Pain.

a cure for what ails you, abuse, memories, ptsd, relationships

My last pain doctor suggested that my history of abuse (especially sexual abuse) might be the main source of my pelvic pain, along with neuropathy. I have muscular trigger points that cause low pelvic pain, despite having had two injections and a nerve block. It’s true that my endometriosis has progressed from stage one to stage two, after essentially being “reset” by a laparoscopy in March 2011, but I’m taking two forms of birth control to at least slow the progress, if not completely stop it.

I have no more options for controlling or reversing the endometriosis. Lupron didn’t work—all it did was leave me with horrible acne scars on my left cheek and $2,000 poorer. Another surgery is out of the question, mostly because of finances but also because there’s a very good chance it could cause more scarring and adhesions and actually make things worse. All this has led me to reconsider my stance on the mind-body connection, which I’d previously scoffed at.

I was looking up information on pelvic pain related to a history of abuse and found a study on the topic from 2000 (http://www.ncbi.nlm.nih.gov/pubmed/11084180). Some highlights:

  • 22% of patients with chronic pelvic pain were sexually abused before their 15th birthdays
  • 25% of women with chronic pelvic pain were exposed to emotional neglect, especially during childhood
  • 38% were exposed to physical violence

I haven’t written as much about sexual abuse as the other forms I’ve suffered, and I think that’s probably because I still haven’t connected with any of it emotionally. Now that I’m in a functional relationship with a good person who makes me feel safe, appreciated, and generally cared-for, I’m beginning to feel better about myself and more secure and confident in my self-worth.

In short, I think I’m finally ready to talk about it, though in the interest of protecting their privacy, I’m going to avoid all but the vaguest references to abuse within my family.

I’m still not completely sure whether or not I was molested as a child, although more therapists and psychiatrists than you can shake a stick at have all told me that my partial memories, repression, sexual precocity, and general attitudes toward my body and sex are strongly suggestive (no pun intended) of early abuse. I was terrified of men until I was fifteen—I stopped crying and completely losing it around them around age seven or so, but I kept my eyes down, or at least averted, and would cross my arms over my chest and hunch over—anything to keep them from seeing me or even noticing that I was there.

My mother had a boyfriend who made me profoundly uncomfortable from the time I was five until she went to prison a year later.

I remember crying whenever she left me alone with him. They both drank, but I was especially frightened of him. He was tall and overtly masculine in a swarthy sort of way with dark eyes and hairy arms. I will never forget those arms, which I think explains my penchant for mostly hairless men with less testosterone-loaded features.

I have a memory from when I was about five-and-a-half of lying in bed in the room he’d set up for me in his house. (We frequently stayed overnight, and I’d always cry when she insisted I had to go with her.) They’d gone out on a date and had left me alone with his son, who was fifteen at the time and very kind and protective of me. He used to read me books before bed, but because he was pretty severely dyslexic and I was way ahead of the curve in terms of language and reading ability, I usually took over and read him to sleep on the living room floor before putting a blanket over him and tucking myself into bed.

For some reason, I was still awake that night when they came home, albeit in a drowsy twilight state. I remember them opening the door to check on me and seeing the dim, watery yellow light flooding in through the crack in the door. She walked away and he lingered there for a moment. I remember seeing him hesitate, then approach my bed. I remember his dark silhouette against the thin light from the hallway. I remember that hairy arm stretched over my chest, and then everything fades to black. The memory ends there.

It bothers me, not because of the implications but because I pride myself on being annoyingly self-aware and don’t like the idea that my brain, which I know so well, is still hiding things from me. I want to know. I don’t want to know. I’m curious, but I know there’s probably a good reason my brain is blocking that memory. What good would it do, anyway, knowing for sure whether or not anything had happened? I know that he was abusive toward both of us in other ways, and I feel like that should be enough.

But sometimes it’s not.

I’ve written about the other abusers—all four of them, for a grand total of five—in other posts and may revisit the topic later. But for now, I wanted to finally speak out about the one incident from when I was a child that’s still bothering me, that I still haven’t been able to untangle, in hopes that it might strike a chord in one of my readers. I don’t like to think about other people being abused, but I know it’s one of those horrible realities I have no choice but to face, especially since I want to specialize in trauma therapy.

It feels wrong to hope that someone will be able to relate, that they will reach out and that maybe we can have a dialogue and reach some sort of insight together (or at least achieve catharsis), but I feel like it would be incredibly helpful right now. I’ve learned that we need to lean on each other, because no matter how good the intentions of our friends, partners, and families might be, there is no substitute for being able to talk to someone who’s experienced what you’ve been through.

I am here for you, readers. If you need help, I will help as best I can. And if you need to howl into the void, I will be your void.

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Remission?

abuse, Authoress, endometriosis, medication, ptsd, rapid-cycle bipolar disorder, three hopeful thoughts

 

Also pictured: Beast-baby Dorian T. Catsby on his king-of-the-house perch

I can’t remember the last time I was sad. Granted, my memory’s not great, and there was a lot of crying last week because of all the trauma that was suddenly dragged to the surface, but now that I’ve made my peace with that—or at least, beaten the beast back into its cage, tucked safely away deep underground—I feel good. Not hypomanic- or manic-good, but balanced, settled. Things aren’t going the greatest right now, but at least I have the concrete knowledge that they’re going to get better sooner rather than later.

Current medications:

  • 200 mg lamotrigine (Lamictal) taken twice a day, once in the morning and once in the afternoon/at night (usually around 6:00 or so).
  • 1 mg tabs of lorazepam (Ativan), as needed. Since the myoclonic jerks I began experiencing when my Effexor dose was too high have begun to subside, I’m finding that I don’t need this as often.
  • 300 mg lithium taken three times a day, two in the morning and one at night
  • 125 mg venlafaxine (Effexor), taken in the morning
  • 50 mg hydroxizine for sleep, one to two capsules as needed

This regimen seems to be working well for me. I’m sort of scared that it’ll just stop working, which is what I’ve experienced in the past with psych meds as well as endometriosis treatments, but I’m trying to stay positive.

Speaking of endometriosis, I met my new pain doctor on Thursday; he and his PA are both excellent. She spent some time asking about the nature of my PTSD and then informed him, and he actually asked if it was okay if he examined me before inviting me to hop up on the table. That was a whole new experience for me, and while I don’t really like being treated that gingerly, it was obvious that he was making an effort to make me feel comfortable, and I appreciated that.

I had some trigger point injections done yesterday morning; the knot of muscle was located very low, well below the bikini line in my general pubic area, but I didn’t feel nervous about him touching the spot or doing the injections. Because of my initial impression of him, I found it very easy to trust him implicitly. First impressions matter.

Right now, I’m in quite a bit of pain…about a level 7, which isn’t fun but is something I can tough out. As D. has told me, I’m “a tough old broad, a bad motherfucker.” Several people have suggested I buy the Pulp Fiction wallet and after everything I’ve been through with the pain in the last few years, I just might. It feels like a cautery knife is running back and forth through my lower abdomen, but my mother assures me that this will subside in a few days.

In the meantime, I’m keeping busy—cross-stitching, reading Ruth Reichel’s food/bipolar mother memoirs, and bothering the beast-babies, as usual.

Readers, what do you use to distract yourselves?

I’ve been feeling like a raw, exposed nerve lately.

ptsd

I’ve been dealing with a particularly ugly batch of memories lately, one that I should have dealt with sooner: the sexual abuse/coercive rape in an otherwise abusive relationship I was involved in during my teens, and a sexual assault that occurred last summer.

Let’s back up. I had my initial consultation at a local pain clinic last Thursday, and while the attitudes of the doctor and his PA were certainly off-putting and had me feeling as though I was on trial, guilty of something, it was one particular portion of the physical exam that triggered me.

From what I understand, physicians are supposed to begin with “neutral voice, neutral touch” when approaching “private” areas. The first portion was okay, though the pressure on my lower abdomen caused quite a bit of pain (I have endometriosis, which is why I was there in the first place). The problematic part came when the doctor instructed me to sit up. Then, instead of letting me know what he was going to do before he did it, he slid his hands up my skirt, onto my inner thighs, pushed my legs apart, and then sat back to wait.

“Push your legs together and let me know if it causes pain,” he said. I did; no pain. There wasn’t any actual inappropriate contact; it was just the circumstances (abrupt touch and being in a closed room with two men who had already put me on edge with their accusatory attitudes) that happened to trigger me. The part that baffles me is that he kept referencing my bipolar disorder and (especially) my PTSD. He had a problem with the fact that my mood stabilizers put a damper on most of his plans for treatment and wasn’t afraid to tell me so.

The worst part was when, upon noticing my escalating anxiety, began commenting on my PTSD and saying that I need to find coping methods, need to work with a therapist, and so on. As he was heading out the door at the end of the visit, after we’d discussed a procedure involving a nerve block (which he had initially said would require only a local anesthetic), he looked over his shoulder and said, “Oh, yeah, we’ll want you very sedated for that procedure.” By this point, I was a nervous wreck; my hands were shaking and I had pushed myself as far back in the chair as I could, trying to make myself as small as possible.

I’ve put in a call to the complaint department and have asked for a new doctor, though I haven’t heard back yet on either count.

Moving on, I finally confessed (is “confessed” the right word?) to my family about the rapes and the assault. My mother and auntmom were infuriated but not surprised, considering they hated the guy I was dating at the time and knew I was being abused, though they never really tried to intervene. This wasn’t necessarily a bad thing, considering I wouldn’t have listened at the time, anyway; as we all know, abusive relationships come with a lot of brainwashing. On Sunday, I also “came out” to another aunt about many of the things I’ve kept hidden from my family for the past seven years, including the sexual abuse, the trauma I suffered as a child, the bullying, and the miscarriage I had at five weeks when I was 19.

Needless to say, it’s been a trying couple of days and I’m struggling to get back on my feet and regain my characteristic toughness. But dealing with all of this so directly and all at once has definitely taken its toll; I feel anxious when left alone and, unfortunately, have found myself feeling apprehensive around men over the last few days. D. and I were unloading bags from the car this morning and there was a portly man in overalls, a stained t-shirt, and a John Deere cap—basically, the stereotypical “farmer” type you see around here—standing next to his pickup truck in the parking space two away from ours. He was staring at me. He didn’t move, he didn’t smile, he didn’t say anything. He just stood there and stared.

Normally, I would have met his gaze fearlessly and unflinchingly until he looked away or left, but today, I just….couldn’t. I put my head down and kept my eyes locked on the ground as I walked as quickly as possible toward the building, thankful that management recently added locks to the outermost doors as well. D. followed close behind and agreed that the guy had been creepy, but the commiseration didn’t help much; I felt dirty for a while and hated myself for bitching out, for not being able to act like the bold broad everyone seems to think I am.

Right now, I feel vulnerable, exposed, weak. That incident on Thursday ripped me wide open and I don’t know how to close it up this time. I’m not sure why my mind decided now was the perfect time to deal with things that happened six years ago (though the sexual assault was last summer), but at least I have the wisdom to know that all I can do is cope to the best of my ability and ride it out.

If any other survivors of rape/sexual abuse/sexual assault/whatever you want to call it have any tips for coping, I would love to hear them.

Stay strong. Stay beautiful.

Some of my best friends are pharmaceuticals.

abuse, endometriosis, major depression, medication, rapid-cycle bipolar disorder

I look at the clock. Seven hours left. I count my pills again. Today is the ninth, which means that I have another eighteen days until I can get a refill.

I have 18 oxycodone left and another flare-up is just getting started. This leaves me with one pill per day; unfortunately, I often end up taking two, the maximum dose I’m currently allowed. One pill lasts only a few hours and then the symptoms–the overwhelming, uncontrollable tightness in my lower abdomen, the stabbing pain, the feeling that my ovaries have literally been set aflame–begin to fade back in until they’ve become a deafening roar, preventing me from concentrating and leaving me barely able to move. I cannot focus on conversation when I’m in this state; everything is too loud and I want to scream at everyone to shut up and leave me alone to die in a heap on the floor.

Eighteen days.

I will admit that in the past, I’ve taken opiates for less-than-severe pain flares because my mental state needed a serious boost, and if there’s a drug that’s great for doing that in the short term, it’s oxy. With the pain gone, I become gregarious and upbeat, able to focus and get my work done, to handle–and even enjoy–the company of others. Please note that I am not advocating opiate abuse–it’s ridiculously dangerous and it’s way too easy to build up a tolerance. Also, the damned things are so difficult to get even with a legitimate prescription that it’s hardly worth blowing through your supply in the interest of having a good time.

Since the introduction of lorazepam into my medication stash, I haven’t abused my oxy in the name of keeping my sanity. The benzos flood my system and fill me with a lovely tangible warmth. My lower belly finally relaxes. My hands stop shaking. There are no more tears and the world appears to slow down. My head becomes quiet and I can once again focus without wanting to burst into hysterical crying over a misworded email or the memory of some shameful thing that happened to me fifteen years ago and happened to surface as a matter of coincidence.

In moments of extreme pain when there is no one around to distract me, I sometimes drink heavily. There are other substances too, of course–there always are when you’re self-medicating, an endless stream of chemical friends to fill the long lonely hours. I cannot remember the last 24-hour period where I hadn’t taken anything, but I am still holding down a job, maintaining relationships…I figure I’m okay. It’s a temporary fix, I tell myself, just enough to get me through until the real problem (my chemical imbalance) can be corrected.

These drugs, they keep me safe from myself. They take me from “She’s all messed up” to “This girl is fucked in the head, but she’s still fun to be around, at least.”

I’m switching to a new doctor this month and am somewhat horrified at the prospect that I may not be able to continue my painkillers–until they find a cure, or at least better treatments, for endometriosis, I’m stuck battling this horrible disease with opiates. It’s not ideal by any stretch of the imagination, but it is my only option for now. Two years after my diagnosis, I’ve reached the end of the line. No more options except another surgery, which will help me for another year at most before things return to how they are now. In fact, surgery could actually make things worse.

I know a lot of people think of medication–whether it’s antidepressants or the long-term use of painkillers–as a crutch, as if “mind over matter” could cure all of our ailments. They’re entitled to their opinions, certainly, but for my part, I’m just grateful for modern medicine and the fact that there is something, anything, that can take the pain away, if only for a short while.

Insensitivity.

endometriosis, stigma

There’s been a recent influx in the amount of ignorant and downright insensitive comments made to me about my endometriosis, and I’m not quite sure how to deal with them.

They range from the hopeless (“You know, at some point they won’t be able to do anything more for you and you’ll have to learn to live with the pain flares”) to the uninformed and offensive (“At age 30 or 35, they’ll probably tell you it’s time for a hysterectomy”), and all carry the assumption that I am being irresponsible for not being able to work and unreasonable for wanting more than living life at a daily pain level of 7+.

Even when I try to educate or simply shut the person down by sharing actual facts about this horrible disease, I’m treated like I’m just making excuses or don’t know what the hell I’m talking about because I am young (24). And to be honest, I’m running out of energy to deal with these people, which is unfortunate because 90% of the comments come from relatives. I used to be able to come up with snappy comments to shut the person down before things got out of hand or affected me too deeply, but now all I seem to be able to do is internalize it and watch helplessly as I self-destruct.

What do you do when people just plain don’t want to learn about your affliction and prefer their own misinformation to the hard facts?

It’s true that there may not be a lasting solution for this illness that will allow me to return to work and live pain-free, but I feel that actually saying those things to me is cruel, amirite?

D. finally snapped tonight after watching me struggle to explain the disease for the umpteenth time and said, quite bluntly, “Think of it as cancer without the cancer.” Endometriosis is terribly invasive; it feeds on estrogen and burrows deep into the pelvic organs. It has even been known to grow on other organs, such as the kidneys, lungs, and brain in more severe (and admittedly, rarer) cases. It is incredibly painful, and the level of pain experienced by the sufferer is not always proportional to the disease’s stage. And while the growths are benign, the disease causes a host of other health problems along the way in addition to wreaking emotional havoc on the sufferer and her* loved ones.

Lately, I’ve been feeling a lot worse physically and very hopeless. I can’t even remember the number of times I’ve said, “I don’t want to live this way anymore.” All I can do is hope for a better tomorrow, that I’ll be able to see a pain specialist soon and that he or she will be able to help me come up with a long-term solution for managing the symptoms. My ob/gyn is against operating because my first surgery (a diagnostic laparoscopy performed in March 2011) only gave me about a year and a half pain-free. As it stands, I’m at pre-op levels of pain; I’m just better at functioning while I’m in severe pain because my body has had time to adjust.

It’s frustrating that despite my best efforts to educate, to frankly discuss my personal experiences with a very sensitive, personal illness, people still continue to assume and make hurtful comments. It’s not that I’m thin-skinned; it’s that this disease has exhausted me to the point that I can’t help but take the rudeness and insensitivity to heart.

People exhaust me.