In Which the Dam Breaks

Friday, March 29, 2013

NB: This entry contains medical information that may be considered TMI for some. There are no pictures, I promise. Proceed with this knowledge in mind.

I have no delusions that I am what one would call... a tolerant, or patient person. At least, not with regards to my own life. And honestly, I'm not tolerant of a lot of things. I do not suffer fools gladly. At all. In fact, I spend a lot of time ranting and raving about the wanton stupidity that I encounter on a daily basis. What I can say is that given all of my health issues, I feel as though I have been remarkably patient in waiting for appointments, diagnoses, treatments, and results. I have not been completely content through the whole process, but most of the time, I've been able to take it in stride. I've been frustrated and sad and angry, but I've never completely melted down and felt like I simply could not exist in this world. I've always prided myself on trying to have a normal life and continually remind myself that "it could be worse". For the most part, this has worked.

It's been 8 years since the health issues started. In 2005, I was diagnosed with endometriosis and subsequently had a laparoscopy and went on a course of Lupron the summer after my freshman year. For those of you who don't know, endometriosis is a condition where the lining of the uterus goes rogue and decides to grow outside the uterus on the surrounding organs. It's super painful and for many women, debilitating. Fortunately for me, while it was painful, I could still go to class and have a relatively normal life. After the surgery, which revealed "extensive pelvic endometriosis" (which was ablated/removed/etc to the best of the surgeon's ability), my doctor recommended that I go on Lupron, which is a drug that is used to suppress ovulation and essentially put the patient into temporary menopause (it is also used to treat estrogen-receptive cancers, such as prostate cancer, uterine fibroids, and in some IVF patients). It's a pretty serious drug. It's done in either a series of 6 injections, or two, 3-month injections. The injections HURT. (I had a lump on my butt for weeks after each, haha.) The side effects of Lupron are lovely, and include (but are not limited to), headaches, lack of sex drive, depression, hot flashes, weight gain, loss of bone density, mood swings, acne, excess hair growth, and joint pain. I experienced almost all of these the last time I was on this drug. SUPER fun! At this time, I was also prescribed Seasonique, which is an extended oral contraceptive pill (so I only get my period 4 times a year), which helps because fewer hormone fluctuations and periods theoretically means less endometriosis growth.

I was rather fortunate in that I had almost 8 years of symptom relief from my surgery, with my symptoms returning gradually over the last year. The pain was nowhere near as bad as it had been in 2004-2005, and I really only had the second laparoscopy to determine if the endometriosis was back and to remove it if it was. Four weeks ago today, I had my second surgery and to no one's surprise, my endometriosis was back. The good (?) news was that there wasn't nearly as much of it as there was in 2005, and the surgeon (my gyno) said that everything else looked good. They also biopsied my uterine lining (why, I am not sure) but that apparently was normal. After a weird recovery that included band kerotopathy in my eye from the cornea drying out during surgery (OW!) that thankfully resolved itself in 24 hours, wound dehiscence (Dermabond sucks, please suture me next time), and allergies to the bandages (hey there, new-found allergy to Latex...) things seemed to be okay. Then I got my period and it was the worst period I had ever had in my life, but this was apparently normal after one has pelvic surgery. Thanks to Percocet, I got through the week and now things are normal... ish. Minus the parting gift of a yeast infection that my period left me. But that's being taken care of too, so we're on our way to normality for REAL.

Anyway, I saw my doctor last night for my post-operative appointment (and to get this yeast infection cleared up... yay Diflucan) and he brought up that he wants to put me back on the Lupron. Before the surgery, right after the surgery, and even last night, I had told him how much I did not want to be on Lupron ever again. He had given me the impression that it was a choice to be made. Apparently, that is not so, in his eyes. He said that "after everything I've been through, wouldn't I want full relief" and "the reason it was so bad last time was because the last doctor hadn't given me add-back therapy". I'm all for not having endometriosis and taking care of my body, and I'm clearly not averse to medical intervention (Hello, I'm Alison, and I take 14 pills a day, test my blood sugar, and take an injectable medication) but something in my gut was telling me that Lupron was not the best idea. Besides all of the fun side effects I listed above, you also can't take any oral contraceptives (as that ruins the whole "no estrogen, no progesterone" point of the drug). This means you have to use a non-hormonal birth control method (condoms, essentially) which is totally okay... except that I am allergic/sensitive/unable to tolerate any brand, style, material, etc without getting crazy reactions and urinary tract infections. (Hives and pain makes sex WAY less fun. Trust me.) I brought up all of these concerns to my doctor, who brushed them off and said that the add-back therapy would alleviate the side effects and that I "probably wouldn't get pregnant on Lupron anyway" but didn't offer me any kind of solution to my condom conundrum. Sidenote: If you HAPPEN to get pregnant on Lupron, which people have done, apparently, Lupron is a Category X drug for pregnancy, which means SERIOUS BAD NEWS for your impending baby. AND, the Lupron stays in your system for 2-3 months after your last injection, so it can mess with future fertility plans, which is something I just do not need in my life. Great.

I walked out of the office with a prescription for the Diflucan (amen), Lupron, and the add-back therapy, Prempro, and I felt like I wanted to cry. I got to the pharmacy, waited for half of my natural life (as per usual), dropped of my script, went home, and burst into tears. 8 years of dealing with not only endometriosis pain and treatment, but the rheumatological/immunological problems finally came to a head. For whatever reason, I could no longer handle the fact that at 27, I am on 15 different medications. My endocrine system has basically failed me, from the PCOS/insulin resistance, to the endometriosis, and my immune system cannot get a hold of itself. It has been almost 2 years since I've had a month without seeing a doctor, and there isn't a day that goes by that doesn't involve pain or discomfort of some kind. It is getting... no, has been getting OLD for a long time. Last night, upon hearing that I would have to put my body through even more crap, the dam broke. I had had enough.

It seems odd to me to draw the line at what I'll put into my body at this particular drug, given that I'm playing with my insulin system, changing how my body metabolizes cholesterol, suppressing my immune system, and messing with my brain chemistry. Every drug and treatment has a risk/benefit profile, and I've always carefully thought about whether the risk of taking the drug outweighed the risk of not taking the drug (or similarly, if the benefits of taking the drug outweighed the risk of taking the drug). I don't take any of this lightly, and the thought of "What am I doing to my body?" crosses my mind every day. Last night, the stress, the frustration, the anger, and the sadness of this entire situation just got to me. I came home from the pharmacy (where I feel like I spend way too much time), hugged Ken, and burst into tears. Not the cute, girly, tears, either. This was ugly crying. Serious ugly crying. Fortunately, Ken is awesome and just held me. I felt bad because yesterday was our 4 year anniversary (of dating) and we had planned to go out to get cheesesteaks (our first date ever) and by the time I got home and was done having a meltdown (which never truly ended and is still kind of ongoing), I wasn't hungry and it was almost 8:30, so he got some pizza and I ate cereal. Fancy.

But yes. I had basically decided that I would do research today, but that I was leaning towards refusing the Lupron. Of course, I've never really said "no" to a doctor before. In fact, most of the time, I've had to fight with doctors to get them to treat my symptoms. I felt a lot of pressure from my doctor to just do this treatment because it's the "standard of care" and "it's what you do". I definitely want to talk to some of my friends who are OB/GYN's, and I talked to Constance this morning, who is a neurologist, but she made me feel a lot better:

"Stand up for yourself. If you don't want what is honestly an "elective" medication (if for pain control, and it is not worth the side effect profile to you, just say that. . . I love you, don't do anything just because a doctor says to. We're jerks. <3"
I also read a few articles from various journals at GnRH agonists and their usage in endometriosis treatment, and it seems that the only real benefit to using the GnRH is that there is longer between recurrences of symptoms. I don't know how long they followed people for, though, and I've only be able to find studies that went out to 24 months. Last time, I was almost symptom free for 8 years, which is clearly more than 24 months. Whether that was the surgery, the Lupron, the Seasonique (a Combined Oral Contraceptive Pill, or COCP), or some combo though, I am not sure. I did find:

"Other treatments including androgenic agents such as danazol, and centrally acting drugs like GnRH analogs are limited by cost, duration of activity, and more significant side effect profiles, without offering significantly great benefits than the COCP."
That was published as part of a paper in the New England Journal of Medicine, so at least it's probably legit research, haha. Obviously, it's only one paper, but the overwhelming feeling that I get from all of my research is that GnRH agonists are useful, but they do have significant side effect profiles (which I feel as though my doctor downplayed significantly), and COCP's are just as good at relieving pain. The pain, prior to my first surgery, was HORRID. The pain prior to my second surgery was tolerable but annoying, and only during the time that I had my period, which is only 4 times a year. That is something I can live with, I think. At least, I can live with it far more readily than living with 6 months of Lupron insanity. Additionally, since Lupron tanks your estrogen and progesterone, I am unsure what that would do to my PCOS. Argh.

Anyway... it was a hard night last night, and all of this continues to be difficult. I made a therapy appointment for next Wednesday, even though I'm not supposed to see Danna until the following week usually... but this feels urgent. Considering I can't even really think about it without feeling like I'm going to throw something or cry, I need to be able to process this with someone besides my (amazing) friends and in my own (crazy) brain. I am just so angry and frustrated with my body and my life right now that nothing feels right or sane. My health (and lack of it) makes me question so many things, from every day stuff like making plans and whether I'll have enough energy to go out with friends, to long-term concerns, like whether I can go to med school, be a doctor, or have kids and not completely implode. I dream of what it would be like to not be on medications every day, or at the very least, to be voluntarily on them (for birth control purposes, for example). I wonder what it would be like to not have joint pain, or to feel nauseated, or to have my blood sugar freak out randomly. I know there is no "normal" really, but what would it feel like to be "normal"?

I'm very lucky that I have amazing friends (some of whom are great physicians, too) who are there for me when I have these meltdowns. Also, Ken is pretty much the best husband ever and I don't know what I would do without him. I often feel like an alien in this world of chronic disease, because until very recently, I didn't/couldn't/wouldn't admit that I even had a chronic disease. There's so much information (and misinformation) out there, and it is hard to sort through it all. As per usual, I want all of the answers RIGHT NOW (ANSWER ALL THE QUESTIONS!) and all of the solutions (FIX ALL THE THINGS!) and unfortunately, that is just not going to happen. Sigh.

At least it's Friday and the weekend ahead looks lovely. Tonight, no real plans (yay!), tomorrow I will be studying for the GRE (lame), and then Ken and I are going to dinner with Victoria and her husband Vinny, and Alicia and her (new) fiance, John. Sunday... not much going on except that we're going to dinner at my mom's with Levi. Looking forward to sleeping in, baking, relaxing, not doing laundry (because I did SO much laundry this week that there is almost none left to do), and basically trying to put my brain on vacation. 

OH. Before I go! I got an invitation to interview for the post-bac program at Johns Hopkins! I got the email today and I have to email the director of the program back and let her know when I'm available. Holy crap.

I think that's all of my news for now. That is certainly more than enough.

- A

1 comment:

  1. I am obviously not a doctor, but it seems to me that if you can get essentially the same relief from the birth control without all the crazy side effects, then maybe you are totally sane to refuse the lupron and not take something that you know is going to fuck up your body. I mean, we have gut feelings for a reason, right? If your gut is telling you that drug is not right for you, then don't take it. That would be my feeling, anyway.

    Good luck with your Hopkins interview! Once upon a time, I thought I wanted to go there. That was before I realized that my life path was totally different, lol.

    And finally, hugs.


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