Wow. It’s been over a year since I’ve been here. That’s awkward…
Well I’m back. What brought me back? Yup, you guessed it. Endo.
I was mostly pain free for about 1.5 years aside from the usual aches and pains that comes with having multiple chronic illnesses, until a couple months ago. Then, the endo came back with a vengeance. After a trip to my doctor, he suggested I try some medication to even out my hormones. A week of that did nothing, so I called and asked what to do next. They told me he was booked out until June (this was in February) and that my two options were Lupron or surgery. Now I have heard nightmares about Lupron and vowed never to do it and surgery didn’t sound appealing to me either for obvious reasons. So I decided to get another opinion.
I went to a new doctor that I heard of that uses natural methods to treat infertility and endometriosis. Hoping she could help, I scheduled an appointment. While her treatment ideas and advice weren’t awful, they weren’t a solution either. Maybe they would be after I had surgery and had a regular cycle, but for now it just wasn’t the right answer. However, she did recommend a surgeon that she knew did a wonderful job treating endometriosis. So I scheduled an appointment with her and traveled 2.5 hours to see her with my boyfriend (yup I got me a boyfriend in the past year 🙂 ).
Besides getting stuck in a traffic jam, which really taxed my nerves, I was eager to see if she could help. Needless to say, this is why I never get my hopes up for doctor’s appointments. Basically she wanted me off my birth control patch and my IUD, the two things keeping some of the pain at bay. She had no other solution for me and told me she wouldn’t do surgery until I was off of them for at least 6 months. Lady, if I did that, I wouldn’t be leaving my bed for 6 months. Honestly, she seemed confused as to how to properly treat endometriosis. The last straw was when she was examining me and found the strings to my IUD that previous doctors couldn’t find. She said “oh I found the strings, want me to pull it out?” Um how about no? Especially because I already said that I didn’t want it out. And even if I hadn’t said no, I think I would want some time to think about it, not just have you yank it out. She even seemed surprised that I said no.
So the whole visit was a complete waste. It had been about 1.5 years since I had a devastating doctors appointment like that and I had forgotten what it felt like. I tried to hold back my tears during the appointment with some success, although she knew I was upset and apologized she couldn’t do more. I basically ran out of there as fast as I could and got in the car and sobbed. I know this sounds dramatic, but until you’re in this situation it’s hard to understand. To have this hope dangling in front of you that a stranger will somehow be able to help you and take away all your pain. That someday you can live like a normal human being without having to take 10 pills a day and not worry about whether or not you should bring your heating pad on vacation. And then to have this hope taken away is devastating. So why even hope at all? Well, some days, hope is all you got.
The boyfriend and I just sat in the car for about 20 minutes, processing what just happened. Wondering what to do next. Questioning if there really was another answer other than lupron or surgery. Since this was his first doctor’s visit with me, he was even more hopeful than I was. And his hopes dashed even more. Hopeful that he’d be able to see me without pain, with more energy, and needing to take less medications, I can imagine it was just as hard for him as for me. The casual, joyful conversation that we had on the way there was quiet on the way back. The visit to Bass Pro Shops (my incentive to get him to come with me 🙂 ) was put aside.
However, we’re both pretty resilient and about 2 hours later we were laughing and joking again with our puffy eyes.
I then decided I was going to try to see an excision specialist, since it seemed surgery was my only option. I scheduled an appointment with a doctor near Chicago, about 3 hours away from me. This time my boyfriend and I headed into it much more wary. Again it was disappointing, but for different reasons. The doctor was kind, knowledgeable, and acknowledged my pain which is huge for endo patients. However, he wanted me to try 3 new meds for 3 weeks to make sure my IC wasn’t causing me pain. I knew in my heart that it wasn’t IC pain, but he wanted to make sure. At that point, I was so sick of the endless, everyday pain, of the extreme exhaustion that made the littlest tasks difficult, the constant struggle to maintain a happy, cheerful demeanor, etc., that I was disappointed there wasn’t a quick, easy solution. That I would have to wait 3 more weeks and then come back.
But again, I’m resilient. After the first couple hours of disappointment, I realized that I would survive and that it was probably wise to double check things. Three weeks later, I was headed back to the doctor. The new meds hadn’t helped anything and my pain had increased. The doctor agreed that surgery was probably the best and only option right now. He discussed what he’d do during surgery, checking other organs to make sure everything was okay. Checking to see how my IC is, see if I have PCOS among other things. I left really encouraged that something was finally going to be solved. I scheduled my surgery for June 8. I was feeling hopeful. Finally, a solution, an end to the pain, the fatigue, the aches, and hopefully some answers about what is happening in my body.
Well, life isn’t perfect and it seems that this disease is riddled with more ups and downs than a roller coaster. The Monday before my surgery, my insurance company emailed me saying that my surgery is not covered by them. So I had to cancel it and I’m working now to see what I can do to get it approved. More on that later.
This past year has been filled with so many good things that I would repeat it again, despite the pain. This disease has taught me one thing: to appreciate the good days even more than ever before.