9 April 2009

Low, low, low

My day started with a small success: I got out of bed, went to the bathroom and got back into bed all by myself. Unfortunately my small victory was the happiest thing that's happened to me today.

After I went back to bed and read for a little while I fell back asleep. I called down to Mr. JB to help me get changed (bending is still an issue), but I couldn't get out of bed. I spent the better part of an hour just crying. I've been so angry at the doctors and at the fact that my stage 4 endo and the rest of the mess in my pelvis have gone undiagnosed for over 17 years. I made my first complaint to my family doctor when I was in my second last year of high school. I remember my mom, who is a nurse, took me to the doctor because my period pain was unbearable. The doctor suggested putting me on the birth control pill, something that my mother completely and utterly disagreed with.

I'm so scared that now, when it finally matters, that the doctors that have ignored my cries for help, have ruined my chances of becoming a mom. My surgeon, when asked on Tuesday, didn't want to commit to an answer when I asked him what our chances would be after my second surgery. But at this point, after almost four years of trying, I'm feeling very little hope.

I'm in serious mourning folks. I'm not used to feeling sorry for myself. I'm also not used to being so angry. All I want to do is curl up into a ball and cry.



  1. I promise to keep praying for you, JB!! I'm crying here with you ... but I have hope for you still. A LOT of hope, like I said last night.

    I am putting my money on you, JB! You are getting the help you need now, and its NOT too late.

    Yet I know how angry you feel and I'm pissed for you, too. For all of us. I've found myself in a fit of rage over this very thing. Why and HOW in this modern age of medicine did our endo get so bad that it seemed to take over EVERTHING down there? Why couldn't it have been just a little spot here and there???

    Somehow we have to trust and not despair. I have not been the best at this. I am a miserable failure, in fact!

    Let yourself cry, feel the hurt ... then, when the time is right, God will put that hope back into your heart. Until then, we will hope FOR you!

  2. Oh how my heart hurts for you. You finally have an answer, but what an answer.

    I agree with LifeHopes, though, let yourself cycle through all of these emotions. They suck, it hurts, and it is usually pretty ugly, but you will need the strength that it gives you.

    You will have better days, less painful days. I promise. Just hang in there.

  3. ITA with LifeHopes... it is NOT too late! I know you feel that way now, but hon, you're in pain, you're post-op... depression is inevitable right now.

    It could have been worse. You could have been put on the bcp back then, been on it for years and years, and now you'd be a lot worse off.

    I'm so sorry you're feeling so low. It will turn around, I promise! I'm hoping that on resurrection day, your spirits will also be resurrected!

  4. i hope this grief will be a distant memory for you someday... thinking about you and hoping the months ahead bring you some kind of peace.


  5. Oh, JB I'm so sorry that you're going through this. I know that it feels like you've hit a road block, but you've got some answers and a possibility of fixing this. Take this time grieve and get your strength back.

    Thinking of you and praying for you.


  6. I recently read a study that said it is easier to get pregnant with stage 4 endo than with stage 2. It has something to do with the immune system being in full force with stage 2.

    After the Lupron and second surgery, you may just be cleaned up enough for things to work. It isn't over yet, JB.

    You do have to mourn this. As we have gotten each diagnosis in this battle, and there have been many, I have gone through a mourning period. You just have to allow yourself time to grieve. And be angry. You have every right to be.

  7. Let me bring you a little bit of comfort - shall I - here we go.
    I was dx with stage IV endo at the ripe age of 18 (with bilateral ovarian involvement) and had 3 surgeries, I imagine you too would have had surgeries too - which would have caused even more advancement, more scar tissus, permanant ovary damage all from having a surgery - and then waiting a decade or so before trying to have a family.

    So you have every right to be angry, but, it may indeed be a blessing (for example, when I had my first surgery I was told that if i wanted to have kids i should have them then - because after your first surgery is when you are THE most fertile). SO this means that because you waited, you have a partner and at the very least can try to get pregnant after surgery

    ALl that said, you have every right to be miserable scared and angry, so embrace all those feelings.

    AND i really do think this will work for you, you have such a dedication - hugs JB.

  8. I"m so sorry for your pain. ((hugs)) ITA with Lifehopes and the others. You and all the rest are in my thoughts and prayers.

  9. I am so sorry you are feeling so down. Please know that you are not alone and you have friends here. I am thinking of you and praying for you!

    I had endometriosis stage 4, with endometriomas on each ovary, and adhesians too. I was first diagnosed with this last year after my first surgery on Feb 12th 2008. I just had a second surgery on April 1st, a laparoscopy to remove the rest of the endometriosis and adhesians.

    I want to reassure you that you will feel much better in a few days.

    One important question to ask your doctor before he operates on you again is: how is he going to remove those ovarian cysts? Is he going to drain them? Or remove them from the ovarian wall?

    The reason I tell you this is because the first surgeon who operated on me just drained my cysts, he did not remove them. I was told by my Napro doctor and my second surgeon that just draining them is a BIG no-no because if they are just drained, they will grow right back.

    Hubby and I are in our forties, but we are still hoping and praying to be blessed with a child!

    Please know you are in my thoughts and prayers!

    I pray you will feel better soon!



  10. I am so sorry you are feeling so hopeless and angry right now. It's ok to ball up and cry.

  11. I'm so sorry you're feeling so bad. I'll be praying, too! I know I was really discouraged when I found out that I had to have a second surgery. But good for your mom for keeping you off the BCPs all those years ago! And now you have a really good surgeon who will do the surgery right. Who knows what might have happened if you had had surgery back in high school--Duck makes a really good point about the damage that could have resulted. I hope you start feeling better soon!

  12. Oh honey, I can feel the heartache - I so wish it had all went better for you. I am praying for you hon xxx

  13. I'm still praying for you and will continue to pray. I'm especially praying that Friday brings you more peace. Hang in there and be gentle with yourself.

  14. Hey, it's okay to be seriously angry at not getting the help you needed desperately, and it's okay to be exhausted and very sad. There's no need to feel bad for feeling bad and sorry for what's happened to you; you're feeling what anyone would feel.

    You're going to make it through this, and we're hear to listen, support, and love, until, as LifeHopes so kindly put it, hope returns.

    Wishing you some rest and moments of comfort this weekend.

  15. Sending you some serious prayers right now!!! The other ladies have given you some great advice. Know that we are with you - crying with you, hurting with you and hoping for you. xoxo