The year started with me having a laparoscopy to excise the endometriosis. I had undergone a 6 month course of Lupron previously, and the plan was that this surgery would clear everything out so we could start trying for a baby. A week later I found myself in the ER, ending up with having a stent put in my right kidney due to a blockage caused by scar tissue. Fast forward to June and I had another minor surgery to do a balloon dilation on the ureter in the hope this would fix the blockage. Unfortunately this wasn't the case. On August 18th I was back on the operating table, this time with a team of specialists, undergoing my next surgery. Two gynecologists preparing to do battle with the remaining large mass of endo, and a urologist all ready to cut away the offending blockage in my ureter and then sew it all back together again! Next thing I knew I was in recovery, wondering to myself 'did this one work?', still holding out hope for our tiger year!
The news? Good and bad. Six weeks later I can happily report that the ureter seems to be fixed. On ultrasound this week it was found to be completely clear and functioning correctly, yey! The endo however, true to form, is still stubbornly resisting defeat. During the surgery the doctors found the mass to be a lot bigger than they could see on ultrasound, and infiltrating a number of organs. They couldn't have removed it without removing my uterus, and part of my bowel. This would obviously permanently cease any chance of us getting pregnant, and could have resulted in such horrific things are colostomy bags....... now I have done catheters a couple of times this year and come out the other side of the experience unscathed, but I am still not ready to entertain the idea of a colostomy, ewww!
So, what now? With the advice of my doctors, I am back on the Lupron for 6 months hoping to shrink the endo mass and prevent any more from growing. I have also been taking Femara for about a year now which also helps with keeping the endo under control.The fact that both drugs put me into a state of chemical menopause is a minor inconvenience, considering the horrific pain they are keeping at bay! After that six months, in March 2011 we start back on the adventure of baby making. Whether this will be naturally or with medical intervention will be decided then. Right now the official plan is to go right into IVF, but we are still holding out for our miracle!! I'm looking into alternative therapies to help our chances, so we'll see.
2010 not looking so good so far in delivering on our demands for it, huh! Endo still running rampant, no screaming babies keeping us up at night...... what about the other hopes?
Well here we're doing a little better though not quite there! No mortgage under our belts yet but there has been career change for both of us, the fact that it has been pushed onto both of us, and not really in the direction we had planned, I think has really been a blessing in disguise. In June, Jase separated from the Air Force after serving 11 years in the US Military. We had been thinking about him getting out for a while, but after issues with his back, and not passing his required training he was forced to separate. He got an honorable discharge and extended benefits and has just started working doing the exact same job as a civilian so that has definitely worked out for the best! As for me, we have decided it's time for me to leave my job as a manager at Target and take some time to focus on me, and fight the endo head on. I am a bit of a perfectionist (I'm a Virgo after all!) and with the demanding nature of my job, it was becoming impossible for me to give 100% at my job without letting my health deteriorate, and vice-versa. So, when my medical leave ends in October, I will not be returning to work, eek! I'm excited and scared by this at the same time, but mostly feel lucky for us to be in a position financially for me to do this.
So where does all this leave me? Huddled in a corner, snivelling and feeling sorry for myself? Well, honestly, on a bad day, quite possibly! On most days however, I surprise my friends and family by how positive I am in spite of everything. Sometimes I worry that maybe I'm abnormal for not being more miserable about it all, I mean shouldn't I be depressed or something?! Quite honestly though, I am happy. Very happy most days. I have an amazing husband, loving family, and lots of friends rooting for me. I have 3 adorable kitties who keep me laughing and snuggle with me when I'm feeling down. I hate feeling miserable, and feeling sorry for myself won't fix anything. Instead I am hell bent on enjoying each day and making the most of life as it is now. I research as much as I can about my condition and use that knowledge to put myself in control (or at least feel in control).
A few years ago, I came across a picture at Kirklands when we were visiting family in Texas. The quote on it jumped out at me, and I grabbed that frame and ran to the checkout. When we got home it was put up right away, pride of place in the kitchen. I see it every day, and it's now my personal mantra.
What was it?
"Life isn't about waiting for the storm to pass,
it's about learning to dance in the rain."
Exactly.
What a heartfelt first post! I applaude you for taking the first step to really take care of yourself-physically and mentally. I love the quote and how fabulously you used it in you blog and your life. Best wishes!
ReplyDeleteHi, Lynsey! I just ended a long battle with adenomyosis by having a laparascopically assisted vaginal hysterectomy this past June. But it was quite a battle up to this point. I spent a lot of time with the doctors not even being able to tell me what was wrong. We fought for years to get the right diagnoses and treatments and I am pleased to finally have energy and not be anemic all the time. Prior to this, I did not realize how many women suffer in silence. That 1 in 4 women has a lot of trouble in this area and many don't get the care they deserve. Take good care of yourself and fight for what is right for you. Be gentle to yourself and your hubby. You will get through it! I applaud you for being open about it and willing to discuss it!
ReplyDeleteHi Anne, you're right- it is crazy how many women suffer from these conditions yet it's really not known about, or talked about at all. I was lucky that I only suffered really severely with pain for a couple of years before being diagnosed and starting treatment, though those two years were horrendous and I ended up pretty much diagnosing myself and suggesting it to the doctor!!
ReplyDeleteI really think education about endo/adenomyosis and PCOS should be integrated into health education classes at high schools. That's something I plan to look into, how to propose that and push for it to happen. My feeling is that if girls were knowledgeable about the diseases and their symptoms earlier on then those 1 in 4 that suffer would not have to do so fro so long before being diagnosed and getting help. Not only could this improve quality of life for these girls, but also possibly preserve fertility by catching and managing the conditions sooner.
I am so happy I made this decision to take time out and look after me. I know we will overcome it and we are so much stronger as a couple by going through this together, always a silver lining right, no matter how small!