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Posted By : Justlivlu - 5/1/2017 7:52 PM
One year ago in April 2016, I was home for Spring Break from college and I got a UTI. Nothing super out of the ordinary for me. I had had over a dozen just within the last year and a half. I was given antibiotics, and I flew back to North Carolina. However, I still didn't feel any better. Went to Urgent Care - they said I had ecoli. More antibiotics. I finish up that second round, and I still feel miserable. Go back to another doctor. Blood in my urine. Third round of antibiotics (in a row, mind you). I felt like I had been stabbed when I went to the bathroom, so I was taken to the ER where I was checked into the hospital for three days. They couldn't figure out what was wrong, so they gave me the diagnosis of Pelvic Inflammatory Disease, despite the fact I tested negative for all STDs.

June 2016, I slipped and fell into the bathtub, hitting the back of my head on the faucet. I ended up with a concussion.

July 2016, I woke up with that similar stabbing pain in my abdomen. I go to the ER, and they check me into the hospital for another three days. They assumed it was PID again, but I continued to get sicker and sicker with each antibiotic dose. They ended up figuring out I had c. Diff.

End of August 2016, I got another UTI. More antibiotics.

September 2016, I'm back in the hospital with c. Diff.

And so began my cycle.

However, at this point, I was sent to a gastroenterologist where a colonoscopy showed I had IBS from the c. Diff. I went on the low FODMAP diet. I then saw a urologist. She had me do a VCUG - it showed reflux. She did a cytoscopy - said I had three holes in my bladder, so I had a duplicated system on my left side. She wanted to put me on daily antibiotics but couldn't because of my c. Diff issues. So she did a DCUM instead - and coated an infection into my bladder. I refused to see her again and found a new urologist who basically told me that "this was my life," which I said was bullcrap.

October 2016, I wake up one day, walk about three steps and black out. When I hit the floor, I hit my head. I wound up with another concussion. I am sent to a cardiologist. I'm told I have hypotension - my blood pressure has always been really low - and to start increasing the salt in my diet. The month goes on, and I start to lose feeling randomly. It starts in my hands. Soon it's in my toes and my feet. My right knee. My hips. My shoulderblades. My lower back. The right side of my neck. It comes and goes. It's very random.

I meet with a pediatric urologist who says I need laparoscopic ureteral reimplant surgery to fix the reflux. At this point, I've had 19 UTIs in two years. I go to a physical therapist for pelvic floor pain to prepare for surgery. I tell her about the numbness and she mentions fibromyalgia. Surgery in December 2016 goes well. Turns out I DON'T have a duplicated system, and that other doctor was just insane. (Hahaha. Ha. Ha.) They do diagnose me with Interstitial Cystitis.

After surgery, I see a neurologist. They run MRIs and CT scans and do an EEG and an EMG, thinking I have MS, and everything comes back normal. He sends me on to a rheumatologist.

The MRIs of my spine show degenerative disc disease in my neck, degenerative joint disease at the base of my spine, and that my spine is slightly crooked. He presses on my joints and has me bend this way and that way. He tells me I'm hypermobile - a lot of joints extend further than they should. I tell him about my cousin with Ehlers Danlos, but he doesn't believe I have that. He does diagnose me with Fibromyalgia. Runs some blood work. I test positive for Autoimmune Diseases but my tests won't show which one. I'm supposed to go back in June 2017 to have my tests redone.

I visit a PCP who specializes in Fibromyalgia. She puts me on Cymbalta. I have a bad reaction. She puts me on Lyrica. I have a bad reaction. After everything my body has been through, it reacts poorly to everything. As my mom likes to say, I'm a "delicate flower" now. (HA.)

In February, I pass out and hit my head again. I get another concussion.

I see an endocrinologist. I've had hyperhidrosis my entire life, my thyroid keeps showing its off in my bloodwork, and I don't have enough progesterone. She runs some more bloodwork and takes an ultrasound of my thyroid. She recommends I get an IUD to try to stop my periods in order to calm down my system from all the pain it's been in. I talk to my surgeon, the pediatric urologist, about it, and she agrees, an IUD would be helpful. She also retests my VCUG, and it looks as though the reflux has stopped. However, I've had a UTI since surgery. (Ugh.) I am still in a world of pain, maybe because of the Interstitial Cystitis, but my doctor also says she thinks the pain is uterus related.

I visit my OBGYN today, May 2017, and he tells me I might have Endometriosis. It was something doctors have mentioned in the past year. He says the only way to find out is to do another laparoscopic surgery on me. He says an IUD would irritate my system more and he does not recommend it. However, he does recommend I get the Depo shots done, but warns me they can have side effects like weight gain and changes in mood. (I've already gained 30 lbs in the past six months.) He also says that I need to see another urologist who knows more about the Interstitial Cystitis. He wants me to do these things before even considering surgery, but knowing the way my body reacts to anything new, I am scared, because once I've had the shot, it's in my system for three months, and it's not like a pill that I can stop taking. He won't do the surgery, though, until I've exhausted these other resources, even mentioning he could remove my uterus, but that the bladder pain would still persist.

I know this is a lot - I just needed to ask. Has anyone dealt with all of these things? Or can anyone tell me what their experiences have been with some of these conditions? I don't see a light at the end of the tunnel. I have had doctors tell me to try to go to the Mayo Clinic in Minnesota, but I'm in Idaho. I am 22 years old. I'm trying to work and I live on my own, and I am struggling so much to get through my days. I don't know what to do anymore. Please help. Thank you.

Post Edited (Justlivlu) : 5/2/2017 4:02:31 AM (GMT-6)

Posted By : straydog - 5/1/2017 9:07 PM
Hello & welcome to the forum. After reading your post & seeing your age it really just floored me. I have read your post several times trying to digest all of this.

If you do in fact still have the dx of pelvic floor dysfunction, get a referral to a women's center ASAP. They offer far more treatment options than an OBGYN, same with the possibility of endo. They may very well be able to help with the IC. This will hopefully eliminate running to several drs for different things & not fall into the trap of the right hand not knowing what the left is doing because of so many drs involved, too many hands in the pie.

Secondly, I would get myself a new rheumatologist. If you do have Fibro he/she can offer treatment options. Telling you that your lab work came back positive for some AI disease but we don't know which one is a crock of _____!! AI's can be difficult to dx, however, it is a process of proper testing & elimination. A good rheummie will be able to give a correct dx if you have an AI disease.

Please do not get offended by this next statement I am about to make. As an outsider looking in, in some areas you have been over treated on some things & under treated in other areas.

It is time for you to think about getting a whole new set of fresh eyes to look at you. If going to one of the Mayo Clinics in Minnesota is a problem, is there one closer to you?

Take care.
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