Finally have a date

I finally have a date to get my Hystorectomy done, November 27. It's been quite an experience, but I have learned so much in the past few months.

I did have to switch and go see a 3rd genocologist, but at least I can finally get this problem taken care of. But in order for me to have the surgery the doctor wants me to have stents put in for both of my kidney's. I have chronic renal pelvis Distention with my right kidney, from UPJ obstruction.

I go to the urologist on Tuesday to discuss everything with him. I would prefer not to get them placed in, I don't have any problems on my left side and it could do something and cause damage, and I don't want to hurt constantly on both sides. I can understand the genocologist wanting to do this as a preventative. But my kidneys are function just fine. The pain I feel is from diastolic pressure and the intermitant hydroneuphrosis.

I know now in June when the second doctor found the hole in my uterus, it was from when I had the uterine biopsy done in November. I had uterine biopsies before and they never hurt like that one.

So basically I had a 18 cm posterior wall defect, and the 2nd doctor took pictures and there were no sharp edges, so he didn't perforate the wall when he did the hystoscopy. I understand there are always risks and things like this can happen. But I didn't even know I was bleeding internally into my abdomin when I was on my menstral cycle for 7 months.

In the 2nd Gynocologist post op report he stated that he thought the hold was congenital in origin, so I started searching online to find what could cause a persons uterus to get a hole like I did, and I couldn't believe I found a condition called Ehlers Danlos Syndrome, which is a connective tissue disorder. All of the lifetime of medical problems that my daughters and I had been diagnosed with we're listed, Neurocardiagentic Syncope, Posteral Othostatic Tachycardia, hyper joint mobility, Arnold Chairi Malformation among others. Right as soon as I found out about this link to everything I got an appointment at Cleveland Clinic genetic counseling, I had my first appointment Oct 30, they are testing first to see if I carry the same paracentric chromosone 11 inversion as one of my daughters have that. It will take 3 weeks to get that result back then move forward with the other testing for the connective tissue disorder, which for me seems to be problematic with smooth muscle, and potentially for the family mast cell activation.

While all this was happening I was still having the chronic pain in my right flank. And having IBS and constipation and tearing and bleeding from that. My lymph nodes in my throat are swollen all the time they don't hurt but I have constant ear aches from it.

I'm in constant pain all the time and I had found a treatment for the chronic renal pelvis distention because I dont want to take pain medications all the time, called spinal stimulation. So I asked my PCP to refer me to the pain managment clinic. They wanted to have me start taking Neurotin, to see if it would help with the pain, one urologist thought I was having neuropathic pain in my kidney. After my first visit a week later they called me and said that they wouldn't be able to see me as a patient any longer because I didn't divulge all the medications I was taking, because I had a very high moriphine reading it was in the 2000's, but the night before I had taken Tylenol with codiene. They even accused me of taking heroine. Which is something I never have done or would ever do.

I went to my pharmisist and asked him what could cause this, and he told me that codeine metabolizes to moriphine and I went back to pain managment and told them this information and they inturn verified that with Cleveland Clinic, and continued to see me as a patient. A few days later I started breaking out with all these sores inside my mouth, it was an allergic reaction to the neurotin. They then started me on topamax and that caused my arms to go numb and my hands, and it effected my taste of carbonated beverages. They then switched me to Zonigram and my eyes swelled. Then they tried having me take Amitriptyline and it made me have high blood pressure, and Orthostatic intolerance, I could hear my heart beat in my ears and I could feel my heartbeat behind my eyes. I still asked them about doing the spinal stimulator, because that's why I wanted to go there in the first place so I wouldn't need to take medication for chronic pain relief.

Pain Managment has treated me like I was a drug addict, they would only prescribe 16 tablets per month, although it was written take 1-2 tablets per day as needed. Even when I had my surgery to repair the hole in my uterus, they would not refill my medication because I had used my 16 tablets.

My tooth broke off the root of my tooth and my mouth swelled up. I always have had trouble with my teeth because when they were formed there was not enough enamel, didn't even get my first tooth until I was 2. Anytime I ever had to get any dental work done it would take 4-5 shots just to make it numb. Even when I had my first c-section the first shot didn't take. And after having c-section when they had me hooked up to the moriphine drip it was not effective, the doctor said it took 4 times the medication for someone my size.

In September I found information about ultra rapid metabolizer and there is a defect in an enzyme, cytochrome P450, which play a role in metabolism of opiates and other medications. I printed the sheet out and brought it into pain Managment and a few days later the nurse called back and said that they can't make a diagnosis off of a sheet that a patient brings in. I told her that I was concerned that I don't really know what exactly the medications are doing to my body, and if they could run the test to see if there was the defect in that enzyme. She told me that I didn't have any medical evidence to support or warrant that. Which I responded and told her we have that very first urine test with the very high moriphine reading.

I can't wait to get the Hystorectomy done, I am bleeding so heavily every 2 weeks and I am anemic from that.