Sunday, March 21, 2010

I have no uterus

It's been exactly three months since my hysterectomy surgery.

Leading up to my hysterectomy, I talked to as many people as I could who had the surgery. It was hard to find young people who had the surgery because it's most commonly done on post-menopausal women. My oncologist was not very reassuring and the more I thought about it, the more I was convinced I was going to die from the surgery or at the very least the surgery would change my life forever.

Kim from Beautiful Wreck helped me more than she will ever know. She was open and honest and gave me all the details I wanted. She even showed me a picture of her uterus after they took it out. She answered all my questions no matter how ridiculous they were. She told me I was going to survive the surgery and be okay. She gave me the invaluable advice of scheduling my pain pills to overlap or else I would be in big trouble. Even if it meant setting an alarm to take them in the middle of the night. (Boy was she right about that.) She even gave me her phone number and told me I could call her with any questions. She also "introduced" me to someone else who was having the same surgery on the same day. We exchanged numbers and texted each other throughout the recovery process.

What if I didn't have her to go to? It's only because of twitter that I found her. If it weren't for that, what was I supposed to do? Nobody from my oncologist's office ever sat me down before my surgery and told me what they were going to do. Or what things would be like after. You would think they would at the very least have some diagrams of what is done during the procedure. They never even told me they were taking my cervix. I obviously knew they were taking the uterus. They asked if I wanted them to take my ovaries. Nobody mentioned the cervix. How was I supposed to know? Even with the ovary decision, they said they recommend it but they never talked me through the decision. I called my OB/GYN crying and she helped me decide.

I bought Fran Drescher's book because she had the same kind of cancer I did. I started reading it and it scared me so much more. She said when she came home, her dog knew something was different about her. She said he acted differently around her from that point on and then he passed away. I was so freaked out. I started imagining Brinkley not being as close to me anymore. (Which by the way did not happen at all. He was so happy to see me and is just as attached to me as he always was.) Adam made me put the book down and not read anymore.

Then there was after the surgery. It was the worst pain of my entire life. I was so lucky to have Adam there to help me do everything. There was nothing I could do on my own. They sent me home after only one night in the hospital. Which was fine because I didn't sleep the entire time I was there anyway. The only thing I really missed when we left was the catheter. (Words I never thought I would say.)

Beyond the physical recovery, nobody cared about how I was doing emotionally. I was 31, childless, and had been trying to conceive for many years. All within a couple weeks I went from that to being diagnosed with endometrial cancer and having my uterus and ovaries taken from me. It all happened very quickly and the realities of it still haven't fully hit me.

I feel like this really highlights how screwed up our health care system is. Shouldn't this diagnosis and surgery be paired with therapy? How about a single conversation with me to determine whether I was okay mentally? Especially considering I have a history of anxiety and depression (like many people who have experienced years of infertility), which they knew. If I didn't have Adam and our adoption plans, who knows where I would be at mentally. Wasn't anybody going to check on that?

When I went for my follow-up appointment weeks later, he told me my cancer was gone and the surgery was a success. No physical exam. He never came in the room and sat down. He stood in the doorway and the appointment was over in minutes.

A few more weeks went by and I was feeling so tired I could barely get out of bed, so I called my OB/GYN and she prescribed me a very low dose of hormone replacement. I've been on it a couple weeks now. Not sure if it made a huge difference, but I know it's good for bone density and reducing the risk of stroke.

Physically, I am recovered, but I know I have a long way to go emotionally. Sometimes out of the blue I will remember I have no uterus and it will hit me like a punch in the stomach. I have a lot of feelings of guilt surrounding everything. I feel like maybe I should have fought the treatment plan. Pushed for more tests. Tried meds before surgery. I gave up my uterus without a fight. Maybe I was just being lazy. I didn't want to deal with it. After being diagnosed, I immediately made the surgery appointment. I just wanted it over with.

It's hard to know that we have to rely on someone else to decide we can be parents. Even though we were already doing adoption so nothing has really changed. Somehow it feels different. More pressure. Me getting pregnant can never be a back up plan. Somebody has to choose us, or we will never be parents. The one thing I have always wanted more than anything else in the world and it's completely out of my control.

(This is the point where I stop, breathe, and remind myself that we will be parents. It will happen for us. Our long wait will eventually be over.)

One thing I know for sure is that all the support that was missing from the medical community was more than made up for by my blog and twitter friends. I can't imagine having to go through all of that without all of you.

....And thank you for letting me use my blog as free therapy today :)

17 comments:

  1. You are so strong. You will get a baby...I can feel it. Thank you for sharing your strength with us!

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  2. *hugs* I'm so glad you had online support. I know with my hyst, and since, I don't know what I'd do without them.

    I'm new to your blog, but know that you can come to me and vent and cry and laugh and throw things (preferably not at me).

    You are so amazingly strong!! What's happened to us, and esp you, is so not fair.

    I'm over a year post hyst, and the emotional recovery is still happening for me. Some days are better than others.

    We can do this. We will do this.

    *hugs*

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  3. You are so strong. And I know that you will make a wonderful mother. *hugs*

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  4. Oh Lisa, thank you so much for sharing this with us. It's a testament to how strong you truly are. You and Adam will make wonderful parents! I can't wait until you two are chosen!

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  5. I cried reading this post. You (and Adam) are a pillar of strength, and WILL BE fantastic parents. I fully share your feelings on the health care system(s) (it's not great in Canada either, no one cares about women's mental health it seems.) I am so glad that you found support on Twitter. I don't know what I'd do without you all either. <3

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  6. You are so strong and amazing in every way. I can only imagine the emotional pain and struggles but I am so glad we can be there for you through it. Love you much! *hugs*

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  7. <3 Thank you for being so honest here and on Twitter. I am so thankful that we are friends. NaVe is right-you and Adam are so strong and will be fantastic parents. And I fully agree about the healthcare system-they focus too much on just fixing the physical rather than placing more imporatance on also being okay emotionally. *huge hugs*

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  8. It's amazing where we find support these days. I love my internet friends. I think doctors and hospitals are very bad about the support part after...it was the same thing but my mom had a brain aneurysm a few years ago and afterwards she was lost...as a survivor (not many) she was left w/ questions and she was scared. She would've loved support! They do the procedures and send you on your way! I"m so glad to hear you had someone to talk to who had been through it. Sometimes it makes all the difference.

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  9. Thank you for saying such kind things about me. I am glad I was of some help! I am still here for you!

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  10. As a counselor, it makes me really sad, frustrated, angry, bewildered (I could go on!) that mental health care wasn't automatically a given in this situation. It is so maddening that there is STILL such a stigma about taking care of our mental health...I don't get it...it's MAINTENANCE, people! Clearly, you could see a need for help recovering emotionally and it's awesome that you recognized that and decided to do something about it :) Good for you...hopefully more people will follow your lead! :)

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  11. Lisa,
    I am left without words after reading this post, but wanted you to know that I visited.

    Your experience with the medical system neglecting your mental health is inexcusable. Yet all too common.

    Can't recall how I found you, but I'll be following your journey. Happy Birthday!
    -Foxy

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  12. I'm so sorry that your treatment has been so awful. I had ovarian cancer after a lengthy and unsuccessful bout with infertility. One of the main things I saw was no counseling was ever provided. Back in the 1960s, when my mother had a stillbirth, she was immediately seen by a psychologist. I don't understand why that doesn't still happen.

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  13. I have looked all over the internet for answers and cannot find it. I am having just my uterus and cervix removed. Is there anyone who has had just that exact thing done that can comment on whether their sexual experience changed at all afterwards? My doctor refuses to talk to me about this and I do not know anyone personally who has had this done. Thank you in advance....

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  14. I'm really sorry you had to go through this, and especially that you haven't found the support you needed through the medical system. I agree - its absolutely shameful the way women are treated with regard to their mental health, especially around reproductive mental health. I don't know if it's any better for men, but I've just seen so many women be treated with such negligence and lack of concern. It's just horrid.

    I am so glad to see that you have a little one now and I hope he brings you much joy. Wishing you peace and healing.

    Here from the Creme.

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  15. It's shocking how little support you got. I'm so sorry. Thank goodness the internets were there for you when the medical system failed you so abysmally.

    On a happier note, congratulations on your beautiful baby boy!

    (here from creme)

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  16. Infertility AND endometrial cancer! How on earth is a person supposed to pull through without some serious support? Either one alone is hard enough to deal with.

    I'm glad you did find support when you needed it most. What did people do before the internet?

    (Arrived from the crème de la crème list)

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  17. I am here from the Creme (albeit a little late)

    Just wanted to let you know that I read your post and that it was well-written.

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