Endometriosis? Really?

I think this is the appropriate sentiment.
I think this is the appropriate sentiment.

It has been a long time since my mother has had to remind me of who I am. I don’t know if everyone has someone like this, but my parents are realists when it comes to parenting. They believe their kids are smart, handsome, beautiful etc. just not the most of any of these qualities. Neither of them have any qualms about telling me how flawed I am if I decide to get too big for the britches as they say.  For instance, once I was very indignantly mad at my husband and Mom pointed out, “You are not such a peach either.”

I am not complaining. Knowing where I stand is something I value. I am telling you this to say that when my parents give me a compliment, I know I deserve it. So Friday, when my Mom told me that I am one of the strongest women she knows, I know she means that. It was one of those moments where I looked inside myself and found something so deeply hidden, it is probably going to take months to dig it out and that is my indignation.

I have gotten a little soft lately. I think it is because I found love and all that bliss it contains. So this pain I have been having every month, this horrible bed ridden type pain that is making me a little crazy, I thought there would be a solution for. I was looking for an answer from other humans. I trusted the medical professionals to find me an answer and just remove this pain. It seems logical. It was blissfully ignorant, the hope and faith that people have who believe in love and such. Right? I mean that is how the world works right, you go to the doctor and leave feeling better and with hope you will feel better…yeah not so much.

I have been going to the doctor with intense menstrual pain for over twenty years. I have had a gazillion different appointments where I have described excessive bleeding and intense pain. I have missed work, vacations and other fun.  I have had ultrasounds and even emergency room visits where they pumped me full of morphine. They have told me the entire time that I have PCOS and that the cysts where causing me pain. So my last appointment at a new doctor here in Philadelphia I asked why I didn’t just get my ovaries removed if they were causing me pain. She said that sounded reasonable so she set me up with an appointment with one of the best gyno/surgeons in Philadelphia.  If you are a follower of my Facebook or Twitter feed, you probably know I have been sort of excited at the prospect of no pain. I have been daydreaming about my ovaries in a jar.

The first thing this accomplished doctor told me was that PCOS doesn’t cause the pain I am experiencing so removing my ovaries would be pointless and stupid. Well she wasn’t that rude but by the look on her face I knew that is what she thought. I immediately started crying. Why the hell hadn’t anyone told me that before? Why was I blaming PCOS for all my pain this entire time? Why didn’t any of the ten doctors I have seen for this before tell me this?

She thinks it is probably endometriosis, but will have to do tests to be sure. She was very vague about treatment. Maybe we will try IUD or to put me on a medication that will put me on a fake menopause. Neither of these things sounds pleasant or like something I want to do. She also said surgery most likely won’t fix anything.

Afterwards I was in a daze. I didn’t really know how I felt other than devastated and extremely exhausted. I had a coffee date with a friend after and she was so lovely to me, and reminded me that there was still hope with this new diagnoses and I was still on a journey to getting better. She also told me that it was okay I felt sad. This was good because the minute I got back to my apartment I called my Mom and broke down.

She was mad too. She had hoped the same things I did, that it would be as simple as removing the pain. Furthermore, she wanted me to get mad too. She said, “Cry today. You deserve to cry today, but then you need to pull it together and be you. You are the strongest person I know and I want you to talk to the doctor and tell her what you want. Don’t cry at the doctors. You are a very capable women, and don’t let anyone make you feel like you are not.”

You know it wasn’t the doctor making me feel like I wasn’t capable; it was me and the pain. I let the pain make me feel feeble and timid. I am not timid. I am a bulldozer in sneakers. My family and friends know I am not subtle. My sister told me I needed to pretend that I was advocating for her, because she knows I would be searching for solutions all over.

I would love to say that conversation gave me instant back bone and now I am researching with a resolve. I am researching.  However, I am still having a bunch of feelings I don’t understand. They range from frustration with a system that took over ten years to give me an answer, sadness that I will continue to have this pain, and anger that I still don’t definitively know anything. I am creating a girth of information and choices for me, but in the meantime, I am frustrated by the lack of information. I am re-angered as I look for answers in the chat rooms. The women there have all been ignored or told their pain either is made up or doesn’t matter. There isn’t one story I have read so far of women who were believed, cared for, and helped right away; years after years plagued by a debilitating pain and no one listened. I flit between resolved to find my answer and all these other feelings, some of them all at the same time.

That is where I am at now. I am in research mode. At the very least, I am again taking my health into my own hands and searching for an answer.

I got the diabetes

It is worse. This week was the worst yet in my struggle to be healthier. I found out what I have been trying to do, was not successful. I felt I was really making progress swimming five times a week, and eating out LESS. What I was doing did nothing, helped nothing. I guess I had way to many free days where I said forget it, I will just eat the cheeseburger. Monday my doctor put me on a new medicine for diabetics. I can no longer kid myself into thinking I am pre-diabetic. I am a diabetic. I have to inject myself with medicine at night now. It isn’t just that I felt I was doing better; it is that I should have been doing better. I was just kidding myself and I pretty much knew it. I have been half assing this losing weight thing. I have been letting myself and my family down. That night I lay on the floor and cried for I don’t know how long. My poor husband laid next to me and stared at me flabbergasted not really knowing what to do.Image

This has been sort of a week of mourning and hard changes. I have been feeling horrible too and I guess now I know why. I have had no energy, have felt nauseous and was generally in a crabby mood. I guess that is because my sugars have been too high. If you add overwhelming shame and depression to the mix it is really hard to think positively or about your next step.  I have been a sort of a numb zombie for more than a few days. Also this new medicine gives you nausea and a stomach ache. Basically I have just been following my husband around eating small stuff and sleeping when he says. I went through the motions.

I called my Mom and told her on the last five minutes on my break. That is how ashamed I was and how much I didn’t have any answers. I told her and then let her go. It was drive-by bad news.  She told me to focus on my health and getting better. Those words where all I could think about in the coming days. I kind of adopted it as a mantra. Focus on your health, do better, get better.

I am slow, not mentally slow, but life slow. I finally met the man of my dreams at the ripe age of twenty seven while I was still in college. We didn’t marry until I was thirty five. I move slowly. I am now thirty seven and finally getting it’s not time to play around anymore. I tell you what though, if I follow that logic, I may be slow but I am also strong and those things always worked out for me.  I ended up with the most wonderful husband, and an education I feel blessed for. I am slow but I will get this. I promise you. I will get this. Image