my medical mysteries solved

all these years, i thought i was just prone to indigestion, nausea and vomitting. since i can remember, i was sick several times a year from ‘indigestion’, spending days at a time in front of a toilet. when i was younger (grade school all the way to high school) docs thought it could be my appendix or i was just too ‘sensitive’. but i didn’t have insurance and i never had any tests done. in college, i often became ill but i thought it was just the stress and lack of sleep that made me ill. studying was hard too bc i could never handle coffee or anything else that contained caffeine that would keep me up, like all the other students. just thought i had a ‘sensitive’ stomach. i found out this week that i have a gluten intolerance, possibly celiac disease. but let’s back up and solve my other medical mysteries first.

in 2001, about 5 or 6 months before my wedding, i woke up with ringing in my ears, which i found out later is called tinnitus. i had bouts of vertigo here and there, but the day i woke up with tinnitus changed my world. soon after getting up, very irritated that i couldn’t get this annoying sound out of my head, i became dizzy. then the vertigo came. the room started to spin and i lost my balance. it was like this for many, many weeks. i couldn’t go to work, which at the time was teaching for a not-for-profit special ed organization. i loved my job, but i couldn’t take an hour long subway ride into the city. i could barely walk in a straight line. i went to an ENT who, of course, didn’t know what was wrong. he said he checked everything… no hearing loss, everything looked ok. but he did say he couldn’t look into the inner ear and that was probably where the problem was. thanks for nothing. i went to an internal medicine doc who said i should get my head checked out. did an mri. became so nauseous that i had to vomit during it, but they told me if i did, i’d just have to come back another time and do it all over. so i held back my tears and my vomit for as along as i could, and as soon as it was done, i let it all out. they didn’t find anything. my parents (which brings up another mystery to solve to be told at another time) thought i was just being ‘sensitive’ again and took my to a korean neurologist and did an ekg or eeg, i don’t remember, but it came back fine. he told me i was JUST ANXIOUS about my upcoming wedding, and he gave me a drug called paxil. btw, the wedding was in 9/01 which we booked in 9/00 and all the planning was done by 12/00 (i was a freak about getting everything done early). so i knew i wasn’t anxious, but no one listened. paxil made it worse, so i stopped taking it. which made me want to die!!! not only was i dealing with tinnitus, loss of balance, and vertigo, but now i felt like my head was being split open with a hammer and i just wanted to DIE. i thought, maybe it’s withdrawal, so i took paxil which relieved my suicidal thoughts. doc didn’t even tell me how bad it could be and how to slowly wean off the drug. i figured it out myself and weaned off. back to my medical mystery… no one could tell me what was wrong. by now, i had been out of work for 2 months and my supervisor somehow arranged it so that i was still getting paid and had my insurance for the rest of the school year, but i was able to stay home and figure out what was wrong. she was an angel. then one day, my fiance came over one weekend and took a long poop in my bathroom. thank goodness he did bc he picked up my ny times magazine to read while on the can and read about the rusk institute and how they help people with balance problems. i was still in my spinning world, and i was unable to read, look at the computer, or go anywhere. basically, my body was keeping me prisoner. as he read about the people who received therapy there, it seemed they had a lot of the same symptoms as i did. i made an appointment the next day and i was finally told they knew what it was and they could help me. i had a vestibular disorder in the inner ear. they did all these tests, even went on some nasa made machine which spun me around. then the therapy came. lots of exercises to help the brain and body deal with my imbalance of inner ear stuff (sorry for the lack of technical terms, but i don’t remember). did this for 2 months, and i was better. at some point, i was walking by myself again w/o losing balance. i was taking public transportation again. i was going to be able to get married. to dance at my wedding. to live life again. and just in time. august was my last month of insurance and the end of my therapy. september was my wedding month. i still have tinnitus and still get vertigo/dizzy spells every so often, but it’s under control.

once married, it became painfully obvious that there was something else wrong. every time we tried to have sex, we couldn’t. it was just too painful for me, and my vulva was always red and irritated. this lasted for for a long time before i sought help. i just didn’t want to go to another doctor. as patient as my husband was, i felt bad for him. in 2002, i went to 4 obgyns before i got the proper diagnosis. first it was a possible UTI even though i showed no symptoms. treatment did not help… bc i didn’t have a UTI. then i was told it was bc i was a newlywed. i was ‘inexperienced’ and anious. treatment included a hot bath and lots of wine before sex. did it work. nope! the next just didn’t know… dumbfounded. or maybe just dumb. i finally went to an obgyn who was an infertility specialist. i don’t know how i found her and why i chose to go see her, but i did, and i was glad to. as soon as she checked me, she knew immediately. vulvodynia. she gave me a numbing agent. which helped the pain, but didn’t make it much fun. numbing agent. ’nuff said. prognosis… it can go away on it’s own, or not. sometimes child birth can make it better. or not. for now, suffer. but at least i knew what it was. present day, i do no have pain anymore. after my first daughter was born in late 2004, we noticed my vulva wasn’t as red and irritated anymore.  a year later, and the pain was still there but not as bad. after my son was born in late 2007, hardly any pain and it’s becoming enjoyable for me. FINALLY!

2 medical mysteries solved. 2 more to go.

august 14, 2003. this day has a long story in itself because of the blackout that hit the northeast. for me, it’s like 9/11, which happened 2 weeks before our wedding. those are 2 days when i remember where i was, what i was doing, and all the little details. my father had been sick for some time with an unknown illness. he fainted that day and was admitted into the hospital during the blackout. he had pancreatic cancer and had 6 months to live or less. he lived 5 months and died 1/9/04. but for those 5 months, i desperately tried to get pregnant in hopes that he would live to either know he would have a grandchild or possibly beat the odds and live to see his first grandchild. after a couple of months, i knew something was wrong. i went to my obgyn, the one who diagnosed me with vulvodynia and was an inferility specialist, and although we hadn’t been trying a year, i lied and said we had. she took a bloodtest. my hormones were out of balance and i was diagnosed with pcos, poly cycstic ovarian syndrome, which basically means i don’t ovulate. i had always had irregular periods, knew that something was off, but never thought i couldn’t get pregnant. sometimes, it was 60 to 90 days between periods. my obgyn started me on clomid. the first month didn’t work. she upped my dosage. then my father passed away. i’m sure the stress didn’t help, but we decided to keep trying. 2nd month didn’t work again. obgyn added metformin, which you take for 3 weeks in increasing dosages. the 3rd week, i got sick and had to go to er. 3rd month didn’t work. she upped the clomid dosage and took out metformin. if it didn’t work this time, she said we’d go to injections. for us it wasn’t worth it. i was sick all the time. i was stressed out. plus, all this time, i still had vulvodynia, so it made trying to get pregnant quite a challenge. i was crying a lot bc of the pain, and yet we had to keep going. it was terrible. so this was it. we would stop if it didn’t work this 4th month. but it worked, and that’s how our first came to be.  with my 2nd, it took 2 months since we already knew which dosage worked. it was much easier the 2nd time around. the hard thing with this pregnancy was that he started as a twin but it became a vanishing twin. we saw the 2 heartbeats at 6 weeks and 7 weeks. at 8 weeks, the fertility specialist (a new one) noticed one was growing but the other wasn’t. by 9 weeks, the heartbeat was getting weaker. “we’ll see” she said “but it doesn’t look good.” by 12 weeks, it was gone. but my 2nd was healthy and growing. and i had gestational diabetes with both pregnancies, which is more likely when you have pcos. now, i’m still living with pcos. my periods are still 60 to 90 days apart. my skin breaks out around when i should be getting my period but don’t (probably when all the cysts are growing but don’t ripen, thus the lack of ovulation) and then i stay ‘hormonal’ until i do, which is many weeks later.

and my final (and hopefully last) mystery was solved this week. like i said at the start of this long blog (sorry!), i had always had problems with indigestion and my stomach. i grew up doing a lot of vomitting, had nausea all the time, and had frequent headaches. for the headaches, i was told in 2000 that i had migraines. in 2002 or 2003, i was told i had ibs after my pcp (primary care physician) found blood in my stool and i had a colonoscopy done. the gastroenterologist at that time also told me i had fissures. early 2008, i was feeling sick more than usual and was vomitting every other week for 4 months or so. i also had diarrhea and loose stools. i went to my current pcp, who did an ultrasound of some organs and found nothing. but she said it wasn’t normal for me to be so sick all the time and suggested i go to a gasatroenterologist. my previous experience with a gastro dr was not great so i decided not to. when i had my 1st colonoscopy done, the dr made me fell very small and stupid for even being in his office. “why are you here. you’re too young to have any problems. you have fissures. just don’t push when you have to go. do anal exercises.” i kept telling him that i never strain. i’ve never had a problem like that. i sit and go instantly. sometimes 3 or 4 times a day. he didn’t care. he said i was straining and i had to learn not to.  i never wanted to go to another one of those again. and my pcp thought i had ibs bc i had stomach problems, and i was going too much. late 2008 into 2009, i noticed my stools were loose again. then i had bloody stool for about 3 weeks. i’ve had hemorroids before, esp during and after pregnancy, but they never lasted 3 weeks. so i sucked it up and found another gastro dr. what a great find!! he asked lots of questions, and really went into all my past symptoms. ordered bloodwork, colonoscopy and endoscopy. said i was tender in upper abdomen. possible heartburn/acid problems. bloodwork came back positive for gluten intolerance. endoscpy showed that i had polyps in stomach (very common), which he removed and awaiting biopsy report. waiting to see if i also have celiac disease or if it’s just an intolerance. but no more gluten for me and the family. i’m also going to test my kids and stressing to my birth mom and sister to get tested as well. but he said it looked like i had been gluten intolerant for years, not just a recent thing. but also not born with it. he also tried to do colonoscopy but i was moving around too much, ‘thrashing’ is the word he used. so he did a sigmoidoscopy which showed inner hemorroids. then asked me to get a barium enema since i was already flushed out and he’d feel better if he could get a complete picture of my gi tract. i didn’t know what it was so i said ok. barium enema is NOT ok. and i really hope i don’t have to do it again. so no i’m just waiting for all the results to come in. but at least i now know that most of my nausea, vomitting, diarrhea, general malaise was due to gluten. who woulda thunk? not me.

so last night i threw out almost all our gluten products (i’ve saved a few things for the kids until we know for sure and we’re going to let them finish off what we have for them) or saved unopened nonperishable items for donation, and went shopping for gluten-free items. for the most part, my husband is in it with me and we’ve agreed that the whole family will be gluten free. it’s a process, and having gone through gestational diabetes twice, i know what it means to change your diet. but this is for life, so it’s definitely a big change. i’m reading about it online every day. i’m surprised how it affects people. being gluten intolerant doesn’t seem like a biggie, but reading about how sick people get from the smallest exposure to gluten is surprising (and scary). yesterday, i ate some leftover thai curry. i didn’t think there was any gluten in it, but about 30 -45 minutes after eating, my nausea, headache and indigestion came back. and it lingered for hours. i drank lots of water and i was immobile on my couch. was it the gluten? is this why i’ve always felt like this almost every day for years?

if anyone has read through this, thank you. it feels good to let it all out. i have so much to say, but i’ve said enough for today. more blogs to come. about lots of stuff~


One thought on “my medical mysteries solved

  1. Aunt Jayne says:

    I, too have had unexplained/unusual symptoms for most of my life. I get it!
    I was finally diagnosed in July of 2007 with Celiac Disease and Type 2 diabetes. Since living gluten free, I feel fabulous.
    I have started a blog called glutenfreewithauntjayne to help newly diagnosed patients of this disease so that they can benefit from all of my research and my recipes (I try them before I post them to make sure they are good)
    There are articles in my blog about hidden gluten etc. as well.
    Check it out and take care of you.

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