Well, I guess my Prince post on yesterday about having a voice was more cathartic than I originally thought…
I started this blog a little on the edgy, half-crazed side and then a few months into it, I changed into a kinder, gentler geek. Now, I feel the need to return to my previous level of insanity. 😉
Some background: January of 2006, after “researching” online, I picked Uterine Fibroid Embolization as my treatment option. Because of the location of a couple of my fibroids, the Interventional Radiologist didn’t want to perform the procedure until I had another procedure first. The IR talked to my Gynecologist and the Dynamic Duo came up with plan. I needed a Hysteroscopic Myomectomy before the UFE. No problem, right? Not so fast. My GYN would not do the surgery until my hemoglobin level improved. In addition to the industrial-strength iron pills, I also required… Lupron (insert echo).
Went back online, “researched” Lupron, and was flabbergasted by what I saw. Literally “cartoon-like shaking of the head” flabbergasted. The drug had been approved by the FDA and my doctor prescribed it. Yet, according to the Internet, I should run shrieking into the night to avoid it. Believe me, I am not trying to diminish anyone’s experience but I needed to use Lupron and to do so without fear. After cracking open my Pharmacology book, reading about the whole drug class (gonadotropin-releasing hormone agonists) and then trusting my GYN’s judgement, I started the Lupron injections. I completed 3 months and definitely experienced the benefits. Oh, it wasn’t perfect. I also experienced some of the side effects but (for me) the benefits outweighed the risks. It’s another informed medical decision that many people must make. You really do have to think about a bell curve when it comes to treatments. MOST who undergo a fibroid treatment will benefit. Unfortunately, most who benefit will not come online and talk about it.
Ah, the genesis and evolution of this site: That whole Internet “Lupron will kill you” experience really caused me to stop and think about this fibroid problem in general. By its nature, the Internet draws negative experiences. It’s coloring perceptions. I wanted to use my fibroid voice in a positive way and felt the need to create something geeky and more balanced to stimulate discussion. I started writing after I finished my Lupron shots and kept it up through my other treatments and (now) continue to write post-procedure. The blog is filled with my personal ramblings (over 170 separate posts so far). I soon discovered that there are lots of women with lots of questions and I had to come out of my comfort zone and broaden my scope. That’s when I posted about different topics and put together the Forum. For a little while, I became “warm and fuzzy” geek and worked on the support function of the site. The community is developing nicely but there is one problem…
Most of you only visit one or two posts. I do appreciate the visits. You are helping other women going through the same treatment tremendously but I know a lot of you have more to say. So, when you get a chance, wander around the site a bit. Visit other pages. Say what’s on your mind. Sometimes you won’t get a response but realize that you are being seen by many.
How are you using your fibroid voice?
Go to the Forum page, look over the list of posts, click on some of them and use your fibroid voice!