Decisions, Decisions......

They have been made. I'm comfortable with them.

 

There will be no Lupron. I just can't do it after everything I've read on it. The point that really convinced me was reading several accounts of women's ovaries completely shutting down after six months of Lupron, thus rendering them unable to conceive ever again. Even the slightest chance that that would happen is too risky for me. It's hard enough for me to get pregnant already.

 

In the last five years of infertility treatments, the only things that ever scared me were never getting pregnant and having a miscarriage. Other than that, I was willing to do anything.

 

Fertility meds that made me crazy? Fine.

 

Giving myself four or five shots per night in the stomach, leg and ass? No problemo.

 

Egg retrieval which ended up being incredibly painful? Not scary then, would do it again in a heartbeat, even knowing the pain it would cause.

 

Giant needle full of thick progesterone that's going to hurt like hell? Bring it on.

 

But Lupron? Pseudo-menopause? Only symptom relief (despite what the doctor said, it's not a cure)? Possibility of no more babies?

SCARED. THE SHIT. OUT. OF ME.

 

So I called the doctor who delivered Ellie, the doctor who monitored my IVF, and my nurse practitioner to ask all of them about other options I had read about. Alternative treatments such as immunosupression therapy, supplements, etc. None of them knew anything about them. They couldn't give me any better options other than the Lupron and the pain pills. I asked the doctor who delivered Ellie for a referral to the pain clinic. I'm obviously not going to find a cure. There is no cure for endometriosis. All that can really be done is pain management and preservation of my quality of life. I wish someone would have sent me to a pain clinic sooner. I hadn't thought of it until I spoke to my nurse practitioner about my increasing resistance to the Vicodin, and she mentioned I may need to see a pain specialist to get off of it.

 

I have an appointment coming up on Thursday at 1:30 at the pain clinic. I only found out about it on Monday, and that's pretty short notice for work. I still don't know if I'm going to be able to get the time off. So I called my nurse practitioner to get a refill on the pain medication.

 

Now, I have been completely transparent during this entire process about my pain and how it's being managed. I don't WANT to be on narcotics. All I want is to be pain free. I'm a happy person, thrilled with my life other than these issues. I don't have an emotional need to be all "high" or anything. In fact, Vicodin no longer even makes me "high," just comfortable. The problem is I have to take 4-6 pills to get comfortable. I've been very honest with my doctors about that. It's normal to build up a tolerance to theses kinds of medications. Tolerance and addiction are two very different things.

 

But I was still treated like a fucking drug addict when I asked for a refill so I could get through until my appointment. Still treated like all I was doing was abusing the medication instead of taking it so I could live my life.

 

This shit pisses me off. But I get it. Doctors have to be careful about how much pain medication they prescribe. There are laws and regulations for this stuff. They have to make sure they're finding the happy medium between pain management and over-prescribing. But what am I supposed to do when I'm offered nothing else? Give me another option. Give me SOMETHING. And, yes, I realize the Lupron was supposed to be that something, as was taking my birth control continuously, no placebo pills, so I never get a period. And I'm doing that now, but I still got horrible cramps just like I was getting a period, and the Lupron is just not an option considering all the side effects. Just NO.

 

So here I am, researching like crazy, trying to find alternatives, asking questions, doing my best to find some way to be comfortable without pain medication. And I'm still treated like crap.

 

It's beyond frustrating. This is a chronic pain syndrome. It requires a multi-disciplinary approach. You really need a team of doctors to effectively treat endometriosis. Pain specialists, endocrinologists, gynecologists, surgeons who specialize in excision of deep endometrial lesions, oncologists...endometriosis behaves like cancer, and puts those who have it at a much higher risk for developing ovarian, breast, and uterine cancers, among other things. It's an immune system disorder as well, so you need rheumatologists involved.

 

But, when you're living in the midwest, without access to doctors who actually understand that all of those branches of the disease need to be addressed, you get one doctor at a time. When that doctor gets sick of you "whining" about your pain, they ship you off to the next doctor. Instead of compassion and understanding, you are treated like an addict.

 

You know what I want? I want a doctor to look at me and say, "Cortney, I acknowledge your pain. I recognize the fact that it has a serious and very negative impact on your life. I'm going to help you, but until we find the right combination of therapies, we're going to keep you comfortable if we can."

 

But, as it has been for hundreds of years, women are expected to "just deal with it." We're trained to think being in pain constantly is "normal." We're expected to power through, no matter how we're feeling.  I'm apparently expected to live my entire life in pain, whether it's the fibromyalgia or the endometriosis (which are completely related and linked, by the way).

 

Does any of this sound fair? Because it's not. And I've really had it.