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!

9/6/2014

* I was reluctant to write a new post until I got FIVE good comments on my previous post HERE... but I had a thought as I was up all night and felt like sharing because I don't know if I cover my everyday life very well.  So while I would still very much like to get some comments (random, creative, far-fetched, whatever!) on my previous post (PLEEAASSSE) here's an expanded post of what I jotted in my pain/endometriosis journal last night:

Sometimes I feel like I spend all day just trying to minimize the pain that may surface at night.  That's an annoying way to spend the day!  I talked with my doctor about it and she confirmed that most people who suffer pain do feel worse at night.  She also talked some about normal cortisol levels and how they are different for pain patients, which made total sense while I was there talking to her, but now I can't remember exactly what the difference is.  (I'll have to Google to refresh myself).  At least I learned that there is a physiological reason for pain being worse at night and the irritating part is that pain at night throws off an entire day, if not more.  I either sleep in too late and then I'm not tired the next night, or I try to wake myself up at a regular time and then I'm just the Walking Tired for the rest of the day.  Also, for me at least, the less sleep I have, the more pain I feel.  It's almost always that inverse relationship.  So it's likely that while I'm up and unable to sleep, because pain that I can deal with during the day can definitely stop me from getting comfortable enough to fall asleep, I also have these thoughts and knowledge in the back of my head and that can't help my subconscious with the sleeping part either.  I do experience nighttime flare-ups of pain.  I can deal if it's a night when I went to the gym and expect it but on random days when I have done nothing of consequence I do get an occasional bout of extreme pain and that is extremely frustrating.  That happened to me this past week and it sucked but I felt improvement the next day and better the day after that, so that's a pretty quick turnaround.  It used to be a flare in my pain level would last a week, so if we are grading on a curve, my grade is improving.

Pain Care Bill of Rights

 The Pain Care Bill of Rights

I found this while I was wandering the hospital on Tuesday, and I thought it reinforced some really great information and it comes from a major hospital, so it made me hopeful that people with chronic pain are getting the care they deserve.  Since pain is one of the biggest symptoms of endometriosis, I found this particularly important to share in this forum.  I did not write it, but it is distributed publicly and I found it supportive...  So click "read more" to see it :)  (Or, if this is emailed to you, just keep reading!)

More Terms and More Understanding Pain Management

This post is a bit of a continuation of yesterday's post, in case you haven't read that yet.  I know before that I mentioned a whether or not a medication is "holding" for me.  I don't know if I've ever explained that...

When I say a medication is "holding," that means that it lasts as long as it is supposed to and is doing what it should do at its peak level.  So for instance, when I use a valium suppository at night, if it "holds," that means I wake up with little-to-no pain in the morning.  That makes it much easier for me to get "ahead" of the pain, keep it under control, and need fewer pain medications throughout the day.  This past week, I felt like the valium was no longer holding because when I woke up, I felt pain immediately.  That means I need to take my pain meds in bed and stay lying down until the pain goes away or I'm going to be dealing with pain all day. 

Fear

ALGOPHOBIA: Fear Of Pain.  Fear is something that I've touched on in other blog entries but have never fully-fleshed out in terms of my meaning.  With endometriosis (or, I would assume, with most chronic illnesses), fear is a very real thing.  

I have dealt with a lot of different fears since even before learning I had endometriosis.  I had the fear of pain from the beginning.  Not paper cut pain but pain that was so pervasive, it makes it so you can't even think right.  Pain that consumes and haunts your entire life.  I had PAIN at the very beginning, before getting proper medications and before having surgery.  The memory of that type of pain is scary.  I do not want to go back there.  I know I have had very few days of pain like that since I have had proper medications, a knowledgeable doctor, and surgery, but I now notice every twinge and in the back of my mind I am hoping that twinge is not signaling the start of pain.

Doctor's Visit (Feb 2014)

Ok, so I went to see my doctor, Dr. K, on Tuesday.  I know I said I was going so I should post a summary.  Basically, it went exactly how I thought it would go.  I am going back for my follow-up appointment in 4 weeks, rather than my regular 3 months, due to the stressors that have loomed large over the past month or so.  At that point, I will hopefully be feeling better, but if not, she said she would likely recommend trying Lupron.  Lupron is a drug that essentially fools your body into thinking it has hit menopause.  I've avoided it and not wanted to take it due to the many horrible side effects (hot flashes, irritability, mood swings, mental breakdowns, any and all menopausal related side effects) I've read about, but Dr. K said she would feel pretty good about it now because it is always accompanied by hormone replacement therapies.  Also, since I have been getting a hormone injection already which lowers my estrogen levels, the change would not be as drastic as it would be normally.  Honestly, I still am not all that excited about the prospect and I would prefer feeling better in a month, but if she recommends it, I will probably do it.  I haven't regretted any course of treatment she has suggested/implemented so far so she's earned my trust.  Plus, pain sucks, so if I feel bad in another 4 weeks, I will probably be interested in anything.  Lupron is a federally regulated drug that I have to apply for through my doctor's office (or they apply for me) and I would need approval to start it.  I did not know that part until yesterday.  For now I just got my regular hormone/birth control injection.  That does sometimes help with pain management when it kicks in, probably at the end of the week.

Some Random Stuff

Tomorrow I go back to the doctor (who I call Dr. K, since I have no idea if she wants her real name used in a blog, but I like her a lot).  When I first started seeing her, I would go every two weeks.  The staff and I know each other on a first-name basis.  Now I am going every three months.  Definite progress there.  I was hoping my mom would have surgery this week so I would have something definitive to say about how I've been feeling pain-wise and whether it's stress related, but since that's not happening, I may just schedule an appointment in one month to reassess. 

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.