Monday, April 26, 2010

Reproductive EndoWhat? Continued

So I had my second laparoscopy three years after my first, and all of the endo had grown back, plus some additional adhesions. Stage 4 endo again. But here's the fun part...

My surgeon told me after the first surgery that these laps would remove the endometriosis and eventually allow for me to try to get pregnant naturally- off of all birth control or hormonal therapies. Well, I guess that made me think that I could take a break from the birth control after this surgery without any complications. I'd been on the pill for seven years with awful break-through bleeding, sometimes months of bleeding at a time. I wanted a little time off. Just a little while of natural living. So I went about 10 weeks with no pill for the first time in years. Big mistake. Big. Huge.

After about 10 weeks I started getting sharp stabbing pains up under my rib cage on the right side. The pain referred up into my right shoulder like the gas pain after the surgery. After a hospitalization and several lung function tests, it was concluded that this might be endometriosis on the lining of my lung or on my diaghram. A few weeks after this pain started, I got severe lower abdominal pain again. Then the fatigue. Weakness. Just all-over awful pain. It was pretty obvious the endo had grown back...I never thought it would come on that hard and that fast. A good lesson learned.

A little while after this, I discovered some additional health problems. The possibility of a pituitary tumor. Questions of Cushing's Disease (diagnosed then undiagnosed three times). Hashimoto's Disease. I went on Lupron to try and relieve the endometriosis (not a very nice drug for those of you who may be unfamiliar). I stayed on it for three months, couldn't make the full 6 month cycle. I gained thirty pounds. I was a crazy person...literally.

Luckily I had found an amazing man to share my drama, and my life with. He popped the question a couple months after I got off of Lupron. If he could make it through the Lupron, he was a keeper for sure! ;)

Several months later, B and I went to see a Reproductive Endocrinologist (RE) to find out about our "chances" and learn a little about what family planning would look like for us. Not the greatest news. The doctor explained that with stage 4 endo, I've got about a 1% chance of conceiving naturally in any given month. Add the Hashimoto's disease, the pit tumor scenario, and the fact that one of my tubes was not functional after the last surgery, and the doctor said 1% would be lucky. But the most important conclusion was the lesson we learned after I stopped birth control for just over a couple months. The RE felt that my endometriosis is incredibly agressive. He would be too concerned to take me off the pill for long enough to try naturally with the damage the endo could do to my reproductive organs. Each month without hormonal therapy could damage my ovaries and tubes for the long haul. Not a good risk to take. So...IVF was our only option. That's a hard pill to swallow two months before your wedding at 26 years old. Aren't you supposed to try for years before moving to something like IVF? Nope. I've learned quite a bit about this lovely little technology. And...I'm excited to even have an option! But seriously, a hard pill to swallow (literally- taking a birth control pill every morning that prevents me from getting pregnant when what we really want is to get pregnant. Quite the hard pill to swallow...)

We have an appointment this Friday for a second opinion with a doctor that helped some friends of ours bring twins into their family a couple years ago! He's supposed to be pretty good...and B didn't really like the other RE from before the wedding. We spent 6 months after our honeymoon chilling out, decorating our house, just being married for a bit. I know we'd wait longer in a perfect world. But we both really want kids, and we wouldn't be waiting too much longer anyway. So, with the chance that this could take some time...we're off to start a family!

There will be big bills, lots of needles, roller coasters of emotion, fighting, crying, and hopefully in the end...hundreds and hundreds of dirty diapers. But it's a long road. I hope you join us in our journey. Hopefully our lessons will help others out there, and maybe we'll learn some from those of you who have been there too! Wish us luck as we wish for twins! Hey, two for the price of one...right? ;)

1 comment:

  1. I've been following your blog for a while but just now wanted to start from the beginning. I appreciate your candor and openness in sharing your journey. I was just diagnosed with endo in March after 14 years of suffering. My husband and I have been married barely a year and the RE is already telling us that we can try "naturally" (with fert meds of course) for 1-2 cycles but it probably won't work and IVF is probably our best shot. We hadn't even started TTC yet prior to the surgery and now we're jumping to IVF?! It really is a LOT to take in. I had always had a gut feeling that having kids would be difficult but I didn't think it would "IVF is probably our only shot" difficult! Your story is so encouraging for people like me who are in the early stages of our journey. So glad to have found your blog! I'm also on Twitter @EndoJourney. Thanks and wishing you all the best!