12 July 2007

My story... in a very large nutshell

I don't care... I'm going to talk about it

I know there's a lot of people that don't like to talk about "women's issues". It makes them squirm as they frantically search for an opportunity to change the subject. That's probably the reason why I'd never heard of endometriosis before I was diagnosed in 2005. That's why so many women suffer from this disease in silence and/or ignorance. Well, guess what... I don't care. I'm going to talk about it!

A not-so-brief history of my life once I became "a woman"

I started menstruating at 14 1/2 years old and almost immediately suffered severe cramps. But since the other women in my family did too, I was told it was "normal".

As I aged into my 20's, my cycles got shorter and my flow got heavier. The pain was excruciating (often at a 9 or 10 on a scale of 1 to 10). I learned large doses of ibuprofen would dull the pain enough that I could rock myself into a fitful sleep and just sleep the pain away. Needless to say, I did a lot of sleeping every month.

By my late 20's, I was beginning to have odd pain in my right shin bone that would radiate through my leg. I went to see my general practitioner about that. Lots of tests were run, but no conclusive diagnosis could be reached. On the advice of my GP, I went to see an OB/GYN who diagnosed me with severe PMS and put me on birth control pills.

I got married in my early 30's. We immediately started trying to get pregnant so I went off the birth control pills. Year after year went by with no success. In the meantime, I was having increasing pressure in my lower abdomen and pelvic region in addition to the intense pain with my periods. There were days I couldn't stand up straight.

During the rest of the month, I felt like my uterus was blowing up like a slowly inflating balloon. My former OB/GYN had left her practice, so I went to another one who told me I couldn't possibly be feeling the sensations I was describing. She inferred that I was imagining things and wanted to put me on birth control again. Not helpful. That was the first and last time I saw her.

I persevered on knowing I wasn't imagining things but was at a loss for answers.

In 2003 (just before our 5th wedding anniversary) we got our fondest wish--a positive pregnancy test. All the blood tests and doctor's appointments were scheduled. I was excited because I was going to finally get the OB/GYN who had a stellar reputation in our community--such a reputation, in fact, that she only took patients with a positive pregnancy test.

My first blood tests showed my progesterone levels as extremely low so I was immediately prescribed progesterone cream to prevent losing the pregnancy and was classified as a "high risk pregnancy".

When it came time for the first ultrasound (something we had envisioned as being a wonderful bonding experience with us getting to see the heartbeat for the first time), my doctor was out of the office so it had to be performed by one of her colleagues. He noted that my uterus had a weird shadow on it, and he couldn't find a heartbeat this early. He mumbled that I must have miscalculated how far along I was. *sigh*

A second ultrasound with my own doctor went even worse than the first with her using insensitive language right off the bat. Just a note to anyone who cares, phrases like, "Well, this may not be a viable pregnancy..." aren't very good bedside manners when dealing with a high-risk pregnancy and a couple that has only been able to get pregnant once in 5 years.

I made an appointment with another doctor for a second opinion.

Before even seeing me, the second doctor ordered another ultrasound (this one performed by an ultrasound tech at an imaging facility). I wasn't going to get the results until I met with my doctor at our first visit. The day before my scheduled appointment at 13 weeks along, I started showing signs that I was having a miscarriage. A phone call to the doctor's office resulted in the advice, "Since she has an appointment tomorrow, just have her keep that appointment and we'll see her then." I miscarried at home--painfully and traumatically. The next day I went to my appointment. No one had noted on my file that we'd called to say I was miscarrying. So in the midst of hormonal chaos I had to explain repeatedly that I'd lost the pregnancy the day before to every disinterested member of the office staff.

The doctor saw me. She said I was fine. She didn't like the progesterone cream I'd been put on because it was a brand from Europe and a name she didn't know. She thought that may have contributed to the loss of the pregnancy. She ended our appointment with, "You can start trying again in 6 weeks."

I never had another positive pregnancy test again.

I don't care... I'm going to talk about diarrhea too

In the spring of 2005, I began to have digestive problems (that's code for "diarrhea"). The issues got progressively worse. I went to my OB/GYN with my concerns, because my Grammy (maternal grandmother) died from ovarian cancer. I wasn't going to mess around anymore. This was too serious to be dismissed again. I forced the issue by telling her that my symptoms were too much like my Grammy's were prior to her ovarian cancer diagnosis. My doctor ordered a full ultrasound.

The first ultrasound revealed that I had an ovarian cyst. Finally! Something someone else could see that didn't belong there! Hallelujah! I wasn't crazy!

My doc put me on a month of hormone therapy (birth control pills) to see if the cyst would shrink. After a month, another ultrasound was ordered. The second ultrasound revealed that the cyst hadn't shrunk... it had grown! It was now the size of a racquetball. The ultrasound also found a second odd-shaped oblong cyst (cysts are usually round). That one was the size of a Snickers bar and completely baffled my doctor.

The Halloween that changed my life

By October (a month after my 39th birthday), it became clear that I would have to have surgery to have the cysts removed. Laparoscopic out-patient surgery was scheduled for the morning of Halloween 2005. I was going to spend Halloween "under the knife"--kind of ghoulishly appropriate, I thought.

Three days before my surgery, I met with my doc for my last pre-op appointment. I asked her how likely it would be that the cysts would came back. She said it was highly likely. Out of the blue I asked, "Wouldn't it be best to remove my ovaries completely because of the history of ovarian cancer in my family?" She was stunned, took a second to regroup, and then advised me that if I chose that route, I should have a full hysterectomy so I wouldn't be at risk for uterine cancer (apparently, risk increases when the progesterone levels drop after ovary removal). I felt strongly that a full hysterectomy was the right way to go. She was still a bit stunned (so was my husband who was also at the appointment). My doc made some phone calls and scheduled the operating room necessary for the more involved surgical procedure. Instead of an out-patient surgery, I would be in the hospital for 5 days. But the surgery was still planned for Halloween.

Interestingly, when the surgery happened only a couple of days later it was very fortuitous that the operating room had been set up for a full hysterectomy. Here's why...

Once inside me, my doctor discovered that my reproductive organs were encased in adhesions (scar tissue). She immediately suspected endometriosis. Since endometriosis cannot be detected via ultrasound this was quite the "surprise". My uterus, fallopian tubes, and ovaries had become one mass encased in gnarled scar tissue. And the whole mass had adhered to the outside of my colon (hence, my digestive problems I'd been having). Scar tissue also encased my ureters (the small tubes leading from the kidneys to the bladder). The ovarian cysts that were detected via ultrasound were also due to endometriosis. My doc determined that I had at least 20+ years worth of damage from the disease that had gone undiagnosed all these years despite my pleas to at least 3 other doctors that I felt something was wrong.

Needless to say, surgery went twice as long it should have in order for my doc to remove as much as possible in the limited time she had. Blood transfusions in my blood type were unavailable so she had to do as much work as she could before I was in danger of bleeding out. She spent most of her time carefully removing the mass that was adhered to my colon without jeopardizing my colon. Although she had planned on a total hysterectomy (removal of uterus, ovaries, fallopian tubes and cervix), she chose to leave my cervix because the surrounding scar tissue was so bad she didn't want to run the risk of cutting my ureters.

I came out of surgery anemic and pale from loss of blood. My husband tried not to react when he saw me in post-op. He mentioned I was very pale. In my groggy state I said, "I decided to dress up as a ghost for Halloween." That's me... always trying to find something funny in every situation.

When I was told about what my doctor found and that biopsies had been sent to the lab to confirm it was endometriosis, my silent response was, "What's endometriosis?" In the days I spent in the hospital, my husband and I looked up everything we could find on the internet about endometriosis.

My surgical recovery went very well. In fact, I felt better 5 days after the surgery than I had felt just a week prior to surgery--that's how bad I felt before surgery.

After about 6 weeks of post-op recovery, I felt like I'd stepped into a whole new life that was finally free from the mysterious pain that had plagued me since I was 15 years old. I started to call my surgery my "Halloween Hysterectomy" and it became the milestone that I measured where my old life ended and my new life began.

My doctor told me I couldn't take any hormone replacement therapy (HRT) because if there were any rogue endometriosis cells left in my abdomen, they would continue to feed off any estrogen in my body and go through the monthly cycle that the tissue of the uterine lining does. The internal bleeding and subsequent scarring would come back along with the pain. They'd wreak havoc on my body again. She also strongly advised me to lose weight with the reasoning that because body fat produces estrogen it could also increase my risk of recurrence.

Over the next 6-8 months as my body healed from the surgery, I realized that I never wanted to go back to that place that I had been in for 20+ years--"Endometriosis Hell".

Because of my doctor's advice, I mistakenly thought I was the sole deciding factor as to whether or not my endometriosis would come back. I didn't understand that I had a disease that has no real remedy except removing all the endometriosis (something my doctor hadn't been able to do). I also didn't know that regardless of whether I had ovaries or body fat pushing any hormones through my veins, the insidious endometriosis implants (what the rogue cells are called) have their own "life support systems" that they can feed off of to grow and wreak havoc.

I found WeightWatchers and embarked on a journey of educating myself about nutrition and how to eat for wellness. Initially, I lost 45 pounds and kept it off until the end of 2007. Then slowly, my body started to revolt against my efforts. Despite the significant lifestyle changes I had made, my health started to deteriorate again. In spring 2010 (almost 5 years since my surgery), my digestive issues were back. I felt the same sensation of feeling like a slowly inflating balloon was in my lower abdomen. My reprieve hadn't seemed to last very long.

Except one thing was very different this time around... I knew what I was fighting, and I knew the enemy. It has a name. I could face all of it head on as long as I knew. That is where my story began again...

Follow the story of my second surgery chronologically by going to the links above in the sidebar at right -->


Lynda Lehmann said...

Sounds like you have been through an awful lot, Cindy. I hope the worst is behind you, and that you'll never be in the throes of endo again.

And, even though I have had a problem with it only lately, I can see how difficult it is to lose weight and keep it off.

I wish you luck and resolve to stay with a healthy lifestyle and weight, as a hedge against getting any significant endometriosis in the future!

tina said...

My sister recently underwent the same thing. She is very happy it is behind her now. I hear the same thing over and over again.

Joanie said...

Does this mean that your endometriosis (BTW not even spell check knows about endometriosis!) is back? Does this mean more surgery? I CAN'T like this!

Mom and Dad said...

Oh, Cindy. You had told us about your problems, but somehow I didn't understand all of it until tonight when I read on your blog. And I'm not sure how much I really understand now -- I can HEAR it, READ it, but do I really understand?
Cindy, I am B+. If that is ever of any used to you in the future, please do not hesitate to let me know!
Love you, Auntie

PS: The answer to Joanie's question is . . .??

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