Living With Endometriosis

I’ve written about endometriosis before and Mommying with a chronic painful illness. But I’m going to mention it again.

It’s been on my mind lately for a variety of reasons. The more I practice psychiatry the more I see how women are mistreated in our society. I mean I knew it before, having experienced it myself, but now I really see it.

It took me three years to be diagnosed with endometriosis. On average it takes about five in the United States, up to ten in England (I did my thesis on barriers to treatment and diagnosis of endometriosis, so trust me on the stats, but you can message me if you want the articles). The first diagnostic surgery was wrong in many ways- she used laser to supposedly get rid of the one endometrial spot she found, told me my ureter was malformed, and that I had minimal endo maybe stage I. There are IV stages- IV being the worst and most widespread.

Fast forward- my ureter was not malformed, I found a second surgeon because my pain quadrupled after laser and I educated myself that I needed excision not laser removal of endometrial lesions. We went for the second surgery and he diagnosed me with stage III endometriosis and excised several areas of lesions on my abdominal wall and my ovaries. He also found endometrial tissue on my uterosacral ligaments and colon.

When I woke up from that surgery I remember he told me what I had and how much he took out and I sobbed. I was so relieved. For three years I chased a diagnosis. I chased my pain.

I was sent to psychiatry at some point by my OB at the time- as many women with pain are sent to me- and was told my a therapist that I must have chronic abdominal and pelvic pain because I must have a history of sexual trauma even if I have no memory of it and no other signs or symptoms that I was a victim of sexual abuse.

I in fact do and did not have a history of sexual trauma.

I never returned to that therapist for obvious reasons including but not limited to misdiagnosis. But can we talk about how much that messed with my head?!

I would puke from the pain. I had hemorrhaging cysts and my hematocrit would drop to 23 and they would threaten blood transfusions as I lay curled in a ball and just wanted it to all go away. But of course, in that moment I remember thinking, and this is all because I have sexual trauma of which I have no memory or inkling? There are so many things wrong with those memories!

I mean the pain made it so I couldn’t think clearly. Then I had to deal with all these health care providers who were minimizing my pain because I was female. I must not have a high tolerance. I must be seeking opioids. I must have a psychiatric history that I am not even aware of. Until that surgeon who took me seriously, I literally thought I was losing my mind and making myself be in constant pain.

So he fixed me for awhile. But it never goes away. Not completely. Then I had the boys and all those pregnancy and nursing hormones kept it at bay. Then it came back. Hard. Then I went on birth control (OCP) because I thought I would give it another go. I hadn’t taken it since my early twenty’s and I really don’t want another surgery. I started it last Summer and it helped. I remembered the one of probably fifteen I tried that didn’t make me super angry and emotional.

But then I stopped losing weight, and gained some back. My blood pressure has been creeping up. I knew it was from the OCP. So I stopped it two weeks ago. The last two days have been horrible with the pain.

I read this piece once by someone with endometriosis, she wrote the “pain is like an old friend,” and I was annoyed and horrified by that ten years ago, but now I understand it. The hormones, the side effects to OCP, the pain meds, the surgeries: all of that crap is foreign and scary. The pain is familiar. I know what to expect with it. Crippling at times.

Like I stood up during yoga class today at hot yoga, and I instantly dropped back to my knees. The pain shot through me like fire from my leg to my abdomen. The boys have seen me drop down to the floor very suddenly when it hits like that. Jackson comes and rubs my head. Declan asks if I’m okay. I grit my teeth and smile at them, a smile that doesn’t quite reach my eyes, and tell them I’m fine, and within a few seconds to a minute it always passes and recedes into a duller pins and needles pain.

Pain meds don’t work. Advil and tylenol are like spritzing a wildfire with a little spray bottle. I can’t take narcotics because I’m a Mama and they don’t really work either. They just numb me out for a period of time.

I said to my wife, “So I’m fat and hypertensive or I’m in pain.” She told me to be fat. That she hates seeing me in pain.

But it’s not that easy for me to accept being overweight and hypertensive. It’s not good for me in the long run. I guess neither is being in pain. But like I said, the pain is like an old friend. Wrapping around me with fiery tendrils.

These days when it’s bad I can’t always focus on the boys. I can only focus on my next breath, my next step, my next move. I feel awful for that. That I’m not myself. I can get into my head about it and have quite the pity party. But then I’m a firm believer in the everything happens for a reason concept.

I think I wouldn’t be able to help the numerous women who end up in my office after a shoddy medical work-up because no one could see past her gender and take her complaints seriously, and truly try and get to the bottom of her presentation and symptoms.

I don’t tell them they must have sexual trauma if they have chronic pain. I tell them I want all of their records. Then I review them all, and I run labs for anything that possibly has been missed, and I refer them to specialists who may think differently then a primary care MD or an OB and who may do different work-ups.

When I offer them alternative work-up ideas and different diagnostic ideas and different doctors to see and alternative therapies to try…I always see something in them that I know all too well. Hope.

When that surgeon told me it was stage III endometriosis with the pathology report and surgical pictures to prove it I felt such relief. Such hope. I knew it was a chronic illness, but at least I had an answer. I had a name for the pain, and an understanding for the underlying cause.

I wasn’t crazy.

That we as healthcare providers are more comfortable telling women to seek psychiatric care then to do an adequate if not thorough work up for them disgusts me. I like to think in my small office, in my own way, I am giving back in a way that only one surgeon ever did for me.

So for now, I’ll embrace my old friend endo armed with my hot water bottle on the front and heating pad on the back. I’ll embrace the good days and not live through them by dreading the bad ones to come and I will take the bad days knowing there will be good days to follow.

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