Tuesday, November 22, 2005

Hope, Pain, And Timing

It's that time. It's that time again, and it's getting to be "that time" for good. I spent today wrapped in a fetal position around a heating pad, full of ibuprofen, narcotics, and whatever chocolate I could get my hands on, which was precious little (fortunately my wise and good and survival-minded husband came home with foods from the salty, crunchy, cakey, chocolate, and cola families).

As has been mentioned here before, I have, like mega-stupendous endometriosis. That's not the technical term, but the world-renowned specialist who did what I refer to as my "GOOD" surgery (the one that lasted 6 hours, actually got RID of the tumor and all the rest of the endo down to clean tissue, and oh, incidentally, saved my LIFE), said that while there are only 4 recognized "stages" of endometriosis, 4 being the most severe...mine was a "stage 5."

Anyway, it hurts like a son-of-a-gun. I've had 3 surgeries, had one oofrectomy, done progesterone therapy, taken continuous birth-control-pills, and seen a pain-management specialist who basically had me on "walking Demerol" every day of my life. It became normal, if that makes sense. I just hurt. Every day, but especially during periods and ovulation.

SO...winding finally down to the point of this self-centered rambling is this: My GOOD surgery was in July of 2000, in New Orleans. Dr. Cook told me, at that time, that my case was so severe, that even this intensive operation would probably buy me 5 years of "remission." And...we all know what year it is now.

Alex and I were married at the end of 2000, and I stopped the CBCPs the summer of 2001. (The continuous birth-control-pills help to keep the endo from growing by keeping you from having periods.) I got pregnant in January of 2002 (after being told by every "regular"--by which I mean not Dr. Cook--doctor I'd seen that it couldn't happen, not with my extensive disease and only one ovary), and Isabella was born October 20, 2002. Pregnancy and breastfeeding are also supposed to keep the disease under some control, but then, breastfeeding exclusively is also "supposed" to keep you from cycling--not so with me. I breastfed that child for two and a half years, never using a drop of formula, but 28 days after she was born--bingo--right back into "circulation" I went. I figure I have have super mega-hormones--the evil ones, anyway--and they can overcome anything, and that their ultimate goal is to kill me before I can have a hysterectomy.

So, ladies, if you've lasted this long (I'm assuming the guys dropped out somewhere around the first mention of "periods" or the graphic of the flashing uterus--comment and tell me if I'm wrong, fella[s], and I will respect you as a he-man forever), this is the issue before us now. The pain, by which I mean THE pain: my old, familiar, onetime omnipresent companion, is coming back. It's not anywhere near what it was before the GOOD surgery, when I could count on at least two days a month of lying on the floor screaming and clutching my abdomen (think I'm exaggerating? I'm not), but the cycles are getting shorter (24-25 days, currently), and I'm also having pain--equivalent to what most women probably experience during their periods--during ovulation.

We're pretty sure the Beast is back, or at least steadily on its way. To stop it, or slow it down, at the very least I'd have to go back on CBCPs, and the most radical action to take would be hysterectomy. For me, and all the places my endo was, hysterectomy would most likely not be a flat-out cure, but it would be the most I could do in my own defense against the Beast.

We have been trying for a year now for child #2, and did in fact have a pregnancy of about 2 months when I miscarried last December, and zero luck since then. So the question becomes, how long to keep trying, what measures to take to improve our chances, and when to "give up" and just take care of me, and treasure the little family we have. My sister, who is 5 years younger than me, and has an 8-year-old son, has also had no luck at a second child, and has been through the mill trying, for years now. Bella talks about "a new baby" all the time, and as much as I adore my sister, I'd hate for Bella not to have a chance at that relationship. I just don't know what to think, say, or do, but thanks for letting me go on. And on, and on. I just hate the pain, but if I could somehow know there was a reward waiting, I could take it for awhile longer. The years of suffering before Bella came along just melt away when I look at her.

And if this ridiculously long post were reduced to one sentence, it would be: "I WANT ANOTHER BABY, and then I'll be ready for the spork."


  1. I'm so sorry. Sorry for all the pain you've been through. I have no answers or even suggestions for you. What does your heart say? I know "i want another baby" but what are the consequences? The pros are, of course, obvious - the beautiful baby.


  2. I'm probably the wrong person to ask about how long you should keep trying because I tried for 8 years with many surgeries, advanced reproductive technologies and 4 miscarriages. Call me stubborn or persistant or just plain stupid, I wouldn't quit until I got what I wanted.

    With that in mind, I don't know what kind of doctor you're seeing but I'm hoping that it is a reproductive endocrinologist. Do you belong to Resolve? They might be able to help you find endo specialists that could give you more definitive odds.

    If you want another child, and I believe you do, you could try a lot of different ways of getting that child, from surrogacy to adoption, to IVF. There are ways, but you have to be financially viable. I guess if I were in your situation I'd make an appt with an RE immediately, and go on the BCPs unto you have a chance to get into the doctor's office. If you're having pain during mittleschmittz, then it's likely that the endo is back bigtime and you need to figure out what your options are. Do you want to try for more surgery?

    Whatever you decide, I know it will be the right choice for yourself and your family.

  3. You're an amazing person. I don't doubt 1 word you've said, but what amazes me is that you are putting off possible prevention to have another little angel. Don't get me wrong, I totally understand where you're coming from.
    As I've gotten older & the recent situation i'm dealing with, I am astonished at the strength we women have. As individuals & as a whole.
    I'm sorry you hurt, I wish I could help somehow. I will keep you in my thoughts & prayers. You're a dear, dear soul.

  4. I'm so sorry :( What a dilemma to be in. I only knew a little about your story today, and didn't know just how very special a soul Bella is (yes, all babies are special, I can't think of any other way to put that!). Is another GOOD surgery an intermediate option by any chance?

    Best wishes and hugs whatever you decide

  5. How did you manage to be funny in that post? Sorry for all of the suffering. Do you think about adoption? As a single, childless hypocrite I think that adoption may be the noblest choice anyone can make.

    I laughed at your comment about men reading. I'll admit I saw the title, let out an "uh-oh" and was about to urgently click "beam me up, Scotty" when my fear of cowardice over-powered my fear of estrogen. Glad I stayed. You have my admiration and sympathy.

    I'll end with a tip of the hat to your husband. I remember frantic chocolate safaris from when I was only childless.

  6. oh goodness, I wish I could say something sage and wise that would like a beam of light through the clouds provide you with this unbelievable clarity to make a decision. Sadly, I can't even get clarity for my own life.
    I do hope you feel better soon, the pain goes away.
    Pray on the life choices, whatever you decide, know God has sent you to that path.
    Hope you have a nice Thanksgiving.

  7. Jess--remembering the pain from "before," this is nothing, and I can wait awhile. But I am going to be 40 a year from now, and that's a factor, too. As for consequences, well, when it was bad, it was most likely 10-15 years'growth. So 5 years from a clean slate, and the symptoms just recently resuming, I'm probably OK for a while. Just hurts, which I can handle. What with Andrea and I each only having one child, and Alex only having one sibling, and both of us having already lost our fathers, our family is getting so small...we want Bella to have more.

    Margalit, last I checked, there were two REs in this state. I've seen 'em both, and may go back to the one I liked just for a consult. If I had another surgery here, one that is covered by my insurance, it would be the standard cautery surgery, which is a short stopgap at best, even by a RE. I wouldn't go as far as IVF, but I would consider adoption...Alex is adopted, though, and he has some different feelings about it, I think. He loves his family, though, and God knows they are wonderful and loving.

    Aww, Jane...it's nothing that will kill me (yet) like it was before, it just hurts, and when I wrote this, it was the worst of the bad days. Yep, women are tough. When I had my GOOD surgery, I remember the nurses afterward saying, "I can't imagine how you were walking around." Well, when you aren't given any other options, you just DO, right? I do need to make a decision in the next few months, though, I believe.

    Doug, hooray for you! I knew if any man could do it, you could! Hey, you gotta laugh when you're happy to be alive and have a miracle child to boot. And yes, the husband deserves accolades. He comes through as a hero in times like these. If you read back through the New Orleans story I linked to, you know what I mean.

    Lara--I would LOVE another GOOD surgery (it's the micro-laser surgery--ecxision down to clean tissue at the microscopic level, as opposed to what they normally do for endo sufferers, which is basically going in and cauterizing what they can see with the naked eye, as I'm sure you know.) There are only half a dozen or so places in the U.S. that do it, and you're looking at a cost of probably at least $35,000 or more, not covered by insurance...my procedures at Omega, including the double-hernia repair (endo does that for you, too, wheee!) and bowel resection (the incorporation of the tumor through my bowel is what was about to kill me--they estimated I was within 6 months of perforation) wound up being around $80,000. Thank God for my parents, who took out loans, and that I was able to fight my HMO for in-network coverage. We chose to have the hernia repair at Omega, too, after being told by "in-network" doctors, including a "hernia specialist" that I did not "present" with hernia and anyway "women don't really get" hernias. Dr. Cook estimated at that time that over 70% of his endo patients also had hernias. He located mine in the initial exam in about 30 seconds. When it comes time for the hysterectomy (and I do think it's just a matter of time), I will certainly check and see if one of the GOOD surgeons is a possibility. Dr. Cook is in CA now, so I don't think he'd be an option for me, though he would of course be my preference. I am going to consult with him via e-mail on my current situation, though.

    Thank you all for your kind thoughts. I feel better, even after being up all night!

  8. VG--Thanks for that last: "Pray on the life choices." That IS where to concentrate, and I shall.

  9. hello sweetheart. take heart in knowing that you will know what to do when it is time to do it. until then, you can think and worry, but no path will be clear.
    i think that's one of the coolest things that God does: He gives us the clarity to see what needs to be done -- just when it needs doing.
    you'll be in my thoughts over the holiday.

  10. Belinda, you poor thing. I can't imagine what you are going thru.. so I'll just send "feel better soon" vibes your way.

    And I think I invented the perfect PMS treat - vanilla ice cream with chocolate covered pretzels swirled with caramel. Maybe Ben and Jerry can come up with something ;-)


  11. Seems to me Ms. Bella wanted to be born, and nothing, not BC pills or endo was gonna stop her.

    Anyway, this only child really wasn't that miserable. Most of my childhood unhappiness was derived from an alchoholic father, not my "only" state. It seems to me, little Ms. Bella's mighty loved and in the end, that's what matters.

    I'm so sorry for your pain. Makes me appreciate my funky, have a period whenever it feels like it, body. I hurt, but never that bad.

    Medicate heavily with yummy Thanksgiving food. Pie, yep, pie.

  12. Well, I hadn't bailed past the flashing uterus until you pointed ou that all the other men were gone.

    Then I felt peer pressure to stop reading too.

    Take care of yourself and have a happy holiday!

  13. Happy Thanksgiving, Belinda, to you and Bella and the chocolate hunter. God bless.

  14. tom cruise would probably tell you to take a multivitamin and be quiet.

    what a poopie-head.

    i wish you the best, dear. i think you'll be fine.

  15. i'm so sorry about your pain. at the first inclining for me i just pop down pills like they're going out of style. ah, i can't stand it!

    if i understand what you wrote clearly, it's either a baby and no birthcontrol, or no baby and birthcontrol that would help with the pain. that's hard dilemma to be in.

  16. I know a lot about that pain which is why I couldn't leave a comment when I first read it--felt yours too much

    Being older than you I was told for many years it was all in my head duh duh duh--until I began passing out everywhere

    Anyway it's a very hard decision and one that only you can make. Being adopted I recommend it, but know all the pitfalls now

    Hope you have a wonderful wonderful Thanksgiving

  17. Alright, I admit it, I bailed on ya too, you have well wishes and hope and prayers.
    As to the more kids thing...let me know, mine are available really cheap from time to time and they come mostly house broken!

  18. Hi there.
    I was sent your way by a friend on LJ. I have had endo for 10 years now, 2 surgeries, and its now back with a vengence and bad. Im scared and tired of it all. Maybe we can chat sometime?

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  22. OMG that really stinks that you have to go through so much pain, but thank god your okay. I go through a lot of pain too, but it's not at bad. I suffer depression.

    Also, Jane, that comment you left was really sweet. I read your whole comment and nearly cried. You seem so nice, and I agree with you.

    Belinda, you're lucky to have Jane as a friend and also everyone else here. You guys seem really nice.

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