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Mystery medical condition with many factors
I am a 25 year old female with no underlying conditions. This has been going on for almost a year now with little to no answers. I’ve been to multiple doctors who have ideas but no real diagnosis. I’m running out of options and with my healthcare expiring 2022 I really want to start going down the right path to figuring out what is wrong with me.
There are so many factors I have been considering, including ones that may have had an impact long before any symptoms showed themselves. Thank you so much for reading and please give me any opinion you might have, any and all are valuable.
In October 2020, for my boyfriends birthday we had some ColdStones ice cream. I ordered the largest waffle cone in a cup I could order, as I kid I was allergic to dairy, but as I got older I thought my tolerance had risen so I felt comfortable ordering and eating my whole serving. Not long after, I started feeling really disoriented and dizzy. I literally felt like I was dying, I ended up projectile vomiting outside and passing out in the bedroom. When I woke up, I had a terrible hangover and felt so nauseous that I could barely eat. I decided ice cream was the devil but continued to eat cheese since my reactions were less severe.
In January 2021, I had a mild case of covid, luckily for me, and pretty soon I was back on my feet. My friends and I went on a short hike up a small hill, the journey up was full of joking and we could feel a little of the burn but nothing crazy. We reached the shortest but steepest part of this hill and I decided to jog up it to get my heart rate going. Once we reached the top we just sat there for a while before it was time to head down. On our descent, I started getting a sharp pain in my abdomen that caused me to pull my pants away from my body to help ease it. It wasn’t working and soon I couldn’t walk or stand anymore. I just ended up on the floor in the middle of this trail just sweating, squirming and crying trying to make it stop. After what felt like an hour I could weakly stand and could walk with support down the rest of the hill. I did eventually walk on my own but I had to take it slow and easy.
March 2021 is where everything hit the fan. I was on the last days of my period and I woke up feeling weak. When I sat on my couch I felt an uncomfortable shift in my stomach, deciding I should go change my tampon I headed to the bathroom. When I sat on the toilet my stomach exploded in pain, it felt like a live wire in my stomach. I straightened my posture to help alleviate the pain, but it only got worse. I quickly pulled out the tampon, expecting the pain to disappear with it but it just kept compounding and getting worse to the point that I stood up and tried to stretch but to no avail. I started to get black dots in my eyes, a high pitched ringing in my ears, and tunnel vision. I have a history of passing out and seizures so my first instinct was to sit on the ground, the pain was so intense and severe I couldn’t even speak. It was not letting up at all, and the only way I could make the pain stop was to lie face down on my stomach with my left leg up to my side.
My boyfriend found me that way 10-20 mins later and tried to help me lay in bed. It took me a while and a lot of assistance to get to my feet, but once my feet were on the ground I almost passed out again. I needed help to leave the bed for a week after.
Shortly after this, I stopped using the bathroom regularly and became very constipated. I didn’t go for about 3 months, at first I was just afraid to push but after even if I pushed nothing would come out. I was extremely bloated, had no appetite, and always felt nauseous. This condition persisted for 6 months, I took stool softeners, laxatives, and enemas sometimes together since by themselves they weren’t strong enough.
Since March, my period pain has increased 10x. There are some months I can’t work because the pain is so severe. I had never had period pain before and now it’s literally taking me out and I can’t function.
Throughout the time frame I have listed, I have gone to the emergency room 3 times, OBGYN 2 times, primary care doctor 3 times, and a gastroenterologist once, they did 2 ultrasounds, an MRI, colonoscopy, Pap smear, intravaginal ultrasound, stool samples, blood tests, urine samples and nothing.
One of the ultrasounds showed some small ovarian cysts, but the OBGYN thought it was unlikely that it was causing the pain.
The gastroenterologist didn’t find anything of note in my lower intestine, but recommended that I go onto the low-FODMAP diet, which has helped with the constipation and bloating.
My primary care doctor originally told me it could be shingles or an abdominal migraine.
The pain though is still a mystery, I stopped using tampons after March and I haven’t had anything as severe happen since. I originally thought TSS but after doing research didn’t think it described my symptoms. Please let me know what you think, any idea would be greatly appreciated. Thank you!
There are so many factors I have been considering, including ones that may have had an impact long before any symptoms showed themselves. Thank you so much for reading and please give me any opinion you might have, any and all are valuable.
In October 2020, for my boyfriends birthday we had some ColdStones ice cream. I ordered the largest waffle cone in a cup I could order, as I kid I was allergic to dairy, but as I got older I thought my tolerance had risen so I felt comfortable ordering and eating my whole serving. Not long after, I started feeling really disoriented and dizzy. I literally felt like I was dying, I ended up projectile vomiting outside and passing out in the bedroom. When I woke up, I had a terrible hangover and felt so nauseous that I could barely eat. I decided ice cream was the devil but continued to eat cheese since my reactions were less severe.
In January 2021, I had a mild case of covid, luckily for me, and pretty soon I was back on my feet. My friends and I went on a short hike up a small hill, the journey up was full of joking and we could feel a little of the burn but nothing crazy. We reached the shortest but steepest part of this hill and I decided to jog up it to get my heart rate going. Once we reached the top we just sat there for a while before it was time to head down. On our descent, I started getting a sharp pain in my abdomen that caused me to pull my pants away from my body to help ease it. It wasn’t working and soon I couldn’t walk or stand anymore. I just ended up on the floor in the middle of this trail just sweating, squirming and crying trying to make it stop. After what felt like an hour I could weakly stand and could walk with support down the rest of the hill. I did eventually walk on my own but I had to take it slow and easy.
March 2021 is where everything hit the fan. I was on the last days of my period and I woke up feeling weak. When I sat on my couch I felt an uncomfortable shift in my stomach, deciding I should go change my tampon I headed to the bathroom. When I sat on the toilet my stomach exploded in pain, it felt like a live wire in my stomach. I straightened my posture to help alleviate the pain, but it only got worse. I quickly pulled out the tampon, expecting the pain to disappear with it but it just kept compounding and getting worse to the point that I stood up and tried to stretch but to no avail. I started to get black dots in my eyes, a high pitched ringing in my ears, and tunnel vision. I have a history of passing out and seizures so my first instinct was to sit on the ground, the pain was so intense and severe I couldn’t even speak. It was not letting up at all, and the only way I could make the pain stop was to lie face down on my stomach with my left leg up to my side.
My boyfriend found me that way 10-20 mins later and tried to help me lay in bed. It took me a while and a lot of assistance to get to my feet, but once my feet were on the ground I almost passed out again. I needed help to leave the bed for a week after.
Shortly after this, I stopped using the bathroom regularly and became very constipated. I didn’t go for about 3 months, at first I was just afraid to push but after even if I pushed nothing would come out. I was extremely bloated, had no appetite, and always felt nauseous. This condition persisted for 6 months, I took stool softeners, laxatives, and enemas sometimes together since by themselves they weren’t strong enough.
Since March, my period pain has increased 10x. There are some months I can’t work because the pain is so severe. I had never had period pain before and now it’s literally taking me out and I can’t function.
Throughout the time frame I have listed, I have gone to the emergency room 3 times, OBGYN 2 times, primary care doctor 3 times, and a gastroenterologist once, they did 2 ultrasounds, an MRI, colonoscopy, Pap smear, intravaginal ultrasound, stool samples, blood tests, urine samples and nothing.
One of the ultrasounds showed some small ovarian cysts, but the OBGYN thought it was unlikely that it was causing the pain.
The gastroenterologist didn’t find anything of note in my lower intestine, but recommended that I go onto the low-FODMAP diet, which has helped with the constipation and bloating.
My primary care doctor originally told me it could be shingles or an abdominal migraine.
The pain though is still a mystery, I stopped using tampons after March and I haven’t had anything as severe happen since. I originally thought TSS but after doing research didn’t think it described my symptoms. Please let me know what you think, any idea would be greatly appreciated. Thank you!
COMMUNITY LEADER
An article about abdominal migraine says that when diagnosing it, the following should also be looked at as possible causes: urogenital disorders, kidney disorders, peptic ulcer, cholecystitis (gall bladder), bowel obstruction, gastroesophageal reflux, Crohn’s disease, and irritable bowel syndrome, and adds that if there is any alteration in consciousness, seizure disorders should also be ruled out.
If you already know you have a seizure disorder, you might go see the doc who diagnosed you with that. And if you haven't seen a gynecologic urologist, you might want to do that too.
If you already know you have a seizure disorder, you might go see the doc who diagnosed you with that. And if you haven't seen a gynecologic urologist, you might want to do that too.
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