Nina’s Big Hysterectomy Adventure

At long last, I am on the other side of “hystery.” I’ve had a rough year, health-wise, culminating in this crisis. But on Wednesday I got my long-sought-after hysterectomy (ovaries stayed in, everything else removed). It was complicated, due to the location of the fibroid in my cervix, and the surgery itself took 4.5 hours, and the doctor tells me I can expect more recovery pain than a “normal” hysterectomy. But I’m recovering steadily and glad the wait is over.

Photos below, including one of the “specimen” the surgeon removed. If you are weak of stomach, do not scroll down.

From the car, headed to SIU St. John's Hospital, Springfield IL.
From the car, headed to SIU St. John’s Hospital, Springfield IL.
Before the surgery. Phone picture is blurry, but my head still wasn't. I just wanted to get on with it already!
Before  surgery. Picture (taken on SpecialManFriend’s tiny phone) is blurry, but my head still wasn’t. I just wanted to get on with it already.
After surgery, which took 4.5 hours. I was under for longer than that, as actual surgery started kind of late. Last thing I remember is being wheeled out of the pre-op room, around 1:45pm. Next memory is being spoon-fed ice chips by a nurse, around 8:30pm.
After surgery, which took 4.5 hours. I was under for longer than that, as actual surgery started kind of late. Last thing I remember is being wheeled out of the pre-op room, around 1:45pm. Next memory is being spoon-fed ice chips by a nurse, around 8:30pm.
THE MONEY SHOT! I photographed it off the surgeon's phone (and added the labels later) since he can't share this photo because it's locked with a HIPA-compliant app. He will try to get me a print of it for my post-op appointment in a couple weeks. As you can see, the fibroid stuffing my cervix is not only bigger than my cervix, but bigger than my whole uterus. There is actually another fibroid in my uterus there, but it's obviously smaller.
THE MONEY SHOT! I photographed it off the surgeon’s phone (and added the labels later) since he can’t share this photo because it’s locked with a HIPA-compliant app. He will try to get me a print of it for my post-op appointment in a couple weeks.
As you can see, the fibroid stuffing my cervix is not only bigger than my cervix, but bigger than my whole uterus. For reference, here are diagrams of normal uteruses (uteri?) and cervixes (cervices?).
There is actually another fibroid in my uterus there, but it’s obviously smaller.
The next morning, after several hours of drug-induced haze (not exactly "sleep"). I had a catheter and didn't move my legs at all for about 16 hours. When I finally did, I had episodes of shaking and teeth-chattering, and later puking. Probably after-effects of anasthesia. In spite of a few setbacks, I got on my feet a few times and started peeing normally. The effects of the drugs seemed worse than the pain itself.
The next morning, after several hours of drug-induced haze (not exactly “sleep”). I had a catheter and didn’t move my legs at all for about 16 hours. When I finally did, I had episodes of shaking and teeth-chattering, and later puking. Probably after-effects of anesthesia. In spite of a few setbacks, I got on my feet a few times and started peeing normally. The effects of the drugs seemed worse than the pain itself.
I ended up staying 2 nights at the hospital. We'd only planned for one, but I wasn't stable enough to go home the day after surgery. Here's my bed right after I was discharged Friday morning.
I ended up staying 2 nights at the hospital. We’d only planned for one, but I wasn’t stable enough to go home the day after surgery. Here’s my bed right after I was discharged Friday morning.
Home at last! Momz got me this lap tray to protect my belly from the cats, and it was useful instantly. I look much, much better in this photo than I feel! But I can get up and walk, my 5 abdominal incisions are healing, and the brain fog isn't too bad since I stopped the presecription painkillers and am only taking OTC Naproxen.
Home at last! My Momz got me this lap tray to protect my belly from the cats, and it was useful instantly. I look much, much better in this photo than I feel! But I can get up and walk, my 5 abdominal incisions are healing, and the brain fog isn’t too bad since I stopped the prescription painkillers and am only taking OTC Naproxen.

Reviewing these photos, it doesn’t look like such a big deal. But it was at the time! And is now, to be honest, as I spend most of the day sleeping and dreaming very weird dreams, like having to eat my way out of a giant bathtub of lentil soup. Right now is my big morning at my ol’ computer, feeling semi-normal for a few minutes. I’m supposed to be mostly recovered in 2 months, at which time I am allowed to bicycle again. Until then, my posts may be stranger than usual.

UPDATE MONDAY JULY 2: I’m still getting better. My biggest challenge is coughing, which I can’t do without bad abdominal pain. But I have to cough to clear the crud from my throat, which is still recovering from the breathing tube I had in me for many hours. It’s quite a conundrum. Fortunately, laughing is not nearly as painful.

I had my first walk outside today, about a quarter of a mile. Everything looked amazing: flowers, trees, blue skies, clouds. I’m grateful to be alive.

UPDATE JULY  15: at my 2-week post-op appointment, the surgeon said the biopsy revealed the cervical fibroid was 7cm. My cervix also contained a 2cm polyp. And there were multiple fibroids in my uterus. Neither cancer nor endometriosis were detected.

My recovery continues to go well. I can now walk up to 3 miles a day, and don’t need any painkillers, even over-the-counter ones.

UPDATE SEPTEMBER 19: Today marks 12 weeks since my hysterectomy. I officially deem it a success! No more constant low-level abdominal pain. No more periods! And…I can have sex again without becoming violently ill. That’s right, I was facing a future of no more sex ever, because I got so sick from it (including vomiting, the last time before my fibroid was discovered). Turns out you’re not supposed to have a tennis-ball sized tumor rammed up in there! Now that it’s gone (along with its numerous sister fibroids and polyps, and the cervix and uterus they grew in) I feel MUCH better. A+ would recommend.

Share

Author: Nina Paley

Animator. Director. Artist. Scapegoat.

22 thoughts on “Nina’s Big Hysterectomy Adventure”

  1. All the best to you! I will not tell you of all the people I know who did the same, because it isn’t the same for any of you or them. But it’s a change for the better, and soon we’ll see you frolicking in the sun again!

  2. QUALITY OF LIFE is so important! Many choose to live with pain for fear of surgery. Glad you reached out, found a solution, and went with it.

  3. Dearest brave Nina!
    The plural of uterus (male) is uteri, just as you gathered.
    And indeed cervices for cervix.
    I do hope your recovery will be smooth and the nerves inside you also keep quiet!

    All yours, Magda

  4. Sending healing and soothing thoughts your way, with that huge thing in your cervix it musta been like being in labor for years. Congrats on your new life!

  5. Thanks for sharing all that, especially the money shot..fascinating!
    Also, the lap tray is genius. I’ll be telling all my cat owning lady friends about it.
    Wishing you a speedy and complete recovery.

  6. You are so great. It’s wonderful to see you in the photos. Here’s to a speedy recovery!

  7. I had my hysterectomy last year at about the same time- Fond memories of laying in my recovery bed near an open, breezy window to the garden. Let friends with fragrant roses cut some and bring them to you… I have such wonderful memories of the intense relief and pleasure after the surgery. Glad to hear you are in the “after” phase. Heal well, smell the roses.

  8. Been waiting for this update and it is thorough. Thank goodness you are home and, yes, many months ahead and soon you may be tooling around on your two wheeler as the Fall leaves turn. Whew. What an ordeal!

  9. good to hear you’re (mostly) back on your feet … get well, but don’t push it!

  10. It feels weird to comfort a person you barely know. I only know what you post here, and your movies. This is all I want to say, stranger to stranger: If I lived close to you (not a chance, I’m in Miami) I would go over with a pot full of my special lentils. They are amazing taste-wise (Spanish style lentils, simply the best) and super nutritious. As a matter of fact, that’s what I had for dinner today.
    If you had that dream is because your body is telling you that you need to eat that. Lentil is a power food. Everybody should have a bowl at least once a week (specially if it came out of my kitchen).
    But anyways, I’m very fond of you and I’ve seen Sita 15 times. And I really hope one day I can make you my legendary Spanish lentils as a thank-you note for all those hours I spent watching Sita and all the other stuff you have done. Thank you so very much. I truly appreciate your existence.

  11. Aww, thanks Adriana!
    Maybe I should have some lentils. Experiencing a whole bathtub of them kind of turned me off, but pior to that dream I liked lentils very much. I’m sure I would love yours, but will have to settle for my favorite homemade lentil soup instead.

  12. If you ever come to Miami (or Cuba) let me know. My email is in the “Leave a reply” thing. Also, how would you like to show your movies in the International Film Festival in Havana? That’s in December. I can talk to the people who organize it, if you are interested…

  13. Glad to hear you got the medical attention you wanted/needed. Get well and stay that way. Best wishes for a long life.

  14. Hello there ! 🙂 Hi Hi !!
    I came to know this from seeing this website and also seeing “Sita sings the blues” like, 5X !! I LOVE this movie! But more importantly, I just want to say…that I hope you’re feeling good honey, and strong and awesome now…I know you’ve been through surgery-Ugh-I know it’s not easy hon’…. I know……and I hope your body is healing and that you are too!! I feel for you and I just want you to go forward be the strong person ~and being ~and soul ~and spirit that you are.. You rock….I love what you have give to us on film. (and every purveyance of media now) Thank you. Thank you. Thank you. so much— I feel happy that you’re healthy–! All the best to you ! ~Margot

  15. Thank you for sharing your story – I am scheduled for my surgery and am scared about being immobile with pain constantly. Also, I have to work, so that is a big stress.

  16. Im gettimg ready to have mine. Your post is very helpful but I am still scared. I feel like he is taking my vagina away and I wont feel like a woman anymore. What is this unsubstantiated fear? Ugh!

  17. Hello I had a hysterectomy in 2017. The size of a cantaloupe. They took everything. I just came across this blog and have a question. When does your body stop acting like it is going to have a period every month? Always cramps and lower back pain.

  18. I went through the same surgery and I can tell things change as the years pass by.
    This week I found time to put everything on a video and share with others who might be going through the same issues. Here’s the link: https://youtu.be/681GN-IPmlo

  19. Thank you so much for sharing! Especially the trick about the breakfast tray on your abdomen…I was just trying to figure out how to keep my cats off of me!

    I’m having a hysterectomy (uterus and cervix) in March and I’m so excited, but also nervous, and this was so helpful.

  20. Thank you for sharing your story. I am having my surgery tomorrow. I am really scared….

Leave a Reply

Your email address will not be published. Required fields are marked *