Everything Must Go: Heidi Health Update

Because I’m posting this on April 1, I feel compelled to begin by saying this is not an April Fool’s joke. It’s also not about books or writing, so if you’re subscribed for that stuff, feel free to skip. This is the full story of my weekend hospital adventure, with a coda now that I’ve been to see my regular OB/GYN yesterday.

The short answer is that I went into the hospital not because I have “some cysts” which were causing pain. I had a ton of endometriomas (chocolate cysts they call them–gross) and severe endometriosis. It’s all over my pelvic cavity. All over. I have “frozen pelvis,” which means every pelvic organ is locked up because of the level of endometriosis in there. My uterus leeches out endometrial lining, it attaches all around my pelvic cavity, and every time my ovaries turn on, it makes those cells grow. The only way to stop it is to remove the affected tissues as much as possible, my uterus, and my ovaries. In fact this is so severe in the meantime they are shutting me down chemically. As soon as they wrangle with my insurance, I get an injection which will begin shoving me chemically into menopause until they can go in and surgically do so.

Not only will I be having a full hysterectomy, I won’t be having a laproscopic one, because my doctor is wants a clear line of sight on everything and wants to take all the endometriosis she can, and she worries doing it laproscopically will mean she misses something or cuts my urethra or bowel or something very bad. So this will be a full-on six week recovery from major surgery. They want this to happen sooner rather than later, too–hence the chemical menopause until we get the job done.

I have to say, I don’t know quite what to think about this all yet. I knew over the weekend I had more surgery, but initially I thought I could keep my ovaries. I understand why I can’t–if it’s so bad and so pervasive, keeping my ovaries will mean the endometriosis will keep growing. Removing the endometrium alone does nothing at this point–I’ve farmed out so much of my uterus into my pelvis, it can regenerate itself in fucked-up form at will. I feel weird about it, and sad, and angry. This doesn’t exactly explain everything that’s ever been wrong with me–there’s some evidence that this might go chicken-and-egg with auto-immune issues, which I clearly have in some manner…but it’s not like doing this will make all that go away. Maybe calm down, maybe not.

That definitely bothers me. It makes me angry that I’ve basically lost ten years I should have been able to be ten times as active as I’ve been because of health stuff, and now I get more crap. It makes me feel cheated because I shouldn’t have to turn menopausal at forty. Hell, I haven’t even fully processed through the version of me at twenty who wanted four, five, six kids and got one. Looking at this, I guess I’m lucky I got the one at all.

I keep trying to do this thing where I decide this will be the moment everything changes, that I’ll do this and it’ll be a bright new dawn of health, that I can climb on top of it and start over at forty. Look back in forty more years and call this my big turning point. I’m not giving up on that vision, but I think this week is the week I’m hurt and angry. The week I ask Dan seventeen times if this is really what I have to do. The week I pout and rage and hide under a blanket and be furious that this has to happen at all.

Objectively I’m glad I don’t have cancer, or MS, or any of the million things which are ten times more horrible than having to have my lady parts  removed. Emotionally, though, I’m still stuck in the quagmire of fear and confusion. I think honestly it’s the curse of the modern era. One hundred years ago you could still see death and disease, still feared of living through childbirth and infection. Today we all feel we have the right to live to one hundred. Anything less than 90 is a cheat in our eyes, and we should be able to get there as spry and wily as Betty White.

The truth is bodies are frail, and even with modern medicine, they fail us. The truth is many things should have killed me by now, and that I won’t be crippled by pain for the rest of my life is the real miracle. That I can stop this with very little risk to myself is huge. It’s a good thing. And this really could be a new dawn. I could become a spry Betty White at 90, looking back at this moment as the one my life truly began, at least on some level.

But today I’m just angry and frustrated. Today I still hate the healthy joggers and bikers who aren’t exhausted by life, the people who don’t wake up wondering if they’ll hurt everywhere, who can eat whatever they want and don’t have to think actively about their health. If I’m a Tarot card, today I’m the 10 of Pentacles–I’m in the damn doorway, knowing what I have to leave behind, but not yet willing to walk through the door.

When this happens and how is still being debated. I need to talk to my family about when and how we do this. Maybe July. Maybe September. I’ll be up front and say I might have to pull out of fall activities for this. It really depends on so many things and how they pan out. I’ll keep you posted when I know the details.

To head some of you off at the pass: this gynecologist recommending this treatment is the one Dan picked for me, and Dan was at the appointment. Yes, I really do have to lose my ovaries. Technically this is my second opinion–I’ll be asking a family friend and my MIL for input as well, but pretty much there’s no reprieve from this. I trust this diagnosis because I trust my husband and because what she said to me makes sense. And honestly I’d rather err on caution than wistfulness. I could see ten doctors and it’s not going to change those pictures inside my pelvic cavity. There’s nothing turning off that growth and pain but this.

In any event, that’s my update and where I’m at. Thanks for listening.

34 Comments on “Everything Must Go: Heidi Health Update

  1. Just know that we love and support you first and foremost as a person, more than anything else.

    Do what is going to make you healthy, and ultimately, happy.

    Do what is best for you and your family.

    Know that we will be here rooting for you.

  2. Get it done sooner rather than later. In the end, it’s better than what you’re suffering through now. Don’t let your anger paralyze you. Grieve, but move forward. When I had mine done, due to uterine cancer, I wanted it out – now! I actually waited until after the GRL to have it done. LOL! The recovery time was a good 4 weeks, but another 2 before I felt really good. I had both the lapro and the exterior slice – because they needed to extract everything intact.
    Trust your doctor. This is your life – taking charge of getting better by doing this is empowering. It’s scary. It’s losing a part of you that we women define ourselves with and that’s hard. Really hard.
    I still haven’t had a single menopause symptom, and I’m not on any menopause drugs, and it’s been since GRL New Orleans.
    You’ll be fine, esp. with all the support of your friends and family.
    Good luck and good thoughts going out to you.

    • I had a total hysterectomy at 40 as well because of some major issues with fibroid tumors. I had a midline incision and it took me a long time to recover, but I only had one hot flash and sailed through menopause. I’ve never taken hormones of any kind. I know that it’s scary and there is definitely a sense of loss, but when you consider what you are gaining in the way of health and happiness, then there’s no contest. Thank you for sharing your thoughts and fears with us. If we can help, please let us know. In the meantime, sending you love and healing.

  3. *HUGS* I had fibroids, so just had my uterus removed laproscopically. BEST THING EVER. It was life changing. I recognize that things are a lot more complicated with a non-laproscopic complete hyterectomy, esp in the aftermath. But anyone I know who’s had that surgery done for endometriosis has been so much healthier and happier afterwards – we’re talking orders of magnitude improvements.

    Obviously you need to go through the stages of grief and then the surgery before you get there, but… Better days will be ahead.

  4. Sorry you have to deal with this. Getting thrown into menopause early sucks – hopefully the up side is you will feel better with the endometriosis and cysts gone.

  5. Heidi…I’ve been thinking of you each day as you’ve been struggling with this. Thanks for your candor and for sharing…and just know that all the positive and healing thoughts I can muster are being sent your way. Love you…

  6. Hey sweetie, i know the experience. Mine was due to cancer. Living without the hormones has dumb, not ideal consequences, but good life goes on. Thinking of you with hugs and love. : )

  7. Heidi, I am always amazed by how brave and strong you are, how you take each challenge and adapt and make it all work. Most people would have been felled long ago by what you deal with daily, and you are so amazing that you handle it all with such grace.

    So you totally deserve your days of weeks of anger or even self-pity. What is happening to you sucks and is unfair and is just more shit piled on top of an already nasty sandwich. But knowing you, you will kick this in the ass in no time and move forward.

    I am putting all my hope and prayers for you that this is in fact the step that will make a real difference for you. You deserve it for sure.

    I know there is not much I can do from here, but of there is ever anything, just ask. ❤

  8. Yes, ultimately everything must go. I’m so sorry you need to say goodbye to some dysfunctional parts of yourself. By the time my Mom was in her late 80’s, she identified herself as “parts missing”. We used to by Cornish game hens and capons that were parts missing (I know, the capons were already parts missing, but extra parts like wings were also missing), so it struck us as a funny comment (she was missing a breast, her uterus and 1/3 of her colon). It’s not much of a bargain to consider keeping parts that will kill you, but it’s still not easy.
    Do you know Fern Kupfer? You might want to chat with her.
    Know that Mark and I love you.

  9. I’m so sorry to hear about this. Please do allow yourself as much time as you need to vent about it, and how it isn’t fair, and what have you done to deserve it (nothing, that isn’t how it works). Repressing those feelings will make it feel even worse.

    I’m reassured by the fact that she doesn’t think it is sensible to do it by laparoscopy, even if it adds massively to the ill-effects of the operation for you, because something like this does need to be done thoroughly and once and for all. And I’m sure, therefore, that she will be talking to you well in advance about the best medication to take post-operatively to minimise the hormonal effects.

  10. Hang in there Heidi. I had to have the same procedure. All because of endo. Decades of pain and now a scar from hip-to-hip my reward for enduring. Oh, and come to find out my cervix was pre-cancerous. I went through a tough time before the surgery contemplating what makes a woman. Conclusion, it wasn’t my reproductive organs, it was me. So hang tough and soon you’re going to feel awesome.

    Isabella

  11. My thoughts and prayers are with you in this time Heidi. I can’t imagine what you’re going through, but I do understand the grieving of loss. You have every right to feel this way. I wish you a problem-free surgery and recovery. Great, big comfy hugs.

  12. First of all: *hugs*

    You do what you need to do to get healthy. If you need anything, let me know.

  13. ((HUGS)) It sounds like it’s the right thing to do to help your overall health and pain levels. Give yourself time to mourn what you need to in terms of life changes, and then try to reframe from that point on in terms of positives by doing this. (No more monthly tampon runs! 🙂 ) I hope this gives you the relief you need. ((HUGS))

  14. Heidi, I totally get what’s going on. I had fibroids. had a partial hysterectomy, couldn’t do the lap cuz the fibroids were every where and really bad. found out that a ruptured appendix at age 20 messed up my tubes so having kids, while I wasn’t planning on it, was definitely a no. so I ended up grieving big time when my sister had her baby girl. once I got past that it was like Hoorah! free, free, free and finally feeling so good. I wish I would have done it sooner instead of listening to my MD. the shots to stop my period, didn’t work. who knew? So I am glad you have family support and fan support <3. sending lots of hugs your way. oh yeah, another snow storm heading to MN by Friday. I am so tired of this crap.

  15. It’s funny how medicine never seems to treat guy problems by slicing things out/off, even though testosterone is absurdly easy to supplement and certain guy parts can be faked with implants…

    I’m so sorry this is happening to you and it’s downright weird how many women in our generation I know who’ve gone through this. That said, to a woman they’ve come through on the other side pain free and are living much easier for the surgery which is of course what I hope for you, too. Grieve for the things in your life that won’t be, but also have faith that there are bad things that won’t be, as well. I wish I could do more than mouth platitudes right now, but I’m too far for hugs and casseroles. I’m sorry, but it’s the Lutheran in me :-/

  16. I’m so sorry you’re having to deal with this. Just texted you, am very glad to read of people here saying they wish they’d done it sooner. I have a feeling I’ll be in that boat soon, at least I hope I’ll be glad when it’s done. But right now, right where you are with it. Biggest hugs and love from all of us!

  17. The bright part of this is that you won’t have to spend forty forevers going through menopause and believe me, that’s a blessing! Do it, get it over with and smirk at all those who moan and groan over it for years.

  18. Sorry you are going through this. There will be so many emotions going on inside of you. Talk with family and friends. Lean on them.

    I also sent you a message on Facebook.

  19. I’m so sorry to hear this. I will wish for an all’s well and speedy recovery.

  20. Unfortunately at this point in your life this totally sucks but you will get through it. Down the line when you look back this will be just a bump in the road but every now and then it helps to share because it does make you feel better. All the luck to you Heidi and I hope for a speedy recovery, you will get through this!! 🙂

  21. Hi Heidi–I just had surgery last week on chocolate cysts and have endo scar tissue gluing my organs together. I see the doc tomorrow for postop, and is love your wisdom and advice on questions I should be asking. –Karen

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