Hypochondriacal Haggling
I was going to write today about my latest IQ test, but choose instead to whine. Again. And seek advice/personal experience stories. Care to play along?
Ever since my first 'real' cycle after the delivery, I have noticed left sided pelvic pain, very similar to the sensations I'd felt back when my ovaries were riddled with cysts. If you've ever had an ovarian cyst fester up and explode on you, you know the delightful experience of which I speak. If not, I don't fault you; you no doubt have your very own set of painful experiences to share. Some of us are fortunate enough to have a plethora of problems at any given point. That's why we're here. It's a pity party without the hats. Have some cake.
So, in March, on CD21 (counting from the day of delivery; my lochia only lasted 2 weeks), I called to report sharp pangs on my left ovary. I was thinking ovulation pains. They were thinking an ectopic since I wasn't super careful. All tests were negative, and the pain went away. I didn't get a period until mid-April. So, again in April, May, June, and July, I have felt the left-sided pelvic pains, but not always within the supposed ovulation times (as if I were normal or anything). As a matter of fact, for the last 2-3 months, this has been happening about a week before I get my period. Which brings me to my next point.
I never have had physical PMS symptoms, that I am aware of, anyway. Sure, I can be a real bitch, but as far as cramping and bloating goes, I sure don't recall it. If this new discomfort is in any way related to something going on in there, I want to track it as obsessively as I can so I might get a clue to when I might expect my period/ovulation/etc. Sounds simple enough.
You may recall my ER visit in June. I was having debilitating back/rib/pelvic/kidney pains, mostly on the left side, very much 'internal', and not at all related to the muscle spasms the idiot at the clinic diagnosed. The muscle relaxers did/do nothing to help, but they make me feel nice at least. ;-) The NSAIDs Dr. Wonderful suggested do not help either, nor do they lessen the severity of my periods, as he intended (prostaglandin synthesis something or other, read up on it, I'm not clear on it).
I had the same sensations for July's cycle. This has moved beyond the ovary pain I described. Both times (June and July), I started my period exactly two days after feeling this. I must reiterate here that this does not feel, in any way, like anything I have ever experienced in relation to my periods. I have been having menses for 24 years now, and I guarantee I have not felt this as a symptom of it. I have had a miscarriage, I have delivered, I have had back labor, and invasive diagnostic procedures; this doesn't even feel remotely related to my girlie parts. Yet, there it is. And yesterday, I had it again. Today, too. So if I start bleeding tomorrow, I am pretty damn certain this is a new "thing" for me to track. Take into account that would put this cycle at a mere 19 or 20 days (with an "O" on cd9, mind you) and I'm really screwed up. But we knew that already.
Far be it from me to self-diagnose (insert laugh track here). But, all I can think of is endometriosis. I have read the standard definitions and signs/symptoms, but what I want is a first-hand account of what a real patient feels. Anyone care to share? Do you feel like you are being ripped to shreds from the inside out, and in areas other than your uterus? Does it occur right before your period, or mid-cycle, or is it just pretty much all the time? Does it make your bleeding worse; do you have episodes of no periods at all, or too-frequent and too-heavy cycles? What did your doctor to to diagnose it; labs, tests, procedures, verbal accounts of the misery? Where is the strangest place you've had the tissue grow? I swear on a stack of maxis that this feels like my left kidney or the lower lobe of my left lung.
I guess what I am searching for is an "in" to persuade the office to listen to me. You know how it goes - word something just right so they pick up on subtle clues. I am getting nowhere with my description of back pain. I DID NOT INJURE MY BACK. Sure, I stand all day at my job, but I have done that for 13 years. No, I didn't lift anything. Or bend funny. And if it really was an injury, why the hell would it only occur once a month right before I start my period?
It's like having recurrent, hellish headaches. If you give up trying to be seen via the standard methods, sometimes you have to up the ante a little. Add in vision problems and/or nausea and/or fainting, and *maybe* the doc will take you seriously enough to see you. Is that really all that wrong? I'm not condoning lying just to be seen, and one should never invent serious symptoms, but we've all fibbed a little once or twice. Admit it. If I am just dead wrong and a horrible person for thinking this way, you can tell me so - gently - but I think we've all been there. A little creative complaining can go along way.
Ever since my first 'real' cycle after the delivery, I have noticed left sided pelvic pain, very similar to the sensations I'd felt back when my ovaries were riddled with cysts. If you've ever had an ovarian cyst fester up and explode on you, you know the delightful experience of which I speak. If not, I don't fault you; you no doubt have your very own set of painful experiences to share. Some of us are fortunate enough to have a plethora of problems at any given point. That's why we're here. It's a pity party without the hats. Have some cake.
So, in March, on CD21 (counting from the day of delivery; my lochia only lasted 2 weeks), I called to report sharp pangs on my left ovary. I was thinking ovulation pains. They were thinking an ectopic since I wasn't super careful. All tests were negative, and the pain went away. I didn't get a period until mid-April. So, again in April, May, June, and July, I have felt the left-sided pelvic pains, but not always within the supposed ovulation times (as if I were normal or anything). As a matter of fact, for the last 2-3 months, this has been happening about a week before I get my period. Which brings me to my next point.
I never have had physical PMS symptoms, that I am aware of, anyway. Sure, I can be a real bitch, but as far as cramping and bloating goes, I sure don't recall it. If this new discomfort is in any way related to something going on in there, I want to track it as obsessively as I can so I might get a clue to when I might expect my period/ovulation/etc. Sounds simple enough.
You may recall my ER visit in June. I was having debilitating back/rib/pelvic/kidney pains, mostly on the left side, very much 'internal', and not at all related to the muscle spasms the idiot at the clinic diagnosed. The muscle relaxers did/do nothing to help, but they make me feel nice at least. ;-) The NSAIDs Dr. Wonderful suggested do not help either, nor do they lessen the severity of my periods, as he intended (prostaglandin synthesis something or other, read up on it, I'm not clear on it).
I had the same sensations for July's cycle. This has moved beyond the ovary pain I described. Both times (June and July), I started my period exactly two days after feeling this. I must reiterate here that this does not feel, in any way, like anything I have ever experienced in relation to my periods. I have been having menses for 24 years now, and I guarantee I have not felt this as a symptom of it. I have had a miscarriage, I have delivered, I have had back labor, and invasive diagnostic procedures; this doesn't even feel remotely related to my girlie parts. Yet, there it is. And yesterday, I had it again. Today, too. So if I start bleeding tomorrow, I am pretty damn certain this is a new "thing" for me to track. Take into account that would put this cycle at a mere 19 or 20 days (with an "O" on cd9, mind you) and I'm really screwed up. But we knew that already.
Far be it from me to self-diagnose (insert laugh track here). But, all I can think of is endometriosis. I have read the standard definitions and signs/symptoms, but what I want is a first-hand account of what a real patient feels. Anyone care to share? Do you feel like you are being ripped to shreds from the inside out, and in areas other than your uterus? Does it occur right before your period, or mid-cycle, or is it just pretty much all the time? Does it make your bleeding worse; do you have episodes of no periods at all, or too-frequent and too-heavy cycles? What did your doctor to to diagnose it; labs, tests, procedures, verbal accounts of the misery? Where is the strangest place you've had the tissue grow? I swear on a stack of maxis that this feels like my left kidney or the lower lobe of my left lung.
I guess what I am searching for is an "in" to persuade the office to listen to me. You know how it goes - word something just right so they pick up on subtle clues. I am getting nowhere with my description of back pain. I DID NOT INJURE MY BACK. Sure, I stand all day at my job, but I have done that for 13 years. No, I didn't lift anything. Or bend funny. And if it really was an injury, why the hell would it only occur once a month right before I start my period?
It's like having recurrent, hellish headaches. If you give up trying to be seen via the standard methods, sometimes you have to up the ante a little. Add in vision problems and/or nausea and/or fainting, and *maybe* the doc will take you seriously enough to see you. Is that really all that wrong? I'm not condoning lying just to be seen, and one should never invent serious symptoms, but we've all fibbed a little once or twice. Admit it. If I am just dead wrong and a horrible person for thinking this way, you can tell me so - gently - but I think we've all been there. A little creative complaining can go along way.
posted by Julie at 11:09 AM
9 Comments:
i don't have any medical advice to offer except to say DEMAND TO BE SEEN. pain exists for a reason - to alert us that something is wrong. beg, cry, persist. when they say no, rephrase the question and ask again. make them see you. why should you suffer not only physically but also mentally because someone wants to get out early to go to the putting green (or whatever your doctor does)?
Kidney stones? Gall stones? hmmm...
I'm not a doctor but I play one on tv.
Laura, if I do indeed start my period at such a wacky time, i will be on the phone with them if I don't just show up at the door. This nonsense has got to stop, even if I have to be on the pill for a few months.
Cathy, gall bladder is gone, but I have wondered about the kidney stones - except the cyclic nature of it. Hmmmm. And I thought you just hunted doctors for sport.
Ohhh! Doctor hunting as sport! The wheels are spinning... This could provide me some very entertaining daydreams today. Thank you!
I agree with everyone -- get seen, by any means possible! I've noticed that my cycles have definitely changed since giving birth, but I can't say I've felt anything remotely as bad as what you describe. Put on that camouflage, get out that sharpshooter and bag yourself an MD!
It does sound like it could be endo-related. I've had pain at the same site forever, even after both laps when it was supposedly "cleaned up". They don't understand much about endo (like there are things they DO understand?), and that's the whole nature of it, it causes problems because blood is flowing into places it shouldn't be.
I started googling about this the other night and got waylayed...
Anyway, I hope you pain have improved. From my mum's experience you can get endo in the most bizarre places...I bet you thought that was tennis elbow didn't you?
Also, (and this is what I was having not much success in googling) but I am sure I have heard that hormonal activity can cause various stones to flare up.
In any case, your cycles need sorting out - make a doctor see you. I can't believe they actually decide when and if they see you and not the other way around!
Hiya! I'm Reese and I have monster endo. In answer to your questions, yes, yes, yes, yes and yes.
I've had back pain, lung pain, shortness of breath, fake wannabe heart attacks, kidney pain, you name it. I'm a walking bag of random symptoms, and since no one knows anything about endo, since the time I was diagnosed I usually just shrug my shoulders and chalk it up to that.
I was diagnosed by a family member being a doctor and telling me that my period pain was excessive. How am I supposed to know? It's the only period I've ever had!
My very first symptom was crazy bad back pain that I thought was PMS. I also had a couple extremely early miscarriages and a whole mess of other symptoms that either made me look like a psycho, or an endo sufferer. Maybe both.
I don't think there is anything wrong with embellishing your symptoms to get their attention. A girl's gotta do what a girl's gotta do. Don't let them pat you on the head!
The magic words seem to be PAIN!! (Milk it baby!) And mention the timing and the location (the ovaries are very close to the kidneys, wink wink) Also complain of painful sex (come on, everyone's had their hair pulled a little, right?) and fatigue.
As far as affecting the bleeding (and this is another trigger they look for) it's usually very heavy, with clots, and often brown (old blood).
Doctors have found endo tissue everywhere from the brain, to skin, to every internal organ. So tell those guys to suck your knee and treat you.
If you want strict anecdotal evidence, well I gots that too. My friend Rhenda suffered debilitating back pain, took the muscle relaxers, got the xrays, saw the chiropracter, nothing worked. Until she became my friend and learned of my condition and, what do you know, she had endo. And with surgery her back pain cleared up.
Hope that helps you. At least you now know you're no crazier than the rest of us.
Reese! Thank you so much for your detailed descriptions. You realize you've just fueled my fire. Even if endo is not the problem, at least it is a starting point to get them looking in the right direction.
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I'm going to stop being nice and start being the pain-in-the-ass patient that they will dread. That'll show 'em. This is MY body, awful as it is, and I'm paying them hard-earned money to fix me.
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And, no, everyone else, I have no new news to share. Everybody limbo! (FF is giving me a test date of the 7th. As if.)
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