Monthly Archives: March 2018

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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