Pain and Life

Let me start off by saying something: I am not an expert on this. There is so much I don't know and don't understand about diseases (especially endometriosis), even the ones I've researched over time and the ones I've been talked about to by countless health care professionals. Diseases and diagnoses change every day, but I'm sharing, with you, my own personal experiences with diagnosis and medication and hope.

There are a lot of things I’ll talk about with my friends. I’m not embarrassed or afraid of most subjects, but when it comes to myself and my pain, I tend to shut down and only unleash what is wrong in small, frustrated bursts. This year, after a lot of thinking and the help of absolutely incredible friends (Holly and Charlotte, just to name a couple), I’ve realized it’s okay to talk about it, and to admit that I was completely scared, confused, and had absolutely no idea what to do.

Which brings me to this: I want to talk about endometriosis.

Many of you on my list know that I’ve been struggling for a long time with chronic pain in my pelvis and debilitating menstrual cramps. I first got my period when I was 10 years old, and it’s been hell ever since. My periods have been erratic, painful, and more disruptive in my every day life than I can fully explain. I never know when it’s coming, I have cramps that induce vomiting and crippling all over pain, and there are times where I’ve bled for up to 4 weeks at a time.

I’ve been to countless specialists, before I lost my insurance, and some of them would touch on things like endometriosis or PCOS (polycystic ovarian syndrome, a whole other beast), but nobody had any real answers for me. I would be put on birth control or given pain killers and told to just get through it.

I want to say to you, if you’re suffering from anything similar, that you DO NOT have to “just get through it.” That level of pain and discomfort during your period, it’s NOT normal. Don’t let someone tell you it’s supposed to hurt that badly, because it isn’t. Severe pain isn’t a symptom of your period, it’s a symptom of something that is wrong.

Endometriosis. This occurs when the endometrial tissue, that annoying tissue that lines your uterus and sheds during your period, grows somewhere outside of your uterus. It can grow on your ovaries, your fallopian tubes, anywhere around your uterus. This also means it can grow on your bladder, or your bowels, or any other organs simply near your uterus. It can even, in very severe cases, grow in other places in your body. It’s like a ninja tissue that can fight its way to anything inside your body and plant roots.

That tissue grows, and when your hormones get going and you start your period, that tissue sheds. When that tissue is on other parts of your body and starts to bleed, it irritates those parts of the body, which, in many cases, is what causes so much pain.

The trouble is, there are some women who feel absolutely nothing and have endometrial tissue growing everywhere, and the only reason they discover it is because they can’t get pregnant (yeah, that scar tissue that builds up from this nasty business can cause infertility.) Then there are instances where women feel extremely severe pain and have only small amounts of endometriosis.

Now that we have the lesson on painful mensturation out of the way, I'll get to the point of this post: I’ve promised to be more open about my medical issues with my friends and family, and to be completely honest, it has helped me so much.
I might have endometriosis.

Here’s the thing: It’s really hard to diagnose this problem. Another really difficult thing, in my situation, is that I do not have health insurance. Besides the chronic pelvic pain, my bladder is affected either by endometriosis or by something else, and the feeling of having to urinate never goes away. This affects my daily routine; I can’t sleep well because of pain and constant bladder irritation, I have to coordinate any trips I take outside of the house around whether or not there will be bathrooms available, and I have to gauge how I’m feeling at the time, trying to predict if I will be in too much pain to make it through said outing.

Besides that bladder and pelvic pain/irritation/discomfort, my family is plagued with rheumatoid arthritis. I won’t get into a lengthy discussion on RA; it’s chronic pain, where your joints break down and hurt like the dickens. My father was diagnosed with RA at age 17. My older sister was diagnosed with RA around age 27-28, and my younger sister at age 22. My mother has osteoarthritis.

I have an appointment soon to have myself tested, but we all know the answer. I have some kind of arthritis. My left thumb continues to warp and deform. It’s at the point where I can’t straighten it fully anymore. I feel like there is cotton in between my joints at all times, and there is constant pain in my fingers, my knees, my ankles, my elbows...many, many places.

My GP has given me some medicine used to treat patients for fibromyalgia, in hopes that it would soothe some of the all over body pain I experience, and has suggested I talk to my rheumatologist about possible fibro in when I go for my appointment.

Here’s another thing about chronic diseases: A lot of them occur together. There’s a good chance that if you have one, you’ll get another. I’m not saying it’s definite, that you’ll have more than one chronic disease in your lifetime. I’m saying there’s an increased risk of it. For example, if you have RA, there’s a good chance you could get fibro. If you have endometriosis, there’s a good chance you might also have interstitial cystitis or fibromyalgia along with it.

These are all things I need to have tested. These are all things that are done by specialists, and are really damn expensive to take care of. These are all things that affect my every day life, and keep me from living and working and taking care of myself the way I promised I would when I was younger.

I’ve gone to social services. I don’t qualify for medicaid or disability or anything as such. They were very kind there, and explained that there are so many people who are in a situation like mine, who slip through the cracks. I want to say, though, that as much as I’ve felt like giving up, and as many times as I HAVE almost given up, that there is someone out there who can help.

Right now, I’m on a drug called Lupron. I went to a gynecologist (called all around, to find the best rate, and this office really helped me out with payments and such) and he told me that IF I have endometriosis, there is a good likelihood that this drug will determine it, without the need for surgery (which will save my bank account in the long run). It’s a drug that makes your body go through menopause for a while, so it shuts your ovaries down. If you have endometriosis, it should, if it works, shrink that tissue because it will no longer have those menstural hormones to feed on. He told me that if I don’t feel better, then it’s a pretty safe bet that I do not have endometriosis, and should consult a urologist about interstitial cystitis (also known as painful bladder syndrome).

(Though there is a chance that my pelvic pain could lighten, and I will still have bladder problems, in which case I need to consult a urologist anyway, because endo and IC often occur together and exhibit a lot of overlapping symptoms.)

Lupron is super expensive. For four months of shots, it was going to cost me somewhere between $3,000-4,000. Remember, I’m uninsured. All of these visits and medicines add up. I still have somewhere around $6,000 in medical bills from the last three years. (I'm in the process of trying to take care of them).

I really want to explain, though, that there are programs in place to help. It might take forever and a day to find them, which it did in my case, and it might still cost you in the long-term, financially, but it'll be worth it in the long-term. I’ve been dealing with unanswered questions from doctors for around 13 years now, ever since my first gynecological exam when I was 15. But here’s the cool thing: I called and emailed everyone. I called/emailed everyone I knew, and then I called/emailed everyone THEY knew. And my friends called and asked around. My mom called, my dear friend, Julia, asked around. We contacted everyone, and it was tiring and frustrating, but guess what? I got the injections I needed from the company’s charity program.

I’m lucky enough to have a lot of support, especially from my dear friends from Twitter, most of whom I met through the love of the show Psych. I wouldn’t still be here, trying to make it through this if it weren’t for many of them. I’m not ashamed to say I’ve tried to give up many times during this whole process. Pain does things to a person that can’t be explained, especially to people who have never experienced chronic, long-term, debilitating pain.

I’m not the worst-off person in the world. I’m lucky, contrary to belief (my dearest heart of hearts likes to say my luck is like a cosmic joke being played on me by the universe who enjoys watching me suffer. I guess this is what I get for being born on April fool’s day.)

I guess I really just wanted to get this out there, for someone who doesn’t understand pain, and for those wondering what it is I’m always moaning about when I tweet something along the lines of, “UGH HIGH PAIN DAY KILL ME NOW I HATE EVERYTHING.”

Hey, some days you can get through and others you can’t. Yelling, screaming and crying are the only things that feel right sometimes.

Just, there is support out there. Be honest, and don’t give up on trying to find it. Yes, it’s easier said than done, believe me. I’ve been there. Hell, I’m still there. But I have to try.

Hopefully these injections do the trick for the pelvic and bladder trouble. I don’t know what it is I have, so it’s a lot of trial and error at this point, but the support of my friends and family and absolutely wonderful fandoms really mean the world to me.

<3 Jenn