My Endo Journey cont... What the F**k is that?

This next chapter took a while for me to dive into. Up until this point in my journey, the story flowed from me like a river after the rain. Like a worn book you've read a million times that still tugs at your heartstrings and has you celebrating the wins. The memory of the pain forever embedded in your skin like a faded scar that says you lived through this. 

But the years following Levi's birth are rawer and still healing. Anger and panic still rest right below the surface. It took so long to get my next diagnosis that it feels criminal what women still have to go thru to get proper care. Nothing has really changed in the 25+ years of living with this disease. Symptoms are often looked at as individual problems rather than treating the whole body. Our bodies are complex and unlike my previous postpartum days; the pain would never go away. My back was stiff with a permanent rod pressing just above my tailbone. I had this pain up under my rib cage, my hips hurt like I was 9 months pregnant, and the top of my thighs burned like I was constantly walking at a slight up cline. Intimacy went from uncomfortable to excruciating. They gave me valium to use as a suppository to calm my pelvic floor, trazadone to force myself to sleep, and mild pain medication that was a joke. Vicodin no longer allowed even when in pain management therapy. My periods were incredibly heavy and could last 15-25 days when my body would no longer listen to the birth control, I was using to suppress it. They prescribed iron when I complained of feeling dizzy. Cysts would burst regularly, like someone squeezing my ovary just to the point before it burst bulging thru your fist. I stopped going to the doctor for those and would just ride it out with a heating pad and expired pain pills I had left over from when doctors were allowed to actually treat chronic pain. Consistent bowel issues would take me to GI specialists that put me through elimination diets and food sensitivity testing, colonoscopy, and several gall bladder tests; one that left me radioactive for a few days. 

A year into trying to figure out what was wrong with me, they decided it was in fact my gall bladder causing my pain and removed it. But nothing changed and so I went about my life putting my suffering on the back burner so that I could take care of my 4 little kids, and a growing business. I did it for as long as I could, but my body wasn't having it anymore.  The breakthrough periods happened more often. My belly so swollen I looked chronically 6 months pregnant for years.  

I grieved my mother who had helped me walk this disease for so much of my life and I felt lost. I didn't know how I was going to do it without her love and support. She was my advocate and when she got sick and then died, I just couldn't face it alone. But too much stress, too much pain, too much life and a few years later I knew I couldn't ignore the pain any longer.

I had been going to the chronic pain management clinic at the Cleveland Clinic for years but due to insurance that was no longer an option. I made an appointment with a new doctor who was an endometriosis specialist. I remember sitting in her office with my surgical records as "proof"; not knowing what kind of doctor I was going to get this time. I was scared, angry, frustrated and nervous that I had to share my story yet again and I had no idea if she would treat me with kindness or like a drug seeker. It typically went one way or the other. But she was kind and listened to my story with empathy and attention. She ordered an internal ultrasound, though and I got suspicious. I knew endo wouldn't be detected on an ultrasound so what was the point. I went ahead with it anyway feeling defeated that she really wasn't qualified to handle this. 

The tech performed the ultrasound right there in the office and immediately without hesitation said "oh, it looks like you have adeno." Excuse me? What the f**k is that?!?!?! I have endometriosis and you can't see that here. I was so confused. She was looking at me with shock that I had never heard of adenomyosis - endo's evil sister. She was so sweet and said "I shouldn't have said anything but I'm pretty sure this is what you have. Although it can occur on its own, it most likely happened during one or all of your c-sections. When they cut through the uterus some of the lining is transplanted into the muscle of the uterus and acts just like endo does. It has nowhere to go, so your uterus just grows and grows to accommodate the blood. It could be the cause of every one of your symptoms."

I went home and just sat there crying. So mad at the Cleveland Clinic for wasting 5 years of my life because they couldn't be bothered to do an ultrasound and look at my growing lists of symptoms. Angry at the Dr's who unnecessarily took my gallbladder and caused new issues, angry at the Dr's who performed my 3 c-sections and never once mentioned this was a risk. Mad at my mom for abandoning me and scared as hell as to what I was going to do about it. 

The only cure was a hysterectomy. The recovery would be long. It could take years to fix all the damage it caused. All my symptoms and pain were growing at rapid speed. Birth control was no longer working to suppress my period and I was bleeding everyday now. She put me back on the awful drugs that put me into menopause again; hot flashes and mood swings and all. My tailbone felt broken, and I couldn't sit down anymore. I gained 25lbs within 30 days and I was so swollen I couldn't even reach down to put my underwear on. 

How was I going to do this? I felt worthless and a burden to my family. My husband and kids got this shell of me that could barely get down the stairs. My life was crumbling. I felt selfish for having a family and all my fears of not being a good mother because of this were on my shoulders like a freight train.

My husband was there by my side through it all. He encouraged me to be my own advocate and find the best doctor I could. I found a resource called Nancy's Nook and it is a mecca of science driven information for endometriosis and women's reproductive health. In there was a list of MIGS trained Doctors that had been vetted and were known advocates for endo patients. Most were fertility doctors because typically women find out they have endo when they struggle to conceive. 

That is when women find out that they were not just having bad periods, but their pain for years was due to endo. It takes on average 10 years before women get a proper diagnosis. I was lucky with endo finding it right away. It took 5 years for me to get my adeno diagnosis let alone just hear that word come out of a doctor's mouth. 

There was one doctor in Chicago that took older women not looking for fertility treatments. We travelled to Chicago to meet with him, and he also believed that I had adenomyosis and would've gotten me into surgery within weeks.  He told me I was in luck, because if I had been under 40 or had less children, they would most likely deny my surgery regardless of my pain or symptoms. Not having healthcare choices over our bodies is not a new concept. It was happening before roe vs wade was overturned and now instead of moving forward to fix a broken system, we travelled back 50 years. This is the first time I really thought about what my daughters would face if things went differently for them, and they needed this surgery when they were young. 

I would need family around me to recover. And as my symptoms progressed, we knew we were not going to be able to run the food trucks this year. The recovery was going to be long, and we made the really hard decision to sell our businesses and move home to Chicago permanently. It still breaks my heart when I think of the sacrifices my husband made for my health. We left a community where we were invested in and were loved by our community. We had deep roots. Leaving was heartbreaking. We planned my surgery after my son's baseball season, so he could play with his friends one more time. We sold our business in May of 2019, surgery in June, and we moved home in July. 

My Dr had a GI specialist, a urologist, and multiple other doctors on call in case things were worse than expected. From the scar tissue my uterus was completely frozen to my bladder, and it took an extra 4 hours to separate them. My tailbone was pulled under from the ligaments shortening due to years of chronic pain. My uterus was the size of carrying a 6-month fetus; he had to cut it in half just to remove it from my body. I was able to keep my ovaries, pushing off my 4th final journey through menopause for another day down the road. He found no endometriosis - crediting my last laparoscopy for curing me of endo and the reason I was able to have children naturally after the twins IVF taught my body what to do. Three ablation surgeries over 13 years finally got it all; frustrating to know that excision surgery when I was 14 years old could've been a one and done situation. It's hard not to imagine what my life would have been like if I was free from it then. But if I can blame it, I can also thank it for all the ways it shaped me to be a strong woman, an advocate for my own daughters and women, and my incredible drive to give back to a community of women that are marginalized and unheard.

And although I'll never know which c-section caused the adeno it's most likely all 3 contributed to it. How do you cut through a muscle and not leave traces of blood on the scalpel? It should be common sense for ob-gyn doctors to warn women of this HUGE effing risk associated with having a c-section. Not that it would've stopped it from happening or changed our birth story, but it would've saved me years of misdiagnosis, unneeded surgeries and tests, and so much money to have a direction pointed out for me. Especially being an endo patient.

Immediately I was in less pain recovering than I was living with daily with adeno. It was a relief, but the recovery was just beginning. I would spend the next 8 months going to the city for pelvic floor therapy to release my tailbone. The pain finally subsided, and I had one last appointment to say goodbye to my care team when the pandemic hit. Appointment was cancelled and we were told to shelter at home. I never got to say goodbye to my team at NW for giving me my life back pain free. 

He gave me less than .1% chance that the endometriosis would ever come back, and I was stunned. Menopause is not a cure for endo, but because it was finally gone and no uterus it won't come back. 

And while my body was cured, and the pain managed; mentally I was still not free. Who was I now and how does that shift how I operate in life? How do I make the most of my freedom and new lease on life??