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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