So, as some of you may be aware, I've had some health issues the last six months or so. I've not gone into much detail, mostly because I figure ya'll don't really want to know, especially since it's girly reproductive system stuff. WARNING: This is ranty and depressing, so you might want to give it a miss. If I post this at all, it'll mostly be for chicks with endo on google, looking for someone to empathize with the hopelessness of their condition.
But I'm really frustrated, and I just need to get this out, so bear with me.
Last fall (late summer, really), I went off birth control. Not because I want kids (as fucking everyone tends to assume), but because I had long suspected there was a hormonal component to my issues with depression and I was sick and tired of the birth control screwing with my head. Having been on it for around 14-15 years, it took a few months to get out of my system, and those months were pretty rough. But, by mid October, moving into November, I had reached a point where I was pretty well normal--no random screaming/crying fits (think like a seizure, only conscious and with less twitching), my periods weren't hurting like they had been those first few months, and I was the most emotionally stable I have quite possibly ever been. Midway through my cycle in November though, I started to hurt. I initially thought it was normal--since going off the pill I'd had some mid cycle pain (mittelschmerz)--but then it was still there the next day. And the next. After a few days of this, I went to my GP, who did a urine test and drew some blood, declared no sign of infection in said fluids, said it was probably a pelvic infection, gave me some antibiotics and told me to use a heat pad. I'd like to point out that at this time, I was in some pretty serious pain--moving around hurt, as did sitting in certain positions. But hey, it got better with antibiotics, so I figured all was going to be well. But as soon as I finished the antibiotics, the pain came back, with a vengeance. After a second batch of antibiotics and my third visit to my GP (who is no longer my GP because of all this), I finally got referred to an OB/GYN. By the time I saw her in mid December, I had been in pain for the better part of a month--and we're talking, I can't sit up straight, standing up long enough to shower has me in tears pain. The GYN did a pelvic exam and a pap (which at no point did my GP do, nor did he even ask when the last time I had had one done was) and finished it off with an ultrasound. When she hit a certain spot in the pelvic exam, it hurt so much that I think I actually blacked out for a second. The ultrasound revealed oodles of ovarian cysts, and a laproscopic surgery to remove them would have to be scheduled. By this point, it was almost Christmas, so it was January before they could get me in. Again, for most of this time, I'd been in pain severe enough that the closest I could get to sitting up was mostly reclined--I actually had to call into work, because I could not sit upright for three hours (which is the most physically strenuous thing required of me there). Early January saw me in surgery (the day after my birthday, I might add), and immediately afterward I felt better, except for the pain caused by the surgery.The good news was that she didn't have to remove an ovary--the bad news was that I have endometriosis.
For those of you who don't know what it is, you know how every month a lining grows in the uterus in preparation for a baby, then it sheds out (i.e. Aunt Flo)? Well, with endometriosis, some of that tissue somehow gets outside of the uterus and does its thing in other places of the body. And because there's no place for the crap it's shedding to go, bad things happen. There is no cure.
The primary treatment is (wait for it) birth control.
So, when we discussed this at my follow up after the surgery, I pointed out the massive emotional issues I've had while on BC (prior to going off it, I'd've said 40-60% was hormonal. Now? 80-90%). I went over this list of formulations I've tried, and her response was, "So, pretty much everything." There was one left that I hadn't tried, mostly because it's less effective for the preventing pregnancy thing. But, because of previous issues, I refused to go back on it without anitdepressants to act as a check. Because of my history, she wasn't willing to prescribe them, so I had to find a shrink.
I eventually did find someone who wasn't crazier than I am, and started on Prozac two weeks before my next period so that it would be in my system when I started the pill (you start the pill either on the day your period starts or the Sunday after). Those two weeks were less than pleasant, because I didn't really need the prozac, and being on too high a dose of that stuff makes me jumpy as hell. But I got through it, and started the pill. I started it late on Friday that week, and by Monday night I was curled in the fetal position (as much as I could curl, anyway--when those fits hit, my movement is kinda limited) sobbing and screaming, and trying to figure out why it wouldn't stop. The husband beared with me (bless his heart), and we both decided that I should stop taking it. Within a few days, I was back to normal (I also quit the prozac, since I didn't need it).
I finally got around to calling the doctor to figure out where to go from here, and it was singularly unhelpful. They asked if I'd found a new GP yet (no, because I haven't been sick, and can't afford to seek medical help recreationally) and how bad the pain was, and then basically set me loose.
I actually did have a couple pain free weeks in February, once I'd healed from the surgery, but it's been slowly coming back. Mostly just annoying, but I've been having to take painkillers for most of March. To be honest, I'm home right now because I hurt (it still gets worse a bit before my period and during the monthly massacre in my pants).
The horrifying thing is that you can surgically remove the lesions and whatnot caused by endometriosis, but it comes back. And there's no telling when--it could be a couple years, it could be a couple months. The uncertainty, the, "Should I plan for that or will I be in too much pain to follow through?" is agonizing. Never knowing when I'm going to be in too much pain to live my life. Seriously, I'm almost done with school--am I even going to be able to hold down a real job? And there's nothing I can do. I can take painkillers, but nothing really kills the pain, and I can't take anything more than naproxen without impairing my mental faculties. Looking at support groups and resources online really just makes the situation more bleak--it's all about how birth control can keep the pain from coming back. But what if you can't take birth control? Just suck it up and deal? "Oh, use relaxation techniques, get plenty of sleep, and switch to the endometriosis diet (which ranges from vegetarian to outright vegan)." Riiight. I'd love to get plenty of sleep, but I have shit to do, like class and work. And I'm not giving up meat, cheese, and chocolate (aka. the food that makes life worth living). Can I get some practical solutions here that don't feel like a fucking bandaid? Can I get a practical solution that I can actually life with? "Women who identify with the disease experience less pain." I'm sorry, but I don't want to be defined by what's wrong with me.
And the support groups? When it's not, "I've had six laproscopies and the pain's gotten worse after each one," it's all about the infertility aspect of it (endometriosis can cause infertility). I'm not really that interested in having kids--can I get a support group for women with endo who don't want to breed? Because the focus on fertility is really awkward, because it makes me feel like I should care when I don't. Thank you for the reminder of that. Seriously, looking at support groups only makes it more depressing.
Yeah, sorry to be such a downer. There is no happy ending for this story. I figure I'll probably have a couple more surgeries and have a hysterectomy within about ten years. This isn't based on anything my doctor said, but on the basic trends associated with this disease.
But I did find one bright spot in my internet searching, and I would like to share it.
At least I'm hot.
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