Endo, adeno and I

Amid moving, taking care of the trio, unpacking, and now a kitchen renovation (yay, but holy crap that's stress*&^#!!), I have been dealing with immense pain. The kind of debilitating pain that has me doubled over just to catch my breath.

I have a high pain threshold, but I'm telling you, if I didn't have kids to take care of, I'd have made several trips to the ER these past few months. I suspect a cyst ruptured the one night, because I was in even more pain than usual.

The pain comes on when I'm upright for more than 5 minutes, and I can only describe it as feeling like I'm in active labor. It literally feels as if my insides will fall out if I don't crouch down or lay down. Then, after being seated or stretching/twisting my body, it subsides long enough that I can function again, but the pain never goes away completely.

After decades of living in pain and just thinking it was completely normal, I was diagnosed with Endo in 2008 during a routine fertility workup. The RE who performed the surgery was shocked that it was actually stage 4. (There isn't always a correlation between pain level and the stage of Endo.) I consider myself very fortunate to have been pregnant and carried a triplet pregnancy.

Naïvely, I bought into the false hope that pregnancy would stall the growth of endo, and therefore ease the pain. It did go well for a while there, but the relief of the operative laparoscopy and pregnancy only lasted until a few months after the C-Section. It's been downhill ever since, with each month being more excruciating than the one that went before. Mostly, I've been too busy to take care of myself. Until I could ignore it no more.

I have pain from hip to hip, and from my ribs to my pubic bone. Sciatica-type pain in my legs from time to time, back pain, and constant nausea. The pain and nausea is very similar to what I dealt with prior to the laparoscopic surgery, which leads me to believe that I may have bilateral complex cysts and additional adhesions again. But this time, there's also an additional layer of pain I have never felt before.

On the day that we moved (crazyness!), I went to see a specialist. Just imagine, for a moment, the logistics that entailed. Me being able to sneak away while my husband and best friends continued loading the moving truck and took care of our kids.

The surgeon suspects that I have both endo and adenomyosis (that's when the lining of the uterus grows directly into the muscle wall of the uterus). I will be going for an MRI with contrast on Friday, and the surgery is scheduled for the end of the month. They wanted to do it a few days after my consult, but I needed to unpack and get the kids settled in our new house first.

I have no idea how I'm going to care for my kids after the surgery, but my kids' godmother (one of my closest friends in the world who should be considered for sainthood) has offered to care for them while I recover. She is an amazing parent and my children adore her and her family. They will have a blast, but I'm not quite sure how I'm going to remove myself from the party.

If the surgeon can't diagnose adenomyosis with the MRI, then I have the option of not undergoing a hysterectomy just yet, but having the adhesions resected again. If the MRI is positive for adenomyosis, then a hysterectomy is advised. Of course, I can choose to do nothing and continue the charade that I'm coping. I'm just really frustrated with the pain. It has worn me down to the point where I see no alternative.

I always enjoy reading every single comment, but if you struggle with endo or have had a hysterectomy, I'd definitely like to hear from you.

Why I hate Aetna

I'm so furious right now. I just found out Aetna will not cover the Mirena IUD. As you can probably ascertain from the fact that we have both male and female infertility and had to do IVF with ICSI twice, I've never needed birth control.

Now while I completely understand that birth control is not always covered by insurance plans, I find it incomprehensible that Aetna would not cover this simple in-office procedure when it is medically necessary for Endometriosis patients.

Aetna would rather fork over $30,000+ every few years for me to have an operative laparoscopy to remove bilateral complex cysts and endo adhesions than to pay less than $1,000 to curb the bleeding for 5+ years. They would rather pay for all the ultrasounds leading up to the surgery, reproductive endocrinologist's visit, the surgeon's time to perform the surgery, the time for a GI specialist to be on hand, the anesthesiologist, the surgery suite and related hospital costs, all of the nurses before, during and afterwards (in the PACU), the pharmaceutical expenses, etc. etc.

If I had to do the math, I'd say it's a questions of:
60,000+ every 5 years for surgery
1,000 every 5 years for the IUD

I'm dumbfounded by their stupidity and shortsightedness. It makes NO financial/business sense, no personal sense and it just infuriates me beyond reason.

Why is Endometriosis so misunderstood, and why does it have to be such a battle? As if dealing with the never-ending pain, infertility and emotional issues aren't enough.