Saturday, June 20, 2009

It's time I talk about that gynie visit.

Finally. I'm taking a moment to put it here, the big decision in front me for the treatment of the endometriosis which continues to cause me much pain and frustration. I saw a new gynecologist at the end of April. He was thoughtful, thorough and took the time to listen to my concerns, and surprisingly seemed to know alot about endometriosis, either through experience or through research for my case. I was pleased with how much of a discussion it really was, and truly thankful that Hubby was with me so he could hear all that the doctor said first hand. He was sympathetic and kind, and is taking my concerns very seriously.

I've been trying to think of a way to speak of all this with ease and in a matter of fact tone, but in the end, it is all very personal, very emotional to me. For years, the possibility of a hysterectomy has loomed and I've never been able to get the "h" word out of my mouth until recently, mostly because I hold onto a minuscule hope that God will heal me for the window needed in order to be pregnant. I know. That seems ridiculous. But it takes time to let go and frankly, I'm a hopeless hoper. But over this long haul, I'm accepting it. Processing it. Walking through what it will be like to fully and finally end the possibility of experiencing pregnancy and childbirth.

It's an emotional decision for me, mostly because I've really had the control of this decision taken away from me. I am somewhat driven by how this disease and all the effects of it are starting to interfere with the VERY full life I want and intend to lead. And therefore, since it is interfering, I MUST...I MUST give up one dream for another. I must give up the dream of one experience ~ the miracle of being a part of creation and bringing a child to life ~ for another, living long and healthy and active with the two amazing miracle children with whom I share my life. THAT is the dream I am determined to achieve and I am praying for healing (which is a whole other post) through the hands of the doctors, that in treating this awful disease I will gain so much in living.

In essence, based on Dr. D's physical exam, and the surgical reports from my laparoscopy in 2001 and 2006, and considering the symptoms I report, he feels very strongly that if I choose a hysterectomy, which is major surgery anyway, it will be more complicated with treatment for three months prior to the surgery with drug I've had before (it puts my body into a pseudo-menopause) called Lupr*n, a drug I swore I would never take again. This drug made me an absolutely miserable human being inside and out. I couldn't sleep at night with sweats, nausea and achiness, but then struggled to be alert and stay awake during the day. It made me irritable (more than usual?!?!) and I gained nearly 30 pounds in four months. Needless to say this was the first tearful (but not the last!) moment in the visit. I nearly lost it thinking of what that drug did last time but the doctor assured me that it wouldn't be for more than three months and that if I had the worse side effects they would discontinue and move forward with the surgery.

He hopes this drug will decrease the inflammation of the adhesions in my pelvis and abdomen in order to decrease the risk of complications, especially as it relates to the adhesiona he believes to me near or on my bowel and bladder (can't live without those!). Ther all sorts of other prep too that I won't go into but that the doctor thought might require me to be in the hospital a couple days ahead of time.

And he predicts a longer healing time than most women who have this surgery. You know me, I can't do anything the easy way! None of it was good to hear at all, and considering doctors have been trying to "push" a hysterectomy onto me for years telling me it would be the easy fix, I was shocked and scared. And it also made me realize that I'm probably more sick than even I thought I was... and that hit me really hard.

The other options were equally as unappealing... long term birth control (oh the irony of that...I can't even go into it!), or an ablation and !UD at the same time. Both these options would stop my period but not my cycle and not the pain. What's the point of doing anything if the pain won't stop?

But in the end, there really aren't any decisions to be made at this point, since he wants to do a pelvic ultrasound and thanks to the long waiting lists here I can't get one til mid-SEPTEMBER. It's a five month wait for a pelvic ultrasound. It really is unbelievable... But honestly, I'm not surprised. It's sad what you'll accept as okay when you don't have a choice in the matter. Public health care will do that to you. But I was prepared for that possibility so I'm only mildly annoyed (in my best moments) at the wait.

So IF we decide to do the surgery ~ and it may be necessary, no other options will work, depending on what the doctor expects to find on the ultrasound... he thinks there is a strong possibility I have fibroids since I have chronic anemia and a enlarged uterus so he may say we have to do it based on the ultrasound regardless of the risks ~ it will be January at the earliest before it would be scheduled. That means another whole YEAR before the whole process is over and life gets back to some semblance of normal, unless I'm able to choose one of the less invasive options, which are only temporary fixes no matter how we look at them.

And I've been trying in the meantime, but with not much success so far, to get as healthy as possible. I daily think about and experiment with different ways of eating in hopes that I can not only lose a little more weight, but also decrease my pain. I would love to say I'm doing well at exercising but with increased leg pain for the whole foot deal, well, it's hard to keep up. But I'm trying to feel like I'm doing something. I wish I could say I'm dealing with it all really well. I'm working at it daily, doing the best I can and it truly is amazing how, when you've had major disappointments or struggles before, it all prepares you for the next one if you let it, you learn how to deal. You learn to let yourself feel the hard stuff but still live and thrive on the good stuff.

I truly am thanking God for my very special Hubby who loves me in spite of all this stuff and is trying to help me through. And I continue to pray to God... beg Him to heal me, to take away my pain. And grieve. I wonder if the grieving over this loss will ever end. Sometimes it feels like it won't. I wish that I could have just made the decision and be done with it. Get it over with. But I don't get to so I'm doing the best I can. Trying to rest. And enjoy each day as much as possible. And pray for healing. That's all I know to do.

That's it for now. I just had to write this down. I hope I can get back now to focusing on the positive side of everything, back to trying to live healthy without this weighing on me all the time. That is what I hope.

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