Tag: hattiesburg

Case Review

It’s been two weeks since we started grieving our last negative test. Two weeks I have been “hormone free.” Emotionally, we are still healing. It took less than two weeks for my endometriosis to realize nothing is holding it back any more. It’s time for the moving on.

The last week has been difficult, physically. Daily cramping and strong consistent pain is back to the point that it’s occasionally difficult to eat and it’s often difficult to sleep. I am going to work, and that’s about it. I missed homecoming at Southern Miss, I’m not very social, and I stay still a lot. I carry a heating pad in my purse. If you don’t see me plugged in somewhere, I’ve probably got one of those stick-on disposable heating packs strapped on.

We have now taken the next step towards IVF. We are having our case reviewed by the Center for Endometriosis Care in Atlanta, GA. This includes nearly 40 pages of “Potential New Patient” forms (not even “actual” new patient forms, those come later??), a 2600 word “Personal Narrative” on my physical/emotional/psychological experience with endometriosis, a picture of me and the Mister, and 150+ pages of medical records that pertain to endometriosis. Basically a manuscript, everything but the kitchen sink and a DNA swab. I’m sure that will come later. Until then, 200ish pages are currently on their way to team at the CEC.

This wonderful facility is the leading research center on endometriosis and has the largest case study on the disease (5,000 patients followed over 20 years). If anyone knows this disease, it’s these guys. We are hoping for an aggressive conservative treatment option that focuses on removing the disease from all organs and tissues, while leaving the necessary organs in place and properly plumbed. We have the support of both our doctor in Hattiesburg and our doctor in Jackson. We are hoping that if our case gets accepted, we will be able to have surgery soon.

We came to the decision that if we were going to do IVF, we wanted to do it to the best of our ability. My insides between my belly button and my kneecaps “kind of look like a war zone.” That’s a direct quote from my radiology tech. Clearly, it’s not pretty. Things don’t hang out where they’re suppose to, they don’t function like they’re suppose to. It’s just a mess, really. With IVF, we will undoubtedly be creating life. Those little blobs of cells will be my children, whether or not we see them grow that far. From the beginning, we want to give them the best that we possibly can. Isn’t that what parents are programmed to do?
I don’t want to put my little embryos up in a sketchy “pay by the hour” motel. Right now, I’m afraid that’s my current condition. I at least want to be able to give them a Marriott or a Hilton. An extended stay suite, if you will. I have come to terms with the fact that God did not make me like a Four Seasons. I am not a Duggar. We feel like having this surgery and removing as much of the disease as we possibly can will not only significantly improve my quality of life, but give our children the best possible chance at healthy growth in-utero. It’s not a guarantee. Nothing is a guarantee. We do feel like it’s the best we can offer, and we do not want to go into IVF with less than our best.

Sometimes during weeks like this last one, it’s easy to get sucked into a sad-sop trap. I have been diagnosed with a disease for which there is no cure. No one even knows what exactly causes this disease. It’s easy to let myself get overwhelmed and exhausted with this constant battle for normalcy. My daddy would never claim to be a theologian, and most of the time our conversations are weird, bordering on inappropriate (burps are rated and those stupid Sonic commercials make us giggle every single time). However, when he slips into Serious Dad, his advice is normally on point.

Pray like everything depends on God, because it does. Act like everything expends on you, because it does.

I have based much of my personal theology around this simple (and paradoxical) idea that my father has repeated to me since I was a little girl. God has called us to walk in faith. We must actively do (the walk) and we must actively trust (the faith) that He is greater. We have not been given an easy walk, and He has not given us the option to “sit” in faith. We believe that, if our case and treatment plan are accepted, this is the final step that lies between us and IVF. It will be invasive. It will involve at least three different organ systems, possibly more. We will know by the end of the month if this surgery is in our immediate future. That is a little bit scary.

We are still grieving what wasn’t, but we are also ready to see what happens next. It’s a little frustrating that we can’t flip to the end of the book and make sure everything turns out ok (you know you did that to make sure Harry beat Voldermort…).

God has been good to us. He has provided for us and sustained us. We know He will continue this work in us until its completion.

And Harry doesn’t die.

Round 4

After a couple of weeks of waiting, we’ve finally been able to start our 4th and final round of IUI. My cyst ruptured without causing too many problems (besides several days of fever and general feelings of icky-ness). Medusa is no longer “a problem we need to be concerned with”, and my hormones have jumped back into gear.

After the general tests and exam last week, DocJax cleared me to start round 4. We’ve gotten our meds and Mister has been giving me my injections every night this week. This round, the hormone migraines have been particularly difficult to reign in, but I seem to be getting a handle on them finally. We go for a progress check (and more blood work, of course) on Tuesday, with a procedure likely on Thursday. After that we will enter the two week waiting period for the last time in 2014. As we bought alcohol swabs and band aides at the pharmacy (yay, shots!), Mister grabbed a pack of blister-healing band aides.

Go ahead and grab these since they’re on sale. If we get another negative, I know you’re going to need to run it out, and it’s going to jack your feet up when you do.

That right there, folks, is true love. He gets me. My blisters/calluses also gross him out.

This weekend was suppose to be our first weekend with no minimal traveling, and we were looking forward to fellowshipping with other believers today. Other than Mister covering the game at Mississippi State and my responsibilities at a downtown event, our weekend was more or less “free”. Then significant car trouble (quite possibly in a location one might meet the Devil for dealings) at a very late hour and a tow truck that was in absolutely NO rush at all (Hail State, y’all) changed our down weekend into an impromptu road trip two hours north in the wee hours of the morning for a rescue mission. We finally all got home and in bed at 6:00am this morning. Shout out to my baby brother for riding with me and keeping me company, even though he had to work all day today. I am far to old to be pulling all nighters anymore, and I’ve now got an appointment with my eye doctor. Night driving is a lot more difficult than I remember. We didn’t make it to church a few hours later. The sleep was greatly needed, but we really miss the rest of our local body of believers.

This week brings more Jackson, more needles and tests, more salmon (omega 3s, y’all), and more football. It also brings a quick weekend trip to Memphis to see the first baby I have prayed for since half of her DNA was contained in a mature follicle. I’m told her parents will be in Memphis too, and we’re pretty excited about that.

We have decided a few things in the last few weeks of dealing with the cyst. As mentioned before, this will be our final round of IUI. We are still hoping that this 10-15% chance will be our yes, and this will be our last round for wonderful happy reasons. However, we are planning for other outcomes. If this round does not work, we will be moving on to IVF in the spring. After speaking with our doctors in Hattiesburg and Jackson, we have decided that our funds are better spent procedures with better odds and more doctor-control. We will spend the rest of the winter saving and praying and preparing. We are also gathering all of my records and sending them to a group of surgeons in Atlanta that specialize in the removal of endometriosis, and we are having out case reviewed. The Center of Endometriosis Care does amazing work removing endometriosis from all areas of the body (more on my particular case in a different post) and we are looking forward to hearing ALL of our options.

We will be taking a (much needed) vacation in December. A vacation from work, and a vacation from infertility. This season of our life has been overwhelming and over scheduled (I’m looking at you, football…), and we are in serious need of a recharge.

We are a little terrified. We don’t really feel like we know what we’re doing. We are seeking God and we are following where we feel He leads. Both IVF and surgery come with some pretty scary “what ifs” and procedures. Both are much more invasive, time consuming, and energy consuming. We know that before this month ends, we will be looking towards more invasive medical procedures, whether that be pregnancy (!!!!) or IVF/surgery. You are probably starting to grasp why we need a vacation.

I have the best friends, the greatest family, and the most supportive spouse to face this with, and that makes things a little less scary.

My Helper

It is recorded in Genesis that God took from Adam a rib and formed him a Helper: Eve.

That is my favorite definition of a spouse. Some people say they married their best friend, their better half, their soulmate, etc. When my Mister and I promised to love each other for ever and ever, and signed papers with the great state of Mississippi, we married our Helper.

This post is a shout out to the Helpers that married endometriosis and infertility.

I cannot imagine going through endometriosis or infertility without him. He has been my Helper with this disease even before we were married. My first surgery for endometriosis was 2 months before our wedding. My next surgery was before we’d reached our first anniversary.

He has helped shoulder the daily (sometimes crippling) pain that my endometriosis causes. He can go down the “feminine hygiene” aisle and not flinch, he can even pick out exactly the right thing by himself. Every.Time. He understands my monosyllabic communication when my pain reaches a 9.5 on the 10 point scale.

When we first started talking about infertility, I told him straight up that we both had to be “all in.” This couldn’t be “my” thing. He accepted that, and has been amazing.

Our first two rounds of IUI, Sister Nurse gave me my shots. I knew that these hormones make me a less-than-rational reactor at times, and I didn’t want to have any reason to take that out on Mister. According to him, however,

If I can give the cat her insulin shots, I can give you fertility shots. It’s basically the same thing, right?

You can giggle. I did.

For our most recent round of IUI, he gave my shots of liquid fire ant Menopur, and even gave me my trigger shot. It may not sound like a super marriage bonding moment, but it has been. It’s intimate in a way that I find very difficult to explain.

He has held me and cried with me every time a treatment has failed. He has gone to every single appointment with me. He is on a first name basis with Doctor in Hattiesburg, and at DocJax he asks just as many questions as I do.

He is a “fixer”, as most men are, and I know it bothers him that he cannot “fix” this for us. Our first years of marriage have not been normal. No one mentions endometriosis or infertility in premarriage counseling. We’ve both learned as we’ve gone.

He’s not perfect. Neither am I.
He’s made mistakes, but you will not find a list of them on this blog, or anywhere.

Now, as I wait for the wrath of Medusa the Cyst, he waits. This weekend, he’s been looking for quick trips we can take to help alleviate the stress and take our minds of the (many,many) negatives. He is working two and three jobs so that we can continue to pay cash for everything and save for possible future treatments. On top of those jobs this weekend, he’s taken care of me with a several day-long migraine.

I am married my nurse, my therapist, my back scratcher, my ledge talker, my negotiator, my hand to squeeze, my personal comedian, my live-in cook. I married my Helper. He is mine and I am his.

IUI

This is a compilation of questions that have been asked of me by many friends and family.

Warning: Names of specific organs that only women have will be used. If that makes you uncomfortable, I don’t really understand why you want to know more about IUI.

What is the difference between IUI and IVF?
IVF = in-vitro fertilization
IUI = intrauterine insemination
IUI does not require the FE to put sperm and egg together to create or handle an embryo.
The sperm is collected, “washed”, and treated. The doctor is able to determine if the sample is of adequate quality.
A catheter is inserted through the cervix, into the uterus, and the sperm is injected. This allows the sperm to bypass the majority of their required journey, giving it a longer life and a higher chance of meeting the egg.

Do they knock you out? Does the procedure hurt?
No, and it’s not comfortable. You are fully conscious for this procedure. It’s very short, and not completely awful, but not something you’d choose to do in your free time. It’s a lot like a Pap smear, but more invasive, more uncomfortable, and it takes a little longer.

Are you on any medication?
A few. I have taken estrogen-binders in the past (Clomid, Framara) that were ineffective for me.
When I start a cycle, on the third day, I take subcutaneous (in the skin) injection in my lower abdomen of Menopur. It burns like a million fire ants all bottled together.
When I have follicles (release an egg) that reach the right size after several days of Menopur, I receive an intramuscular trigger shot of HCG (causes the follicle to release the egg) in “the hip”.
A day or so after the trigger shot, we go in for the IUI procedure.
After the IUI procedure, I immediately start progesterone, twice a day. This helps the uterine lining stay thick, and gives me a greater chance of “catching” and “keeping” a embryo, and sustain the pregnancy during the first trimester.

Is it covered by your insurance?
Yes and no. We are abundantly blessed with amazing insurance that covers almost everything. Our insurance has covered all of our visits, lab work, and ultrasounds. That may not sound like much, but when you are doing it multiple time a week, it adds up.
Our insurance does NOT cover our medication (shots, syringes, needles) or the actual procedures. That is a significant cost.

Are your chances of multiples increased with this treatment?
Yes. So far, all three treatments I have had have been with two follicles at the ready. Two follicles = two eggs. Two eggs = possibility of fraternal twins. We have a very responsible and conscious doctor, and he will not trigger or perform the IUI procedure if there are more than three follicles. The risk to the potential mother is too great, and he cannot guarantee a healthy mother and that many healthy babies past three.

How many time will you do IUI?
Four. Past that, we feel as if our funds, time, and energies would be better used towards IVF.

What is your chance of pregnancy with each round?
10-25%.

I think I’ve hit most of the major questions regarding IUI. I hope to address
more questions on different subjects at a later time. Did I miss anything?

Rinse and Repeat

At dark thirty this morning, we headed to See DocJax up 49N a ways. No matter when we leave Hattiesburg, we will always hit gridlock traffic in Richland. Coming and going, it’s the most miserable part of our trip. It boggles my mind that it is 2014, and no one in our great state has built a way around the misery that is Richland, but I digress…

With a fresh cycle starting, we went to see DocJax to get the all clear to start our next round of treatments, which would start with Menopur shots tomorrow. Checked in and weekly lab work done, we made our way to the ultra sound room.

Immediately, once the ultra sound started, DocJax gave me a familiar, “Oh. Hmm. Well…”

That’s never good. Ever.

I looked up at the screen to try and decipher some of the nonsensical white noise (which I’m getting pretty good at thanks to the many I’ve had), and I see a familiar large black blob.

Medusa.

He pans over to the left and clears that side as “normal.” Normal is good. I love normal. I wish I could live in Normal. He pans back over to the right and starts to measure on his display.

Medusa the Cyst is back, at 5 cm. it is completely blocking my entire right ovary, as it is 2x bigger than the ovary.

DocJax: When will you start your next cycle?
Yesterday.
DocJax: Well, shoot. We can’t do anything until it ruptures. It doesn’t look like it will be rupturing with this cycle, since it’s already started. We have to wait, it’s just too dangerous right now.

So we went back down 49S.

We were sent home with another ticking time bomb, to wait for it to explode rupture, and pray that it does so (again) in a way that doesn’t require hospitalization.

We weren’t really expecting a breathing period, a pause between cycles. This is our last try at IUI before moving on to IVF and another potential surgery. Everything has been put on pause until this giant sucker decides to deflate. Again.

So we will wait.

It will not be pleasant. I will feel pretty crummy. Such is the lot in life with ovarian cysts, until someone (probably a female) figures out a better way.

Until then: ibuprofen, yoga, deep breathing, heating pad, prayer, rinse and repeat.

Surely goodness and mercy will follow me all the days of my life, and I will dwell in the house of The Lord forever. Psalms 23:6

Look out, Jackson town

Every time we get in the car and head to Jackson to see my FE, I get Jackson stuck in my head. Good thing I love some Johnny and June Cash.

Our first visit with my FE was at the beginning of April, 2014. My Mister now goes to every “uterus themed” doctors appointment with me. At the beginning, that made him super uncomfortable. The whole idea of “the chair” completely freaked him out. Like the champ he is, he got over it. REALLY quickly. He’s a fantastic support system, and takes his job very seriously. When seeing an FE and starting fertility treatments, both players have to be all in. All chips are on the table. It’s high stakes, and there is no room for wishy-washy.

Our first visit was just suppose to be a consultation. “Regular” chairs, everyone keeps all of their clothes on, no funny business. DocJax (FE) is wonderful, supportive, and explains our options to us. With pictures!. Mister akinned it to a Madden play illustration. Yay, football!
After our chat in regular chairs, all of our clothes, and no funny business, DocJax decides he’s ready to get started that day, if we’re in.
Chips on the table… All in.
Mister enters the room with the chair. Like a champ. Shows no sweat. I had my first fertility focused ultrasound.
Where we discovered a fist sized cyst, just hanging out on my right ovary.
huh.
I named her Medsua. She got a “Good Lord!” from DocJax, and he’s seen a lot of scary stuff.
I name a lot of things. Maybe it’s a coping mechanism? That’s for my therapist to decide at a later date.
On the other estrogen blockers I had been taking, follicles (that’s what releases the egg) had developed, but never ruptured (released an egg). When that happens, they just keep growing, and growing, and growing… Until they rupture.
I’ve had cysts rupture before. It sucks. It’s excruciatingly painful, usually involves significant blood loss, and no ER will do anything for you unless you can prove to them that you are hemorrhaging to the point of losing vital functioning. They’ll pat you on the head, give you some pain medicine (maybe), monitor your vitals for a bit, and wish you luck in the horrible lot of life that is “ovarian cysts.”
This cyst was bigger than anything I’d ever had. We needed it to rupture, but we needed me NOT to end up in the hospital. We gave it a week, with a surgery to drain it as the ultimatum. Within a week, I woke up with excruciating pain in the middle of the night. I knew what it was. Enter learned pain management techniques of alternating pain relievers, yoga, heat, deep breathing, and pleading with the Good Lord for mercy and relief.

Fertility treatment is expensive, and you’re lucky if your insurance covers even the doctor visits. You can forget coverage of medication and actual procedures, especially in the forward-thinking State of Mississippi. I say all that to say, I went to work. The Bushes have bills! I grabbed a giant protein packed smoothie and started to replace fluid volume. I continued my pain management regimen. Thankfully, I got to sit at my office (where I am the only one there) most of the day. I was quite dizzy and in a good bit of pain, but I got through it.
God will always give you exactly what you need, when you need it. That is a recurring theme in our story.
We saw DocJax the next morning. Our ultrasound showed the Medusa had indeed deflated. And I did it with out the hospital, or missing work. That earned me a DocJax high five. We had our medication shipped overnight from a special Fertility Pharmacy in New Jersey.

DocJax accurately assessed that estrogen-blockers didn’t work for me, so he went straight for the big guns. He started me on 75 mg of Menopur (highly purified and concentrated LH and FSH), injected subcutaneously (in the skin, similar to how insulin is injected) daily, for several days. I was monitored every other day, to make sure Medusa did not return, and to make sure my ovaries didn’t all of the sudden have an identity crisis and think they belong to OctoMom.
Being monitored every other day means driving to and from Jackson. Every.other.day. As stated before, the Bushes have bills! If we’re going to pay for these treatments, we’ve got to work. So all of our Jackson appointments are bright dark and early in the morning. It makes for rather long days and frequent oil changes.

After 8 days of liquid fire ant Menopur injected into my belly by the greatest sorority sister/friend/roommate/neighbor a girl could ask for, I had two follicles ready. Sister Nurse gave me my trigger shot (10,000 units of HCG) right in muh buttocks (thanks, Forrest Gump). I was pleasantly surprised when that one didn’t hurt, initially. Twenty minutes later, I thought I’d been shot with a bullet rather than an IM needle. I sat funny for 3 days.

We had our first IUI procedure 12 days after Medusa bade us farewell, and I started heavy progesterone supplements immediately afterwards.

One week later, I had my progesterone checked, per doctors orders. My numbers topped the chart. Actually, the chart didn’t go high enough to support my numbers. I’d ovulated, and DocJax and his wonderful nurses were thrilled and incredibly hopeful. It was the first time Mister and I had ever received any good news regarding Ursula (the uterus… I name things). I almost didn’t know how to respond to good news!

A week after that, I went for the test.. The HCG and progesterone test. This would tell us if we were finally pregnant. I cannot pee on a stick, due to the outrageous amounts of hormones I am on, and expect an accurate answer. The blood test came back negative.

We were devastated. We had hoped for the first time in so very long, and we were crushed. I cried a good bit, got a box of Cheez-Its, and had a slob night. I read about Hannah and Rachel and Elizabeth and Sarah and the great women of scripture that struggled with being “barren.” I read how God sustained them, how He blessed them, how He kept his promises to them, even if it wasn’t how they’d planned.

Five days after our first negative, we started our second round. More shots. More visits to Sister Nurse. More monitoring. More bruises. Same song, new verse. The good news was my body responded even more quickly to the meds than it did the first time, with two more fresh follicles. Our second IUI procedure was three weeks after our first. My progesterone came back with fantastic numbers. All of this is very encouraging.
We still were not pregnant.

Because of the drugs, my usual month-long cycle speed was amped up to 3 weeks. In six weeks, we had done two fertility treatments. We needed a break, physically, emotionally, and financially. Did I mention we had to buy a washer and a dryer in the middle of all this? And that we were paying cash for the treatments?
God will give you exactly what you need, when you need it.

We took a much needed two month break. We worked, we prayed. We sought wisdom from friends and family. I didn’t count days or record temperatures or over analyze every pain and discomfort and feeling. I ran more. We did a LOT of weddings (Mister is the greatest photog). We gave Sister Nurse a break from seeing us before her nightshift every day. She loves me. I’m the best patient, really. And she doesn’t judge me when unladylike words jump from my mouth because those shots burn like crazy.

We took a collective deep breath, and geared up to start again…

Every story has a beginning…

My fertility story starts at puberty. I just didn’t know it yet.

Endometriosis plays a very large role in our fertility problems. The starring role. Really, it’s a solo act. I’ll cover more on my disease(s) later, along with importance of early diagnosis and adequate treatment.

As soon as my Mister and I promised to love each other forever and ever, my doctor here in Hattiesburg started encouraging us to “go ahead and start a family.”
Slow your roll, Doc! We just got back from the honeymoon! Don’t we get some “just us” time?
No. Not really.
As a side note, I love my Doc here. Can’t say enough good things about him. He’s quite literally seen me (as a person and as a collection of malfunctioning parts) at my worst, and he doesn’t run the other way when he sees me coming. Neither do his nurses. They’re all on our Christmas card list. We’re that close.

I opted for the DepoProvera shot as a last ditch effort to control my endometriosis and buy us some “just us” time. It was a nightmare. It may work for some people, but I’m not one of those people. I cried at every.single. Olympic medal ceremony, regardless of whether or not the USA was anywhere involved. My endometriosis also continued to spread. I lasted 6 months.

In November of 2013, we decided we’d listen to our doc, and go ahead and try for our family. We’ve always wanted a really big one, might as well get a jump start on things, right? It was also a “do it now, or you may not be able to do it ever” kind of thing. Scar tissue and endometriosis is no joke. No pressure.

January of 2012, we officially started “trying.” My body basically flipped me a very unladylike like middle finger. I went 6 months without a regular cycle. No amount of added hormones to “force” one worked. It was finally a change in diet, a few natural supplements, a full moon, and a whole lot of prayer that got me back on the regular track.

We started Clomid in the summer of 2012. It is the first drug most docs will try, as it works on most people.
I am not most people.
I maxed out my dosage with horrible hormone results. We never even got close to the right number, much less made it to a pregnancy test. We discovered that I had completely stopped ovulating.

Clomid check.

Next cam Framara. Originally used as a drug to treat women with estrogen based breast cancer. As it turns out, you can use it on the right days, and with most people, it will trigger ovulation. No where close.
I am not most people.

Framara check

Now Doc adds Metformin, a Type II diabetes medication that regulates sugar absorption and insulin production.
Side note: I’m hypoglycemic.
Keeping my blood sugar above an 80 became a serious chore, but I did it. No one judge me for my stash of M&Ms in my nightstand. And purse. And office desk. Back off. On that combination of drugs, most people see a leveling of hormones. Restores them to a zen place, if you will.
I am not most people.
My system went bonkers. Scratch that cycle. Doc called a mulligan. Re-do! My hormone numbers came back almost in the negative. That’s almost not possible. Almost.

My sweet, wonderful, smart, and patient Doc finally threw up his hands. He made a few phone calls, and sent me to Jackson, MS, as that is the closest Fertility Endocrinologist to Hattiesburg.

At this point, I’ve been on estrogen-blockers for over six months. Guess what thrives on estrogen?
Hair follicles.
My hair thinned so badly, I had to cut about 7 inches off. I now wear my hair shorter than I’ve ever had it since a very unfortunate haircut in middle school. My stylist is fantastic, and didn’t even give me time to cry about it. No time for that.
Now, I have “sprouts” all over my scalp. Baby hairs everywhere. I have to pluck my eyebrows again. I can’t skip a whole week of shaving. It’s coming back, slowly but surely, and no longer falling out in very scary chunks.

We’ll continue our journey in Jackson…