. My fatigue at this point was so bad that every second I had off I would sleep. Oh that's another situation, after I eat I become so overwhelmingly drowned that I basically pass out until I should eat again and the cycle continues. If given a chance I literally will sleep at all times and seriously envy bears in their ability to hibernate.
My pain was terrible and now I was constipated, too. My acid reflux was so terrible that I could barely stand it so I had to take tums even though I was positive it was making the situation worse. I went back to this doctor who told me that he would only write a prescription for more anxiety types of medicine like amitritypline (one day I'll be able to spell that word...). Frustrated and angry I canceled the next appointment I had with this doctor and felt that the best idea was to wait for my gastro appointment. When I went to this doctor he basically told me that he was reversing all the problems caused by my doctor before since he was prescribing all the wrong medication which caused my constipation absolutely.
This doctor decided to put me back on to prilosec since it shouldn't cause constipation and was a much more effective form of acid reduction. Well of course I knew what it was since I took it for many months but now my symptoms if diarrhea have come back. I am beginning to lose weight again and am starting to resent food all together. I'm so tired that I feel like a walking, famished zombie and the stabbing lain as well as atrocious migraines have more than consumed me. I don't know what to do or where to go from here. I had never though of lupus as being a possibility but some of the symptoms that are associated with the disease I have been living with without realizing they were serious or not knowing their cause. I've had red skin on my face since I was 13. It was acne at first but the redness is so obviously nit from acne at this point. Mostly it's free from raised infectious type issues but is extremely sensitive from sunlight. My eyes have been really starting to bother me and I worry about my vision which used to be extremely good. I get the red issues on my scalp at times and very noticeably on my chest (the areas exposed to sun). My joints and muscles have been hurting for some time now, and the headaches are still over bearing. I dont like to complain about all my issues because I honestly can explain them all before the doctor gets annoyed or thinks I'm a hypochondriac (who knows, at this point I don't think I can rule it out either). I use to exercise and function even through my pain but the last time I tried I blacked out while on a tread mill. I am considering lupus to be a potential cause for maybe some of my symptoms, still am pretty convinced about the endo, and am curious what might be going on with my gallbladder and liver. I didn't write this to complain but to hope that maybe there is someone else out there in a similar medical limbo.
Any advice would be greatly appreciated, and thank you for your willingness to get through this novel of a post. I've tried acupuncture/eastern medicine, enzymes like pro biotics, went to many types of doctors, two who were gastros, and have checked for things like hpylori, hepatitis virus, celiac disease, stds (however lifestyle really limits this as a probability already) thyroid problems, etc but I can't be sure of the validity of the tests, or which exactly were done for blood, urine and stool tests. When I was 19 also was found to have mono which supposedly went on for a few years and took a while to recover from (but never took tests after to see if I over came it. This is sometimes relevant to certain medical conditions such as gallbladder issues.
Please let me know what you think, or if it's just too frustrating to read I can delete the comment

. Thanks for any input! - The Overly Frustrated Patient.