Category Archives: Endometriosis

Endometriosis Surgery – Check!

Where to begin? The past two weeks have been insane. Chalk full of unexpected blessings, changes, and trauma.

I flew to Gig Harbor, WA almost 2 weeks ago to have surgery by Dr. Mosbrucker, an endometriosis specialist, and Dr. Pai, a general surgeon she works with. My Mom accompanied me for the entire trip while my hubby took time off of work to be with the kids.

The surgery was expected to be 3 hours long. I was in pre-op, getting my IV placed by one of the nurses, when the anesthesiologist came in and introduced herself. She began to tell me, in her kind, nonchalant way, that I would be having the largest endotracheal tube placed down my throat, and it would be placed very deep into my left bronchial, in order to keep mainly just my left lung inflated while they operated on my diaphragm on the right side. She continued on to say, that, oh by the way, I would also need an arterial lined placed for the surgery (this was to be placed after I was asleep, but before the surgery started), and also a second IV. I didn’t have a huge amount of time to process this info, thankfully. I texted my hubby that I loved him, I gave my Mom a hug, and to the OR I went.

The bruise left over from my arterial line. Sometimes I think my insides are healing up faster than this yucky bruise.

Ironically, in the weeks leading up to my surgery, I had told a handful of people that if I made it out of surgery without a chest tube, I’d be happy. After all, chest tubes are super painful. And not only that, but it would mean that the surgeon didn’t have to perform a full resection on my diaphragm, leaving my thoracic cavity untouched. Ultimately, it would mean that the endometriosis hadn’t grown all the way through my diaphragm, and that the surgeon had been able to essentially “scrape” it off instead of cutting it out.

I had also hoped that I was completely wrong about all the symptoms I had been having up to that point. I had hoped that perhaps my endo wasn’t all that bad, and that maybe my surgeon could save my ovaries and uterus. I made a point to let her know that I was just fine with not having a hysterectomy, if she thought things were good enough to save it all. She said she would use her best judgement, and I was fine with leaving the decision with her.

Let’s just have a good laugh right now about how delusional I was about the status of my endometriosis. Let’s just get the details out there: My surgery was seven hours long, not 3. I had FULL thickness endo growing through my diaphragm. I did indeed wake up with a chest tube and resection of my diaphragm. My surgeon said I had more endo on my diaphragm THAN SHE HAD EVER SEEN (the good news is that it wasn’t in my thoracic cavity!). I had full thickness endo growing through my small intestine, close to the illeocecal valve, and so therefore had a small bowel resection. I also had endo on my colon, which was removed. I apparently had endo all over the place, so my surgeon made the decision to do the hysterectomy. There is one bright spot – the better looking ovary, my left ovary, was covered with a lot of endo, so she literally cut about half of my ovary out and sutured it back together. Apparently ovaries regenerate like livers, so it’s supposed to grow back. Therefore, I get to keep an ovary and do not need hormone replacement therapy.

Instead of staying in the hospital overnight, I wound up in the critical care unit for two nights and then was transferred to the med surg unit for two more nights. My surgeon wouldn’t let me leave Gig Harbor for four more additional nights, so my Mom and I had to book another Airbnb, switch to a later flight, and rent the car for four more days. It was not cheap to do this!

I don’t have a lot to say about the hospital stay except that I flooded my room while taking a shower. Major OOPS! I had put a towel on the floor and didn’t notice that it was covering the drain. All of the sudden I heard my Mom shout from the other side of the door “Emily! There’s water out here!” Enter the nurse, the charge nurse, the nursing aide, and environmental services to clean up all the water outside the bathroom (it was more than an inch deep). I was so mortified that I cried, but the nurse thanked me for giving them some excitement that afternoon.

As far as views from a hospital room goes, I’d say this one was pretty good.

When I finally got out of the hospital, the Airbnb we stayed at was really close to the water and they had a beautiful yard that we got to look at through a sliding glass door. My Mom was a wonderful companion and excellent nurse. She was working on knitting a sweater for my sister, and it was the most complicated pattern ever. But it kept my Mom occupied while I slept, or rested, or sat and watched HGTV with her. I was extremely boring to be around! She kept me fed, helped me get out of bed, talked with me, ran to the store for me, and was just generally great to be around. I can’t thank her enough.

I loved the view!

My Mom working on the sweater while we got some fresh air.

I called my kids and hubby twice a day and we video chatted each time, which was a huge blessing. I was gone from them 10 days, which is just about forever when your kids are little. I missed them so much. (I cried about that too.) My hubby always seemed to be in good spirits and things seemed to be going well with the kids. His Mom came over a few times to help out, and my sisters came as well. One of my sisters brought a meal, which was helpful.

I did end up at the ER a day after I got out of the hospital. I had a sudden migraine occur, and I’ve never had a migraine. After medicating, resting and icing, and with no success– I went to urgent care. After they learned of my major surgery they wouldn’t touch me with a ten foot pole. So we went to the ER where the ER doc insisted on a head CT. I knew they were going to force me into one and I was very prepared to refuse it until I remembered that I had gotten 4 Lovenox injections while in the hospital. And suddenly, a very slow leak or bleed in my brain sounded a tiny bit more plausible. The ER doc told me that if I did have a brain bleed and I refuse the CT scan, I would simply go home and die (I didn’t care for her much). She was pretty pushy, and I felt miserable. So I got the head CT, which ended up looking “perfect.” The nurse taking care of me pushed a med for my migraine way too fast and it gave me a horrible panic attack – my skin suddenly felt hot and I just wanted to jump out of my skin. It was a ROTTEN experience and by far the worst part of the trip. The nurse then gave me some IV Benadryl which helped negate some of the yucky side effects, but not all. I was very, very discouraged when my Mom drove me home from the ER late that night. After everything I had already been through, the whole experience felt traumatic. My ability to handle stressful things was pretty poor.

We did do something fun while in Gig Harbor – we rode on the ferry the afternoon prior to flying home. After going up two flights of stairs I was in pretty major pain, but it was a new experience with beautiful scenery. (I should add that my Mom discovered an elevator on the ferry after that!).

Mom and I on the ferry.

We finally made it home close to 11 pm Friday night. The next day I realized that I had a UTI – thank you hospital foley catheter! I mean, I understand why I had to have it (no one gets up and goes to the bathroom with a chest tube in place), but still, it was frustrating all the same to be back at urgent care, only this time in a different city. And I’m grateful for antibiotics, but I don’t tolerate them very well.

All in all, I had NINE incision sites (my Mom said it looked like I was in a knife fight) – and I have very little pain today. Things seem to be healing up quickly! My abdomen/pelvis feel GREAT. I have had food intolerance only one time so far, and even that it questionable. So – I feel very hopeful for the future!

 

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Appt With Endo Specialist

I traveled a week ago to see an endometriosis specialist in Washington. I got up at 4 am and arrived home at 10 pm that same day! Needless to say, it was a very long day, but it was productive and helpful, so that was good.

I met with the general surgeon first. She will be working with the endo surgeon should I have partial or full thickness endo on my bowel (if it’s superficial enough, they can just scrape the endo off). She will be on standby during the surgery. If I do have endo on my bowel and it’s significant, they will have to do a bowel resection. Bowel resections on the colon aren’t as big of a deal, but resections on the small intestine are riskier because the bowel is more narrow and there is more potential for a blockage post-op. Rarely, they have to divert the stool out into an ileostomy for a while before reconnecting the bowel. Based on my symptoms, the general surgeon guessed a 30% likelihood that I had endo on my bowel. She also thought it more likely that it would be on my small intestine rather than the large intestine. Food and I don’t agree most of the time these days, and I’m wondering if it does have to do with the fact that I do have endo on my bowel. I guess we’ll find out.

After that I drove to my next appt with the Endo surgeon. This lady was no-nonsense, and I got the idea that she’s tough as nails in the OR. I liked her though, and I very much got the sense that she was the right person to be seeing for the symptoms I had been having. She did an exam and a couple of ultrasounds. She believes I do have endo on my diaphragm, but her guess is that it’s not full thickness yet (meaning I’m not bleeding into my thoracic/lung cavity. I don’t have shortness of breath and I haven’t coughed up blood (signs that it could be in the thoracic cavity). {On a side note: Despite all that I have been through, I am immensely grateful that it most likely is NOT in my thoracic cavity!} We talked about what a resection of the diaphragm would look like. If the endo is partial thickness, they will cut it away and I’ll have a partial resection. If it’s full thickness, then I’ll have a complete resection and most likely wake up with a chest tube (think PAINFUL). Although she didn’t think it’s full thickness endo, she also told me that she had a patient previously who she also believed to only have superficial diaphragmatic endo and it turned out to be complete thickness.

We also discussed a hysterectomy. As she bluntly put it, based on my FSH and AMH results, my ovaries are “in the toilet.” I wish that weren’t true, but it is! On top of that, BOTH of the veins leading to my ovaries were enlarged, meaning that I have pelvic congestion syndrome. Terrific. She also believes that my uterus is a cause of significant pain for me, because when she pushed on it I about jumped off the table… all this is to say is that I’m going to have a hysterectomy. My right ovary is completely adhered to the pelvic wall by adhesions, so if she can get the left ovary free as well then she’ll try to leave it.

Which leads me to another concern — apparently during my very first surgery in 2011 for endo/bilateral ovarian endometriomas, the pathology report on one of the endometriomas came back saying they were “atypical.” I didn’t think it was a big deal (because the endometriomas were removed) and no one ever mentioned anything about it to me. I was very new to the endo world and didn’t know to ask questions about it. However, last week my surgeon told me that she’s only seen the “atypical” pathology twice in her career, and that it could very well mean that I could get a slow growing cancer on my ovaries. (I later looked up some research studies that validated that concern.) So, she said that if she can’t get all the endo removed from the remaining ovary, that she’s going to remove it because of the risk for cancer. Yay.

Lastly, good old childbirth has given me a prolapsed bladder, so she’s going to fix that. I guess there is something to look forward to!

Surgery is scheduled for early June. I’ll be traveling with my Mom (hubby is taking time off work to stay with the kids) and we’ll be up in WA for 6 days. I thought about driving both directions, but I don’t want to take the extra 2 more days away from my kids (and my Mom from my disabled sister and Dad).

As far as recovery goes, I really don’t know what to expect, because it all depends on what happens during the surgery. I just hope that this is my last surgery!

Thanks for your prayers!!

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Life in April

It’s a cool and rainy April evening here. I don’t mind the extended winter. When the triple digit summer days come I long for cooler days! The hubs and I are enjoying an easy going evening so I thought I would write down some memories from the past month, whether just moments at home or actual outings.

Rachel is in neck-deep in terrible twos. She spends her days either making loud demands or throwing tantrums. She’s a second child, so thankfully by now I know it won’t last forever.

She is also crazy. Have I mentioned this before? Crazy, and with an ultra high pain tolerance. She’s sporting some pretty large bruises these days. Mother of the year here didn’t even know how she got this awful bone bruise on her shin (she got another identical one of the other shin a few days later too). Part of the problem is that she doesn’t cry when she injures herself. The other part of the problem is that she has ZERO FEAR of hurting herself. And she moves ninja-fast.

Last night, while sleeping, she managed to give herself a black eye. She told me this morning that she bumped her eye on her bed. There were no tears in the night. Sigh.

In short, Rachel looks like an abused toddler. (But I assure you she is not!)

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Josh got a trip on the train as a gift for his birthday last month from Grandma and Grandpa. We traveled with Grandpa on the train while Grandma babysat Rachel. Josh loved every second of it! We ate lunch and then turned around and took the train home. Perfect outing for a 4 year old.

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Lawn mowing, weed eating, pull weeds, REPEAT. I wanted to live where we had more space to run around and play, and I love it here! It is a lot of work, though. My hubby gets really bad asthma from just being outside this time of year, so it’s up to me keep up the yard work. Good thing I like yard work!

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I dug a ditch two weeks ago in the front yard. We got a ton of rain and the water was coming up against the foundation of the house. So, I dug a ditch to put in a french drain (the drain still isn’t in….). It definitely helped with the next storm we had. (Ahem… so did unclogging the downspouts on the gutters. Next time I know to make sure to check that *first.*)

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Every now and then, Rachel slows down enough to enjoy about 3 minutes of snuggle time with Mommy. She ONLY slows down if she has her paci and blankie.

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Josh: Can you take my picture with Dad, Mom?

This kiddo just adores his Daddy. The hubs was gone for a week helping to rebuild houses in Texas after Hurricane Harvey, and this little boy sure did miss all the creativity and fun that his Daddy brings him. They build some really cool things together (things I would never think of). Josh’s ideal day would be just getting to stay home with his Daddy, with no one else around. He loves one on one time.

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Last but not least, I leave in a week or so for my consultations with the endometriosis specialist surgeon and general surgeon. I had an MRI done on my right shoulder and cervical spine to rule out other causes of shoulder pain. My MRI results did show that I might have some bursitis in my shoulder. (I wouldn’t doubt it – I had a bad injection done a few years back in that shoulder and I’m pretty sure the nurse actually injected TdAP into my bursa – it hurt for months after.) It hurts occasionally there but it’s pretty mild and I’m pretty sure that the shoulder pain I’m experiencing is not related to that at all.

I gave away all my baby stuff, and to my surprise I felt better after doing that. I’m coming to terms with getting a hysterectomy, if necessary. Like I’ve mentioned previously, I’m pretty sure I have diaphragmatic endo, and I want to make sure it doesn’t turn into thoracic endo (endo in the lung cavity). A hysterectomy won’t prevent that from happening (because I’ll have to take hormone replacement since I’m still in my 30’s) but I do think it’ll help slow down the endo growth and help reduce pain. I’ve been thinking about the possibility of getting a hysterectomy since before I even had kids and can’t believe how hard of a decision it is for me to make!

I’ll update after my consultation!

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Consultation Date Moved Up!

Miracle of miracles- I got an appointment with the endometriosis surgeon moved up to next month!

The surgeon wrote me back and said that according to my symptoms, I probably have diaphragmatic endometriosis and also bowel endo. She said that she would work with a general surgeon, who would either scrape it off my bowel (colon) or, if the endo is full thickness, they will do a bowel resection. As for the diaphragm endo, she said it’s probably not full thickness yet (I agree, and I hope to keep it that way until surgery!). It was nice to have confirmation that someone else with experience in the field agreed with my assessment of my symptoms.

My original appointment was for October, which then got moved up to July, and now to April.

I am still living with daily pain in my shoulder and upper torso – under my ribs and into my back. It’s tolerable now but I’m dreading future periods. 😦  I’ll be fine until my surgery date though as I don’t get endo in my lung cavity.

In the meantime, I’ve been thinking a little bit about hysterectomies. I’m curious to hear what the surgeon thinks about the topic. I’m still all over the map and need wisdom. I still cry every time I think about it…

Thanks for your prayers! God answered and I am grateful to get in much sooner!

 

 

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Making Straight Paths For My Feet (or brain)

Last night at Bible study, before we dug into the book of Hebrews, we each shared our “Red Dot” – where we are right now, as it pertains to our Christian walk and to life in general.

I shared briefly about how life has been hard for me lately. How I almost went to the ER Tuesday night with severe pain. How I was grieving the fact that we can’t (and probably won’t) have another child. That I wasn’t sure if I could live with this pain until my consultation and surgery this summer.

We proceeded to the book of Hebrews, and how the Word of God transformed my thoughts. In chapter 12 we read encouragement to run the race with endurance, and to not grow weary as we consider Jesus, who endured so much more (the cross). To remember that we are gaining holiness as we look up and go through these trials. To not drift away but instead to “lift your drooping hands and strengthen your weak knees, and make straight paths for your feet.

At the end of study, our entire group prayed over my husband and I. Specific prayers were said over each member of our family. I left with a full and grateful heart.

But this morning, I ashamedly found myself in the middle of a pity party. The pain was ratcheted up a notch or two. Sharp, stabbing pains under my right rib cage, and pain in my upper back and constant radiating pain in my shoulder. (These are classic diaphragmatic endometriosis symptoms.) We ran an errand and Rachel screamed a long time for reasons that will probably never be known (that’s life with a two year old). And then again at home, Rachel pushed herself away from the counter and tipped her bar-height chair over – causing her head to slam against the laminate floor (praise God with me that we don’t have tile, or else we’d probably be in the ER right now). And the pity sank in. Poor me. This pain is here to stay. Rachel is our last baby. You were hoping you’d be pregnant right now but instead you’re thinking about getting a hysterectomy.

Yuck. That’s all I have to say about my pity party. How it reveals a lack of trust. After all I’ve been through and all I’ve learned, I should be filled with nothing but hope!

And I’m writing this because I need to remember the rest of what I shared last night during the “Red Dot” discussion. I need to remember that when I look back over these past 9 years – fraught with endometriosis,  surgeries, infertility, pain, and doctor’s visits– what is the underlying current? JOY. Yes, joy. It’s not bitterness, despair, or loneliness. It has been joy – because of WHO Jesus is and how He has held me through all of these trials, and taught me to trust Him. And I’ve seen the good work that He’s doing in me. I just need to keep trusting that He’s doing a good work now. Hard times are never easy when we’re in the midst of them, and the battle is 95% mental. I’m reminding myself that it’s okay to suffer, and it’s okay to be in pain.

And now please pray with me like crazy that I can get in for surgery much sooner!

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Thoracic Endo Options & Consultation Update

It’s 2:30 am and I couldn’t sleep because I was in too much pain. (I never was any good at sleeping when  uncomfortable.) My mind has been percolating this predicament I find myself in, and I’ve been weighing my options.

As I’ve blogged about before, I am fairly certain that I have thoracic endometriosis (endo on my diaphragm). Endo in this location is more rare and found only in women who have stage 4 endo – it makes up about 1% of women with endometriosis. I’ve had this peculiar shoulder pain for over a year now and didn’t make the connection that it could be endo related until last December. It was tricky to figure out seeing as I have shoulder pain almost all the time, to varying degrees. The day before my period starts the shoulder pain becomes severe.

This month, the pain has spread from not just my shoulder but now to also under my rib cage on the right side (same side as the shoulder that hurts). I’ve read that this is very common for women with thoracic endo. I’m pretty freaked out that the endo will grow through my diaphragm and into my lungs. I really DON’T want that to happen. I’ve read about ladies that have this – they get what’s called catemenial pneumothorax – basically a lung collapse due to being on their period. Super freaky. Some women have to be hospitalized for weeks due to this condition.

That being said – the only way to even diagnose this beast is through surgery. I’ve booked a consultation with one of the best surgeons in the U.S. to deal with thoracic endo. This surgeon coordinates with a thoracic surgeon. However, I took a deep breath when they told me my consultation date: 10/10. An 8 month wait – yikes. I started to pray “Lord, can I get in sooner?” They told me that their NP would review my records and that they would call me back at some point to let me know what her thoughts were. I wasn’t expecting a phone call any time soon, but I received a call a few hours later. “Our NP has reviewed your records and has decided that you need to get in sooner.” So now I’m booked for the middle of July! Thanking God! They also put me down as “high priority” for the cancellation list. So if someone cancels I’ll be among the top of the list of people called to get in sooner.

But now that the pain has spread, I’m sitting here and wondering if I can make it even until July. I talked with my hubby this morning about going on hormones of some sort to stop my cycle altogether until my consultation. Hormones really do a number on me – it’s pretty rough and in a lot of ways I think I’d just be trading one woe for another. I don’t think birth control would be a great option because it has estrogen in it and that can make endometriosis worse as the estrogen feeds it. I went on birth control for 9 days back in Jan for my IVF cycle and remembered that my shoulder hurt pretty bad that entire time. So that leaves progesterone. I read an email I wrote to my sister prior to my last surgery 5 years ago and at the time I was on progesterone. I wrote that I had constant headaches on it and that I didn’t feel like myself at all – I was super crabby and it was hard on my husband. Also it made my hair fall out. So that’s not really a great option either. However, I’m pretty sure that if I went on progesterone my shoulder would stop hurting. The endo may still keep growing through my diaphragm but I think that it would be much more suppressed and would grow slowly.

So I’m trying to weigh these options. Do I take progesterone and risk having an altered mood and deal with having a headache all the time (and baldness!), thus negatively impacting all my family members? (I’ve noticed that when Mom is doing well and energetic, the kids are happy too.) Or do I risk getting blood in my lung cavity? (I’m trying to find out how long women have had thoracic endo symptoms before they ended up with blood in their lung cavity, but I’m sure the variables are great.) I feel very inclined at this point to not take the progesterone as I highly value good relationships with my family and highly suspect I’ll feel miserable on the progesterone.

Perhaps this is unwise? I’m not sure. So please pray that I’ll have wisdom. And please pray my consultation will get moved up!!!

Well, now it’s 4 am and almost the entire family was up the last hour. Hubby was up (probably due to me tossing and turning for so long before getting up) and Josh had a low grade fever (he got his 4 year old vaccines yesterday) and runny nose. So I gave him a snack and water along with some Motrin. Only Rachel will be well rested today!

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Beta Results

My hope is built on nothing less but Jesus’ blood and righteousness; I dare not trust the sweetest frame, but wholly lean on Jesus’ name. On Christ the solid Rock I stand; all other ground is sinking sand.

Yesterday morning, at 6 am, I took a home pregnancy test (FRER) and got the results I was expecting: Negative. Later on I had my blood drawn and 3 hours later I called to receive my results: beta of 4. Oddly enough, I was just surprised it wasn’t zero. Upon receiving the news I had peace, contentment and joy. I always imagined myself crying and feeling very depressed were I to have an IVF cycle fail, but I believe the Lord was helping me to keep my eyes fixed on Him and to not worry about the future. It also helped that we had a busy day yesterday and not a whole lot of time to sit and despair. And when I did have a free moment, I decided to mow the lawn and get dinner started.

I called the IVF clinic and asked if I still needed to get the follow up beta in two days. Their answer: Yes. “Really?!” I exclaimed? “I mean, the chances of this being a viable pregnancy are like 0.00000000000001%, right?” The reply: “I’m sorry, I can’t answer that question.” Sigh… well, fine. So I’m still taking my meds and will get the follow up beta tomorrow morning. This time I am truly expecting it to be zero.

People have asked us if we’re going to try again… I have no idea. Maybe? We’ll see how the insurance reimbursement goes. We’ll see how bad my endo flares up from being on estrogen pills. I’m kind of thinking about  excision surgery with an endometriosis specialist at this point. I don’t want to live my life in chronic pain, if I can avoid it. The big caveat is that I’ll have to travel for the surgery, probably out of state. I could be wrong but I’m pretty sure I have endo on my diaphragm. If that’s the case I really need to see someone who knows what they’re doing, because most surgeons won’t touch the diaphragm (understandably – risk of perforation, pneumothorax, etc.). Not only that but the diaphragm is only 1/4 inch thick. If I were a surgeon I wouldn’t want to touch it either.

I’m enjoying catching up on all the stuff I got behind on during the past month of IVF craziness. Things like deep cleaning (many of my friends know much I love cleaning), yard work, decluttering, even grocery shopping for more creative meals other than just the basics. Also, I’ve got 6# to lose from IVF. And I need to figure out (once again) if we should get rid of our baby stuff or not. I’m feeling a little more ready to let it go. Used baby stuff is cheap to buy, anyhow, should we ever need it one day.

Your prayers have carried me through this process and it is only because of them that I can write today with a thankful heart. Truly, I thank you for your prayers and support!

 

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Am I Crazy?

This post is me just shooting from the hip (which I try to never do) so please bear with me.

I’ve been wrestling for a few weeks over this one. It may have started when we found the kids’ baby books in the garage about a month ago. I came across pictures like these:

The kids and I both loved flipping through their baby books again. But by the end I found myself feeling sad and longing for another baby. Then we moved Rachel into a toddler bed and my hubby took apart her crib and put it in the garage. I had mixed emotions over that too. It’s the first time we haven’t had a crib in our house in almost 4 years – you’d think I’d be rejoicing! But instead it felt like the baby days were quickly passing us by – in fact, as Rachel uses 3-4 word sentences and colors by herself and tries to get herself dressed these days – the baby days are pretty much behind us.

But the facts of the matter are that the Lord has graciously blessed us with our two children. Our days are long, busy, and filled with excitement as well as meltdowns. I watch my friend’s 6 month old baby on Wednesdays and those days are just plain crazy. So I know adding another one into the mix would not be calm, organized or quiet. We live in a 3 bedroom home, and somehow I’d like to cram two more children into it. Thanks to (said) fixer upper house, we can’t afford IVF anytime soon (not that it’s something we’d hurry into even if we could afford it right now).

I thought maybe I’d get pregnant naturally after 18 months of trying and an HSG that reported my only fallopian tube to be open. Of course we’ll give it more time. But every month that I have a super painful period or have a cyst burst, I’m unsure of how long I can continue in this path before something more urgent needs to take place (excision surgery, hysterectomy, other treatments for endometriosis, etc.). And yet I have to look back and see that I also haven’t needed surgery in 18 months! That is a record for me! I (believe the longest I went off birth control before needing surgery was only 7 months– prior to having children.)

I’m trying to figure out if this desire for more children has been bred out of discontentment somewhere along the way, or if it’s a God-given desire for a good thing, a blessing. Is it okay to want more children? That desire for children was what drove us to IVF over 4 years ago, but there were some very unique circumstances that took place in order for us to arrive at that IVF clinic. It was definitely not our first choice (we were in the process of adopting at the time), and yet God had other plans and used it to bless us with these kids we love so dearly. I know that clutching anything too tightly can quickly turn into an idol, and thankfully that is not where I’m at today. I truly believe that if God closes the door that I will be able to trust Him that it’s for the best.

So I think a time of prayer and fasting is in order. I need the Lord to search my heart and reveal to me any discontentment I might have, as well as other endometriosis-related fears. And I need to trust Him for the future, even if it means we remain a family of 4!

Thanks for reading my rambling thoughts tonight!

P.S. I find it really hilarious that seeing pregnant women lately also makes me feel a little bummed. I had HORRIBLE pregnancies! I wrote blog post after blog post enumerating one pregnancy woe after another. Talk about amnesia.

 

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Hi-Ho, Hi-Ho, It’s Off To The ER I Go

Another day, and another trip to the ER. For another lousy cyst! A hemorrhagic cyst, to be exact.

I’ve have 4 cysts burst now. Man, this one was a doozie. At 3 pm last Friday I was on the phone with my Mom and putting a whole chicken in the oven when the sharp pain began. Something told me I shouldn’t wait very long to take 800 mg of Ibuprofen, so I didn’t. Soon I found myself on the sofa, lying on my side, curled up in pain. I looked at the clock. 30 minutes had gone by, and the pain was much worse. I hung up with my Mom. The kids were going nuts, and Rachel kept trying to climb up on me, making matters worse. I couldn’t even get to my computer to set up a video for them. I decided I needed to send an SOS to my husband at work. “Can you please come home? I’m in so much pain.” The tone in my voice must have gotten his attention because he immediately said “Sure babe. Give me two minutes and I”ll be out the door.”

I’m glad he was able to rush home, because by the time he walked in the door (15 mins later) he had two toddlers running a muck (Rachel was brushing her teeth with his toothbrush and trying to put on my chapstick) and a wife who was unable to move.

I was supposed to head into work in a couple of hours. I had my hubby bring me one tylenol, and took it. He also heated up my rice sock, which made matter worse (it’s helped previously). Although I thought I was probably experiencing a cyst bursting, the pain was higher up and the pain seemed more intense. I thought I just needed to give it more time, and I’d be fine. My sister called from Papua New Guinea and talked and prayed with me while I mostly cried. But I was thankful for the distraction.

By 5 pm, the pain was not subsiding so I told my husband we had better head to the ER. He called his Mom, who thankfully came right over to watch the kids. I knew I wouldn’t be able to walk, so my husband carried me to the car. The pain was unrelenting and intense. It felt like my the inside of my abdomen was being cut up with knives.

We got to the ER and my heart rate was very elevated and my BP was a bit low. I discovered (later) that they were worried I was going into shock. They didn’t have any beds so I agonized in the portable chair in the hallway for a while. The ER doc came to see me. I told him my abdomen hurt everywhere, from top to bottom. I mentioned my history of bursting cysts in the past, and my stage 4 endometriosis. I was also pretty disoriented, probably from breathing too fast. When the ER doc asked me if I was a doctor, I said “Yeah, I’m a doctor. Wait, no!” I shook my head. “I’m a nurse!” Feeling extremely sheepish, I said “I don’t what I am…” My husband and the ER doc were laughing pretty hard about that. A room became available right after my conversation and I was so relieved to be out of that chair and into the ER bed. The pain was still constant but at least I could lay down.

My Mom arrived and I was happy to have her present so that my husband could feel he could leave for at some point to grab some dinner.

I soon had an IV and labs sent off. Morphine was infused. I stopped writhing in pain and was able to breathe more normally. The pain became dull, and at this point I was able to isolate it to just below my diaphragm and on the lower right side of my abdomen, I was whisked off to ultrasound, then came back and had to drink 32 nasty ounces of contrast for the CT. The Dr did a pelvic exam, which was extremely painful.

Then I went off for the CT scan. At the CT they also injected contrast into my IV so that they could get a good look at both my organs and GI track.

Finally, a little after 10 pm, the CT results were back I was told that I had a hemorrhagic cyst, about 6 cm. It had burst, with blood going into my peritoneal cavity (hence all the pain in my upper abdomen). The cyst was on the left ovary, but supposedly it’s very common to feel pain on the other side, because ovaries can move a lot when there’s a heavy cyst on them. I don’t need surgery (praise the Lord!) and it should be reabsorbed over time. The only caveat is that it could still cause the ovary to twist on itself, so if I have a lot of pain again, I’m to go to the ER right away.

I came home very nauseated and had a bit of trouble sleeping because my abdomen felt very sore and yucky. Thankfully they gave me Zofran so I took one and it boggled my mind that it worked within a few minutes!

My belly continues to feel sore and full. I read it could take a number of weeks before the blood and cyst get reabsorbed. I hope it happens quickly!

I’m thankful that I’ve had five great pain-free months before Friday. And I’m glad the cyst wasn’t another endometrioma and that I don’t need surgery! Hemorrhagic cysts are a drag and (rarely) can be life threatening, but I’m just relieved it doesn’t mean that the endometriosis is progressing.

 

 

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Filed under Endometriosis, Pain

Our Ongoing Home Reno & Other Updates

Hey there!

Here’s a little update on life for us these days.

House

We moved to our new fixer upper home almost 7 months ago. I joke with hubby that we ought to just dig a big hole in the backyard and start throwing money into it, because it has been one giant money pit! A mold report that came back showing high levels of (non toxic) mold less than a month after we bought the house really pushed us to replace the areas were there had been water exposure (floors, under kitchen sink) much faster than we had originally planned.  And then the snowball just started rolling as one thing led to another. That’s home renovation for you, I suppose!

Here’s a list of some of the things we’ve redone since we moved in:

Tear out back deck (was structurally unsafe).

Deck (removed).

New carpet in family room and bedrooms:

I didn’t really have any “carpet” pictures, but you can kind of see it here.

Removed wall between dining room and kitchen:

Before. (This wall drove me nuts because I couldn’t keep track of the kids!)

After. I love it!

Laminate in kitchen, fireplace room, hallway and master closet:

Closet doors (two sets), screen door, side garage door:

Tile floors in laundry room and kids’ bathroom:

I tried to pick tile that matched the laminate.

Replaced Kitchen counter tops, sink (chipping), faucet & garbage disposal (leaked whenever running):

Before. This wasn’t too long after we moved in.

Before.

After. My inner clean freak is very happy with having quartz counter tops now!

Tile back splash in kitchen (which we had to add because there was a big gap between the counter tops and the wall):

Pulled out melamine desk/cabinets and put in smaller desk area with upper shelving:

Replaced furnace and A/C (yes we wanted to cry when we learned we needed to replace BOTH):

New A/C.

Dishwasher (which died right after the furnace and A/C – more crying, hehe). New dishwasher will be here in two weeks.

Replaced fridge (died on moving day), stove and microwave.

Painted bathroom vanities and kitchen cabinets:

Painted ENTIRE house (including ceilings).

Replaced almost all light fixtures and 2 out of 3 fans (we saved the only one that worked).

Whew! That wasn’t even a comprehensive list. And what’s sadder is that the “to do” list is still a mile long! The bottom line, however, is that we LOVE living here. We love the space (1/2 acre), the neighborhood, the proximity to hubby’s work, and also the fact that we live super close to my in laws! (And as a side note, both my parents and my hubby’s Dad were instrumental in helping us get a lot of the above list completed!)

Kids

Josh & Rachel are doing fine. Josh is just over 3 and Rachel is 20 months. I sure do love them and enjoy my days with them. I know everyone else has adorable/smart/funny kids, but some days I seriously wonder which state penitentiary my kids will end up at–because they can be quite devious! Some days Josh and I really do battle it out. I’m no marshmellow Mom in any sense of the word, so I often have to remember to look for ways that I can answer “yes” instead of “no.” Rachel is very determined and doesn’t give up easily either, but she does have much shorter tantrums, which I am thankful for!

I like to remember the following so please tune out if this is crazy boring (I imagine it would be to most):

Josh wears 3T clothing and wears a an 8/9 shoe. He weighs 31.6# (No joke, he’s weighed exactly 31.6# the last several times he’s asked to hop on the scale!) and a few months ago he was just over 3 feet tall. We took away his paci back in April and it wasn’t a big deal at all (we were shocked! And thankful…).

Rachel wears 18-24 months clothing and is somewhere between a size 5 or 6 shoe. She is only a few inches shorter than Josh. She still doesn’t have to many words, but she’s working on it every day. She’s been in a size 5 diaper for a while. I use Pampers diapers and water only wipes or else she tends to be prone to really bad diaper rash.

Don’t be fooled. They’re wanna-be felons, I tell you! 🙂

Weight Loss

I wrote a while back about experiencing unintended weight loss. I’m happy to report that out of the 16# I lost, I gained 7-8# of it back and that seems to be where things have settled. I’m not unhappy about it, but I do wish I had a better appetite most days so that cooking would feel less like a chore.

Endometriosis

I don’t really want to go on and on when it comes to this topic. The synopsis is: The endo does seem to be back. Some months are bad and some are okay. I cut out caffeine back in February which seemed to really help with pain levels. I still seem quite unable to get pregnant without intervention (IVF), so that’s a drag. At the same time, I have little to no desire to go through IVF again (not that we could afford it right now after all these home repairs!). I’ve been thinking about my options for when things DO get consistently bad, pain-wise. One option is to see a specialist who would excise all endo (cutting it out, rather than burning it off) and see how far that gets me. Another option would be to do a hysterectomy and also have current endo excised. This may still not alleviate pain (endo grows back easily and hides, so that it can be tricky even for specialists to find) and I still may require further surgeries. In all honesty, I’m hoping avoid any surgeries at all, because the frequent pain I get from adhesions and scar tissue following surgeries is off the charts.

Well I think that covers some of the basics! Thanks for sticking it through the post!

 

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Filed under Baby, DIY, Endometriosis, Finances, Infertility, IVF, Motherhood, Pain, Parenting, Toddler