Continued from Part 1.
So I'm no longer in horrific pain, I'll never have a menstrual cycle EVER again, the huge mass in my stomach is nothing to worry about .... what could possibly go wrong?
Well, it started with Dr. S explaining how she actually got the
pathology results a couple days ago but made them run it again. And just like that I knew she was about to say something that would turn my world upside down.
"Don't worry everything is ok, but you had precancerous cells in your uterus."
Huh?
Pre-WHAT???
It was definitely one of those moments when time seems to stand still. It was a mostly sunny day, my
kids were playing outside in the front yard, everything
was as it should be .... until all of a sudden it wasn't.
Dr. S must have read my mind because the next thing she said was how incredibly surprised she was, that she honestly thought she got the wrong person's results. I believe
her exact words were, "Even the pathologist was surprised, and
pathologists don't get surprised."
If both my OBGYN and the pathologist couldn't believe it, then you can only imagine how I was feeling.
Almost as worrisome as having "precancerous
cells" is the fact that I didn't have any of the risk factors or
symptoms. The actual medical term, which I couldn't remember and had to
look it up, is atypical endometrial hyperplasia. And it is
defined as:
".... unusual or excessive cell growth in the
inner glandular lining of the uterus. Most cases of endometrial
hyperplasia result from high levels of estrogen. This may occur in a number of settings, including
obesity and polycystic ovarian syndrome. Endometrial hyperplasia typically presents with abnormally heavy uterine
bleeding and is most common in women who are post-menopausal."
If anything I have low (not high) levels of
estrogen because of all the years of suppression. I'm not overweight and never have been. I did struggle (a lot) with
infertility but it wasn't because of my ovaries. I've never
experienced heavy bleeding, not even as a teenager. And my FSH levels
are normal so I'm definitely not post-menopausal.
My first thought was .... So if I don't have a single risk factor, how did this happen? And that was quickly followed by .... What if we hadn't done the surgery, would I have gotten cancer? Is it possible I have cancer cells in other parts of my body? Is it genetic and do I need to worry about my daughter having the same thing (let alone my mom)?
Dr. S then explained the stages of endometrial hyperplasia. Unfortunately the cells found in my uterus were the most serious and carried the highest risk (up to 35%) of developing into endometrial cancer.
The good news (YES, THERE IS GOOD NEWS!) is that in most cases the treatment is a full hysterectomy. Sure glad I just had one of those!
Not
that I'm taking even a fraction of the credit, but in that moment I knew my
persistence in pushing for surgery had more than paid off.
Even better news was when Dr. S sent the pathology to be re-tested, she made sure they checked
every tiny molecule of surrounding tissue, and there was absolutely no
evidence of precancerous cells anywhere else.
There's part of me that's still processing what all of this means, but for now I'm just going to be thankful.
Thankful for the circumstances that got me here, for being my own
advocate all of those years, for my health going forward, and for Dr. S
who may have just saved my life!
Sunday, March 10, 2013
Friday, March 8, 2013
13 words I never expected to hear (Part 1)
Yesterday afternoon I got a phone call from Dr. S. I hadn't talked to her since the day of my surgery so I was excited to tell her how good I was feeling, that I was already weaning myself off the pain meds, and was even up and about doing a few things.
My biggest complaint wasn't even related to my uterus being taken out or even the incision in my stomach. Instead it was the gas pain. I had a laparoscopy 7 years ago, also because of endometriosis, so I knew that during surgery they fill your abdomen with gas. Well, they call it "gas" but it's basically just air. Even so, when they fill your belly so full that you look 6 months pregnant, it's not very much fun. They do this for two reasons: so they can gently and safely move nearby organs out of the way, and so they have more space to see what they're doing and perform the procedure. Expelling the gas was more painful and taking longer that I remembered. Dr. S reassured me this was totally common and nothing to be worried about.
Then she said 13 words I never expected to hear.
But first, a little context ...
Dr. K had already called with his portion of the pathology results. As anticipated, the mass in my upper abdomen was a build up of endometrial tissue. While this was good news, it was also very unusual. By definition the endometrium is the innermost layer (the lining) of the uterus. So the fact that I had an endometrial mass so high up in abdomen, which was no where near my uterus, was very strange.
Let alone that it was significantly bigger than normal!
Most endometrial lesions are 1-3 millimeters, which is about the thickness of a quarter turned on its side.
By comparison, the mass from my abdomen was a little over 3 centimeters, which is the size of that same quarter plus half of another quarter laying flat.
It wasn't until Dr. K resected the mass that he realized it was also encased in an even larger hematoma. So not only did I had severe endometriosis, which was miserable enough on its own. But I also had this abnormally large ball of endometrial tissue that was covered like wrapping paper with a blood clot. (A blood clot that Dr. K aptly described as "the consistency of warm Nutella". YUCK!)
Although both the location and size of the mass were out of the norm, it was a relief to know the pathology was negative.
That relief, however, would be short lived.
To be continued ...
My biggest complaint wasn't even related to my uterus being taken out or even the incision in my stomach. Instead it was the gas pain. I had a laparoscopy 7 years ago, also because of endometriosis, so I knew that during surgery they fill your abdomen with gas. Well, they call it "gas" but it's basically just air. Even so, when they fill your belly so full that you look 6 months pregnant, it's not very much fun. They do this for two reasons: so they can gently and safely move nearby organs out of the way, and so they have more space to see what they're doing and perform the procedure. Expelling the gas was more painful and taking longer that I remembered. Dr. S reassured me this was totally common and nothing to be worried about.
Then she said 13 words I never expected to hear.
But first, a little context ...
Dr. K had already called with his portion of the pathology results. As anticipated, the mass in my upper abdomen was a build up of endometrial tissue. While this was good news, it was also very unusual. By definition the endometrium is the innermost layer (the lining) of the uterus. So the fact that I had an endometrial mass so high up in abdomen, which was no where near my uterus, was very strange.
Let alone that it was significantly bigger than normal!
Most endometrial lesions are 1-3 millimeters, which is about the thickness of a quarter turned on its side.
By comparison, the mass from my abdomen was a little over 3 centimeters, which is the size of that same quarter plus half of another quarter laying flat.
It wasn't until Dr. K resected the mass that he realized it was also encased in an even larger hematoma. So not only did I had severe endometriosis, which was miserable enough on its own. But I also had this abnormally large ball of endometrial tissue that was covered like wrapping paper with a blood clot. (A blood clot that Dr. K aptly described as "the consistency of warm Nutella". YUCK!)
Although both the location and size of the mass were out of the norm, it was a relief to know the pathology was negative.
That relief, however, would be short lived.
To be continued ...
Tuesday, March 5, 2013
Surgery (Part 2)
Continued from Part 1.
I met Dr. K, the general surgeon, on Thursday. While it definitely felt weird meeting him for the first time less than 24 hours before he'd be cutting into my stomach, he was really nice and explained exactly what he'd be doing. And he promised to make the incision as small as possible!
Dr. K would remove the mass first, and then Dr. S would perform the hysterectomy. A total hysterectomy is defined as the removal of both the uterus and cervix. Dr. S would also be removing both fallopian tubes and my right ovary. As long as there wasn't a significant amount endometriosis or scar tissue, she would leave my left ovary so I wouldn't have to do hormone replacement (and I REALLY didn't want to go down that road again).
The next thing I remember after being wheeled into the operating room was waking up to Billy and my dad watching golf on TV. I kept trying to talk to them but I was so groggy I couldn't even keep my eyes open. Another couple hours went by before I had an actual conversation with them. They were happy to tell me both surgeries went really well, and best of all, I still had my left ovary!
I was in surgery for a total of 3 hours and 15 minutes. While it took a little longer than expected to remove the mass, the hysterectomy went really quick. There actually wasn't a whole lot of endometriosis, which was quite remarkable given my history and symptoms.
Dr. S cauterized several small areas of endometriosis, but ran into some trouble when trying to remove a medium sized lesion on my right ureter. Without getting too technical, the ureters are long, narrow tubes that connect the kidneys to the bladder. After carefully trying to remove the lesion one layer at a time, Dr. S decided it was just too risky. We had talked about this type of scenario ahead of time, and we both agreed it wasn't worth compromising the functionality of a major organ. When I spoke with her on the phone the next day, I told her I thought she made the absolute right decision.
Billy left around 4:30pm so he could get home and eat dinner with the kids. About 20 minutes later the nurse came in and asked if I wanted to go for a walk (actually it was more of a request than a question). She gave me a walker and I shuffled along slowly.
My mom got there around 7:00pm and would stay with me until I was discharged the next day. I went for another walk around 11:00pm, without the walker this time, and that really wiped me out. I tried to sleep but one nurse or another kept coming in to check on me. At 5:30 the next morning, a nurse I hadn't seen before came in and said it was time to take out my catheter. As gross and unappealing as it might seem, the catheter was actually quite convenient and one less thing I had to worry about. I was told the earliest I'd be leaving the hospital would be early afternoon, so why did it have to be taken out right now?
My mom could tell I was anxious about taking it out and told the nurse that wasn't going to happen. I don't think the nurse was happy being told what to do, but oh well. After that I was able to sleep a little more. And later when I tried getting up to go for another walk, I almost fainted. So I wouldn't have been able to use the bathroom myself anyway. (Always trust your 'gut' instincts!)
After eating a few bites of cold eggs (hospital food is the WORST), I tried getting up again. Nope. I was starting to get upset because I really didn't want to stay another night. I rested and ate some Saltine crackers, but what I really wanted to do was go home. I knew I had to be able to walk on my own and go to the bathroom, and I was determined to do both.
Finally I was able to go for a walk without feeling like I was going to faint, so we called the nurse and she took the catheter out. Shortly after that I was able to use the bathroom on my own, and I even showered and got dressed.
I was discharged around 2:15pm and the kids were waiting for me as soon as we pulled in. I got snuggles from everyone and then it was time to lie back down and rest.
I met Dr. K, the general surgeon, on Thursday. While it definitely felt weird meeting him for the first time less than 24 hours before he'd be cutting into my stomach, he was really nice and explained exactly what he'd be doing. And he promised to make the incision as small as possible!
Dr. K would remove the mass first, and then Dr. S would perform the hysterectomy. A total hysterectomy is defined as the removal of both the uterus and cervix. Dr. S would also be removing both fallopian tubes and my right ovary. As long as there wasn't a significant amount endometriosis or scar tissue, she would leave my left ovary so I wouldn't have to do hormone replacement (and I REALLY didn't want to go down that road again).
The next thing I remember after being wheeled into the operating room was waking up to Billy and my dad watching golf on TV. I kept trying to talk to them but I was so groggy I couldn't even keep my eyes open. Another couple hours went by before I had an actual conversation with them. They were happy to tell me both surgeries went really well, and best of all, I still had my left ovary!
I was in surgery for a total of 3 hours and 15 minutes. While it took a little longer than expected to remove the mass, the hysterectomy went really quick. There actually wasn't a whole lot of endometriosis, which was quite remarkable given my history and symptoms.
Dr. S cauterized several small areas of endometriosis, but ran into some trouble when trying to remove a medium sized lesion on my right ureter. Without getting too technical, the ureters are long, narrow tubes that connect the kidneys to the bladder. After carefully trying to remove the lesion one layer at a time, Dr. S decided it was just too risky. We had talked about this type of scenario ahead of time, and we both agreed it wasn't worth compromising the functionality of a major organ. When I spoke with her on the phone the next day, I told her I thought she made the absolute right decision.
Billy left around 4:30pm so he could get home and eat dinner with the kids. About 20 minutes later the nurse came in and asked if I wanted to go for a walk (actually it was more of a request than a question). She gave me a walker and I shuffled along slowly.
My mom got there around 7:00pm and would stay with me until I was discharged the next day. I went for another walk around 11:00pm, without the walker this time, and that really wiped me out. I tried to sleep but one nurse or another kept coming in to check on me. At 5:30 the next morning, a nurse I hadn't seen before came in and said it was time to take out my catheter. As gross and unappealing as it might seem, the catheter was actually quite convenient and one less thing I had to worry about. I was told the earliest I'd be leaving the hospital would be early afternoon, so why did it have to be taken out right now?
My mom could tell I was anxious about taking it out and told the nurse that wasn't going to happen. I don't think the nurse was happy being told what to do, but oh well. After that I was able to sleep a little more. And later when I tried getting up to go for another walk, I almost fainted. So I wouldn't have been able to use the bathroom myself anyway. (Always trust your 'gut' instincts!)
After eating a few bites of cold eggs (hospital food is the WORST), I tried getting up again. Nope. I was starting to get upset because I really didn't want to stay another night. I rested and ate some Saltine crackers, but what I really wanted to do was go home. I knew I had to be able to walk on my own and go to the bathroom, and I was determined to do both.
Finally I was able to go for a walk without feeling like I was going to faint, so we called the nurse and she took the catheter out. Shortly after that I was able to use the bathroom on my own, and I even showered and got dressed.
I was discharged around 2:15pm and the kids were waiting for me as soon as we pulled in. I got snuggles from everyone and then it was time to lie back down and rest.
Saturday, March 2, 2013
Surgery (Part 1)
Surgery was yesterday. Or should I say surgerIES, plural!
I had the first surgery time slot of the day (7:30 am) but had to be there 2 hours early. Pre-op procedures and all. My dad and Billy took me to the hospital and would stay until I was out of recovery, then switch with my mom and she would stay the night with me.
My mom had the kids during the day since they have a standing playdate on Fridays. I wanted to keep things as "normal" as possible for the kid, but they still knew something was up. We had talked to them a lot about how Mommy had an "ouchy tummy" and was going to have surgery. I know everybody, including my kids, were anxious and excited for me to finally be healthy again (as in, not in horrific pain and completely bed ridden for weeks at a time).
I checked in, signed all the waivers, and got my wrist band. As we were waiting, I went over the kids' schedule with Billy for what seemed like the fifteenth time. Remember to take them to Pottery Barn Kids for Dr. Seuss story time, don't forget their goggles for swim class, make sure they eat their vitamins. Billy just rolled his eyes. I would be in the hospital for less than 2 days, plus he is a great dad and more than capable of taking care of the kids on his own. I think I just needed something else to focus on besides my own apprehension. (Was the surgery going to work? What were they going to find when they got in there? Would I be able to keep one ovary?).
A few minutes later the nurse called me back. In my previous surgery experiences, someone (usually just one person) was allowed to come with me. Not this time though. The nurse did say that Billy, and I assumed my dad too, could come see me before I got wheeled back.
Now I was officially nervous. Whenever I'm anxious or stressed, especially in social settings, I talk a lot. So in the short time it took to take my vitals, the nurse must have felt like we were new BFF's.
Then it was time to do the IV. Not usually a good experience for me, and as much as I wish I could say this time was different, it wasn't. I was already sweating just thinking about it.
They tried my left hand first. Then my my left wrist. Then my left hand again. I have small veins and they tend to roll, making it that much harder. A different nurse tried my right hand, then my right wrist, and finally ended up putting it in the crook of my arm. Not the most ideal placement - anesthesiologists prefer the IV be in a location as far away from the body as possible. But by this time it was 7:35 and we were running late. There was a lot of rushing around but the nurse let Billy come back really quick and give me a kiss. Then she gave me some "happy medicine" (Valium I think) and everything else is a bit blurry.
I consider myself somewhat of a pro when it comes to surgeries. I've had 5 major surgeries, plus several other procedures in which I was also put under anesthesia. As expected the operating room was cold, there was music playing lightly in the background, and lots of bright lights and people in blue scrubs. I remember saying something about it being a "girl party" since both my OBGYN surgeons were women, as were both anesthesiologists, and all of the nurses. The general surgeon was a man though, and he got there just as I was falling asleep.
Speaking of the general surgeon, he was a last minute addition. At my pre-op appointment on Monday I was in a lot of pain, even more than normal. Even with the suppression shot (which was supposed to prevent me from getting a menstrual cycle), I had such severe cramps I couldn't even stand up straight. When the nurse came to get me I was crouched in a chair. She was used to seeing me like this and gave me a sad smile, the same sad smile I'd seen so many times before. But this time it came with something I wasn't nearly as familiar with - a sense of "this will all be over soon enough"!!!!!
I could also see something else in her eyes: REASSURANCE. That this phase of my life would soon be over. That there would no more urgent phone calls to the advice nurse, frantic trips to the pharmacy to pick up pain meds, or being so incapacitated I miss out on activities with my kids and husband. That all of the pain and suffering was finally coming to an end.
Dr. S asked me to describe the pain. A description we were both all too familiar with - on the right side from my hip bone up to the middle of my rib cage. Same as always. There was something else though. A few days earlier I felt what I thought was a "lump" in my upper abdomen, also on the right side. She had me lie back and very gently pressed down. I gasped when she got directly on the spot. "What is THAT?" she asked, more to herself than me. I could tell she was surprised but all I could think was, please don't tell me have to delay the surgery - or even worse, cancel it altogether?
She very calmly told me I needed to get an ultrasound. Right away! I could tell she was trying not to freak me out - and if I hadn't been in so much pain I probably would have been. She told me she needed to be able to see exactly what it looked like and where it was located.
I wouldn't know any of this until the next day, but it ended up being quite large (about 3cm) and under the muscular wall in the right upper quadrant of my abdomen. We agreed it would definitely need to be removed. Thankfully Dr. S (and her seemingly endless supply of miracles!) was able to get a general surgeon to come on board at the last minute. The surgery was still a GO!
To be continued ...
I had the first surgery time slot of the day (7:30 am) but had to be there 2 hours early. Pre-op procedures and all. My dad and Billy took me to the hospital and would stay until I was out of recovery, then switch with my mom and she would stay the night with me.
My mom had the kids during the day since they have a standing playdate on Fridays. I wanted to keep things as "normal" as possible for the kid, but they still knew something was up. We had talked to them a lot about how Mommy had an "ouchy tummy" and was going to have surgery. I know everybody, including my kids, were anxious and excited for me to finally be healthy again (as in, not in horrific pain and completely bed ridden for weeks at a time).
I checked in, signed all the waivers, and got my wrist band. As we were waiting, I went over the kids' schedule with Billy for what seemed like the fifteenth time. Remember to take them to Pottery Barn Kids for Dr. Seuss story time, don't forget their goggles for swim class, make sure they eat their vitamins. Billy just rolled his eyes. I would be in the hospital for less than 2 days, plus he is a great dad and more than capable of taking care of the kids on his own. I think I just needed something else to focus on besides my own apprehension. (Was the surgery going to work? What were they going to find when they got in there? Would I be able to keep one ovary?).
A few minutes later the nurse called me back. In my previous surgery experiences, someone (usually just one person) was allowed to come with me. Not this time though. The nurse did say that Billy, and I assumed my dad too, could come see me before I got wheeled back.
Now I was officially nervous. Whenever I'm anxious or stressed, especially in social settings, I talk a lot. So in the short time it took to take my vitals, the nurse must have felt like we were new BFF's.
Then it was time to do the IV. Not usually a good experience for me, and as much as I wish I could say this time was different, it wasn't. I was already sweating just thinking about it.
They tried my left hand first. Then my my left wrist. Then my left hand again. I have small veins and they tend to roll, making it that much harder. A different nurse tried my right hand, then my right wrist, and finally ended up putting it in the crook of my arm. Not the most ideal placement - anesthesiologists prefer the IV be in a location as far away from the body as possible. But by this time it was 7:35 and we were running late. There was a lot of rushing around but the nurse let Billy come back really quick and give me a kiss. Then she gave me some "happy medicine" (Valium I think) and everything else is a bit blurry.
I consider myself somewhat of a pro when it comes to surgeries. I've had 5 major surgeries, plus several other procedures in which I was also put under anesthesia. As expected the operating room was cold, there was music playing lightly in the background, and lots of bright lights and people in blue scrubs. I remember saying something about it being a "girl party" since both my OBGYN surgeons were women, as were both anesthesiologists, and all of the nurses. The general surgeon was a man though, and he got there just as I was falling asleep.
Speaking of the general surgeon, he was a last minute addition. At my pre-op appointment on Monday I was in a lot of pain, even more than normal. Even with the suppression shot (which was supposed to prevent me from getting a menstrual cycle), I had such severe cramps I couldn't even stand up straight. When the nurse came to get me I was crouched in a chair. She was used to seeing me like this and gave me a sad smile, the same sad smile I'd seen so many times before. But this time it came with something I wasn't nearly as familiar with - a sense of "this will all be over soon enough"!!!!!
I could also see something else in her eyes: REASSURANCE. That this phase of my life would soon be over. That there would no more urgent phone calls to the advice nurse, frantic trips to the pharmacy to pick up pain meds, or being so incapacitated I miss out on activities with my kids and husband. That all of the pain and suffering was finally coming to an end.
Dr. S asked me to describe the pain. A description we were both all too familiar with - on the right side from my hip bone up to the middle of my rib cage. Same as always. There was something else though. A few days earlier I felt what I thought was a "lump" in my upper abdomen, also on the right side. She had me lie back and very gently pressed down. I gasped when she got directly on the spot. "What is THAT?" she asked, more to herself than me. I could tell she was surprised but all I could think was, please don't tell me have to delay the surgery - or even worse, cancel it altogether?
She very calmly told me I needed to get an ultrasound. Right away! I could tell she was trying not to freak me out - and if I hadn't been in so much pain I probably would have been. She told me she needed to be able to see exactly what it looked like and where it was located.
I wouldn't know any of this until the next day, but it ended up being quite large (about 3cm) and under the muscular wall in the right upper quadrant of my abdomen. We agreed it would definitely need to be removed. Thankfully Dr. S (and her seemingly endless supply of miracles!) was able to get a general surgeon to come on board at the last minute. The surgery was still a GO!
To be continued ...
Friday, January 25, 2013
Endometriosis and my breaking point
As with most things in this world, menstrual cramps and those of us who suffer from them were not created equal. Some (lucky) women don't even get them. I am definitely NOT one of those women.
Instead, I get cramps so bad I can't function for days on end. I'm talking pain-so-debilitating-not-even-heavy-narcotics-can-touch-it-agony-I-wouldn't-wish-upon-anyone-not-even-my-worst-enemy.
And no, I'm not exaggerating.
Ever since I was a teenager, I've struggled with painful menstrual cramps. But over the past year or so, they've gotten significantly worse. I can honestly say I've experienced a pain level of 10. And when it says "writhing agony", that is truly what it feels like.
I've passed out from the pain (and not just once). Thankfully someone has always been there to catch me (except one time in college my roommate found me on the bathroom floor and totally freaked out). I've been driving and had to pull over because the pain was so bad. I've been to the ER (several times). Just last month I was in the ER and after finding nothing else wrong with me - liver, kidney, gallbladder, and appendix all checked out fine - was finally given a shot of morphine. Only to discover that morphine doesn't really work for me, or at least it wears off much sooner than it's supposed to, despite the nurse insisting that "morphine works for everyone".
After being on some form of hormone therapy since I was 15, I decided enough was enough. No more pills, no more shots, no more blood draws, no more tests, no more waiting rooms, no more invasive procedures. This was in January 2011.
I had been on the pill (for pain management) since before I could drive. After getting married and finding out we probably weren't going to get pregnant the old fashioned way, we started seeing an infertility specialist. For anyone not familiar with reproductive medicine, it can seem like a big guessing game. What works for some women doesn't work for others. If a cycle ends in a BFN (big fat negative), sometimes the only "medical" advice you'll get is to just try again, which we did over and over. After more than 3 years, including 8 cycles of Chlomid and 4 cycles of IVF, my hormones (as well as my spirits) were a mess.
After the twins were born (via gestational carrier), my cramps were so bad again I could barely take care of them, I did 7 rounds of Lupron Depot. Lupron is an estrogen suppressant, so basically it "tricks" your body into thinking it's in menopause so you don't get a menstrual cycle. However, the price of NOT getting a menstrual cycle came with a whole list of things I DID get, including acne, hot flashes, weight gain, anxiety, and insomnia. After everything I had put my body through, I just wanted some time to do nothing. No hormone therapy of any kind.
After stopping the suppression shots, I didn't have a menstrual cycle for over a year. This was anticipated, but still ... Yipppeeeeee! And even after that, my cycles were sporadic (sometimes I'd go 6 weeks in between cycles, sometimes 2 weeks). For about 5 months, from July to October 2012, my cycles were every 28-32 days. At first I was excited, I had never experienced a legitimately "regular" (non-hormone induced) cycle. In the very back of my mind there was even a glimmer of hope that maybe I'd have less pain (or maybe, just maybe, I could even get pregnant on my own). But then my cycles were getting shorter and shorter. I had one that lasted 21 days, then 16 days, and then two cycles almost back-to-back. The LESS time I had in between the MORE I was in pain.
I'll never forget the Tuesday before Christmas, I was working and about half way through my shift I was so miserable I had to take half a Vicodin. By that evening I was in so much pain I couldn't eat or sleep. I spent the next 5 days almost completely bed ridden. When I did get up, I had to walk slumped over. I was taking pain pills every couple hours, and even that was barely taking the edge off. Christmas Day was a total blur.
The next day was more of the same. I called and got a same day appointment with Dr. W. She ordered blood work, she did an ultrasound in the office, and even referred me out for an x-ray. Everything was normal, which I guess was a relief, except I still didn't have a game plan for dealing with the pain.
By New Year's Eve I finally starting to feel better and I remember being so thankful that I could take my kids to the Zoo and not be doubled over in pain.
A couple days later, it started all over again. I think I had maybe been pain free for 3 days. Cramps and pain like I've never experienced. The pain never got below an 8, and hovered for days on end at a 9. I was mentally and physically at my breaking point.
Dysmenorrhea is the medical term for the cramping that occurs before and during a woman's menstrual cycle. For anyone with more than the normal amount of cramping, there's usually an underlying reason. For me, that reason is endometriosis.
Endometriosis is defined most simply as the presence of endometrial tissue outside the uterus. It's not supposed to be there, and from a medical perspective they actually aren't sure how or why. Making it even more of a mystery is the fact that you can't even confirm the existence of endometriosis without surgery, and (why yes, there's more) there isn't even a direct correlation to the more endometriosis there is the more pain you have. In other words, a woman can have a minuscule amount of endometriosis and a severe amount of pain, or a significant amount of endometriosis and very little pain. I happen to have both - a lot of endometriosis and a lot of pain. Still baffles me that we can create human life outside the human body but we don't know why tissue grows somewhere it's not supposed to and cause some women to suffer incredible pain.
There are theories, of course. The most common is that during menstruation some of the endometrial tissue backs up through the fallopian tubes and implants itself in the abdomen where it continues to grow. Another theory is that endometrial tissue is distributed from the uterus to other parts of the body through blood flow. Yet another theory is that it's genetic. In my case, a genetic predisposition is the most plausible explanation. My mom and maternal grandmother also had endometriosis and struggled to conceive. My parents were actually told by numerous doctors they would never be able to have children. When I came along 6 years later, one doctor actually told them I couldn't possibly be their child (not exactly what new parents want to hear upon having their "miracle" child).
The only definitive way to diagnose endometriosis is to perform a surgical procedure called a laparoscopy. Although my mom had all the symptoms, she didn't know for sure she had endometriosis until she had a hysterectomy at age 46. My grandmother had a hysterectomy even earlier at the age 38.
I actually had my first laparoscopy in November 2006 (after my first of two miscarriages) and I had so much endometrial tissue in my abdomen that it actually adhered to several surrounding organs, including my bowels, liver, and kidney. They were able to remove most of it, and the prognosis was that I should no longer have any problems getting (and staying) pregnant. Sadly that wasn't the case.
The one and only thing that can actually eliminate endometriosis altogether is a hysterectomy. A couple years ago I had proposed it to my previous OBGYN and he flat out refused. He claimed I was too young and still within child bearing years (never mind that despite all efforts I was still unable to get pregnant, had decided to use a gestational carrier, AND had 10 embryos still frozen from my past IVF cycles). Not too long after that we switched insurance carriers to Kaiser. My first appointment was with a midwife, and while I really liked her, she wasn't licensed to perform surgery. She did refer me to Dr. S and although her first available appointment wasn't for another 2 months, she was absolutely worth the wait.
I first met with Dr. S in July 2012. At that time we talked over my history and while she wasn't immediately opposed to a hysterectomy, she also wasn't willing to jump right in either. She wanted to run some tests and just get to know me. We talked at length over the course of several appointments and each time she made sure I understood that a hysterectomy was a permanent solution and there was no going back. We also talked about the possibility of leaving one ovary, even though I was fairly set on removing both. I think all along she wanted me to leave one ovary, but she never pushed me one way or the other. Not only are there cardiovascular and other risks associated with taking both ovaries, but I would also have to do hormone replacement - the exact thing I didn't want to do.
It wasn't until after back-to-back cycles in December and January, and she could actually see for herself how miserable I was, that she agreed to the hysterectomy. Surgery was schedule for March 1, 2013.
After one last discussion we decided to leave the left ovary, assuming it was clear of endometriosis and scar tissue. She would take my uterus, cervix, both fallopian tubes, and my right ovary. Surgery couldn't come soon enough.
More to come on the actual surgery, what happened just a few days before, and my recovery.
"As a disease, endometriosis can take away many additional aspects of a normal life. Mothers cannot reliably meet the needs of their children. Wives try to push through the pain. Grinding fatigue as severe as that experienced with advanced cancer is present in most cases. Bloating, moodiness, and bladder and bowel issues are common as well. Feeling like a vibrant woman is long since gone. Acting like the loving and compassionate woman, mother and partner that she truly is becomes more and more difficult. The stress on family relationships is common and real. Even at this stage, most women fight the disease, refusing to let it completely take over their life. You would most likely pass right by them in public, having no idea of the devastation they are dealing with. Most of the time they get up, put on a brave face and do their best to live a normal life."
- Dr. Cook, world renowned gynecologist who specializes in the treatment of endometriosis and pelvic pain
Instead, I get cramps so bad I can't function for days on end. I'm talking pain-so-debilitating-not-even-heavy-narcotics-can-touch-it-agony-I-wouldn't-wish-upon-anyone-not-even-my-worst-enemy.
And no, I'm not exaggerating.
Ever since I was a teenager, I've struggled with painful menstrual cramps. But over the past year or so, they've gotten significantly worse. I can honestly say I've experienced a pain level of 10. And when it says "writhing agony", that is truly what it feels like.
I've passed out from the pain (and not just once). Thankfully someone has always been there to catch me (except one time in college my roommate found me on the bathroom floor and totally freaked out). I've been driving and had to pull over because the pain was so bad. I've been to the ER (several times). Just last month I was in the ER and after finding nothing else wrong with me - liver, kidney, gallbladder, and appendix all checked out fine - was finally given a shot of morphine. Only to discover that morphine doesn't really work for me, or at least it wears off much sooner than it's supposed to, despite the nurse insisting that "morphine works for everyone".
After being on some form of hormone therapy since I was 15, I decided enough was enough. No more pills, no more shots, no more blood draws, no more tests, no more waiting rooms, no more invasive procedures. This was in January 2011.
I had been on the pill (for pain management) since before I could drive. After getting married and finding out we probably weren't going to get pregnant the old fashioned way, we started seeing an infertility specialist. For anyone not familiar with reproductive medicine, it can seem like a big guessing game. What works for some women doesn't work for others. If a cycle ends in a BFN (big fat negative), sometimes the only "medical" advice you'll get is to just try again, which we did over and over. After more than 3 years, including 8 cycles of Chlomid and 4 cycles of IVF, my hormones (as well as my spirits) were a mess.
After the twins were born (via gestational carrier), my cramps were so bad again I could barely take care of them, I did 7 rounds of Lupron Depot. Lupron is an estrogen suppressant, so basically it "tricks" your body into thinking it's in menopause so you don't get a menstrual cycle. However, the price of NOT getting a menstrual cycle came with a whole list of things I DID get, including acne, hot flashes, weight gain, anxiety, and insomnia. After everything I had put my body through, I just wanted some time to do nothing. No hormone therapy of any kind.
After stopping the suppression shots, I didn't have a menstrual cycle for over a year. This was anticipated, but still ... Yipppeeeeee! And even after that, my cycles were sporadic (sometimes I'd go 6 weeks in between cycles, sometimes 2 weeks). For about 5 months, from July to October 2012, my cycles were every 28-32 days. At first I was excited, I had never experienced a legitimately "regular" (non-hormone induced) cycle. In the very back of my mind there was even a glimmer of hope that maybe I'd have less pain (or maybe, just maybe, I could even get pregnant on my own). But then my cycles were getting shorter and shorter. I had one that lasted 21 days, then 16 days, and then two cycles almost back-to-back. The LESS time I had in between the MORE I was in pain.
I'll never forget the Tuesday before Christmas, I was working and about half way through my shift I was so miserable I had to take half a Vicodin. By that evening I was in so much pain I couldn't eat or sleep. I spent the next 5 days almost completely bed ridden. When I did get up, I had to walk slumped over. I was taking pain pills every couple hours, and even that was barely taking the edge off. Christmas Day was a total blur.
The next day was more of the same. I called and got a same day appointment with Dr. W. She ordered blood work, she did an ultrasound in the office, and even referred me out for an x-ray. Everything was normal, which I guess was a relief, except I still didn't have a game plan for dealing with the pain.
By New Year's Eve I finally starting to feel better and I remember being so thankful that I could take my kids to the Zoo and not be doubled over in pain.
A couple days later, it started all over again. I think I had maybe been pain free for 3 days. Cramps and pain like I've never experienced. The pain never got below an 8, and hovered for days on end at a 9. I was mentally and physically at my breaking point.
Dysmenorrhea is the medical term for the cramping that occurs before and during a woman's menstrual cycle. For anyone with more than the normal amount of cramping, there's usually an underlying reason. For me, that reason is endometriosis.
Endometriosis is defined most simply as the presence of endometrial tissue outside the uterus. It's not supposed to be there, and from a medical perspective they actually aren't sure how or why. Making it even more of a mystery is the fact that you can't even confirm the existence of endometriosis without surgery, and (why yes, there's more) there isn't even a direct correlation to the more endometriosis there is the more pain you have. In other words, a woman can have a minuscule amount of endometriosis and a severe amount of pain, or a significant amount of endometriosis and very little pain. I happen to have both - a lot of endometriosis and a lot of pain. Still baffles me that we can create human life outside the human body but we don't know why tissue grows somewhere it's not supposed to and cause some women to suffer incredible pain.
There are theories, of course. The most common is that during menstruation some of the endometrial tissue backs up through the fallopian tubes and implants itself in the abdomen where it continues to grow. Another theory is that endometrial tissue is distributed from the uterus to other parts of the body through blood flow. Yet another theory is that it's genetic. In my case, a genetic predisposition is the most plausible explanation. My mom and maternal grandmother also had endometriosis and struggled to conceive. My parents were actually told by numerous doctors they would never be able to have children. When I came along 6 years later, one doctor actually told them I couldn't possibly be their child (not exactly what new parents want to hear upon having their "miracle" child).
The only definitive way to diagnose endometriosis is to perform a surgical procedure called a laparoscopy. Although my mom had all the symptoms, she didn't know for sure she had endometriosis until she had a hysterectomy at age 46. My grandmother had a hysterectomy even earlier at the age 38.
I actually had my first laparoscopy in November 2006 (after my first of two miscarriages) and I had so much endometrial tissue in my abdomen that it actually adhered to several surrounding organs, including my bowels, liver, and kidney. They were able to remove most of it, and the prognosis was that I should no longer have any problems getting (and staying) pregnant. Sadly that wasn't the case.
The one and only thing that can actually eliminate endometriosis altogether is a hysterectomy. A couple years ago I had proposed it to my previous OBGYN and he flat out refused. He claimed I was too young and still within child bearing years (never mind that despite all efforts I was still unable to get pregnant, had decided to use a gestational carrier, AND had 10 embryos still frozen from my past IVF cycles). Not too long after that we switched insurance carriers to Kaiser. My first appointment was with a midwife, and while I really liked her, she wasn't licensed to perform surgery. She did refer me to Dr. S and although her first available appointment wasn't for another 2 months, she was absolutely worth the wait.
I first met with Dr. S in July 2012. At that time we talked over my history and while she wasn't immediately opposed to a hysterectomy, she also wasn't willing to jump right in either. She wanted to run some tests and just get to know me. We talked at length over the course of several appointments and each time she made sure I understood that a hysterectomy was a permanent solution and there was no going back. We also talked about the possibility of leaving one ovary, even though I was fairly set on removing both. I think all along she wanted me to leave one ovary, but she never pushed me one way or the other. Not only are there cardiovascular and other risks associated with taking both ovaries, but I would also have to do hormone replacement - the exact thing I didn't want to do.
It wasn't until after back-to-back cycles in December and January, and she could actually see for herself how miserable I was, that she agreed to the hysterectomy. Surgery was schedule for March 1, 2013.
After one last discussion we decided to leave the left ovary, assuming it was clear of endometriosis and scar tissue. She would take my uterus, cervix, both fallopian tubes, and my right ovary. Surgery couldn't come soon enough.
More to come on the actual surgery, what happened just a few days before, and my recovery.
"As a disease, endometriosis can take away many additional aspects of a normal life. Mothers cannot reliably meet the needs of their children. Wives try to push through the pain. Grinding fatigue as severe as that experienced with advanced cancer is present in most cases. Bloating, moodiness, and bladder and bowel issues are common as well. Feeling like a vibrant woman is long since gone. Acting like the loving and compassionate woman, mother and partner that she truly is becomes more and more difficult. The stress on family relationships is common and real. Even at this stage, most women fight the disease, refusing to let it completely take over their life. You would most likely pass right by them in public, having no idea of the devastation they are dealing with. Most of the time they get up, put on a brave face and do their best to live a normal life."
- Dr. Cook, world renowned gynecologist who specializes in the treatment of endometriosis and pelvic pain
Sunday, January 20, 2013
What I learned from my son's experience
Our son,
Max, was diagnosed with severe GERD (gastroesophageal reflux disease) at the
age of 4 months. I wasn't breast feeding and despite trying every brand
of formula on the market, he was barely eating. After months of trial and
error we were finally introduced to a formula, called Neocate, which seemed to
work for his tummy. Neocate is an amino acid based formula, or elemental
formula. The proteins contained in Neocate are in their simplest and most
broken down form, making it easier for the body to process and digest.
They are also the least likely to trigger an allergic or adverse
response. Not that it mattered but Neocate wasn't covered by insurance,
only came in a sample size, and cost $85/can. Of course we would have
paid double (triple!) if it meant he was getting the nutrition he needed.
Neocate worked for the most part until he was about 10 months old. Once we started the transition to solids, Max developed a debilitating fear of food in any form. He wasn't sleeping for more than 45 minutes at a time. He was irritable and at times inconsolable for hours on end. I remember holding him in my arms and walking around our house for what seemed like forever, and yet he just kept crying. Despite his pediatrician telling us everything was fine, I knew it wasn't. Something was wrong, and despite all of my pleas, no one seemed to believe me.
Just after his first birthday, Max was hospitalized at Doernbecher Children's Hospital. He had gone from the 25th percentile for weight down to the 3rd. He was diagnosed as "failure to thrive" and given an NG tube (a thin, soft tube that went up his nose and into his stomach). And yes, watching my son get strapped down and a tube forcefully threaded up his nose was even more horrific than it sounds. But then having to do it at home by ourselves for the next 2 months ... well, it was absolutely terrifying.
Initially I felt like it was my fault, that perhaps I hadn't done enough, said enough, complained enough, for someone to take my concerns seriously. But then I remembered all of the phone calls I had made, frantic voicemail messages left on the after hours line, a notebook full of research and questions, and oh so many appointments. At one point they recommended bringing him in every other day for a weight check, which made us that much more nervous and concerned, but of course we did it. And then how after a while the nurses started asking us why we was in the office yet again, and my increasingly enraged reminders to them that no, he still wasn't eating. One look at my son with a tube up his nose and clearly everything was NOT fine.
The reality of the situation was my son was in pain, I didn't have answers, and I felt helpless. Per the GI specialist, we had done what was medically necessary (the NG tube). But I had become increasingly skeptical that he hadn't outgrown at least some of the symptoms of GERD, and perhaps we were dealing with something else entirely. Until this time, we had been relying solely on what the doctors and nurses were telling us about Max's condition. But no one - not even our inner circle of health care professionals - could tell us why Max wasn't able to eat on his own, and more importantly, how he was going to get better.
As the weeks dragged on, the stress of having our son on a feeding tube (both emotionally for us, and physically for him) was just too much. Once I stopped second guessing and blaming myself, I became convinced that we needed a different approach - something less invasive for sure, but also something more personalized and more proactive toward an eventual solution. I was at the mercy of others for the care and treatment of my son, but when you have little to no faith in the people providing that care, I knew we needed to look elsewhere for help.
With no one willing to look beyond his initial diagnosis, I started reaching out to friends and acquaintances. Eventually I came across someone who understood what we were going through, what life was really like for Max (and us), and suggested we take him to a behavioral therapist. A what? I mean come on, Max didn't have behavioral issues. He didn't act out. He wasn't aggressive towards others. In fact he was the exact opposite - loving, sweet, docile, and according to every evaluation or test he'd been given, he was perfectly fine. So what would we take him to a behavioral therapist? No one wants to hear their child is outside the norm, but in the end going to see a behavioral therapist was one of the best decision we could have made. (More on this in another post.)
While this experience totally sucked and tore me apart emotionally, it also shaped me as a parent. I wouldn't be the person (or parent) I am today without having gone through this experience with my son. Part of me is still angry and bitter, but I also learned a lot about myself, about my role as a mother and a parent, and realize now that it happened for a reason.
If I had to list the things I learned from this experience (and could pass along to anyone else going through something similar) here's what they would be:
1.) Always trust your gut! Call it mother's intuition, call it a Mama Bear protecting her cub, call it whatever you want, but when you're at a crossroads or have to make a decision, go with that feeling in your gut.
2.) When people give you advice - be it someone in the medical profession, a family member, friend, or even someone you just met - they usually have good intentions. But things like "well, I'm sure he won't starve to death", or "he'll eat when he's hungry", were just plain cruel and made me want to scream nasty things at them. Proved by the fact that Max dropped so low on the weight chart that he ended up on a feeding tube, he was clearly not the type of kid that would "eat when he's hungry". Max wasn't your typical picky or lazy eater, and yet from a medical perspective everyone treated him like he was, and just expected him to grow out of it. While he did eventually overcome his fear of eating and to some degree I do think he needed time to mature and "grow out of it", it wasn't without a great amount of suffering (on his part) and effort (on our part).
3.) I had to be the most aggressive advocate possible for my son. Even if it meant questioning everything I was being told. I had to learn the hard way that just because something works for "most" kids doesn't necessarily mean it would work for mine. And not being afraid to get a second, third, or even fourth opinion. This would become especially true when it came to my own health struggles down the road!
Saturday, January 12, 2013
Resolution #1: Drink more water
I’ve been told I should be drinking approximately half my weight
in ounces per day. I’ve tried but
drinking that much water takes real effort.
Resolution #1: Drink more water
I don't know exactly but I
probably drink about 30 ounces of water per day, maybe upwards of 50 ounces on a good day. Not nearly enough, I
know!!! So in order to motivate myself, I did a little research and
here's what I found out:
By the time you’re thirsty, you’re already dehydrated.
That feeling of craving a drink of water, or having a dry mouth or
chapped lips, means your body is already working overtime and less efficiently
than if you were properly hydrated. Chronic dehydration can cause
sickness, premature aging, allergies, asthma, colitis, constipation, and
migraine headaches, just to name a few. YIKES! It can also cause
more everyday ailments such as irritability, confusion, and fatigue. Not to
mention that more and more people are using prescription drugs as their primary form of treatment,
when instead many of these conditions (if not all of them) could be prevented by just drinking the right amount of water.
Not drinking enough water when exercising causes your heart to
work overtime.
Water acts like a lubricant and is a vital part of the many
chemical reactions in the body. When not properly hydrated, oxygen and
nutrients are transported less efficiently to the muscles, thus making them recover
slower. Being well hydrated also means your heart doesn't have to work
nearly as hard to pump blood throughout your
body.
Not all water consumption has to be in the form of liquid H2O.
When I think of "drinking" water, I think about it as
just that. But you can also “eat” your
water. Foods high in water content are
(fruits:) strawberries, watermelon, raspberries, pineapples, cantaloupe,
peaches and oranges, and (vegetables:) cucumbers, iceberg lettuce, celery,
radishes, zucchini, tomatoes and cabbage.
Water helps to fight fatigue.
When drinking caffeine in the form of coffee or sugar sweetened
drinks, you're actually masking the issue of fatigue, not fixing it.
Coffee in particular acts as a diuretic, which can cause dehydration.
I've heard varying opinions on drinking fluids at mealtimes. One argument is that water helps us to break
down food and be able to absorb the good nutrients that come from whatever
we've eaten. The opposing argument is that water dilutes the digestive
enzymes and stomach acids that are essential to breaking down food and
absorbing nutrients. They both sound like valid theories to me. Personally I don’t tend to drink a lot at
mealtime, but not necessarily for any of these reasons.
For now my goal isn't necessarily to drink a certain amount of water per day. I'll just start by drinking more than I do right now, and trying to stay ahead of the curve by not waiting until I'm already thirsty.
For now my goal isn't necessarily to drink a certain amount of water per day. I'll just start by drinking more than I do right now, and trying to stay ahead of the curve by not waiting until I'm already thirsty.
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