These are the words that a gastroenterologist (one in a long succession of gastro docs) almost spat at me a number of years ago. Apparently, even though I was under a pain management physician’s care and was taking my medications as prescribed, it was her position that I was wasting her valuable time which should be spent with patients who had problems not of their own making.
I was apparently undeserving of her assistance with the internal pain that the drugs I was receiving did not address and, yes, could potentially be adding to the problem. But somehow in her eyes (and most assuredly in her tone) it seemed to be some kind of personal deficiency in me that was the root cause for my pain.
So after that awesome experience (and too many not-so-great previous outcomes with gastro docs) I just stopped “expecting” that I would ever find any help with this ever present pain in my lower right side. It ranges from manageable discomfort to searing pain… but it’s always there.
Lurking.
I wrote awhile back about how by the time I was seventeen I had decided not to have children. In that post, I also wrote about my notion that maybe that decision had backfired on me through some kind of somatic rejection of every female organ in my body. I don’t mean to be going into a TMI kind of thing so if the few gentlemen in this circle would prefer to pass I completely understand.
But if any of you are interested, it really IS pretty astonishing when you assemble all of the carnage of “female problems” that rendered useless each and every one of my “lady parts.” Not only that, but I actually learned a new fun fact about the one of them today.
Along with fibroid tumors (which many of us women have so it’s just a matter of how big, how many, and where they are located), I had a few other things going on as well.
I had something called polycystic ovaries which, over time, had created a hard shell around them both. That meant that every month when my female body was just doing it’s thing trying to release an egg like it was supposed to, that egg had to fight it’s way through the almost impenetrable barrier that all of those cysts had created throughout the years.
The intense pain of it trying to get through would usually last about a week or so. But then when that utterly useless egg finally DID burst it’s way through… the pain felt like I was being stabbed from the inside out and it was downright unbearable. Typically, when the waiting was over for it to burst it’s way through… that sudden, stabbing pain was so intense that I would double over in nothing short of agony. And even though I knew it was coming, it would be so sudden and so excruciating that I ended up falling flat on the floor on more than one occasion.
I also had endometriosis which is pretty invasive stuff. I’ll get into that later… but basically not only does that stuff cover your lady parts with some pretty mean cells, it was all over my insides. Here’s what one page says about it: “endometrial cell growth can extend and damage the function of other organs—such as the bladder, intestines, and appendix, and even (cause) permanent infertility. Surgery is usually the only effective treatment to stop growth and correct the organ damage.”
Pretty on the mark since I finally had a total hysterectomy at age thirty. I write “finally” because I’d lived with so much pain for so many years that although the post-op pain on the day after that surgery was bad… it was less bad than the pain I had the day before the surgery and at least I was getting morphine for it.
But then I found out something new was amiss after the surgery. Basically my uterus had morphed into somewhat of a foreign object… one completely without purpose other than to bring me to another level of pain. The condition is something called “bicornuate” which they probably wouldn’t have even known about unless I had been trying fertility treatment or until the doctor actually removed it.
In general that means that the uterus is heart shaped. In the specific, for me that meant that there were actually two separate chambers within my uterus… which only provided a lot more surface area for the endometriosis to attack and up the ante on my pain level. Seriously? Of all things, a heart shaped object is the last thing that would come to my mind to compare that anomalous organ to.
And just as a refresher, I looked it up just now and discovered something that I wasn’t even aware of 37 years ago when they took the damned thing out… that whole bicornuate thing?
Mind. Blown.
Something that I did NOT know at the time – but which makes perfect sense to me now – is that the whole deal with my own disfunctional uterus went down while I was in my mother’s womb during something called “embryogenesis.” Given so much of my early history… that which I can recall along with always having the knowledge that I was a mistake… as I’ve mentioned previously, I long ago came to believe that I was conceived in rape. In 1959 it wasn’t called rape if it was a husband who violated a woman. But I doubt that was much comfort to my mother and I’m certain that it wasn’t an isolated incident.
So I wasn’t surprised to discover that it was specifically in the moments of my actual conception – in “the process by which the embryo forms and develops” – that my ability to have a child went south. And the article goes further to distinguish that this “process” happens prior to fetal development. Reading these words today felt like some bizarre kind of… validation?
This information not only reinforces my thoughts on how I was conceived, but also the very real possibility that, as I wrote about in an earlier post, I believe that my very early and very intense fear of having a daughter who would meet the same fate as I did (and I’m pretty sure my mother did as well) was the beginning of the end for anything about me that was organically female.
So back to the endometriosis I mentioned earlier… which probably caused the worst overall damage. You see, all of my insides were pretty much covered with those “endo” cells. And even though I thought I would finally find relief from so much pain for so many years when they finally did that surgery to take out all of those defective parts that started all the way back during my erroneous conception…
those endo cells really did a number on my entire pelvic cavity.
And on top of that, given the many laparoscopic procedures prior to the final removal of all of those broken parts of me… I ended up with scar tissue upon scar tissue upon scar tissue from both the endo and the multiple surgeries. They call this kind of internal scar tissue adhesions.
As I understand it, some women (and men too I suppose) are more prone to the formation of adhesions. And some of us are also more likely to have problems with them than others. I really don’t mean to be overly dramatic, but in my case I suppose it’s not all that surprising to discover a predisposition to an internal kind of “scar tissue” given all of the “scar tissue” that was being created in the chaotic world I would come to know as my life.
Every wound we encounter leaves a scar… a hot, permanent brand of one image or another. And the damage those wounds bring about can be to our physical bodies or to our spirit… and in my experience, sometimes even both. But many of those scars can’t be seen and, in some cases, I think we both adapt as well as become adept at hiding those scars… both from ourselves and even from that tiny circle of people with whom we establish just enough of a trust level to allow them into our pockmarked lives.
“What do you expect?!!”
So finally to get back to the initial topic of this episode of emotional vomit…. Those adhesions – that scar tissue that is left over from all of that disfunction – are all over my insides and have even attached themselves to two of the nerves in my lower right side. In my case, those two nerves are called the illeolingual and the genitofemoral and they are so tangled up with all of that scar tissue that it has caused a situation that is referred as them now being “entrapped” within all of those adhesions. Those nerves are so encased in scar tissue that not only do I have an enormous amount of pain in my lower right side, those same nerves also send some twisted signals down the inside of my leg… into the arch of my foot… and all the way into my toes.
In recent years, the pain management doctor finally DID find a way to be helpful with the “going down into the foot” problems by giving me nerve blocks in my side. They don’t do much of anything for my side, but they definitely give me some relief with the radiating pain and numbness.
In order to do a nerve block, it means that the doctor has to inject a needle directly into each nerve. And even though he sprays something topical to sort of numb the area, I am wide awake every… single… time and it is excruciating to say the least. But knowing that the pain of the injections don’t last all that long (although they seem to last a reeeealllly loooonnng time) and knowing that it will at least help with a big part of the problem, I’m a VERY willing participant.
Part of the reason that I’m going into all of this detail about the nerve blocks is less about whining and more about trying to explain that when he goes to stick that needle into those nerves? That thick band of scar tissue across my lower right side is so deep and so taught as to be pretty close to impenetrable. It actually takes a great deal of effort on his part to push that needle through to get into each nerve. It literally feels like (maybe to both of us) he has to actually STAB me… twice. And then he has to repeatedly continue stabbing me once that needle pierces my abdomen in order to get through all of those adhesions to get that medication into those entrapped nerves.
So even though I’ve finally found some help with my leg and my foot, not a single doctor has ever been able (or possibly willing?) to address the often debilitating pelvic pain. And even though that doctor was an outright bitch to spit those hateful words at me, at least I can respect the fact that she actually SAID what every other gastro doc had always seemed to be conveying to me.
I mean, yeah, it hurt like hell to be treated that way. But there had always been something I couldn’t quite put my finger on when I was dealing with the other doctors’ attitudes toward me. I was asking for their help with a kind of pain that stemmed from an intestinal issue… but all they saw was an opiate in my chart.
And now that I’m off of the fentanyl patches (63 days!) I’m experiencing more and more of the various pains that I’d forgotten about when my body first began to fail me. Don’t get me wrong, I wouldn’t got back on that roller coaster for a second! But it’s not as if the things that were broken in my body were suddenly healed the day I took off that last pain-relieving patch.
So “what do (I) expect” now? After that little incident I have actually stopped “expecting” any relief for this extraordinarily painful (and extremely personal) problem I have carried for so many years.
But today… when I talked to my family doctor about gathering up the courage to face yet another gastro doc? At least I knew that they won’t EVER be able to spit the words “you’re an addict” at me ever again.
And maybe… just maybe… they’ll actually want to help me find out how to fix ALL of the problems that this particular batch of scar tissue has been causing me for so many pain filled years.
Don’t look now, but I think it’s quite possible that what I’m feeling just might be bordering on hope.
MLMB…
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