Jun 13, 2010
My relationship with Medhelp goes WAY back... it's been a long time. I've met so many wonderful people through this site. I still call the Ovarian Cancer Patient-to-Patient forum my home since this is where I surfaced years ago after trying to find a place where I could share my story with others.
In March of 2000, at age 47, I was having serious pain in my pelvis. I had to go in for frequent paps so I mentioned my concerns to my doctor who seemed less than concerned. Two years prior to this I'd had surgery for Severe Cervical Dysplasia not related to HPV (keep getting those PAP smears).... I wonder in retrospect if the doctor thought I was overreacting to the pain since the Diagnosis for the Cervical dysplasia came as such a surprise and was a big shock to her (her words). In April of 2000, the pain got so bad one night (was it ovary pain or appendicitis?) that I called my doctor (an OB/GYN) and she suggested an ultrasound, so I scheduled one for the next day.
The tech said she saw two cysts on my right ovary and pointed them out. She said the doctor would be calling me after the final results came back. The doctor's nurse called to tell me everything was 'fine.' As she was hanging up, I said, "But the tech saw two cysts!?"
The nurse said, "Well, yes, you have two cysts, but you're fine."
I said, "Well, why am I in such pain still?"
The nurse said, "Oh, um, well, if you're in that much pain, you should call the doctor."
I credit that tech for more than I can ever say. I also switched doctors. For those who have it in their minds that only a female doctor is the way to go, I will say that I think it is a matter of personality and competence and not gender when you're selecting a doctor. In my case, the female doctor was brushing me off. I switched to a male doctor who agreed with me, stating "The cyst is not big enough to be too worried about but it is not small enough to ignore. Let's watch it." Finally. someone was listening to me.
In August of 2000 I scheduled surgery for a tubal ligation, but I knew the doctor also planned on doing a coposcopy for another bad pap smear result, a check for endometriosis, and also a check on that pesky cyst. Oh, and we laughed, he was going to do the tubal. I sometimes call this whole thing "Exploratory surgery" and I am thankful that I made the decision to get the tubal or I am not sure what the future would have looked like.
Two days later the doctor called me to tell me that malignant cells were found in the cyst that he drained and that he'd already scheduled an appointment for me with one of the top docs (OB/GYN Oncologist) in the state and that I was to see her the next week. All I said in response to this was, "I knew something was wrong."
A month later, I had a complete hysterectomy... they took everything. I was told later that they used the "Sledgehammer approach" on me and that maybe they could have left a few organs, but at the time the conservative approach was probably best for me. I appreciated the honesty.
In my case no other cancer was found. It was probably one of the earliest of any diagnosis and at this point, the cancer cells extracted during a fine needle aspiration were in the trash. It took some time for Sloan Kettering to make a decision, but after viewing all of my information there was talk of endometrioma or an early stage of epithelial cancer of the ovary. The path report was studied extensively, but the cancer cells were thrown out and also since there was not more cancer to stage, etc., I was not given a final diagnosis of Ovarian Cancer, but at the same time, the surgery was deemed completely necessary.
The hormone nightmare started a few months later... along with horrific pain from surgical adhesions. For hormone care I currently use the recommendations advised by Dr. Elizabeth Lee Vliet "Screaming to be Heard." And, I found an awesome doctor who helps me out with this protocol. This had NOT been an easy road. And, say as I do (LOUDLY) that you must advocate for yourself (to the medical community) I KNOW it is not easy. It's been a bumpy journey for me.
*****Dr. Vliet's books can be found on Amazon.******* This is the best place as far as I'm concerned, to find her work all in one place. If you google her name, her website should come up, too.
The help I received for surgical adhesions was much more solid and permanent. I wrote about how I got help here in one of my journals (as well as on the health pages on the Ovarian Cancer forum).
I don't write much anymore about the hormone topic mainly because it is so incredibly complicated, controversial, and so extremely time-consuming (for me) that I would have had to quit my full time job as a teacher if I were to continue writing on the forums. I never found a way to avoid the big picture and the little picture when answering a hormone question... and by the time I was done, I'd practically written a book and I could see by a person's question that I'd missed something. I never felt my responses were final, but at some point I had to face reality and realize I could not continue to respond adequately. Then I'd feel guilty about not responding more fully. Before I knew it, it would be 1 in the morning with a 5:30 a.m. wake up call.... I was frustrated and I felt I was leaving others frustrated, too. So, I pulled back from the forums.
I still visit occasionally, however.. and I keep in touch with my Medhelp friends. I love my Medhelp friends and I am continually amazed at the close friendships that can be made over the Internet. It astounds me. Perhaps this is also why it is sometimes so hard to visit the forum since Ovarian cancer has taken the lives of some of my friends and continues to bully others.
For those who know of my love for our sweet Golden Retrievers, Maya and Maddie, both have passed on... Maya in August, 2008 from cancer, and Maddie, in Sept., 2009 from a nerve disorder. I still miss them more than I can say. I have warm, furry memories of them and I know that they both had wonderful, long lives... and that they were very much loved.
My husband and I celebrate our 30th anniversary tomorrow, June 14, 2010. I cannot believe it. Where did the time go? We have one child, a 24 year old daughter, who is coming for dinner tonight. Sweet.
That's it for my history and my update. I wish the best to everyone... I'll always have a warm spot in my heart for this place...