February 17... It Begins!

Today was my doctor's appointment, after which I said I would update people on my status... so here we go.  I start my Lupron injections on February 17!  I don't know a whole lot after that, but after the past year, the side effects don't seem very bad to me and for what would help my body, the effects may actually end up being positive.  

(no idea if that is what my actual label will look like)

For 2-3 weeks after the initial shot there may be a flare-up of pain.  My doctor explained exactly why to me in scientific terms and it made total sense, but I can't remember exactly what she said.  It had something to do with stimulating a certain hormone when it starts and then eventually it actually prevents that hormone from firing (?).  I always like when she explains things and yet for some of the more advanced biology answers I do not always remember everything.  For what concerns me, there could be an initial flare-up in pain.

Also, Lupron is not a quick fix, although we both are hopeful that it will be a fix.  For one, I learned that the hormones in my system from the Depo shots that I have been getting can last up to a year in the body, especially since I have been getting the shots more often than the "standard" dosage.  The good news is that since I have been getting them regularly, my estrogen levels are lower than a normal person so the shift to even lower levels will not be as drastic.  (I believe she said also that right now I have high progesterone levels, but those will decrease with the Lupron).  

(Estrogen and Progesterone levels in a normal, ovulating female - Not me, but just for reference)

Three weeks after I get my first injection, I see the doctor again and she will decide if I need any hormone replacement therapy to supplement the Lupron and get a grasp of my symptoms/side effects, etc.  The actual Lupron injections are every three (3) months.  The side-effects are most closely related to Menopause, but some people have a problem sleeping at all, which I had not known.  Hot flashes are common, and other than that, we will just see what happens.  I will not be adjusting other medications for a while after the Lupron starts and while the initial flare-up pain won't last, overall pain may not decrease for three months.  Even at that time, if I'm feeling better, I will likely still continue to feel better for while and then eventually things will even out and we can assess how I am.  

(Basically, this could be me... without the pained expression... There are totally worse things!)

I still feel really good about doing this.  It's a little frustrating that because my body is being flooded with hormones and they don't just change overnight (think of pregnancy hormones and how they decrease gradually after giving birth), it will take some time to see how I will finally feel.  Now that I've said that though, I'm not going to worry or think about it because that's the thing I cannot change.  I'm making a big change and I feel calm and even a little excited to try this and hopeful that it will work.  And while it won't be overnight, I'll still feel better slowly, which sounds great AND I will not be dealing with all the side effects of the Depo shot anymore! (Hallelujah!!)  That part I am super excited about!  Also, I should be able to exercise more regularly and be able to do more and more activities as the time passes... which is my ultimate goal: to be able to do everything I used to be able to do.  I don't know if that's going to be the final outcome, but until proven otherwise, it continues to be my goal.

And that, Ladies and Gentlemen, is all I know right now!  I look ahead at 2015 with much more excitement than past years and I'm still hopeful that this will be a really good thing for me!

Doctor's Visit - December 2014 (or Endometriosis: Episode 4, A New Hope)

(Love this sentiment, but have been wondering if this is true lately)

I will end up talking about this with many people in my life, but this also feels totally appropriate for my blog.  I had a visit with my Ob/Gyn doctor (Dr. K) yesterday and made a decision that could lead to some difficult but ultimately positive changes.  Most importantly, I decided I'm ready to try Lupron, the drug that I had resisted trying for so long because of the side effects.  I've written about it before on this blog (so you could search for those posts) but in simple terms: it causes your body to go into menopause.

5/29/14

Not having a great day, so I'm disinclined to write anything, but I realize the bad days are important to document.  I am having worse pelvic pain today but again, I didn't use a valium suppository last night.  I see the correlation, it happened last time I tried to go without for a night during a stressful period.  This time it was not by choice though.  I ordered my prescription but didn't even think for a second about Memorial Day weekend, so that was two days that mail wasn't moving.  So I don't have the valium suppositories but they should arrive any day now.  It takes about a week and I ordered them last week so hopefully they will be here in the next day or so.  It's a bit disheartening, which I think I said last time, that I feel so much worse by not taking one medication.  The pain is so drastically different when I don't use the valium.  And I don't mind that at all, but I would be more comfortable if it took more than just one night to feel so different.  I woke up ready to jump in the shower and then the pain hit and I took my regular pain meds but an hour later I'm not feeling much of a difference so I may need to take more and hope I don't get overly drowsy.  Then maybe I can at least shower.  For right now, I'm just watching tv I don't care about and looking at a bunch of different things online to distract myself.  I don't like bad days but they do remind me of how far I have come that now they are pretty infrequent.  I have discomfort still usually but not like this so I'm trying to just not think about it too much; just do what I have to do to make it through to when the valium is delivered and I'm back on schedule.

5/18/14

Today was alright, I guess.  A couple relatives came to visit with my Mom and helped, brought food, etc.  That is always appreciated.  So emotionally, it was good to see family and get hugs (and a pillowcase!) and chat and thank them for helping out.  Other than that though, I have not been feeling great today.  Of course, my analytical brain always wants a reason for when I feel different so I search for something that may have triggered me feeling a little worse, like overdoing something, pushing myself too far, stuff like that.  I have begun to wonder if analyzing and looking for a reason is healthy, or if, like the nature of endometriosis, I am looking for causes where the causes are all unknown.  

A Night In the Life of Pain

Ahh... bedtime.  It seems to come around oh so often.  I think I would enjoy longer days and less sleeping...  But we all know that we have to sleep.  Well sleep is something that has been consistently hard since I began having endometriosis symptoms.  

At the beginning, I don't know if I would have been sleeping or not, but the pain was so bad, I basically didn't sleep normally for months.  The thing with sleep is that we try to relax and turn off our brains and let the sheep counting take us away...  Well when you have acute pain, chronic pain, post surgery pain... it is not easy to relax.  I could make it throughout the day simply by keeping myself distracted by doing about 3 mindless things at once.  But if I stopped doing those things, it didn't matter how tired I was, all I could think about was the pain.  I was uncomfortable every second before I found a doctor who could manage pain while also dealing with the endometriosis.  I have never slept with the tv on, radio on, or even been able to fall asleep to music, but I started leaving Netflix playing on my computer while I was in bed trying to sleep and I am only now getting myself able to sleep without the computer playing some television show.

TV

I mentioned in my previous post that I use tv to get me through the day...  Specifically I find that a smart fantasy show is the best thing (although I've pretty much run through most of my first choice television shows).  Something that takes my focus off of myself, and often, something that doesn't lead to me thinking all about the real world I'm missing.  Reality tv seems to be the worst...  It always seems to be privileged or idiotic people on television which just pisses me off that they don't even know how good they have it, so I skip any and all reality television.  But with my computer, I have everything I need... HD, I can find pretty much anything I want to watch whenever I want to watch it, and it's portable for however I am comfortable.
*Disclaimer: I am positive I will forget some important shows when I list some examples.  Just assume I've seen them all but also feel free to suggest, just in case.

Perspective

In the course of writing my post yesterday, I decided to google "endometriosis blogs" and see what was out there.  Maybe not the best idea.  There were a bunch of blogs, but they were, for the most part, seriously depressing.  One that stood out to me was actually titled "Endometriosis and Suicidal Thoughts."  I didn't read further.  I can state with certainty that even if I have to deal with chronic pain for the rest of my life, I have no desire to end my life.  

Anyway, these blogs and their titles made me think about my perspective.  I try not to dwell on setbacks or pain because it can become frustrating and overwhelming.  I wonder though if by not sharing the really bad times if I make it harder to understand what I am going through.  I wake up everyday and the first thing I think of is "check your pain level."  I'm probably not going to write like the world is ending or that I have it SOO bad because in my opinion, there is always someone who has it worse than I do. I now refuse to answer the question "rate your pain on a scale of 1-10" because I am terrible at it.  I was in very bad pain, but kept thinking there must be someone out there in worse pain than me, so that precluded me from answering 10 and probably downplayed what I was going through at the very beginning. I've learned how I need to answer that question if I'm in an ER but to me it is way too subjective to be effective.  That doesn't mean my life is easy.  I mean, 3 years ago, my life was pretty awful.  I was so medicated and the pain was so bad that today, I feel almost glad that I'm doing better than that.  But I'm not healed.  There is no cure for endometriosis.