Today I saw an amazing video featuring Helen Keller and how she learned to speak with her voice. It was truly humbling to watch. For so many years, Helen was called dumb, and yet she overcame so much adversity and serves as a role model and inspiration to millions.
I was then reminded of my own situation. One of the hardest things about infertility is that our bodies won't do what they were biologically designed to do. It can be hard dealing with the feelings of being "damaged goods". I find myself feeling down on days, wondering why I'm "broken" and why it is that I can't achieve what so many others do so easily.
Helen Keller was seen as "damaged goods" as well. Her body did not work the way nature intended it to. But with the right help, she overcame her adversity. She became a role model and has gone down in history as a game-changer. She went from being handicapped to handiCAPABLE. She went from being disabled to being disABLED! She spent hours learning to communicate, but in the end, the effort was worth it.
She wasn't broken, and neither am I.
http://www.youtube.com/watch?v=Gv1uLfF35Uw
Friday, May 24, 2013
Thursday, May 23, 2013
Truly the most amazing news- BACK IN THE GAME!
Waiting has never been my strong suit. Yesterday was 7 days post D&C, and I was getting antsy for my pathology results. I called my OB's office in the morning, and they said the results were in (hooray) but the doctor had not reviewed them yet, so they couldn't tell me anything.
So the waiting began. On the up side, I was able to clean my entire office and get a bunch of old cases filed. The downside was that it was all busywork.
Finally during lunch, my OB called. I did NOT expect the words that came out of her mouth.
"The results are in. There was definite heavy overgrowth, and polypoid tissue, but no fibroids, and no evidence of abnormal cellular growth."
Wait.. what? I asked her to repeat herself.
"You heard me Naria, they found NO evidence of hyperplasia"
I wasn't getting it. I just sat there silently.
"Naria, that's GREAT news. I sent them your first two biopsies to review everything, but this lab has NEVER changed their tune from a first review to the second review. Either I managed to find the only two spot in your uterus that had hyperplasia, or the lab misread the biopsies Either way I'm getting you to the RE's clinic as soon as I am able, and we're going to get you to babyland".
Babyland ? Pregnancy? Wait, this is all possible for me?
She went on to tell me that I was going to stay on the provera at 4x my prior dose until the final review comes back from the pathologist but she's ready to send me to the RE like... yesterday... and told me that the next time she sees me will be when I'm pregnant.
When. I'm. Pregnant.
Holyfreakingcrap- it just got REAL. Until this point pregnancy was like something imaginary in my mind. Something that happened to other people. Something that I would never experience.
And now, there's hope.
So the waiting began. On the up side, I was able to clean my entire office and get a bunch of old cases filed. The downside was that it was all busywork.
Finally during lunch, my OB called. I did NOT expect the words that came out of her mouth.
"The results are in. There was definite heavy overgrowth, and polypoid tissue, but no fibroids, and no evidence of abnormal cellular growth."
Wait.. what? I asked her to repeat herself.
"You heard me Naria, they found NO evidence of hyperplasia"
I wasn't getting it. I just sat there silently.
"Naria, that's GREAT news. I sent them your first two biopsies to review everything, but this lab has NEVER changed their tune from a first review to the second review. Either I managed to find the only two spot in your uterus that had hyperplasia, or the lab misread the biopsies Either way I'm getting you to the RE's clinic as soon as I am able, and we're going to get you to babyland".
Babyland ? Pregnancy? Wait, this is all possible for me?
She went on to tell me that I was going to stay on the provera at 4x my prior dose until the final review comes back from the pathologist but she's ready to send me to the RE like... yesterday... and told me that the next time she sees me will be when I'm pregnant.
When. I'm. Pregnant.
Holyfreakingcrap- it just got REAL. Until this point pregnancy was like something imaginary in my mind. Something that happened to other people. Something that I would never experience.
And now, there's hope.
Wednesday, May 22, 2013
"You can always adopt"
I wanted to write a post today on one of the things that many folks consider to be the most insensitive thing you can say to someone struggling with infertility:
"Oh, why don't you just adopt"
"Just adopt"- like it's as easy as going down to a human shelter, plunking down $40, getting a human license and picking one out of a kennel. A baby is not a dog or a kitten, and it's not as simple as "just" doing it.
I'm going to give you both sides of the coin, and then where I stand in the whole picture.
You have to go through the process of mourning the loss of ever having a biological child. Some people are able to do this, but some people are not able to move past that grief. For them, adopting is NOT an option because it does not fulfill their parenting needs.
Adoption isn't cheap
By the time many people struggling with IF reach adoption, they have already paid for several medicated cycles, and possible have experienced failed IVF. Since most women are out of pocket for IF costs, the cost to adopt is an additional burden.
Adoption from foster care- $0-$2000+ This type of adoption is normally through the state (not an agency) and is for a child who is waiting. This type of adoption is great if you don't mind raising an older (typically over the age of 5) child or a sibling group.
Domestic Infant Adoption (agency) - $5,000- $30,000+ This is the adoption most people think of. Go to an agency, fill out the paperwork, make a profile, wait to be picked by a birth mother. The wait for a healthy infant can be YEARS depending on your level of comfort with prenatal drug exposure, ethnicity, and disabilities.
Domestic Infant Adoption (independent)- $8,000- $30,000+. This type of adoption is becoming more popular again. It's the same as agency adoption, but instead of paying an agency to find an expectant mother for you, you use a matching service, publicize yourself, or find an expectant mother through word-of-mouth. This type of adoption typically carries more risk when it comes to women who are scamming prospective adoptive parents.
International Adoption- $7,000-$50,000+. The waits are long, the requirements are strict, the children are older, and many of the children face significant special needs. For instance, the last time I inquired, the wait for a HEALTHY baby (aged 2 or under) from China was 5 years. FIVE. YEARS. And that is AFTER you spend 12-18 months doing all of the paperwork!
Adoption has risks too
For women who have gone through hell trying to get pregnant, adoption is another risk to take. The chance of bringing home a take-home forever child is typically higher than most IVF clinic success rates, but disrupted adoptions (where the biological parents change their mind after placement) do happen, there are scam artists, medically, you may never know what risks your child has, and there is always the chance that you might not pass a home study (but that's rare unless you have a criminal background)
Adoption is invasive- and another emotional slap to the face
To adopt, you are put through the gamut. You're fingerprinted, you have to have FBI background clearances. You have to take classes, training, medical studies. Your finances are looked over with a fine tooth comb. Your friends, family, and coworkers are interviewed, giving them an active voice in determining if you are fit to raise a child. You have a social worker come to your home and judge your living situation. Once again, your fate to parent is out of your hands. When a fertile couple chooses to start a family, the only two people passing judgement on their readiness to parent are the two people involved in creating this life. They don't need a license, a background check, or a home inspection in order to get a "pregnancy license"
If you get through all of this, and you're going through domestic adoption, you then get to face another slap to the face. A woman who is so fertile that she is now carrying a child she feels that she does not have the ability to parent gets to make the final call- she gets to decide if YOU are good enough to raise her child. For women who have faced IF, it's a low, LOW blow. You already feel like you're a biological failure, that you are broken, damaged goods, and now you sit and wait while countless women who find themselves pregnant by mistake pass over your profile, deciding that you're not good enough.
"Oh, why don't you just adopt"
"Just adopt"- like it's as easy as going down to a human shelter, plunking down $40, getting a human license and picking one out of a kennel. A baby is not a dog or a kitten, and it's not as simple as "just" doing it.
I'm going to give you both sides of the coin, and then where I stand in the whole picture.
Reasons a person might not adopt:
Adoption isn't a cure for infertilityYou have to go through the process of mourning the loss of ever having a biological child. Some people are able to do this, but some people are not able to move past that grief. For them, adopting is NOT an option because it does not fulfill their parenting needs.
Adoption isn't cheap
By the time many people struggling with IF reach adoption, they have already paid for several medicated cycles, and possible have experienced failed IVF. Since most women are out of pocket for IF costs, the cost to adopt is an additional burden.
Adoption from foster care- $0-$2000+ This type of adoption is normally through the state (not an agency) and is for a child who is waiting. This type of adoption is great if you don't mind raising an older (typically over the age of 5) child or a sibling group.
Domestic Infant Adoption (agency) - $5,000- $30,000+ This is the adoption most people think of. Go to an agency, fill out the paperwork, make a profile, wait to be picked by a birth mother. The wait for a healthy infant can be YEARS depending on your level of comfort with prenatal drug exposure, ethnicity, and disabilities.
Domestic Infant Adoption (independent)- $8,000- $30,000+. This type of adoption is becoming more popular again. It's the same as agency adoption, but instead of paying an agency to find an expectant mother for you, you use a matching service, publicize yourself, or find an expectant mother through word-of-mouth. This type of adoption typically carries more risk when it comes to women who are scamming prospective adoptive parents.
International Adoption- $7,000-$50,000+. The waits are long, the requirements are strict, the children are older, and many of the children face significant special needs. For instance, the last time I inquired, the wait for a HEALTHY baby (aged 2 or under) from China was 5 years. FIVE. YEARS. And that is AFTER you spend 12-18 months doing all of the paperwork!
Adoption has risks too
For women who have gone through hell trying to get pregnant, adoption is another risk to take. The chance of bringing home a take-home forever child is typically higher than most IVF clinic success rates, but disrupted adoptions (where the biological parents change their mind after placement) do happen, there are scam artists, medically, you may never know what risks your child has, and there is always the chance that you might not pass a home study (but that's rare unless you have a criminal background)
Adoption is invasive- and another emotional slap to the face
To adopt, you are put through the gamut. You're fingerprinted, you have to have FBI background clearances. You have to take classes, training, medical studies. Your finances are looked over with a fine tooth comb. Your friends, family, and coworkers are interviewed, giving them an active voice in determining if you are fit to raise a child. You have a social worker come to your home and judge your living situation. Once again, your fate to parent is out of your hands. When a fertile couple chooses to start a family, the only two people passing judgement on their readiness to parent are the two people involved in creating this life. They don't need a license, a background check, or a home inspection in order to get a "pregnancy license"
If you get through all of this, and you're going through domestic adoption, you then get to face another slap to the face. A woman who is so fertile that she is now carrying a child she feels that she does not have the ability to parent gets to make the final call- she gets to decide if YOU are good enough to raise her child. For women who have faced IF, it's a low, LOW blow. You already feel like you're a biological failure, that you are broken, damaged goods, and now you sit and wait while countless women who find themselves pregnant by mistake pass over your profile, deciding that you're not good enough.
Reasons why someone might choose adoption:
Your desire to be a mother is stronger than your desire to be pregnant
For some women, once they can move past the grief of losing their biological ability to have a child, their desire to be a mom overrides their fear/discomfort of not being a biological parent.
Adoption can be a "better investment"
Adoption can be a "better investment"
For couples who are open to some of the less expensive types of adoption (including foster care and legal risk foster-to-adopt), adoption can make better "financial sense" than IVF. For those who are 100% OOP for IVF, the costs can easily be between $10,000 and $15,000 and nationally the success rate for IVF is between 30 and 50% depending on the type of IVF and embryo approach you take.
Contrast that with adoption. While there are no nationally reported statistics, most organizations I've researched state that the number of displacements (where the expectant mom changes her mind after placement but before the revocation window is over) is less than 10%. The number of women who match but change their mind before birth is higher, but if you are working with a reputable agency, you do not lose the financial investment- it's more of a "shared risk" where your fees cover you adopting *a* child, not necessarily *a specific child*.
Adoption as a spiritual belief
Contrast that with adoption. While there are no nationally reported statistics, most organizations I've researched state that the number of displacements (where the expectant mom changes her mind after placement but before the revocation window is over) is less than 10%. The number of women who match but change their mind before birth is higher, but if you are working with a reputable agency, you do not lose the financial investment- it's more of a "shared risk" where your fees cover you adopting *a* child, not necessarily *a specific child*.
Adoption as a spiritual belief
For people of certain faiths, adoption is a part of their religious dogma. As a Christian, I know that the bible says that pure religion is to care for widows and orphans (James 1:27). For many who subscribe to similar faiths, adoption is a calling from a higher power to become a parent through a biblical ordination, and not through pregnancy.
For others, they may have moral/ethical issues with moving past a certain point of IF treatments, and adoption then becomes the "default" option for their next step in family building.
Adoption as a cultural norm
For others, they may have moral/ethical issues with moving past a certain point of IF treatments, and adoption then becomes the "default" option for their next step in family building.
Adoption as a cultural norm
Many people who are adopted, or who have immediate family who are adopted see adoption as a normal part of family building. For these women, adoption may have always been "part of the plan" but perhaps the plan was just moved up a bit in the timeline.
Adoption for health reasons
Adoption for health reasons
Sometimes during the course of IF treatment, women learn that it may be inadvisable to become pregnant (or to have a subsequent pregnancy). For these women, their desire to ensure their long-term health leads them to adoption.
Where I stand
I am adopted. For me, adoption is a spiritual calling and a part of my history, and a cultural norm in my family. My mother struggled with IF and eventually chose adoption after several failed IVF procedures. I can't imagine having two parents who could have loved me more than my mom and dad, and they ARE my parents, not my "adoptive parents". She was the one who came running when I fell off my bike and screamed "MOMMY HELP". He was the one who taught me to fish and sang me lullabies. They were the ones at every scholastic competition, performance, and athletic event. They were the ones who were at my graduations, and he was the one who gave me away when I walked down the aisle. I do also know my birth mother, and I have an amazing relationship with her, but it's definitely different. She will always be my mother, but she will never be my MOM.
When I met DH, one of our first serious conversations was about adoption in the future. We haven't always been on the same page about what type of adoption we would pursue but at this point in time we are both open to growing our family through domestic infant or foster care adoption. I realize that this is not the case for every woman, but knowing that I *will* be a mother one day brings me comfort on the days where I struggle with feelings of fear and doubt with infertility.
When I met DH, one of our first serious conversations was about adoption in the future. We haven't always been on the same page about what type of adoption we would pursue but at this point in time we are both open to growing our family through domestic infant or foster care adoption. I realize that this is not the case for every woman, but knowing that I *will* be a mother one day brings me comfort on the days where I struggle with feelings of fear and doubt with infertility.
I am always open to answering questions about adoption- I'm an open book when it comes to my journey.
Sunday, May 19, 2013
Unexpected Blessings
There is nothing "Fun" about infertility, but I will say that having trouble TTC has brought me some unexpected blessings. IF can knock the wind out of your sails, so today I wanted to share some of those blessings as a reminder to myself of the things I have gained during this process of losing so much.
1) A closer relationship with my mother. I was always a daddy's girl, and while mom was a SAHM for most of my childhood, we were never super close. She wasn't the kind of mom I could gossip with. She also went through infertility struggles while trying to start a family, so for the first time in my life, I've been able to bond with her over a shared journey. She had several failed IVFs and two ectopic pregnancies that almost killed her before she and my dad decided to adopt me, so it's nice to have a mom that "gets it".
2) A side of my husband I had never seen. He has become so fiercely protective over me. He is SO patient, so kind, and so willing. On our wedding day, one of his vows is that he would meet me where I was, with his hands ready and heart willing, always. He's always been supportive, but to know that I don't have to be alone when I cry, to know that if I need a snack or chocolate to know that he's there for me regardless has been amazing. Sure, I've vented about the times when he wasn't immediately there, but those are the exceptions, not the rule.
3) Friends I would have never had. It's weird that the ladies who "get me" and who have supported me through this journey are folks I've never met. Some of them... I don't even know what they look like. But I know they are there and that they are behind me each step of the way!
4) Friends who have opened up. Since "coming out" during NIAW, I've had several friends message me and open up about their infertility journeys. For some it was female friends who reached out. The one who REALLY surprised me was a male friend of my husband's who I know only casually. He messaged me to share what he and his wife had been through, and offered to be "That guy" for my husband to talk to about all things IF related. I feel SO blessed to have them in my life!
2) A side of my husband I had never seen. He has become so fiercely protective over me. He is SO patient, so kind, and so willing. On our wedding day, one of his vows is that he would meet me where I was, with his hands ready and heart willing, always. He's always been supportive, but to know that I don't have to be alone when I cry, to know that if I need a snack or chocolate to know that he's there for me regardless has been amazing. Sure, I've vented about the times when he wasn't immediately there, but those are the exceptions, not the rule.
3) Friends I would have never had. It's weird that the ladies who "get me" and who have supported me through this journey are folks I've never met. Some of them... I don't even know what they look like. But I know they are there and that they are behind me each step of the way!
4) Friends who have opened up. Since "coming out" during NIAW, I've had several friends message me and open up about their infertility journeys. For some it was female friends who reached out. The one who REALLY surprised me was a male friend of my husband's who I know only casually. He messaged me to share what he and his wife had been through, and offered to be "That guy" for my husband to talk to about all things IF related. I feel SO blessed to have them in my life!
5) A new outlook on life. Yes, I want to be a mother but I've come to realize that being a mother isn't the end-all be all of existence. If for some reason it never happens for me I know that I will be just fine.
Saturday, May 18, 2013
Two Steps Forward- One Leap BACK
So today has been a long day for many reasons. The hubs and I both over-extended ourselves doing yard work before either of us were cleared to do so post-op. It was just such a lovely day. That decision landed both of us in urgent care- him with bleeding, me with suspected pneumonia. With a 2.5 hour wait, we decided to come home and just tough it out.
The truly hard part of the day was the pregnancy announcements. Several of my friends posted their u/s photos on facebook today. Two of them have been married less than a year. Announcements don't normally bother me, but for some reason these did- it may have just been the rapid succession.
I'm not proud to admit the thoughts that I had- the immense anger and hatred I had toward these women whom I love dearly. I know deep down that I don't hate them, that I simply hate myself for being unable to achieve what they have come across so easily. I spent a good hour having a big ugly cry and I feel better- not great, but better.
The thoughts have recently been crossing my mind with my hyperplasia situation that I'm not even sure if I want to pass on my genes. I feel like I cannot in good conscience knowingly pass that propensity on to another generation. Adoption as a first and only option is looking better and better, but I know DH really wants a biological child, so I'm not ripping the ute out yet.
Hopefully this week brings happier news and happier posts.
The truly hard part of the day was the pregnancy announcements. Several of my friends posted their u/s photos on facebook today. Two of them have been married less than a year. Announcements don't normally bother me, but for some reason these did- it may have just been the rapid succession.
I'm not proud to admit the thoughts that I had- the immense anger and hatred I had toward these women whom I love dearly. I know deep down that I don't hate them, that I simply hate myself for being unable to achieve what they have come across so easily. I spent a good hour having a big ugly cry and I feel better- not great, but better.
The thoughts have recently been crossing my mind with my hyperplasia situation that I'm not even sure if I want to pass on my genes. I feel like I cannot in good conscience knowingly pass that propensity on to another generation. Adoption as a first and only option is looking better and better, but I know DH really wants a biological child, so I'm not ripping the ute out yet.
Hopefully this week brings happier news and happier posts.
Friday, May 17, 2013
Sick as a dog
Just as I thought I had made it through surgery with no issues, it looks like the "allergy flare up" was actually the start of a nasty nasty head cold.
I feel like I've been hit by a bus. And that's saying something because I normally handle colds like a champ. I'm trying to survive my work day without getting everyone and their cousin sick, and more or less keeping to myself in my cubicle. Thank goodness my teammates took over my case load for the week in anticipation of my surgery. I don't know what I'd do without the amazing and supportive group of folks I work with.
I just hope I don't get DH sick- he's still recovering from his tonsillectomy and he's in the "danger zone" this week- at the point where he could hemorrhage and go downhill.
Boy- when it rains, it POURS
I feel like I've been hit by a bus. And that's saying something because I normally handle colds like a champ. I'm trying to survive my work day without getting everyone and their cousin sick, and more or less keeping to myself in my cubicle. Thank goodness my teammates took over my case load for the week in anticipation of my surgery. I don't know what I'd do without the amazing and supportive group of folks I work with.
I just hope I don't get DH sick- he's still recovering from his tonsillectomy and he's in the "danger zone" this week- at the point where he could hemorrhage and go downhill.
Boy- when it rains, it POURS
Thursday, May 16, 2013
It was like having my uterus power washed
So yesterday was my D&C and Hysteroscopy. I've not figured out if it was better or worse than I was expecting.
But perhaps I should rewind for a bit and explain what led up to this quasi-emergency surgery.
After a biopsy in January showed simple endometrial hyperplasia, I was put on Provera (synthetic progestins) for 90 days in hopes of slowing endometrial growth and allowing my body to self-correct the overgrowth. Simple endometrial hyperplasia is just a slight overgrowth of the endometrial lining- much like when you wait a bit too long to mow your lawn and it gets floppy. The OB said there was a less than 0.5% chance of it every becoming cancerous.
So 90 days (many tears, a few broken dishes, and several apologies to my husband) later I went in for a repeat biopsy. OB had difficulty getting a sample, which she took to mean that it had worked. So lucky me, LUCKY ME I was subjected to TWO endometrial biopsies.
Many people have asked what that experience is like. I found a great youtube animation (not for the squeamish) that highlights the procedure.
http://www.youtube.com/watch?v=at-CfWUiClg
Basically, OB inserts a solid catheter type implement into your uterus, and suctions out lining in a sweeping motion. Most women suggest taking 600-800mg of ibuprofen before the appointment. My first biopsy was a rather unfortunate surprise, and it was about a 1/2 day recovery in bed with some of the worst cramps of my life.
The second biopsy was slightly less horrific- I took 800mg of ibuprofen 20 minutes before my scheduled appointment time. It still felt like she had inserted a shop-vac into my uterus and turned it on high, but there was less cramping afterwards.
She said to expect the biopsy results in two weeks. I was leaving for a work conference in Nashville a week later, so I expected to hear back sometime after my return from the conference. The first indication that I should have known something was not right is when AF showed up unexpectedly the night before my trip. By the time I arrived in Nashville, I was soaking through a super+ tampon every 30-45 minutes. I didn't want to miss the conference, so I figured if the bleeding kept up, I'd fly home early and go to the hospital.
And then I got the call from my OB. Instead of my lining reverting to normal, it progressed into complex hyperplasia. Instead of just being a bit overgrown in a few spots, my endometrial cells were crowding each other out and creating dense patches of thick brushy overgrowth. It went from being that neighbor who didn't mow his lawn for 2 weeks to that neighbor who mows his lawn once a summer. I don't remember the entire conversation at this point, but she threw out "oncology consult" "need for a D&C and exploratory surgery as soon as you're back in town" and "don't panic yet".
Don't panic yet. Immediate surgery+ oncology consult= freaking out
So I kept changing my tampons and decided to fly home early. By the time my plane landed, I was bleeding so heavily that I had clots running DOWN MY LEG INTO MY SHOE.
Stop and think about that for a moment.
I called my OB, she said to quadruple up on my progestins and pray that it slows things down.
So I took 4x my regular dose, got behind the wheel of the car and prayed I didn't ruin my car's upholstery. It was a long 2 hour drive home from the airport.
By that evening the bleeding had slowed (but not stopped completely) and I was starting to feel a bit more human. We were able to get my D&C/hysteroscopy scheduled for that next Wednesday (yesterday).
The day of the surgery I had to be at the surgical center by 8:30 in the morning for an 11:30 procedure. Honestly, the surgery was over and done with by 12: 15 and I was home by 1:30 or 2:00. The doctor said it was like blazing a trail through the wilderness up in my uterus, but she feels that she got 95% or so of my lining. The best news is that there were no visible tumors, no fibroids, and no polyps. I'm glad to know there are no fibroids or polyps causing the bleeding, and the fact that there were no visible tumors leads us to believe that if there *is* cancer that we caught it at a stage early enough that a hysterectomy would take care of the whole problem (but the hysterectomy is obviously the last resort)
It wasn't too bad, the pain never peaked over a 3 or a 4, but I felt like I had been hit by a MAC truck. I slept from the time I got home until 7 PM, woke up for a few hours to eat dinner and then fell asleep again until 7AM today. I'm feeling much more human, still crampy and still tired, but I could have probably gone to work if I had someone to drive me.
The best surprise- I was prepared for heavy bleeding and spotting based on my last week, but I've not needed a pad in the last 12 hours. Here's hoping this is the reset my body needs, and it can keep itself in check the next 3 months.
Pending the pathology results from the lab at the regional cancer hospital, the plan will either be to do 3 more months of higher dose progestin therapies (if there is no atypia) and hope that it fixes the problem, or move on to more aggressive therapies with a gynecological oncologist (if there is atypia seen). Going back to the lawn metaphor, atypia would be the dandelions and crab grass of the endometrial lining. Starts small, but left unchecked chokes all of the good grass (lining) out and destroys your lawn (endometrium). Which in this case, would signal uterine cancer.
Two weeks until I know what's going on. It'll be a long two weeks.
But perhaps I should rewind for a bit and explain what led up to this quasi-emergency surgery.
After a biopsy in January showed simple endometrial hyperplasia, I was put on Provera (synthetic progestins) for 90 days in hopes of slowing endometrial growth and allowing my body to self-correct the overgrowth. Simple endometrial hyperplasia is just a slight overgrowth of the endometrial lining- much like when you wait a bit too long to mow your lawn and it gets floppy. The OB said there was a less than 0.5% chance of it every becoming cancerous.
So 90 days (many tears, a few broken dishes, and several apologies to my husband) later I went in for a repeat biopsy. OB had difficulty getting a sample, which she took to mean that it had worked. So lucky me, LUCKY ME I was subjected to TWO endometrial biopsies.
Many people have asked what that experience is like. I found a great youtube animation (not for the squeamish) that highlights the procedure.
http://www.youtube.com/watch?v=at-CfWUiClg
Basically, OB inserts a solid catheter type implement into your uterus, and suctions out lining in a sweeping motion. Most women suggest taking 600-800mg of ibuprofen before the appointment. My first biopsy was a rather unfortunate surprise, and it was about a 1/2 day recovery in bed with some of the worst cramps of my life.
The second biopsy was slightly less horrific- I took 800mg of ibuprofen 20 minutes before my scheduled appointment time. It still felt like she had inserted a shop-vac into my uterus and turned it on high, but there was less cramping afterwards.
She said to expect the biopsy results in two weeks. I was leaving for a work conference in Nashville a week later, so I expected to hear back sometime after my return from the conference. The first indication that I should have known something was not right is when AF showed up unexpectedly the night before my trip. By the time I arrived in Nashville, I was soaking through a super+ tampon every 30-45 minutes. I didn't want to miss the conference, so I figured if the bleeding kept up, I'd fly home early and go to the hospital.
And then I got the call from my OB. Instead of my lining reverting to normal, it progressed into complex hyperplasia. Instead of just being a bit overgrown in a few spots, my endometrial cells were crowding each other out and creating dense patches of thick brushy overgrowth. It went from being that neighbor who didn't mow his lawn for 2 weeks to that neighbor who mows his lawn once a summer. I don't remember the entire conversation at this point, but she threw out "oncology consult" "need for a D&C and exploratory surgery as soon as you're back in town" and "don't panic yet".
Don't panic yet. Immediate surgery+ oncology consult= freaking out
So I kept changing my tampons and decided to fly home early. By the time my plane landed, I was bleeding so heavily that I had clots running DOWN MY LEG INTO MY SHOE.
Stop and think about that for a moment.
I called my OB, she said to quadruple up on my progestins and pray that it slows things down.
So I took 4x my regular dose, got behind the wheel of the car and prayed I didn't ruin my car's upholstery. It was a long 2 hour drive home from the airport.
By that evening the bleeding had slowed (but not stopped completely) and I was starting to feel a bit more human. We were able to get my D&C/hysteroscopy scheduled for that next Wednesday (yesterday).
The day of the surgery I had to be at the surgical center by 8:30 in the morning for an 11:30 procedure. Honestly, the surgery was over and done with by 12: 15 and I was home by 1:30 or 2:00. The doctor said it was like blazing a trail through the wilderness up in my uterus, but she feels that she got 95% or so of my lining. The best news is that there were no visible tumors, no fibroids, and no polyps. I'm glad to know there are no fibroids or polyps causing the bleeding, and the fact that there were no visible tumors leads us to believe that if there *is* cancer that we caught it at a stage early enough that a hysterectomy would take care of the whole problem (but the hysterectomy is obviously the last resort)
It wasn't too bad, the pain never peaked over a 3 or a 4, but I felt like I had been hit by a MAC truck. I slept from the time I got home until 7 PM, woke up for a few hours to eat dinner and then fell asleep again until 7AM today. I'm feeling much more human, still crampy and still tired, but I could have probably gone to work if I had someone to drive me.
The best surprise- I was prepared for heavy bleeding and spotting based on my last week, but I've not needed a pad in the last 12 hours. Here's hoping this is the reset my body needs, and it can keep itself in check the next 3 months.
Pending the pathology results from the lab at the regional cancer hospital, the plan will either be to do 3 more months of higher dose progestin therapies (if there is no atypia) and hope that it fixes the problem, or move on to more aggressive therapies with a gynecological oncologist (if there is atypia seen). Going back to the lawn metaphor, atypia would be the dandelions and crab grass of the endometrial lining. Starts small, but left unchecked chokes all of the good grass (lining) out and destroys your lawn (endometrium). Which in this case, would signal uterine cancer.
Two weeks until I know what's going on. It'll be a long two weeks.
Tuesday, May 14, 2013
An Introduction
I've been thinking about starting this blog for quite some time, and with recent developments, I've decided there is no time like the present.
A brief history of us
My husband and I were married in August 2011 in Bermuda after learning that my father had cancer. Originally they said it was no big deal, but we weren't willing to take the risk of Dad not being there. It was the best decision ever. He died just over a year later.
At the annual appointment with my OB, we decided it was time for an endometrial biopsy. The results weren't great, but they weren't terrible. My lining was classified as simple endometrial hyperplasia, and I was started on 90 days of provera to hopefully put my endocrine system in check. The hope was that at my follow up biopsy, all would look good, and I'd be ready to move on to fertility treatments.
Unfortunately, that would not come to pass either. My second biopsy looked worse than the first, being classed as complex endometrial hyperplasia. From here, I have a D&C and hysteroscopy scheduled, followed by further hormone treatments if no evidence of cancer is seen.
This is not the happily ever after we imagined, and there are many days that I start off shouting EFF YOU UTE!
This journey isn't going to be puppies and rainbows, but my faith will guide me and DH on our journey to become parents.
I hope you'll stick around for the good, the bad, and the ugly
A brief history of us
My husband and I were married in August 2011 in Bermuda after learning that my father had cancer. Originally they said it was no big deal, but we weren't willing to take the risk of Dad not being there. It was the best decision ever. He died just over a year later.
At the annual appointment with my OB, we decided it was time for an endometrial biopsy. The results weren't great, but they weren't terrible. My lining was classified as simple endometrial hyperplasia, and I was started on 90 days of provera to hopefully put my endocrine system in check. The hope was that at my follow up biopsy, all would look good, and I'd be ready to move on to fertility treatments.
Unfortunately, that would not come to pass either. My second biopsy looked worse than the first, being classed as complex endometrial hyperplasia. From here, I have a D&C and hysteroscopy scheduled, followed by further hormone treatments if no evidence of cancer is seen.
This is not the happily ever after we imagined, and there are many days that I start off shouting EFF YOU UTE!
This journey isn't going to be puppies and rainbows, but my faith will guide me and DH on our journey to become parents.
I hope you'll stick around for the good, the bad, and the ugly
Wednesday, May 1, 2013
Why you NEED an RE, NOT an OB for Infertility Treatment
My second biopsy appointment was an
experience I will never forget. I went armed with a notebook of knowledge that
I gleaned from the 3T board, and questions I had for my OB regarding her plans
for my infertility treatment. She had talked a good talk at my first
appointment about monitoring and making sure I didn’t over-stimulate, so I was
excited to prove the 3T ladies wrong with a big “HA- Look at how awesome my OB
is.
Instead, I realized that while she is a great OB, she is completely ignorant when it comes to the diagnosis and treatment of infertility. Our conversation went like this:
Instead, I realized that while she is a great OB, she is completely ignorant when it comes to the diagnosis and treatment of infertility. Our conversation went like this:
Me:
so what are the steps from here?
OB:
Well, we need to get you ovulating. So as long as the biopsy looks good, we'll
start you on Clomid after your flow arrives.
I knew from the 3T board that starting
clomid without testing is a big no-no.
Me:
Will we do any testing first?
OB:
That is unnecessary
Red Flag: Totally necessary! The clomid
won’t do jack for me if my tubes are blocked. No point in going through all of
this is the eggs can’t get to where they need to be!
Me:
But what about an HSG for me and a SA for DH?
OB:
Those aren't necessary at this point in the process. Again, we want to do
minimal cost first. There's no reason
for that much testing this soon. You're worrying too much. We will do an ultrasound on Day 14 to see how
you are responding.
Red Flag: OB’s can talk the talk and make
it sound like they are “monitoring” clomid cycles to people who are not
educated on what true monitoring looks like
Me:
But no CD 3 ultrasound? What if there are cysts?
OB:
That's normally not an issue.
Red flag: Cysts can be a HUGE issue, and
starting a cycle with cysts can cause irreparable damage to your tubes
Me:
But what if there *are* cysts, since you said I have PCOS tendencies- I'd
prefer to not end up in the ER with a very large cyst rupturing.
OB:
It's not our normal protocol. That's a lot of money that doesn't need to be
spent.
Red Flag: It’s worth it to me! It’s my
health we are talking about. An ounce of prevention is worth a pound of cure
Me:
But what if I have a blocked tube? The Clomid won't do me any good
OB:
That's probably not your issue
Red Flag: The OB has never even done an
internal diagnostic such as an HSG. It’s highly presumptuous to say that I don’t
have a blocked tube.
Me:
But what if it is- how do you know it's not, and I don't want to waste one of
my 6 cycles of Clomid
OB:
The "6 cycles of Clomid" is a myth. As long as you respond well,
there's no max
Most doctors agree that more than 6
cycles of clomid can lead to incredibly thin lining making pregnancy nearly
impossible to achive, and there is conflicting evidence with a possible cancer
link.
Me:
My biggest concern is thinning my lining
OB:
Research shows that a thin lining has no effect on achieving a pregnancy
That’s a flat out lie!
Me:
But what about bloodwork and an SA?
OB:
The SA isn't necessary- you're clearly not ovulating
Me:
but what if we're in the 30% of couples who are dealing with issues from both
of us, again, I'd prefer to not waste time and resources if we don't resolve
all underlying issues.Plus, we're going on vacation in July, and if DH has any
sperm issues, I'd prefer he avoid the hot tub
OB:
That's not necessary. A hot tub won't affect his sperm count.
Me: And as for bloodwork, wouldn't it make sense to do a CD3 blood draw
with DHEA-s and LH/FSH to rule out adrenal hyperplasia, since we know I'll be
on CD 3 soon?
OB:
You present with typical PCOS symptoms. I don't think that's necessary.
ME:
But in ultrasounds in the past, they have not noticed the typical string of
pearls follies indicative of PCOS
OB:
you don't have to have cysts to be diagnosed with PCOS.
ME:
But if my DHEA-s is elevated, and it's adrenal hyperplasia, which presents with
similar symptoms, the treatment would be different
OB:
I don't think that's necessary- but if you insist... *sigh*
Infertility is expensive. I get
that. DH and I are 100% OOP for all treatment. But for me, the extra couple
grand is worth my long term reproductive safety.
OB’s specialize in keeping you pregnant, and making you un-pregnant at the end of 9 months. They are NOT fertility specialists- they’re surgical specialists. That’s why reproductive endocrinology is its own specialty. You wouldn’t go to a brain surgeon to deliver your baby, just because they also know surgery. This is the same thing!
OB’s specialize in keeping you pregnant, and making you un-pregnant at the end of 9 months. They are NOT fertility specialists- they’re surgical specialists. That’s why reproductive endocrinology is its own specialty. You wouldn’t go to a brain surgeon to deliver your baby, just because they also know surgery. This is the same thing!
Infertility Glossary
There are tons of abbreviations commonly used in the Trying to Conceive (TTC) and Infertility (IF) world So here is a glossary for reference.
3T/TTTC- Trouble Trying to Conceive (Infertility)
AF - Aunt Flo (menstruation)
AI - Artificial Insemination
AO – Anovulatory
AR - Assisted Reproduction
ART - Assisted Reproductive Technology
BC - Birth Control
BCP - Birth Control Pills
BBT - Basal Body Temperature
BFN or BF0 - Big Fat Negative (home pregnancy test result)
BFP - Big Fat (or Effing) Positive (home pregnancy test result)
BW or B/W - Blood Work
CB - Cycle Buddy
CBEFM - Clear Blue Easy Fertility Monitor
CD - Cycle day
CM - Cervical Mucus
CP - Cervical position
D&C - Dilation & Curettage
DH - Dear/Darling Husband
DPO - Days past ovulation
ENDO – Endometriosis
ET - Embryo Transfer
EWCM - Egg White Cervical Mucus
FET - Frozen Embryo Transfer
FMU - First morning urine
FRER - First Response Early Response
FSH - Follicle Stimulating Hormone
HCG - Human Chorionic Gonadotropin
HRT - Hormone Replacement Therapy
HSC - Hysteroscopy
HSG – Hysterosalpingogram
ICSI - Intracytoplasmic Sperm Injection
IF – Infertility
IR- Insulin Resistant
IRL- In Real Life
IUI - Intra-uterine Insemination
IVF - In Vitro Fertilization
KU- Knocked Up
LAP – Laparoscopy
LH - Luteinizing Hormone
LP - Luteal phase
LPD - Luteal Phase Defect
MC - Miscarriage
MF - Male Factor Infertility
O - Ovulation
OB – Obstetrician
OPK - Ovulation Predictor Kit
OV – Ovulation
P4 – Progesterone
PC - Post-Coital (after sex)
PCO, PCOD - Polycystic Ovary Disease
PCOS (POS) - Polycystic Ovarian Syndrome
PCP - Primary Care Physician
PCT - Post-Coital Test
PG - Pregnancy or Pregnant
PI - Primary Infertility
PIAC - Pee In A cup
PNV - Prenatal vitamin
POAS - Pee On A Stick
RE - Reproductive Endocrinologist
RPL - Recurrent Pregnancy Loss
S/A - Sperm/semen analysis
SHG – Sonohysterogram
SI - Secondary Infertility
TI - Timed Intercourse
TTC - Trying To Conceive
TSH - Thyroid Stimulating Hormone
US or u/s - Ultrasound
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