To Lupron or not to Lupron

Dr Drawing of twisted falopian tube & endo

“I’ve never seen anything like it” is NOT what you want to have your Dr say to you regarding what they saw inside of you. Today I finally got to see my Gyno for the first time since my surgery. Ok, I saw her after my surgery, but I don’t remember it. I’d gotten the basics about what she found from Paul after I woke up, but it’s a little different when you hear it for yourself… even more so when she puts it that way. We went into this laproscopy back on Dec. 20 with the thought that we’d take a look around and I really don’t think either of us thought she’d actually find much, if anything. She even said (during pre-op) “I hope we find something”. I was also hoping, but very doubtful after months of tests that showed nothing (and well, you know what it’s like with Fibro). I really thought she’d find nothing and it would be yet another random pain blamed on Fibro. That wasn’t the case. Instead, what she found was my right falopian tube all kinds of twisted up in Endometriosis. She said it was twisted at least a half a dozen times (take a look at that picture to the right). Then at the end of that was an endometrioma and more tissue going from that connecting to my large intestine. All this RIGHT where the pain was that I’d been complaining about.

twisted tube

It’s been 3 weeks since the surgery and today was the first time I got out and drove myself. I really haven’t even gotten out, other than for Drs appointments. Last week I saw my Rheumy nurse and he gave me some really awesome new nsaids to try. I’ve had issues with nsaids causing problems with stomach (aka ulcers) and have avoided them. But, the narcotics weren’t helping and the Ibuprofen was (but with stomach affects). Me and Tums were already becoming too good of friends. Nurse Tim gave me samples of a drug called Deuxis, which is an nsaid with the stomach medication built in. It worked wonderfully and had me feeling a lot better at the end of last week. Sadly, I ran out on Saturday. Sunday I agreed to let Paul take me out for lunch. I should have had him take me home right after, but we went on and found me a new phone and by the time I got home I was badly in pain and out of commission through Monday. Luckily, I called Nurse Tim on Monday and he called me in the Deuxis, so I’m feeling a bit better again.

endometrioma

So, back to today. After surgery Dr. C had told Paul that she wanted to put me on this drug called Lupron. I hadn’t really felt up to looking into much until yesterday, which was good since my appointment was today. As it turned out, they hadn’t gotten the shot in yet so I couldn’t get it anyway. That said, I did a lot of reading yesterday (as did my mom and some of my friends) and talked to a few people who had either taken or at least been recommended the drug. Overall, the reviews are not great. The gist is that it turns off your Estrogen in order to kill the endo. They say that the first couple of weeks your symptoms are worse… then after that the Stage 2 kicks in and turns off your estrogen mimicking menopause. Honestly, I don’t mind that part, and it sounds like it could be as simple as what it feels like when you have a bad flare (something I haven’t had in almost a year – fingers crossed). My major worries with it are that headaches are one of the most common side effects (I already have migraine issues) and mostly that if the side effects are bad (or I just have a bad reaction to it – since we know I tend not do well with a lot of meds), it’s a shot so there’s no going back. I tried to talk to my doc about this today but she was having none of it.

scar tissue

Her thoughts are that this is the way to go. It is a 6 months course of treatment and then we would follow that with (basically) a lifetime of hrt or some sort of birth control. Everything I asked her about as an alternative she said was something we could do after the Lupron but that she felt this was the best route to take. She feels I’m way too young to have a hysterectomy (37) and that given my (as she put it) light skin, red hair and blue eyes, it would be a fast track to Osteoporosis and I’d end up with a broken him before I’m 50. She feels that with my diet and overall health level (at this point) that I’d do fine on the Lupron and there would be nothing to worry about. There would be side effects but in exchange for the pain relief I’d get, they would be minimal. So, I still don’t really know what to do.

Big ole blob of endo

Another thing I’ve found a lot in my reading is that there is a pretty high chance of having endometriosis if you have Fibro (and vice versa). Considering how so many women go through there lives never being diagnosed with endo (it seems like Drs do everything to try to treat the symptoms – birth control, etc) rather than treating the problem. I can’t help but wonder how many women dealing with Fibro symptoms have endo and don’t know it.

Have you been diagnosed with endometriosis? Do you have symptoms that  match up with endo? I’d especially love to hear from anyone who has any experience with Lupron (especially good experiences). Please comment or you are welcome to email me (check my profile for email link).