Wednesday, October 04, 2006

Help

I love you people. I am surrounded by love and support from not only my family and friends here, but from so many of you...everything from beautiful flowers to books and toys and silly poodle get-well cards, to gourmet cookies, and even a ridiculously comfy Turkish cotton waffle-weave robe that came monogrammed "NinjaMamma," that in my currect condition, I put on and take off approximately 4,922 times a day, and I love it. Bella even got the sweetest little bracelet that made her gasp upon opening--pastel purple with a silver tab that reads, "I DO believe in angels." The great part about that gift is that moments before, she had just walked in the door to see me at home for the first time in almost a week, and she ran over and hugged me, then asked, "Mommy, what did you say when you were at the hospital?"

I answered, "I said that I sure did miss my baby girl."

"And what did you say about your baby girl?"

"I said that I missed her because she is my angel."

"Yes. I AM your angel."

And then she opened the little red box that contained the little "I do believe in angels" bracelet, and just flipped clean out when she found out what it said. So, GOOD JOB, you. (If you ask her, however, what the inscription reads, she will inform you that it says, "Only one angel can wear THIS bracelet.") Similarly, my wonderful friend Lisa who was my first post-op visitor, brough some sweet things for Bella, including a tiara that reads "Princess" across the front, although according to Bella, it says, "Only one princess can wear THIS crown."

Thank you, everyone, for your support. Prayers, especially, I could feel and was uplifted. I wanted so badly to talk to you--there were so many emotions and feelings and just...stuff that needed expressing, and I simply couldn't do it. I'm having a lot of trouble now.

Someone commented here on a previous post, something to the effect that they had a hysterectomy after endometriosis and did NOT do the estrogen-deprivation program. If that person is still around ( I just can't stay at this long enough to dig through the posts and find the commenter), I would love to hear more from you. Because I just don't think I can do this. I mean, I really, just, DON'T. I feel crazy. I feel unstable. I feel hot, and cold, and sick, and anxious, and like my heart is going to explode. I cannot live like this. Help? Anyone? I have a call-back from the doctor's office later today, when I can ask questions, and I don't even know what to ask. I'm trying to decide if I don't even care about the endo coming back because this is no way to live. I'm wishing I could trade back, and have the pain again, just to get rid of this heart-bursting anxiety. I'm wanting not to scar my daughter with the amount of time her mother spends in bed, and crying. I want my Daddy. I need help.

I just feel like I made a huge mistake. I have not known this quality of misery. There is a medication, "Evista," I think--I haven't been able to research it yet--that the doctor is planning to put me on, but I don't know what the side effects are, and as I understand it, it does not address hot flashes or night-sweats. And nowhere anywhere has anyone ever mentioned this insanely high anxiety level. The only time I feel ANY semblance of self-control is the hour or two after a dose of Xanax. So, yeah, if I could just take 8-10 Xanax every day, I might be able to soldier through. But how am I going to LIVE like this? I just should have put this off until I had more and more and more information. WHY didn't I do that? I always have before. I just feel worse than I've ever felt, and I can't do anything about it. I feel like I'm dying.

Can anyone help? Sources? Personal experience? Anything?

Again, thanks for everything, and sorry to disappear for so long. It has taken me forever to get THIS post done, in fits and starts, and lots of editing for typos. I might be able to read some. If you've tried to email and not gotten an anwser, I'm sorry. I'll do my best to handle that. The best address to use in ninjapoodlesATgmailDOTcom. I'll get there eventually, I hope. Right now I can't even imagine living a normal life again. What have I done?

UPDATE--Just got the call back from my doc, who asked what was going on, at which point I exploded into a blubbering, nonsensical, volcanic spewing of despair. Once he could make out what I was saying, he basically said that we're waiting on the pathology report, to see how much endo was present--he could not see very much, but that was with the naked eye--and that after that, we could make a call as to what could be done for my current symptoms, and for the time being, pretty much gave me carte blanche to take my Xanax and Percocet at will, to keep the racing-heart/blood-pressure/anxiety symptoms at bay. Because the post-op pain? Nil. So I haven't really been taking the pain meds since I got home. But he says they will help with calming, so, OK. Whatever.

So there we are. He mentioned everything from Evista to progestin to estrogen to depo-provera, and every combination in between. I know that when it comes down to brass tacks, I'll be the one who has to make the decision, and I'm clueless about the whole mess. Estrogen will help my symptoms, like anxiety, hot flashes, night-sweats, etc., but it will give my endometriosis fuel to grow. It's a no-win situation. I feel lost.

11 comments:

  1. I have never had endo, or a hysterectomy, but I do take Depo because my periods used to be horrendous, 21 day, full on affairs. A thermal ablasion and two years of depo later and the best thing about depo for me was the mood stabilising, not-being-tied-to-my-hormones side effect.

    I hope you find a solution. Please take a hug from us.

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  2. Oh, I am so glad to see you posting again. I am not sure what to tell you having never experienced any of this. My mom deals with the hot flashes and night sweats for the past several years due to normal aging, but does not have the anxiety attacks. She does not take any meds, but again does not have the attacks that you are having. I hope that the pathology report comes back with good news and you can take something to help.

    I will keep praying for your family. I wanted to send you something, but do not have your address and your mailbox is full:o) So sending my prayers and stay strong. Lots of hugs.

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  3. A. I'm just as thrilled as Bella that you are home!
    B. You just BARELY had major surgery -- of course you don't feel normal right now.
    C. A week ago you were panic-stricken and fully convinced that either your surgeon or your anesthetist was going to kill you, and this week you are panic-stricken and fully convinced life will never be worth living again. It doesn't appear that anybody actually killed you, and I can guarantee, from personal experience, that you will indeed feel good again, especially once you decide to relax and LET IT HAPPEN.

    I had both endo and polycystic ovaries, and had a hysterectomy when I was 43. Because I also have polycystic breasts, my Drs. and I made the choice to do without HRT of any kind unless it was absolutely necessary. I felt like shit on a stick for a little while, but I think that was mostly because it took time to heal from the surgery. Anyway, that was 20 years ago, and I've done well and felt GOOD ever since. So will you.
    D. Give this to God, Belinda. He's there for the heavy lifting, so that you have time and room to heal, to learn to live without pain, and to be the wife and Mom you've been missing out on.

    You and your family will remain in my prayers.

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  4. Remember, you have just done a very heavy duty job on your body with the surgery. You are young and your hormones do not know how to react. I have been there...panic attacks, weirdness, pain and can tell you that time will help with most of this. The estrogen will work. I ended up with cenestin because I didn't want to take mare's urine...just a personal preference. Write up a panic attack. That really helped me. Holding on to a slippery deck of an old ship with my bare hands, during a hurricane was the way I felt during one. Do you know anything about breathing? Deep breathing will save you. Inhale deeply and let it out as if it were a thin, thin straw. Peace. What have you got to loose. I hope you can grab something here to help. xogeezette with black poodle.

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  5. I don't have any advice for you except to say that I'm praying very hard for you and if you need anything at ALL, please call me. (((hugs)))

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  6. You'll be fine. let the body heal. Just let the body heal.

    Rest.

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  7. lesliepear asked that I respond to you.

    I didn't have the endo but did have a complete hysterectomy last year. Best thing I ever did. I was having the usual middle age symptoms, terrible periods, flashing, etc. I also was developing osteoporosis. My gyno put me on a soy based estrogen to help with the flashes and osteoporosis, just 1 mg. per day. After the surgery, my dosage was increased to 2 mg. per day with permission to take more if I found myself flashing. I really haven't flashed for months.

    My surgery was gone vaginally since they were doing a bladder lift while in there (I think they need to do another one but I digress). I don't remember feeling very bad and like you, really didn't have any pain.

    Hang in there, it will get better. Was yours a complete hysterectomy or did they leave some parts in? They couldn't find one of my ovaries but they disappear with age (who knew that?).

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  8. Haven't had any sort of girlie surgery at this point, but I do know that what you're describing is almost exactly what I went through just from quitting my birth control pills (extremely high dose pills to help with polycystic ovaries). My doc said it was normal because of extreme hormone fluxuation. It lasted maybe three days. So it could be that's what's happening in your case, as I'm sure a full hysterectomy messes with all of the hormones. In which case, just ride it out, take the pills to make you feel better, and know that it'll pass with time. And definitely address any and all concerns with your doctor. He'll be able to tell you what's normal and what's not, and help you get through it all.

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  9. Woo hoo! She's back and blogging! Welcome back, B. You were missed and we were thinking about you!

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  10. Lesliepear sent me too. :) I had a hysterectomy for endometriosis, about six years ago. I kept one ovary, and didn't do anything about estrogen. I had *wicked* hotflashes and night sweats and anxiety, the whole thing, and my doc put me on Paxil, which helps with menopausal symptoms. I didn't get on well with the Paxil, and eventually stopped taking it, but by then, the menopause symptoms had gone away on their own.

    I had five good years of no endo and no menopause, but the endo eventually started to grow back. I just had another surgery, a laproscopy, and I've decided to take Lupron, which is supposed to bring back the horrid menopause symptoms, but it *hasn't*. I've had maybe two hot flashes in a month, and only the slightest bit of anxiety. So, it looks like this will work for me, at least for now.

    Endo is a balancing act, to be sure. You've got to negotiate the options for yourself, doing what works for you. There is no one *great* answer, but there are a lot of good ones, you just have to decide which side effects you can live with.

    Feel free to e-mail me if you have any questions at all. I've been doing the endo thing for years now, I've had three separate surgeries and have tried pretty much all the medicines, so if it's first person experiences you'd like to hear, I have a truckload. :)

    Lisa
    (lkeele (at) livejournal.com)

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  11. My name is Janice Still and i would like to show you my personal experience with Depo-Provera.

    I am 24 years old. I have been on Depo for 9 years and did not realize that the symptoms I experienced might be related to the shot. I am now facing thousands of dollars in dental work due to bone density loss, and will probably end up with osteoporosis. I am getting off Depo and will never touch it again!

    I have experienced some of these side effects-
    Low libido, joint pain, bone density loss, dental problems, headaches, fatigue, out of control eating, gained 40 lbs., depression

    I hope this information will be useful to others,
    Janice Still

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