Where Dr. Seuss and Endometriosis Awareness Month meet.
Whelp, we’re doing this.
January 18 – discontinue birth control (lol)
January 22 – initial u/s, start stim protocol
January 26 – monitoring
January 28 – monitoring
January 30 – monitoring
February 3* – retrieval, 2 days bed rest.
February 8* – transfer, 3 days bed rest, begin post retrieval protocol
February 18* – beta 1
*give or take a day, subject to change, pending no OHSS
So, there’s that.
Its scheduled. We had our teaching session today in Jackson after our initial baseline assessments. All the tests, all the poking. Four shots a day pre-retrieval, 1-2 shots a day post transfer. Lots of supplements, lots of pills.
My doctor paid me the nicest compliment today:
Your uterus is boring and warrants no comment.
That’s seriously the nicest thing anyone has ever said about my uterus. I was thrilled. Usually I get a lot of “hmms…”, “uh-ohs”, and “yikes!” Is now a good time to plug excision surgery? Who am I kidding. Its always a good time to advocate for efficient and effective treatment of endometriosis.
Educate. Empower. Advocate.
I wore new socks I got from my #ttcmugexchange2015 buddy, and boy did they give my doc a giggle.
He didn’t see them until he was already in the middle of my exam. Then he laughed so hard he had to stop what he was doing and get himself together.
You’re SO “gangsta”, Anna.
I KNOW, RIGHT?
As much as I hate the fact that I have to go to a fertility doctor to even have a chance at growing my family, I was reminded today what a rockstar team I have there. My nurses both hugged me, gave me “real” advice (“you’re going to be emotional during all of this, because, well my God, look what it involves? But the b**** factor of these meds is nothing like Clomid was…”), laughed with me, asked about my pups, and answered every question I had (all day… I’ve already emailed them twice since this morning).
As we’ve drawn closer and closer to appointments, and as we’ve started taking the first initial steps down the IVF road, my anxiety as skyrocketed to levels I didn’t even know I was capable. The funny thing about my anxiety – its all somatic. In my head, I’m totally fine. I have NO freaking clue that I’m anxious. But I’ll get off the phone with my clinic after scheduling and appointment or confirming a payment figure, and all of the sudden I can’t turn my head to the right, or its hard to breath, or I start to stutter, or I will talk 90 miles an hour. After a somatic symptom pops up, I’ve learned (through some therapy) that I need to mentally recognize the fact that I am stressed, and take active measure of de-stressing, even though I don’t feel stressed. Does that make sense? Its been a weird couple of months.
I actually went to my GP about it after a severe stuttering episode, ready to seek a little pharmaceutical assistance. I brag on my doctors all the time, and with good reason. Doctors are so smart, so much smarter than me. They know so much! I have a fabulous team. But they are exactly that – a team. To get anything done, they all have to be in agreement. My GP is not going to prescribe me anti-anxiety meds that maybe my FE has an issue with, or my OBGYN would not want me on while pregnant, or that could possible interfere with my migraine protocol my neurologist has given me. See what I mean? Its like assembling the Avengers just to get some Zoloft. This makes me Nick Fury, right?
Turns out, not all of my Avengers saw eye-to-eye on this. So yoga, the never ending grace of God, a new therapist, and a new coloring book it is.
Next week, Mister and I will celebrate our 4 year wedding anniversary. Its a weird fact that we’ve been on this trying-to-conceive journey for 75% of that time. My substitute hairstylist (long term stylist is on maternity leave, ironically) asked me last week if we had anything special planned for our anniversary, and before thinking about it too hard, I said,very excitedly:
Yes! We’re doing IVF!
She paused, a little shocked I think, but to her credit her response was perfect. Wow, congratulations, that’s huge, its a drag you have to do this but how exciting that you are able to, y’all must have been planning this for a while, etc. PERFECT. Stylists are like a special hybrid of therapists and sorority recruitment. How many problems to they hear in a day? They are NEVER short on small talk, they probably have dirt on half the town, all while balancing ridiculous expectations of “get the dead ends off” and “JUST a trim…” I’m on a rabbit trail, I know, but clearly I’m comfortable in my salon, and clearly this woman is no stranger to weird answers to questions.
But yes. IVF is our big anniversary present. Its suppose to be the flowers and fruit anniversary, but we’re being modernly liberal about it, and going for “be fruitful and multiply.”
Through all of this, I’ve been shown time and time again the beautiful relationship between God’s sovereignty and modern medicine/science. Its is absolutely ridiculous to me when we try to separate the two, only accepting one or the other. God has revealed Himself so much to me through research and finding wonderful physicians and healers who work miracles under a microscope. Another thing we’ve learned is how common this problem is, how many other families are hurting. After some discussion with one of our pastors, Mister and I will be leading a co-ed “Fertility Care” group at our church. This is meant to be a place for families struggling growing their family (infertility, secondary infertility, infant loss, miscarriage, etc.) to come and find peace and understanding in Christ. Our goal this entire journey has been to bring glory to The Almighty, whatever His answers may be. By investing in other families and shedding the shame and stigma that comes with infertility, particularly in the deep south, I think we can bring comfort and encouragement to others. If you’re in South Mississippi and interested in a biblically based support group, shoot me an email at firstname.lastname@example.org; let’s talk.
We covet your prayers as we continue this winter. Its going to be a surreal journey, one I’m looking forward to chronicling.
Now to Him who is able to do immeasurably more than all we ask or imagine, according to His power that is at work within us, to Him be glory in the Church and in Christ Jesus, throughout all generations, for ever and ever! Amen!
Ephesians 3:20, 21
“Good morning, Mrs. Bush. You are endometriosis free.”
I don’t normally appreciate any greeting, in person or electronic, before 8:00am. Particularly any that refer to me as formally as “Mrs. Bush”. I also don’t normally hug and cry in front of grown men I’ve known for less than 36 hours. Friday, April 17th was a weird day.
It’s been ten years since I was last in Atlanta. Ten years ago, I was doing one of my first and biggest “grown up” things by hopping on a plane with my best friends and spending the next 3 weeks visiting friends in Germany. While at the airport in Atlanta, I got super nervous, started pouring sweat, and then emptied my stomach into three (yes. Three) “turbulence discomfort” bags, all before taking off. I’ve done a lot of growing up since then, but my somatic anxiety tells haven’t changed one bit.
Last Wednesday, after meeting my parents at Big Bad Breakfast in Birmingham (excellent recommendation, Brittany!) for my last real-food meal (for a whole week), we hopped in Favre (my sweet new Southern Miss gold Jeep) and headed to Atlanta for my pre op appointment with the Center for Endometriosis Care.
I was given the opportunity to enroll in two separate studies regarding endometriosis, with one aiming to genetically link endometriosis and infertility. All of the “awareness” noise we make is meaningless without action behind it. I’m very excited to be a part of the action.
After a conference with my wonderful doctor (he likes to meet you formally before he meets you on his exam table), I had a rather painful exam. Doc diagnosed me with pelvic floor dysfunction. I’m still learning what that is and what that means, but here’s the short (and Internet appropriate) version: my pelvic muscles have been spasming like crazy for a long, long time. When a part of your body feels pain, it contracts. This part of my body has been feeling a lot of pain, for a long time. It keeps contracting, over and over. Now, it has a hard time knowing when that’s appropriate. This is one of the main causes of my daily pain with things that shouldn’t be painful. Next month, I will start a very specific form of physical therapy to help reprogram my muscles. More on that at another time.
I was sent to our hotel with a lovely gift bag. Inside was a humongous bottle of Miralax, some Dulcolax, lots of Gatorade, and a Fleet Enima. This goes to show that with proper southern hospitality and etiquette, a colon cleanse can look like a spa gift basket. Sounds like a party, right? It wasn’t that bad. Not something I’d actively choose to do on a Wednesday night, but I know it could have been a lot worse.
As mentioned above, my anxiety lives in my tummy. Occasionally, it pops up to make itself known to everyone else. My anxiety heaves made their appearance once I was in the pre op area, putting on the awful gown and getting my IV Thursday morning. More props to my nurse for being Johnny on the spot with the bag and ear sticker. Considering I had just emptied the contents of my entire digestive system a few hours earlier, there wasn’t much to put in said bag. They started giving me ALL of the anti-nausea and anti anxiety drugs, which was super. Shortly after, my doc came in, cracked a few jokes, and then did the most wonderful thing. He took my hand and put a hand on Mister’s shoulder, and he prayed over us before surgery. After a kiss from mama and daddy, they gave me the real good stuff, and I woke up a few hours later with searing pain in my right side. This was odd to me, even very drugged, as 99% of my pain has always been on the left.
I have very vague memories of the remainder of Thursday. I know I had a pain medicine pump with a button. I know that button didn’t work for the first few hours, and Nurse Melinda was very impressed with my pain tolerance. I know I made mama text Student Doctor Bestie and ask her why I could taste everything they put in my IV. I know I hated those leg compression things, almost as much as I hated the hospital gown. That thing went as soon as I had the faculties to sit mostly upright with some assistance, and on went my leopard print gown with matching robe. Leopard is a neutral and is flattering on everyone.
I was informed later Thursday and again on Friday morning what all happened on the operating table. I had a cystoscopy and a hysteroscopy (a look around inside my bladder and uterus, respectively), and those areas were clear and free of endometriosis, fibroids, or polyps. I had three small incisions: belly button and one near each hip, where my doc excisised all the endometriosis he found. I had a presacral neurectomy, and a surprise appendectomy. Turns out, my appendix had endo on it, and was “glued down” to my intestines. Doc didn’t like how it looked, he was in the neighborhood, so PEW PEW! There it went. I’m sure God gave us those things for a reason, but I can’t say I miss mine. This explains the pain on my right side when I woke up.
The presacral neurectomy has been the biggest adjustment for me, so far, and was my biggest obstacle in the hospital. Nerves are important, and the ones down there are in charge of a lot of stuff. It took me a solid 24 hours before I regained the noggin to muscle control that one needs to go to the bathroom. It took some serious focus and a catheter at 3:00 am before my body figured out how to empty my bladder all by itself. I got a high five from Nurse Melinda once I did figure it out, though. Friday morning, my doc came in and gave me the only news worth waking up at 7:15 with a catheter taped to your leg to hear. I am endo free. He got it all. The chance of recurrence (regrowth) is less than 5%. My endometriosis is in remission. The good news didn’t stop there. Doc had originally told us that we could start IVF a month after surgery, so we scheduled our first cycle to start in June. However, he has encouraged us to wait 3-4 months. Not because of healing time or because I wouldn’t be able to handle the treatments, but because he thinks he has fixed our problems. He has encouraged us to give the good old fashion way of conceiving a few months, because he believes it to be possible now. He hugged me again, blessed us both, I cried, and then Mister took me home to nap where nurses wouldn’t bug me or poke me. Saturday we went to Steak and Shake where I had a cookie dough milk shake, and on Sunday, Favre brought us home.
I went back to work yesterday. I’ve gotten a lot of surprise about returning so soon, but I promise, doc said I could sit at my desk and do stuff. It helps that I love my job. It helps that my property is small, and I can plan my day around specific needs (like being still). It also helps that I have a rock solid work family. I work in a relatively new company that makes a point of rallying around each other and supporting their managers and properties in any capacity. I knew this on the professional level already, but they have gone above and beyond anything I expected with this surgery and potential IVF. I have personally heard from my direct supervisor, my counter parts at other properties, the president of my company, and a few of the owners, multiple times over the last week. Each time they have made it a point to be encouraging, supportive, and to make this time as easy as possible. They didn’t judge me when all the feelings came out and I cried after a simple “safe travels”, either.
I am still sore and moving a little slow. I probably will be for another week or so. I come home from work and immediately sit down, with the intentions of doing nothing for the rest of the day. So far, that’s working out great. We have wonderful friends bringing us meals while I continue to heal and figure out what “normal” is. I have hurt every day for so long, I have no idea what endo-free life is going to look like in practice, but I’m pretty excited to find out.
While this month has been immensely stressful, it has been full of encouragement and hope. There are a few uncertains still, and I have a feeling that pelvic floor therapy is going to be another adventure. We are healing. We are encouraged. We are hopeful. We are well fed. And we are His. To God be the glory, great things He has done.
Hurry up and wait.
That has been our lives, it seems, since Christmas. Lots of waiting. Waiting for phone calls from doctors, waiting for paperwork, waiting for insurance, etc. We’ve still got some waiting to do, but there’s now a light at the end of the tunnel.
Excision surgery is set for April 16th in Atlanta with the Center for Endometriosis Care. A plan of procedures has been made, my employers have approved the necessary leave time, and our insurance companies didn’t laugh at us. I will be having a cystoscopy, hystroscopy, laparoscopic excision of existing endometriosis, hysterosalpingogram, and a presacral neurectomy.
Those are all great big med school words, and I had to google the last two. As big and scary as it sounds, it will be three small incisions to get in, all of the major work happening under the skin. Two of these procedures are necessary for us to start IVF, so it’s nice to go ahead and knock those suckers out on one operating table. One of these procedures (presacral neurectomy) is actually the removal of the presacral nerve, as it originates from the base of the spine, splits, and wraps around the uterus. This is admittedly the more invasive procedure. My current OBGYN in Hattiesburg once told me that my body was actively having contractions, just like labor contractions, every week, dealing with and trying to process the abnormal growths of endometriosis. He jokingly told me that labor would be a breeze for me, and then wisely moved out of arms reach, lest I go to swinging. The removal of this nerve will eliminate the pain caused by these contractions. In that same thought, a side effect is that I may not feel contractions (that actually bring about a baby) should I get pregnant. As I sit here towards the end of a really hard and painful week dealing with endo, I just can’t be mad about that. Contractions for years, with no baby? Pretty sure I’ve earned it.
April 4th, I will be running my last half marathon with rampant and unchecked endo. I’ve run the distance before. I’ve run this exact race before. This race, however, will probably be an emotional one. It will hurt, it won’t be pretty, and it sure won’t be fast. It is the most ladylike way I can think of to give endometriosis the middle finger. Will I be cured after this surgery? No. I will always live with, always fight this disease, until the day the Almighty calls me home. There is no cure. Yet. The best I can hope for is remission, until the day they find a cure. If I can run my halfs and finish my full marathon with is disease in full force, unchecked and running amuck in my body, I just might be able to fly in remission, sans pixie dust.
Another big date has been set, and an appointment has been made. We have our initial appointment to start our first cycle of IVF on June 1st in Jackson. My wonderful doctor moved clinics on me (just across town), and joined another FE. With that move came a few new nurses and staff. I was wary, because I’m very emotionally attached to my IUI nurses. I don’t just ugly cry in front of anyone, and “concentrated lady feelings” come with a lot of ugly cry. They reassured me they were still there, there’s just more of them. Since he has joined up with another doctor, their pricing structure has changed and is actually more affordable than we were initially planning. Medications will be ordered, our wine shelf will again become the “lady feelings and needles” shelf, more awesome band aids will be purchased, and the ovarian stimulation will begin on June 1st.
So far, these two things have been just a concept. Now, they are hard dates. I can count down to this, look forward to this. I know that I could wake up on April 17th and be well on my way to remission. By the end of April, there’s a good chance that I will be virtually pain free, with every organ system south of my rib cage functioning properly. If my prognosis is as good as it’s expected to be, we could be parents to itty bitty blobs in Petri dishes by June. I could ugly cry just thinking about it.
I have hurt for 15 years. I’ve gone to school, gone to work, gone to church, gone running, and lived life with this for more than half my life. Not because I’m brave. Not because I have a high pain tolerance (that’s something you develop out of necessity, in my opinion). Not because I’m “handling this well.” Because this has been my life, and it has to be handled. I can’t ignore it. I get up and deal with it, because that’s what I have to do. This isn’t the way most little girls imagine how their family would come to be, but I am already seeing God be glorified in the process.
We do have some specific things we covet your prayers for:
- Preparation for surgery: Finacially, that we would use what God has blessed us with wisely; physically, that I can maintain a healthy weight up until surgery, as I will likely lose a good bit immediately afterwards, and that all surgery prep will go smoothly; emotionally, that my pre surgery anxiety will be replaced by His peace.
- Procedurs will be uncomplicated, go as planned, and nothing extra be needed.
- Healing will happen as planned, with no complications, and I will be able to return to work and life on schedule
- Safe travels: Mister and I, along with my parents and my sister, will be in Atlanta for 5 days. It takes a village, and God gave us a good one.
We still have a long way to go, our journey is far from finished, but our God goes before us. Sometimes he is a cloud, sometimes he is a pillar of fire, but His presence is always known. We are His, and He knows our babies’ birthdays.