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Update, June 13, 2010

Jun 13, 2010 - 3 comments


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."

HUH???

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...

Mary


Surgical Adhesions

May 01, 2009 - 6 comments
Tags:

adhesions



I had no idea how painful adhesions are! I am very grateful I found this technique. Check with your doctor to make sure you can/should do this type of intense abdominal massage.
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This is a bit difficult to explain, but I am thinking it would be helpful to copy this information and read it while comfortable so you can try to visualize the whole thing.

I am sure there might be others with a bit of a different technique, but I did not order anything special to do this exercise...just followed the lead of the exercise teacher who was helping me.

The exercise teacher had just taken a course from a woman named Umana and she is from Russia..she developed a program called Body logic. You could google the names to find information about Umana and her program, but, again, I did not order anything over the Internet, but I found her website interesting.



I mean, I felt like Superman lying on this ball...as if trying to fly!

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I put updated information at the bottom of this page, verifying that this really did work (for me at least!)....hoping this helps.

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The woman who taught me how to do this is an Exercise Instructor. She said that one reason she wanted to learn this technique was so that she could teach elderly people how to do it since some of our insides "glue together" as we age and that this releases much of the gluing because of all the blood, thus oxygen, it brings to the area.

In my case, I had a total hysterectomy in 2000 and suffered from surgical adhesions for over a year. The pain from the adhesions started about three months post-op. I did not find out about this technique until a year and a half after the pain from the adhesions started. This special massage seems to break up the adhesions and it worked for me.  I figured that if it worked for adhesions that formed naturally in our body, it should work for surgical adhesions. It did!

It is truly amazing. I noticed a HUGE difference immediately. When I sat up after the fist time I did this (about a 15 min. session) I could feel a "FLOOD" or a Rush of blood or something! going to that area. After having (pelvic area) pain about 40 times an HOUR for over a year and a half after my surgery, my pain decreased to only about 10 times a DAY for a few seconds at a time. I did this procedure again about a week after the first session and that gave me even more relief. I think it was about four months until I had to do it again. Eventually I did not need to do this at all. My pain (and adhesions.... see notes below) eventually subsided totally.

The idea is you want to get the blood to the bone, not just the muscle....so it floods the tendons and gets lots of oxygen there to start healing and breaking up the adhesions.

**My instructor told me to think of a steak and how the tendon is sort of splotchy with blood where it is attached to the bone...well, you want to get the blood totally to the bone so as to really break things up. Regular massage is not "deep" enough.


The ball I used measures 16 inches. Again, though, I did not get the ball thru the website (Bodylogic) but you can go there and check it out if you want. The website is all about body rolling and about the woman who developed the technique.
I got just an ordinary ball in a toy section at Target and it looked similar to the one my exercise instructor used when she was teaching me how to do this. The ball I have has a picture of Blues Clues on it!  Hey, it works. It probably is bigger than the ones they recommend, but, if you think about it, it is squishy to the point where once all my weight is on it, it probably shrinks down to about ten inches. And, I just put my "front" onto the ball for the pelvic area pain and NEVER on my back.

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Here is how I did it...leaning my body weight into it, literally placing the ball underneath me starting on the pubic bone and "rolling" on the ball...slowly.

I would lay on the pubic bone and just stay there for a few minutes... trying to put as much weight on the ball as possible (hard to do  and you feel like Superman lying on a table trying to fly...does that make sense?) and then take about four minutes or so to SLOWLY (while remembering to take deep breaths now and then) work my way out to the right side where the ovary once was on that side. After you get there, go back slowly to the pubic bone...breathe deeply. When you get to the pubic bone again, then go to the other side, following a path, if you will, of where you imagine the fallopian tube once was. So, you are rolling in something like a "V" formation. After you get to the left side where the ovary once was, then go back to the pubic bone...and, you are done. But, take about 15 minutes to do the whole procedure. You only need to make a V formation path once... taking time to do it well.

**********************Notes after a laparoscopy....August 2007***********************

At first I did this technique twice in two weeks. Then I had to do it about once every two months or so...then about once a year. When my doctor did a laparscopy on me in June,07 (hoping to find adhesions so we could figure out why I had been having pain, which turned out to be a ruptured disk) he was shocked at how "clean" my insides were. He said he actually consulted another doctor about it. He said that you always see evidence of any type of abdominal surgery no matter how invasive (or not) the surgery. And, since I had such a huge surgery back in 2000, he expected to see some type of adhesion debris...but did not see anything. A great testimonial to Body rolling!


I always suggest checking with the doctor. I am not a doctor, just a person who was miserable from the pain of adhesions.

It does hurt a little while you are doing it, that is for sure, since you are initially pressing on the pubic bone with all the weight you can manage to put on the ball. And then you roll slowly to where the ovaries once were and yes, it is not the most pleasant feeling, but it is a "good hurt" if you know what I mean.

I have also used the type of Medicine ball that is "squishy." I bought one for the sake of weight training and for a just in case those nasty things return!

Take care and good luck!

Mary




Why I Am Here

Jul 08, 2008 - 7 comments

I never went through Chemo but after fine needle aspiration (in Aug of 2000) of an ovarian cyst during a Lap, I was Dx. positive for malignant cells consistent with Papillary Adenocarcinoma. It was confimed during a subseqent hysterectomy that the cyst was epithelial in origin for the cells and excluded origin of a corpus luteum cyst.  However, during the hysterectomy (Sept. 2000) no additional cancer was found, and so even though the surgery was warranted, I was left Without a final Dx.of Ovarian Cancer.

I am not sure why this all happened. But, it is one reason I found this site (MedHelp) back in 2004 was because I wanted to belong to a group of people who "got it".... I needed a safe place to process what happened to me... the "could have beens" and the advocacy I try to promote to all regarding their health care (I know this is easier said than done at times, too...). I also stay because I luckily found an awesome way of getting rid of surgical adhesions that just involves rolling a little ball (I know... I know...Health Pages.... I promise :))  and then there is the occasional hormonal comment from me....

For addtional information, including the name of the book that provided me with the most helpful hormone protocol which I follow to this day, check out my journal "Update."