Saturday, April 11, 2015

A diagnosis (#Endometriosis) and it's not just in my head.

I've had chronic pelvic pain for years. I don't remember if it was there before my miscarriage eight years ago, but I remember being in pain a lot since then.

At the time I miscarried, is also when I woke up to the life I was living. It's when I couldn't ignore the relationship I had with my husband, and how unhealthy and harmful it was for me. I couldn't pretend that I was okay with the idea of being a mom, and bringing a baby into that environment. Along with "waking up", I also finally acknowledged how much Larry had hurt me with his abusive behavior in my first marriage. When I started talking about Larry, and spousal rape, and depression, and false beliefs about sex and relationships, and all of the other shittiness that had been my life, I fell apart.

Pain just seemed like it was all part of the deal.

I believed my pain was entirely body memories, or related to the trauma, and I felt so much guilt and shame that I experienced pain that I barely talked about it.

(I don't doubt doing trauma work in therapy and in life had an effect on my body, and trauma work is painful all over. But it wasn't just the trauma work.)

I went to a doctor a year ago. I told her I had been raped many years before, and now I was in a lot of pain all the time. She ordered an exam, said there was nothing wrong, and I just needed to go to therapy.

Six months ago, I went to another doctor. She didn't do an exam, but told me she could order an ultrasound if I really wanted one. And told me to keep going to therapy.

I walked out of that appointment frustrated with Todd. He pushed me to go to the doctor. He promised they would help me. I told him they wouldn't - they would dismiss me and my pain, because that is what all doctors have always done.

At seventeen, I was told I was being selfish and controlling when I said I didn't want the doctor to touch me. And nobody cared or asked about WHY... The doctor just did what he wanted, quick, painful, and entirely insensitive.

At nineteen, I was held down while a doctor did a pelvic exam, because I was freaking out. I was shaking and kicking, because I didn't want that man touching me... So the nurse held my legs, and I walked out with a huge fear of doctors.

At 28, I got pregnant, pretended like I was fine with exams, because I didn't have a choice... At eleven weeks, they told me I would miscarry, and sent me home. (They asked if I wanted surgery to remove the fetus, or to go home and try to let it happen on it's own. I was eleven weeks, so I was on the border of when surgery would be required. I was afraid, so I went home.) Three weeks later when I was still cramping horribly, bleeding a little, but had also added a high fever and throwing up to my list of symptoms, they prescribed antibiotics over the phone. Luckily, my husband at the time talked to the pharmacist, and the pharmacist told Dann to get me to the hospital "right now".

My general experience with doctors left me feeling shitty. I felt disrespected. I felt used. I felt scared and silenced and I didn't like it. Todd reminded me of a good experience with a doctor I had two years ago, and he suggested that I see her.

I gave him all kinds of excuses: She's not a specialist, she's just a family practitioner. If the other two didn't see anything, what makes me think SHE would. They didn't even ask me about my pain, they just dismissed me... All doctors would dismiss me.

Except that two years ago, she hadn't. She had made me feel like a person, and she had made me believe it was okay to tell the doctor I was hurting. She also made me feel like she could help.

Last week, I finally worked up the courage to call and set up an appointment. On the phone, I told the office girl why I was coming to see the doctor, and she emailed me a questionnaire about chronic pelvic pain.

I cried as I filled out the questionnaire. It was not easy to describe the pain, and I still felt shame for feeling pain at all. I felt disgusted with myself for not being able to power through the pain... I felt disgusted with myself for talking about that part of my body. I wanted to hide, because deep down I knew the pain was all my fault.

If I could just relax, it wouldn't hurt.
If I was good, I wouldn't care about the pain.
If I was good, I would be quiet and submissive.
Along with many other messages that came straight from being a survivor of abuse.

Then I read the message from Larry asking for my forgiveness, and I cried a lot. By Sunday night, something had shifted within me.

Trauma, sexual assault, rape, and abuse have hugely affected my life. (Duh.)
This pain has been there for years, and the biggest effect that sexual trauma has had on this pain, is my inability to talk about it. My fear of talking, and being dismissed. The shame and the guilt that kept me silent. The fear... It was crippling.

By the time I went to the doctor on Tuesday, there was no doubt in my mind that the pain I was experiencing was not caused by rape. I wasn't going to dismiss the pain as just something I needed to work through. I was no longer going to accept "relaxing" as a way to cure it. I wanted help, and I fully believed I deserved help.

I volunteered information. I answered her questions. I didn't shy away from or sugar coat what I was experiencing.

I told her that it felt like someone was shoving a hot poker inside me and twisting. It is usually around my bladder and up the right side, but sometimes it moves. I explained that it burned and cramped when I peed. I told her that it always hurt, but got almost unbearable just before and during my period. She asked about bleeding, and I told her what I had observed. She asked about nauseousness and indigestion, which I also experience a lot... Turns out those are symptoms of severe Endometriosis too.

She gave me the diagnosis, offered a few treatment options, and prescribed painkillers for in the meantime. (The least invasive and least expensive treatment option is birth control, so I am trying that first. If that doesn't work, I can move to hormone blockers, and then possibly surgery.)

This is a huge relief. It's not just in my head. I'm not just making it up. There are ways to treat the problem, and to find even small relief from the pain.

Even though I don't feel any better at the present - finding some hope that it will get better, makes a world of difference.

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