Friday, July 3, 2009

uncle

I know other people have said that the SECOND cycle of clomid (and tamoxifen, right?) was the bad one. I'm going to guess that's because it takes two cycles to change ALL your hormone levels. I've now been in abdominal pain for eight days. At least it changes up the kind of pain. If I eat anything larger than a cookie, for example, my stomach swells up huge and I have to lie down for a while. This morning (another new variety) I woke up with menstrual cramps. It's CD EIGHT and I'm not even spotting any more. My menstrual bloating hasn't gone down at all even though that's long overdue, and that's adding to the discomfort. (Sew, is this what you mean by "endo belly"?)

This whole business is exhausting. It's a long weekend and we have company - in how many social situations can you sneak away to lie down every hour or two? And while it could go away any time, I know I could be in for twenty more straight days of this.

Oddly, my thought process is, "Endo is supposed to mean daily pain. I've never been a normal endo sufferer, but I couldn't dodge this bullet forever" - and NOT "Normal women do not have endometrial adhesions in their abdomens and they are not in constant pain." At some point, I threw in my lot mentally with the chronically ill - that's who I am now.

Anyway, all this gives me a couple of big questions and I hope some other endo gal(s) can help. First question: is there anything I can do for the pain? Pain relievers don't seem to help - is there one that works better? Would a heating pad help? I don't feel like exercising, but would that help? Is there some food I should avoid? I'm thinking about consuming only juice and crackers - I still have a normal appetite, but eating dinner has gone badly.
My other question is more long-term. Is this worth doing for a third cycle (or more?). If I don't, surgery is next, but Dr. L already said she doesn't think the tamoxifen will work without surgery. I can deal with the pain if there's a good reason, but nobody really believes I will get pregnant. In that case, is it worth it to deal with the side effects? I don't even know whether my insurance will pay for this surgery (they should, all this stuff really needs to come out). I was planning to deal with all this later, but I guess I need to think about it now.

You know what, though, in other news, it's been an awesome weekend so far, and it's just getting started. Happy 4th everybody!

6 comments:

  1. Just saw my dr this week and told him I just can't do the evil clomid and he said we should switch to injectables bc clomid makes your estrogen wicked high and injectables are more controlled. Okay, good to know. Oh and get this. Because the clomid made my estrogen so wacky my body is now weaning off the insane amount of estrogen and giving me regular migraines. Yeah, fun stuff. Argh!

    Regarding endo, chronically ill, being tired. Have you read the spoon theory?
    http://butyoudontlooksick.com/navigation/BYDLS-TheSpoonTheory.pdf

    Oh, and I've heard that Castor oil with a heating pad is good for endo. Other than that I just did the heating pad like every evening, all evening. Sorry you have company there and you are bone-tired. :(

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  2. I took Al.eve for my endo pain and that seemed to help. I never had to use a heating pad but I've heard it helps. I had stage one and I know every stage hurts different for different women. It's a strange disease but I would say the surgery is worth it. I now don't have to take any pain pills until the day AF comes. Woohoo! I had adhesions, cysts, etc going on besides the endo so...other things were adding the pain I was dealing with. Dairy, caffeine, meat, etc are all not good for endo.www.endo-resolved.com is a good website to check out and learn more about endo and all the foods to avoid.

    I hope you can get through the weekend without much ado. I've been there and somehow manage...usually feeling relieved when the guests leave(so I can do rest). Happy 4th to you too. GOd Bless.

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  3. Eating a majority of protein always helps - lay off the grains and starches. That always helps me - carbohydrates make you retain water more easily. Heating pads, hot water bottle, hot castor oil compress, hot bath all help but usually only temporarily.
    I've always heard that those medications Tam. and such do a number on the endo growth, so there may not be much you can do about it...
    I would push for surgery, but only if you can have an excision doc do it - I had two by non-excision docs and they did more damage than good in there. Which is why I ended up at the CEC. There's no point in opening up someone and burning the endo - you have to remove every piece of disease.
    I'm sorry you're feeling pain - I always am so jealous of those with endo who don't have any pain (as it that makes the disease any less horrible), but it sucks that you've changed sides :(.
    Hope you manage to have a good weekend anyway :).

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  4. I don't have any experience with endo pain, but I'm sure sorry that you're having a rough time with it. It seems like you have gotten some good advice! Hope your weekend was great!

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  5. Ay ay ay, that sounds like no fun at all, Misfit! Looks like good advice above--I'd be quite surprised if insurance didn't cover treatment for endo (though those jackasses are always full of surprises).

    I hope things get better fast.

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  6. Sorry to hear about the pain! Yuck! I've been feeling this past year like there's a vice clamped around my pelvis. Going in for lap surgery to look for endo in a few months. Arrgh.

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