This has been quite a journey and I am only 2 1/2 years in. After 40 years of being relatively healthy, I woke up sick one day and have never turned back. I have been to 16 doctors in all types of fields. I actually feel like I am just being ping ponged between specialists because no one wants to be the one to take on my problems. Maybe I just haven’t gotten the right referral yet. My first official diagnosis was Allergies. Hayfever, dogs and mold. With the mold tests I had a delayed reaction that turned into blisters. The doctor was surprised, he had never seen anything like that. Yet, he did not feel he needed to investigate further. He could find no food allergies which is why I ended up there in the first place since my stomach always looked and felt like it was going to explode.
So, as all chronically ill people do, I turned to Google. Constantly plugging in my symptoms, reading and researching. After several months of suffering, I came across Endometriosis. It took some convincing and several visits to the Gynocologist to get her to look for it. I demanded a tubal ligation. I was done having children anyway. She went in and sure enough, it was Endometriosis. I now have my tubes tied AND take hormones for birth control. She wasn’t a “skilled enough surgeon” to remove it. Her words, not mine.
I began the allergy pills. I began the hormone shots, but there were some things still happening to me that could not be explained. With each hormonal cycle (you still have them even when on Depo Provera), I walked with a limp. I kept asking, what does my vagina have to do with my ankle?? As a friend said, the vagina bone is connected to the ankle bone…yeah, I don’t think it quite works like that! Then one day after going to the fair, the veins in my ankle exploded. I thought it was a rash. Maybe I had gotten into something. I went to the doctor. Mine was out that day. The replacement sent me for an ultrasound because he was thinking blood clot. No, all good. My right leg measured an inch and a quarter bigger than the left. A month later I brought this up to my regular doctor at my physical. I showed her the picture. She decided to do an ANA test. Pain, stomach problems, peeing blood, now this. She was sure it was Lupus. It came back low positive 1:80, but I had several different patterns which concerned her. She did an ENA – negative. She sent me to the Rheumatologist anyway. He ran a ton of blood tests and did xrays on my low back and ankle – pain areas. It came back that I have Arthritis in both places. I added daily Meloxicam to my pills. Upon my next few visits, because I continued to complain of my problems, he threw in the diagnosis of Fibromyalgia and IBS and referred me to a Gastroenterologist to confirm.
A year and a half after having a sleep study done, someone decided to go over my results. Insomnia and Severe Periodic Limb Movement Disorder. Add Gabapentin to the growing list of meds. After many expensive tests, including a lovely colonoscopy, the Gastro found I have gallstones. It took 2 years, 2 ultrasounds, 2 different Gastroenterologists, a HIDA scan and colonoscopy to find something as simple and common as gallstones. Surgery was recommended. At this point I passed on that. I am stubborn. If they won’t remove the Endo, then leave the Gallbladder too!
In the meantime, I turned to a chiropractor for help with the migraines. He found on xray that I have “military neck,” as he called it. I have lost the curve in my neck completely. At least his treatments do not involve pills! And he has all but cured my migraines! If I go too long between visits, they start creeping up again, but in the meantime, he is able to keep them at bay.
The Rheumatologist did another round of blood tests. Add Vitamin D deficiency. More pills. While we are at it, let’s double the Gabapentin since I am still not sleeping. Finally, some relief!! Four months flare free!! I was finally able to exercise! Finally getting back out there and socializing again, though I had cut many people off of my “friends” list when they abandoned me during my time of need.
Out of curiosity, I had my DNA done. I still felt like something just wasn’t right. I do not like being completely dependent on all this medication. These pills are only masking the real problem, not fixing it – whatever it is. My DNA came back that I have 112/129 genes for MS. Well that was something we hadn’t considered. So my doctor decided to order a brain scan. No MS, but they did “incidentally” find that I have something called Empty Sella Syndrome. My pituitary gland is flattened to the point that it cannot be seen on MRI. The pituitary is involved in almost every hormonal process in the body. Interesting that my flares coincide with hormonal fluctuations. She decided since I had already had my TSH and T4 tested, that we should check my Prolactin. Upon further investigation, I read that the Pituitary is connected to insulin production and asked that she check my A1C as well. In fact, last time I was at the eye doctor he saw cholesterol deposits and suggested I have my cholesterol checked as well.
As usual, after a week of waiting, I contacted the office. At the end of the day the nurse called back and said my results were all within normal range except for my “Good Cholesterol” and I should exercise more. Ah, yes, the proverbial – your obesity is causing all your problems. Not to mention the 25 pound weight gain thanks to all of these medications. I emailed my Gyno (she prescribes hormones) and told her of the Empty Sella and TSH, T4 and Prolactin tests asking if she thought there were any other hormones that should be checked. Of course it has been a month and a half with no response. I guess I will ask in person in November when I have my exam. Perhaps I just need someone to refer me to an Endocrinologist. Maybe I just need a doctor who cares and is willing to try to put this whole puzzle together. Finally, a month after my testing, my actual blood test results showed up on my online chart. Every one of them were flagged. LDL too high. HDL too low, A1C 5.9 – pre-diabetes. Yet the nurse said everything was within normal range!!
After my initial anger, I realized that none of the numbers by themselves is anything to worry about. In combination with everything else, I wonder. I still feel like there is something they are missing. Something that ties it all together. Autoimmunity? It all seems to be connected. Endometriosis causes inflammation. Rampant inflammation causes arthritic damage. A lack of vitamin d causes pain. High cholesterol – deposits in the eyes and gallstones. But how, why did it all begin?? And how to fix it?? And WHO CARES??? Where is Dr. House? Where is the doctor that is supposed to want to get to the bottom of it? Hasn’t anyone asked, why does it take up to 7 years for a definitive diagnosis of an autoimmune disorder?? Interesting that that is also the number of years women with Endometriosis often go undiagnosed for. Is there an autoimmune connection to Endo? Many suspect there is. In the meantime, I will keep popping my pills, taking my shots and complaining when I need to. There is an entire community of people out there that are among the undiagnosed, over diagnosed and misdiagnosed. Those are my people! Together we suffer.