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!

Good Blog Post

I found this blog post from another woman with endometriosis and while I DID NOT WRITE ANY PART OF IT, I feel it expresses some of the reasons I wanted to stop with the hormones I'm currently taking and part of the reason I want to give the Lupron a shot, such as the weight gain (and for me it is particularly my breast size, which seems to increase with every hormone shot)/fatigue/exercise stuff.  I do not have everything that is talking about in this post.  I do not have hypothyroidism, I have already maintained a healthy diet, and so far my cholesterol is just fine.  I have tried different types of exercise but that is something I enjoy so it is not the burden that it may be with people who do not feel the same way.  I recognized some of the medications she mentions in bracket 1) and the reasons for taking them.  

That said, this is not an article about me.  if you want the link to take a look at the blog, it is on the right side of my blog or you can click this link: http://youarentcrazy.blogspot.com/2014/06/nothing-changes-if-nothing-changes.htmlThis is just another woman dealing with a bad case of endometriosis and her take on it.  Again, I AM NOT THE AUTHOR, nor do I know her:

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.

Back... in Pain

Nothing really interesting today. I'm posting from my phone because my back seems to be progressively worse. Sitting up to type has become painful. I'm sure I could find some irony here but I'm mostly just annoyed. The pain is pretty bad, so that it now feels like my core is just wrapped in a blanket of pain. I am honestly surprised at how bad it has gotten and how quickly.  Still seems to be from wearing good-quality, right sized bras.  It would be one thing if this is how I was born but it's actually another crappy side-effect of the endometriosis. If I hadn't had to get triple-doses of hormones to control the endometriosis and prevent new endometrial cells from forming, my breasts would likely not have gotten any bigger.  Have I mentioned I hate endometriosis?

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.

Feeling Better, BUT...

My last post was telling you that I've made steps in a positive direction (yay!) which is HUGE over the past few months.  That post was all good news.  I don't have bad news to go with it, but I'm afraid too many people are going to read and think that everything is fine now.  In case I haven't said it already a thousand times, endometriosis is not curable.  I am going to have it.  Tomorrow, next year, at least until menopause... I'm going to have it.  With that comes decisions about hormones... which I am also going to be on until menopause to keep the endometriosis at bay.  And those hormones are not really supposed to be long term solutions.  They come with a long list of side effects!  Plus the supplements to help my body fight off the endometriosis that I guess my body wants to produce.

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.