It Really Is a Curse

My period is evil. It is a nasty horrible thing that takes over my life with an intensity of pain that is so great and all encompassing that the only thing that comes close is childbirth. Unfortunately, the longest that childbirth has lasted for me is 36 hours. My period these days? 4 hardcore days of blood and guts and then the whole week before, pre crampie bloated mess of me. Seriously, my breasts are so full of water retention I swear I get phantom let down feelings whenever I get around pregnant women. Ugh.

How does one explain this to someone who has never had their uterus pull on them like a charley horse?

I know that some women say their kidney stones hurt worse? But frankly, they didn't have my labor pains, nor my menstrual cramps. They are really really bad and without pharmaceuticals I would have spent a tenth of my twenties curled up in a fetal ball of pain and loathing. It is insidious and evil and these days the pain lasts about 10 days, four of which are for when I actually HAVE my period.

But I don't have my period yet. And the pain is killing me. I was supposed to get it on Wednesday and it's Saturday now. Two days late, which isn't out of the ordinary. I'm a 28 to 30 day gal. (And I'm not pregnant, blood test from a doc on Wednesday said no.) The only times I've been really irregular were when I was taking supplemental hormones of some kind. Hmm. So, first time I took prednisone for a never ending fungal sinus infection I had because of an immune deficiency my body has for a specific fungus, my body produced a grapefruit "functional" cyst that burst on an otherwise lovely Saturday such as today almost five years ago.

I have very clear memories of the day because my life hasn't been the same since. I was getting ready in the morning and was overtaken with a sharp and debilitating pain that knocked me to my knees, much like my labor pains or an extreme charley horse or I imagine a knife wound. Then the "gas" pain began which wasn't so bad if I could get into the right position. But it wasn't gas. Its was blood, leaking into my body cavity, spreading around like salt on a wound. 12 hours later I had the diagnosis, some pain killers and follow up appointment with my OB.

Two weeks later I was in the ER again when indigestion turned into spasming pain around the same spot that the cyst had burst two weeks earlier. This time there was no diagnosis. Nothing was wrong. Three days in a hospital and I was on my own. What did I try as that Spring progressed into Winter?

Ah yes, Pelvic Floor therapy.  Yeah, like a crazy invasive gynecological appointment. And what else? Ah. GI doctors. Because the pain killers I had been given were Vicoprofen, and my stomach began to intolerate the NSAIDs so I had nausea and gastric reflux, and one incomplete endoscopy, then I went to another GI and had another endoscopy of my stomach and a colonoscopy and every known blood test. Nope Nothing wrong. Just the ever elusive GI diagnosis of I.B.S. Hmm. And maybe it was adhesions? Those are scar tissue left behind from surgery. Oh yes and I also saw two other OBs. One was an oncologist who ruled out cancer. Phew. The other was the head of a prestigious hospital who charged me $350 to tell me that I might have congestive pelvic something or other OR endometriosis, and he could give me a shot of Depo Prevara to see if I would respond to the treatment and if I did, then it would give me a diagnosis of endometriosis. When I told my OB that I had seen this Depo Prevara happy dude he told me he wouldn't give that poison to his worst enemy. Yeah. I'm glad I told this doc no. He already scammed me for like $500 bucks for the initial appointment. And thank God I asked him, "How would this affect my fertility?" Because I was planning to get pregnant that summer. The summer of 2007. Yeah. Well that dream sailed a long time ago.

So yes. I am writing this from the deepest places of despair. I'm in pain, I'm having nausea, I've got to figure out what my kids want to eat for dinner and find the energy to do so, and I'm on a ridiculous amount of pain killers that just take the edge off. So I'm not pregnant, in pain and just have four days of my period to look forward to. The rest of my saga will have to wait for another day. But right now I am feeling the curse. The bloody F'ing curse.

I Want a New Drug, One that Actually Works

I think I have finally begun to understand that old Huey Lewis song from the 80s. I want a drug that takes away my back pain, my IBS pain and my PMDD pain. We won't even get into my sinus headaches, the neck/shoulder spasm pain I sometimes get or the random plantar fasciitis pain I have in my feet from time to time. I have way too much in common with my 80 year old friend Irving and he's twice my age. Is it ever going to get better?

I don't know, but I won't give up. Not entirely. Sometimes I take breaks, but I keep doing research, keep looking for studies and new solutions. Recently I found a new term when searching for a solution to my IBS pain that's been acting up. IBS stands for Irritable Bowel Syndrome — which is a catch all for unexplained diarrhea and constipation when other diseases have been ruled out. I used to just have diarrhea, but now since I've been on and off Percocet for four years I get what they call, "alternating" IBS which means I have both. Oh and with the constipation I get stabbing pain in my lower abdomen right before I move my bowels. How exciting. At least I get a one minute warning bell before I need to get to a bathroom.

Sigh. Why don't gastroenterologists take my pain complaints more seriously? Well one of them did, but she thought it must be from adhesions. Adhesions are scar tissue from my c-section (that had happened three years earlier.) Well I had surgery to see if that was the cause, and um, it wasn't. She doesn't take my insurance so I went to a new one. She told me I had the thyroid disorder right before I went under for a colonoscopy, and that was right after the anesthesiologist expressed concern for my doctor prescribed usage of Percocet for my debilitating back pain. "You're too young to have this much pain." Right doc, you got any fucking answers? I mean shit. Why do doctors think they should be talking to a patient whom they've never met before while she's naked in a gown being wheeled on a gurney?

Ugh. Okay. I have a mantra of no anger. No anger. Can't afford it. And the fact is that doctors are as limited in their knowledge of pain conditions as I am. And for whatever reason it has apparently become the patient's job these days to keep track of their health and connect all the dots. I can either accept it, or get angry. So I accept it and keep looking for answers.

So I found a study about "Visceral Hypersensitivity." It's the newest research in digestive issues like heartburn, reflux and IBS. They've found that patients who complain of this kind of pain seem to be sensitized to visceral pain. Visceral is internal organ pain. Somatic pain is y'know external. In fact, people with visceral sensitivity tend to have a higher threshold to external pain. Which explains how easy it is for me to give blood, and yet the moment I have gas I'm crouching in the fetal position.

Anyway. The science is a little above my head, but the pain is somehow due to histamines and serotonin and all that kind of stuff. So old school anti-depressants and some kind of antihistamine that you can only get in Europe and Canada. So that is a no-go, until my husband or I travel to Canada. The old school anti-depressants are tri-cyclic. Americans being a depressed and anxious lot, those are a little easier to come by. Plus, it's supposed to help with neuropathic pain, and PMDD...does that sound like my new and perfect drug?

Well, sort of.

Within 24 hours of taking nortriptyline (Pamelor or Aventyl) I had already started to experience one of the side effects (dry mouth) and the next day I forgot to take Percocet until the evening because, frankly, for the first time in months I had no back pain. I've been an emotional mess the last two weeks, but notriptyline takes longer to have anti-depressant effects than it does to take care of pain. What's funny is that I took this medicine for IBS pain and have had it actually treat my lower back. So far this has held true. In the last couple of days leading up to my period I'm somewhat okay emotionally, but y'know I'm never great even on Prozac. So far, nortriptyline is stopping me from circling the black hole.

So it's treating my IBS (I think, I actually haven't had any in a while, probably more due to my probiotic that I take called Align) , lower back and the worst emotional effects of PMDD. What about menstrual cramps?

Nope. No go.

I didn't expect that to happen, but still it's kind of annoying to be able to start titrating off Percocet only to get sidelined by the mother of all pain. And my internist didn't seem to understand how bad my menstrual cramps actually are. I still honestly wonder what drugs would exist if men had to go through this every month. Okay, no anger, no anger.

My cramps have always been bad, but in my 20's I was able to stop them with ibuprofen. Not so anymore. They used to last about one to two days; now we're talking a solid four if not longer. Last month I was basically in a dream/drugged state for four days while on vacation having my period. It's brutal. And I get cramps for a week before my period too. I've read that this might be due to my thyroid disorder that's gone untreated for four years (can't get angry, can't get angry) but it's still pretty horrible. And I'm getting a bit angry at my internist who just told me to supplement the ibuprofen with Tylenol. What? Tylenol? That's, um, that's NEVER WORKED. Ugh.

So. No titrating off the Percocet until my period is over. Because for the past year I've had to take Percocet, Ibuprofen AND valium in order to control the menstural pain. How normal is this? And why is this okay?

It's not okay. Going to call my internist and talk to him about this in more detail. He seemed a bit rushed and distracted when I was there and to be fair I made the appointment to get an antibiotic for my sinus infection.

So. All those with nerve related back pain, bulging disks and whatnot? Nortriptyline seems to be a lifesaver. But who knows. I'm cautious these days. I'll give it a glowing recommendation once I don't have to take the Percocet anymore. Until then, I'll keep searching not only for a new drug, but a better solution.

I Want a New Drug, One that Actually Works