In October, about 7 weeks post op, I got my EDS diagnosis! It has been really helpful because now doctors kind of know what do to with me now and can make better decisions.
I got a third UTI shortly after the second, and my PCP put me on antibiotics. It was the same antibiotic I was put on for the first one. But, I started having problems. My legs became weaker, I was having more subluxations. A Google search later and I found out that people with EDS shouldn’t have any antibiotics from that class because it can increase issues and complications, and can cause irreversible damage. I called my PCP and sure enough, she found the same information. I was taken off of it immediately. I do have irreversible damage. My legs have been quite bad since. I don’t lame my doctor, its not her fault, neither she or I knew that could happen. It was a learning experience for the both of us.
In November, I treated myself to a concert and meet & greet. 8 hours of Asking Alexandria. Expensive? Yeah. But, did I deserve it? Hell yeah! It was a really great time! I sat the whole time, and was super tired afterwards, but it was worth it. It was exactly what I needed for a mood boost.
In January, I started going to a gym. It took a few months to get the strength back in my abdominal muscles. It helped that I had started physical therapy for my lower back a month prior, which worked on my ab strength. It wasn’t until March that I felt like my abs were back to their pre-op normal strength.
In April I saw a uro-gynecologist. I had been seeing a urologist for years, but felt I needed to see someone a bit more specialized. I told her about the three UTIs I had post op and I also told her about how I thought I had a condition called Interstitial Cystitis. I told her all of the symptoms I have had for years, and that I have EDS, and IC is a comorbidity of EDS. She looked up the results from the UTIs and told me that the dips they did in office showed blood in my urine, but the cultures came back negative. So, I hadn’t been having UTIs at all! What was happening was that my bladder was so irritated that there was blood, which the dips showed. What she thinks happened is that the catheter I had during surgery caused IC flares. Now we know that when I have UTI symptoms, we need to get the culture back before deciding on antibiotics instead of starting them if the dip tests positive for blood. We are still working out how to best treat this. I tried an elimination diet, but there wasn’t anything to eliminate since I’d already cut out foods that caused flares. We’re trying to find a medication that my insurance will cover that will help. Hopefully in a few weeks we will have a better game plan.
I am so glad that I had my hysterectomy. I have no regrets at all about having it done. I keep doing things that I wouldn’t have been able to do with my period. It has definitely improved my quality of life. And even though I still have my ovaries, I don’t have the terrible PMS that I used to get. I don’t get the bloating, cramps, cravings, mood swings, migraines, vertigo, or any of the other things that would come with PMS and my period. I am very grateful that my gynecologist decided to side with me and do this. She’s really changed my life. Its one less thing I have to worry about.
My yearly checkup isn’t until the beginning of February because my gynecologist is SUPER booked, but when I go in for that checkup, I’m definitely bringing in uterus shaped sugar cookies for her and the others in the office. This is most definitely worth celebrating.