My recent surgery in Atlanta

I have been dealing with leg pain for awhile now along with low back pain from my endometriosis. I have done chiropractic care, physical therapy, and yoga with little result. My dad helped me out by taking me to my PT appointments and then watching the children twice a week for 3 months. I think that I have lost friends due to the pain because I couldn't drive to see them and was focused on trying to get me better. I had been in tears due to the constant pain I was in some days.

I gathered up my records and sent them to Atlanta to Dr. Albee at the CEC again after having my 7 hour surgery done by him in 2008. He is an angel. He did my 4th surgery on August 3rd lasting a few hours. He excised the endo on my diaphragm, took out the remaining portion of my right ovary due to the hemorrhagic cyst on it, and lysed the few adhesions that I had. Dr. Albee said that I was at Stage 2 (see http://www.health.am/images/uploads-gyneco/21-3.php for some details on the staging of endo).

I am quite sore. It hurts to take a deep breath in at times. My right side hurts to the touch. I haven't been able to sleep through the night yet due to my pain. I have incisional pain at my belly button and it isn't due to an infection.

Due to the surgical menopause that I find myself now in, I'm on estrogen patches. I cry over the loss of my organs. I cry due to the pain I'm in. I cry that I had to fight with my obgyn's office in order for me to be seen post op--they didn't want to see me as the surgeon does the post op visit and they didn't do the surgery but once I brought up Dr. Albee's name, the name of his group practice, and my willingness to give the nurse his phone #, I got my appointment for August 26th. I cry because of the possible loss of friends again this damn disease might have caused.

I am so so so thankful that I have a supportive husband who used up most of his vacation this year on me, family members who care, and friends who have stuck by me.

Gotta go back to resting. Jeff heads back to work tomorrow morning and I'm certainly not ready for that just yet.

Tailbone pain

Okay I know that there is a medical term for it but I have been having tailbone pain that is unrelenting. I do my PT exercises and it doesn't help. I rest it and that doesn't help. I do yoga and that helps a small percentage of the time. It's worse as the day progresses. I'm fighting with everything that I can but the fight has been going on so long and it's tiring at times.

I'm waiting for 2 doctors to send me their notes from our visits and then I need to write up a narrative and send everything I have off to Dr. Albee. I'm scared to have another surgery but I know that it's needed. I really dislike the preps for it and how they make me feel so weak and with a headache.

~Jen

Doctors and More Doctors

Well I'm trying not to get too aggravated with the medical community but it's difficult. I have back pain that 3 months' of PT going twice a week didn't help. I also noticed last year that I have right leg pain that is cyclical. It occurs every three weeks...sound like something we women get each month right?? Try telling that to my doctors and feeling pretty well rejected.

My physical therapist suggested a spinal specialist and I saw him in late December. He doesn't think that my back pain is coming from my back at all. Of course that begs the question "Where is the pain coming from?". He suggested seeing another doctor who loves challenging cases and I'm definitely one of those. This other doctor is a physical medicine and rehabilitation doctor. Okay I'm game to see what he has to say.

My primary care doctor has basically dropped me. My obgyn doesn't want to deal with me as the back and leg pain aren't obgyn related. My physical therapist let me go but it's with the understanding that I can come back if I find it necessary to do so.

I've been screaming for help and most of the medical community isn't willing to listen. My primary care doc has been alright but not the greatest...my obgyn is not the doc that I want but I can't have her as she is retired and my other choice is too far away in Atlanta.

I had a nerve test earlier this week to check to see if the nerves are causing any problems for me. It's called a upper extremity and lower extremity SEP (somatosensory evoked potential) I don't want to go through that again it hurt my right hand and my feet for 2 days. I had trouble sleeping that first night. My hand still is having trouble and my legs feel like I've pulled a few muscles in it. The pain from it drove me nuts!!! I won't get the results from it for at least 5-10 days so you'll have to wait.

I also was advised to find a rheumatologist to look at my hands as they are red. So I'm on the hunt for a rheumatologist now.

My guess, of course, is that it's endo related. I'm not thrilled to be speculating that it's endo since that means a trip to Atlanta for surgery. But I already know who I want surgery with...

~Jen

A List of My Complaints September 2010

Okay I'm compiling a list of my complaints with having endometriosis:

(1) losing friends that you thought were your friends for life
(2) people not understanding (or their unwillingness to understand) what endometriosis does to me
(3) being able to do something one day but not the next
(4) doctors and nurses who don't listen to you
(5) doctors who are so popular that you don't get in to see them for 3 1/2 months
(5) difficulty in deciding if the pain that I'm experiencing is endo pain or something else

I'm done with my list for now...I reserve the right to add to it at any time

When you lose a loved one....

I haven't had the chance to post lately and I'm sorry for that.

Recently I lost a first cousin of mine on my mother's side. He along with 2 other older first cousins I considered to be like older brothers to me. He died so suddenly and way too young. He had a huge heart, full of smiles and laughter. While I was in high school, he graduated from college and I got to see him graduate and check out the college while I was there. I ended up not going to that college but someplace closer but was thankful to see him graduate. Later on while I was in college, my roommate at the time couldn't go to a concert with me so I asked him if he wanted to go. His response was yes and that he would pick me up and drop me back off again.

When I was little we had Christmas Day dinner at his parents' home and all of my cousins were there. It was so nice to have love and support that one needs from family members.

In honor of my cousin, Kurt. Love you and miss you always...

Back to something familiar...

Well I'm gathering my medical records again for possible surgical review. I'm not happy about this prospect...I hate bowel preps, I hate surgery, I hate feeling horrible afterwards...but I need some questions about my problems/symptoms answered.

One year from my last surgery

I still have pain with ovulation that keeps me down and out for a few days. I still have back pain that I think might be fibro but I'm not sure. I still have some pain that radiates down my legs but in a new spot. I wish that I had some hormonal support some days with some progesterone cream. I wish that I wasn't so emotional about things.

I still mourn my losses. I didn't want to lose what I had lost. I had resigned myself before my surgery with Dr. Albee that I would lose my left ovary. I went into that surgery having my period and came out without my uterus, cervix and part of my vagina to give me pain relief. While yes I do have pain relief from it, my fibro pain has increased due to my lack of quality sleep.

I'm having trouble with digesting milk products but not all of the time. My insomnia is worse now than 6 months ago...I'm up until 2 am most nights and I wasn't up this late on a regular basis even in college!!

I feel different about things. Something which I have difficulty explaining to even myself. I still feel like an "it" and not a woman. I don't feel sexy and have no drive. Sex still causes pain but not during. And I bloat up afterwards for a few days.

I don't feel "whole". Funny how having some organs make you feel like a woman. And unlike some others who have had hysts, I miss my periods. But like the other woman, I don't miss the pain that they caused.