Dysautonomia Katrina’s Story
I had my children in 1995, 1997, and 1998. I was 19 when I had my last one and knew that was enough. I convinced the doctors to tie my tubes. I had my first epidural with the third birth, and it did NOT work during delivery. They left the epidural in my back over night, and ran it again the next morning during my tubal ligation. It did not work then either. They ended up putting me to sleep.
The next few weeks I spent using painkillers as my best friend. The pain in my abdomen was devastating. “Just the after surgery” healing pain the doctors said. Just menstrual pain. Two years later I found myself in the ER, not being able to walk due to the pain. They found nothing, told me to follow up with my PC. And they found nothing. I dealt with it, the pain being at its worst during my cycle and ovulation. Then my bladder started burning all the time. Doctor said there was no infection, “drink cranberry juice”. So I did, about a gallon a day. Then I started peeing blood?
More tests revealed nothing. Then they sent me to see a Urologist. Three Urologists later, I hear Interstitial Cystitis, and now understand why my bladder is acting this way. They were poisoning me with cranberry juice.
So I began sampling medications. The medications worked pretty good at controlling the burning. But, then I couldn’t have bowel movements. After visiting my Gastroenterologist, and eating a crunchy egg sandwich, he took some pictures of my bowels and noticed they were not working. So, back to sampling new medications. Now I know I can’t take the bladder medications. They caused my bowels stop working. (To this day I still have not found a medication that does both.) However, I learned limiting your citric acid intake Helps! I also have a cystoscopy every two years (where they blow it back up for me and rinse it out.) I also have Irritable Bowel Syndrome(IBS), and I have had it since childhood. I use Levsin, and it works great to stop the initial spasms, but I can’t take more than one a day or I can’t have bowel movements.
But back to the pain in my abdomen. I started seeing an OB, and started taking birth control pills which make my stomach sour and I had a hard time keeping stuff down. After trying several brands, the doctor decided to do laparoscopic surgery. He found adhesions in the lower abdomen. But the pain still existed and at this point I was really frustrated with the doctor. I found a new OB, and we agreed to try Lupron injections. The injections put me into a temporary menopause, with hot flashes and night sweats. And I got depressed. I took additional medications for the night sweats and hot flashes, and started taking Zolof. The Zolof made my stomach sour and I really had a hard time eating. But the medications made me not really care. At this point, the injections were working pretty well. It gave me a break from the severe pain. After 6 months of injections, I came off them to see where I was. The doctor thought I might have endometriosis, but after coming off the injections the pain returned and I got myself a third opinion.
This time they did an ultrasound and found a cyst inside my ovary. So I went back to the second OB, and he went in and had to remove the ovary because the cyst was to big. I don’t know why I went back to him, I just did, but I went for a fourth opinion after the surgery. This OB put me back on the Lupron injections for 9 months. She wanted to prove to the insurance company that I needed a hysterectomy. It was me that wanted the hysterectomy. I was tired of the pain and the games. So, after that set of injections, I had my hysterectomy. That was April of 2005. I stopped taking all medications at this time. I wanted to see where body was at. I felt great at first, but my hormones were going crazy. For the first time in a long time I wanted to be intimate. I am sharing this to warn people why they should listen to their doctors. Nine days after surgery, I had intercourse. It was a very short engagement and everything seemed to be OK. I had stopped bleeding two days after surgery. Like I said my hormones had control of my head. I told my OB about this at my two week follow up and she was very upset, but after examining me, said everything was OK, and I was lucky. But I started to feel ill. I was still getting the night sweats and hot flashes although my OB said it wasn’t related to the female system- So I saw a Endocrinologist- no help there. Everything was normal. I was having problems with my heart and anxiety. I didn’t have any energy. About two months after surgery we tried to have intercourse again and it was so painful. I started bleeding and did NOT want to go to the ER to be told it was nothing. But after hours of unbearable pain, I went and they sent me home with pain killers and no answers. So I went to the OB again and she said I had a lesion. She put the silver nitrate on it a few times and it went away. But I still felt like crap. And I did until late August. I went to my primary care on a Thursday to discuss me feeling like crap. I also explained to him that I was starting to lose weight and that I knew something was wrong. He told me I needed psych. Help. OK. So, I left.
The pain got worse over the week end, and by Monday I couldn’t walk. I went back to my primary cares office and the nurse did a female examine. At this point I was discharging some funky stuff. The nurse said my cervix was infected. UMMMM, I don’t have a cervix. So, I had to go see the OB, and then found myself being scheduled for emergency surgery. After surgery, I found myself with a tube coming out of my privates. They said I had an abscess that had grown in place of where my cervix had been and attached itself to my bowels and the whole thing was pushing its way out. So, I had to go in every couple of days to have this balloon drained, and a few weeks later it was removed. It was in there to keep my bowels from falling out. GROSS! Now, it could have been me that caused this abscess, tests show it had been there since my hysterectomy, so no one will ever know. However, if this doctor had just listened to me, things would of not gotten like that. So, I got a new doctor, and she is honest enough with me to say that my case is to complex for her and has referred me to EVMS- local medical school. I still have abdominal pain and can not take birth control pills because of my heart.
And that is another story. Ok, so when I was born I was diagnosed with mild Aortic Stenosis. Over the years I have outgrown it, or at least they could never find any symptoms to support it. I did good growing up, didn’t cause any problems. I want to say it was around the time I started using birth control pills, my heart started skipping beats. I could feel it, but not all the time. And of course when I saw a heart doctor, it was perfect and didn’t skip once. Over time it got worse, but never did it at the doctor’s office. Finally I got a Holter monitor, and they caught them. Meeting with probably the tenth cardio. I had seen, she told me they were normal PVC’s and we could try beta-blockers. And I did, but I have low blood pressure and they made me feel tired and sleepy. After months of this battle, she told me one day to pick my poison. What? Either I take the beta-blockers and deal with the ickies or don’t take them and deal with the crazy heart beats. HUM? I choose another opinion. The new cardio. Referred me to an electro. Cardio. Doctor and he set me up for a heart Cath. and Ablation. It showed that I have two nerves? Connecting the top and bottom part of my heart that aren’t suppose to be there. He got most of one, but I was awake for the procedure and after 5 hours of being strapped to the table, laying on a blow-up doughnut that kept deflating, and everything else. I couldn’t take the pain anymore. My tailbone sticks out so far it is impossible to lay flat on my back. But at least I know I am not crazy now. It is amazing how some doctors can make you feel so alone. Are they not human themselves? However, I’m in good hands with this one. He is the one that has diagnosed me with Dysautonomia.
Now, this Doctor is not an expert in this field and I understand that. But what he has given me to read and what I find on the internet hits home. We both think I have always had this, my early heart problems and my IBS are proof of that. We think it was the cycle of injections that triggered the state I am in now. It was the change in hormones. I was lucky to find someone who listened. I still have a lot going on, but at least I know I am not alone and I know what is wrong with me, I have a form of Dysautonomia. Life has changed for me so much. This is not what I wanted, but it was the hand I was dealt. I have yet to figure out why. They say you are not given what you can’t handle- but, for real, how much is enough. I find myself on the couch most days. What little energy I conserve goes into the kids. Some days I sleep, and there are very few days I feel normal, but they do happen. I don’t take these days for granted! I get dizzy standing up, and get bored always sitting still. Eating is a chore- it wears me out, I have lost so much weight. ( but I am working very hard to maintain it.) I get white spots on my legs when I stand or sit in a chair- and no reason why? My mind plays tricks on me, I can never remember where I put the keys or where I was two weeks ago. But I can remember childhood like it was yesterday. I have to write everything down, sometimes twice. I get out of breathe quickly, gasping for air as if I had just got done running a marathon. I get headaches, body aches and mind aches. I am so tired of being sick. This life is not what I had planned on, and I am still in the process of accepting it. I started college, worked full time and had a great life planned out. I have been out of work for two years and had always hoped on going back. But now I am in the process of filing for disability. I have been denied once, they say because I can supervise my kids and wash my own butt, I can work. If they only knew how much time and hassle it is just to wash your own butt, they might get it. My kids are old enough to wash there own butts. I have a group filing for me, so I don’t have to deal with the stress. We filed for depression, seeing as the doctors have been saying that all along. The heart study was recent, and is included with my appeal, along with my new diagnoses. Time will tell.
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