endometriosis, period

It Wasn’t In My Head

As I woke up from the anesthesia, I eased my hand under the blanket to feel around my belly. I found a band-aid across my belly button, as I expected. I was hoping to find more band-aids, I wanted to know it wasn’t in my head, but first let me explain how I found myself on this hospital bed.

Won’t someone believe me?

At my annual exam a little over a year ago, I approached my WHNP about the possibility of endometriosis. She immediately shot that down and I felt completely unheard. We ended up talking later and I told her how her response made me feel. She acknowledged my feelings and then suggested I try Orilissa for a month. If it helped that would indicate endometriosis. So, I picked up the samples, took the pills and nothing changed. She said I didn’t have endometriosis.

Then a year ago I started working with a nutritionist to help manage my long term GI issues. Right away I learned that a healthy gut is important for passing hormones through the body. When hormones pass through, period pain reduces. I was hopeful that getting my gut in check would reduce my period pain. That was not the case. She suggested I do a DUTCH test to learn more about my different hormone levels. Based on what she saw, my hormones did not indicate endometriosis.

However, my symptoms were getting worse. I had my usual cramps with back pain and often with lines of pain shooting into my thighs. However, now I had cramps at other times of the month or under new circumstances. I knew something wasn’t right but I didn’t have anyway outside of my pain to prove it. Once again I approached my WHNP and this time she sent me to a surgeon.

Finally, the support I needed

Dr. Ronco and I had our first consultation in August. She listened to me. She asked questions about my gut health and reiterated what the nutritionist said about passing hormones. I told her I made good progress in that area but it hadn’t changed my period pain. She was impressed with the steps I’d already taken and made it very clear that this pain is not normal. She validated my experience and when I got off that call I felt truly seen. 

We decided the next step would be an ultrasound — now, she made it clear that this is the first step but not likely the last because endometriosis isn’t often detected in an ultrasound. And she was right. So, the next step was surgery and I was on board…

But then questions started popping up in my mind: What if they don’t find anything? What if this is all in my head? It’s a lot of money for a 50/50 chance there’s nothing there. 

I didn’t schedule the surgery. Surely I can handle this on my own. Other people have way worse pain than this.

Caring for my younger selves

One day I was talking to my therapist about the situation. I shared about my experiences with my period growing up. How the pain was so intense the only relief I found was in the seconds I held my breath, trying to breathe my way through the pain. How many times I’d spend the first day of my period throwing up all day until I was dry heaving hour after hour.

And then when I went to college and realized I could not do this month after month, the doctor put me on the Pill without taking time to explore the deeper issue. How I was on the Pill for 18 years, sometimes for contraceptive, always for managing my period. That even though the Pill eliminated the vomiting I still had to take a prescription strength pain pill to manage the cramps (which eventually just became 3-4 Aleve every few hours). How I had to be my own caretaker month after month, year after year. 

I finally decided, with the listening ear of my therapist on the other side of the screen, that I was worth whatever it cost to figure out the source of my pain. I decided I would do this for my 41 year old self, my 12 year old self, my 18 year old self and all the selves in between that had to bear this pain month after month. 

It wasn’t in my head

Yesterday I had laparoscopic surgery to explore my abdomen for endometriosis. Before the surgery Dr. Ronco explained that 50% of the time they don’t find anything and if that was the case, we’d do more work to find the source of my pain. She also said there would be one incision in my belly button. If they did find something, there would be two additional incisions on either side of my belly.

I was laying there and felt for the band-aids. At first I only felt the one on my belly button and my first thought was of course. Of course they didn’t find anything. But then I put my hand down on my belly again, I searched a little more… and there they were, two band-aids on either side of my abdomen. It wasn’t in my head. They found it. 

it wasn't in my head
the three band-aids on my belly

I asked the recovery nurse if Dr. Ronco would come in and she said no, because I wouldn’t remember what she said (I remember this conversation, but whatever). I told her about the band-aids and how they found something. She pointed to her head and said, “It wasn’t in your head. Your pain is real.” I teared up hearing these words of support and affirmation. 

Brad picked me up and told me everything Dr. Ronco told him. They did find endometriosis. It’s being sent for a biopsy. 

It wasn’t in my head. My pain was real. 

peace.

8 thoughts on “It Wasn’t In My Head”

  1. There is nothing better than a doctor who confirms your pain is real and not in your head. I am so sorry it took so long for someone to finally listen. Peace in your healing. Prayers your extreme pain is gone.

  2. Your body and mind may at times fight against itself, e.g., auto-immune diseases and chemical imbalances, but it rarely lies. You stood your ground and fought for a truth, an answer to your pain. May this journey continue to release your body from this disease and debilitating pain.

  3. Oh, I know this feeling too well… I’m glad you found someone who listened and took you seriously. Amazing that many docs these days still don’t! I’m sorry to hear about your endo dx, but also relieved you have an answer. One step at a time…

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