It's a good thing that I called the pain doctor on Tuesday to verify my appointment time for Wednesday. He had called me a few weeks prior to follow up the first appointment one day while I was in the car, so it was possible that I might have erred somewhere along the line . I was all but certain that we had scheduled the next appointment for June 22: certain of the date but uncertain of the time because my G-calendar got a little muddled because I am who I am.
They didn't even have me listed, but the nurse said that he does that sometimes – forgets to record an appointment that he makes. I guess we're kindred spirits, the doc and I. He affirmed that he wanted to see me regardless. So, Sue and I hit the road at 9 o'clock yesterday for the Perth hospital where he is stationed. I was done and exiting the hospital not long after 10.
I had waited to be referred to this doctor for two years because the pain in my testicular area had yet to be pinned down and dealt with. When surgery for an inguinal hernia didn't help, my first urologist did an ultrasound followed by a CT scan. He found no apparent cause!
He then referred my case to this pain doctor. That was in 2020 just as COVID was smacking the world as we knew it into confusion. Things got complicated and backed up, and I didn't get in until two years later, just last month,.
Meanwhile, urologist #1 retired. He could never find the cause of my problem, but he had referred me to the pain doctor for what he thought it might possibly be. Before I got to Pain Guy, however, I had finally gotten in to see the replacement urologist: urologist #2. She diagnosed a neurological cause and prescribed nerve meds. You might recall that those were the pills that caused me to smell non-existent gasoline. They also didn't help to mitigate the pain. She prescribed another medication before she too moved on. Sigh.
Pain Guy had me begin the new pills that urologist #2 had prescribed before she departed. I took them for a month before yesterday's second appointment. He proceeded to take me off the meds because they were accomplishing nothing while possibly negatively affecting my sleep. I now have a new prescription that won't attempt to alleviate the condition but will, hopefully, dull the pain when it occurs.
He opines that there is a rather small and deep spot that is causing the problem. Surgery doesn't seem to be an option and, if attempted, would run the danger of causing even more other problems.
So, that's the result from seeing the pain doctor, who like my urologists seems to be at a loss except to hope that the new pain meds help to get me through the tough times. He is concerned enough to follow up by phone in a week or so. If he forgets, as he seems prone to do, I am to call him in two weeks.
I won't see my third and and newest urologist until late autumn, so I will have quite a lot of time to see if the pain meds help before I consult yet another doctor.
Fortunately, over the years, I have found a position that usually minimizes the discomfort while I sleep, except on nights when I get to much tossing and turning. As long as I don't walk much, I can also keep the pain at an acceptable level during the day. It's walking that tends to cause the pain to flare up, but maybe the newest meds will help.
I can't tell you how miserable it is to feel pain in that particular region of the body when all I want to do is just go for a little walk. On a scale of 1 to 10, it's not all that bad at any one moment, but it is both chronic and extremely uncomfortable and dispiriting to experience discomfort in that particular area.
How frustrating that must be!
ReplyDeletePain IS very waring on all parts of the body & certainly on the mind. Hopefully when you get to see the 3rd urologist it will be the beginning of a longer relationship & one that can get to the root of the problem, if only to improve the quality of your sleep.
ReplyDeleteYes, that's discouraging. I hope the latest meds help.
ReplyDeleteI echo what other said, wishing you relief and eventual solving of the problem. So sorry you have had to deal with that pain.
ReplyDeleteMedical care around here just blows my mknd. I have been waiting almost two years for an appointment with a pain clinic in Ottawa. Apparently no on in my health care centre knows about this one in Perth since I was not given this option. Lovely! I hope you got some help, at least. Unreferable pain is the most debilitating. Hmm. Spell check Nanny does not like unreferable, even with another r .
ReplyDeleteHave you consider acupuncture? Or other alternative medicine routes?
ReplyDeleteThat's so frustrating--to want to be active and do things only to have your body and the pain hold you back. I hadn't thought about the medication interfering with your sleep. I hope that by not taking it you'll sleep better!
ReplyDeleteAC:
ReplyDeleteI can only hope that the source of your pain is eventually determined, and that it is both treatable and not problematic in other ways.
Testicular pain can be very challenging. If the nerve pain diagnosis is accurate, I am hopeful that the new medicine may be helpful. To me, the more significant diagnostic (which I presume your clinician asked) was whether the pain was diffuse or if it was sharp and focused when it occurred.
In my thoughts regarding physiology, if the pain is more diffuse, it would potentially be a result of some sort of damage/decline in the cremaster muscle which regulates the positioning of the scrotal sac for testicular temperature regulation. If the muscle (or its neurmuscular junction was damaged somehow, this could result in a more diffuse pain, but not be easily detectable by usual means.
If the pain is more acute and sharp, it makes me wonder if you may have experienced a partial testicular torsional event that could have impinged the nerve cluster to that region a bit and the damage to the nerve may be causing the discomfort even if the torsional event was brief and resolved. This too would not readily show up on most traditional tests.
The above two seem potential causes, but of course, internal pains of various sorts without a diagnostic aberration that can be identified.... are the bane of much of clinical practice and could be from a lot of different causes.
By chance have you tried lower back and leg stretches? They are always a valuable exercise to do to stay limber and mobile. But, they can often help in decreasing a variety of nerve and muscular pains in the lower torso region because of our unfortunate bipedal body posture.
PipeTobacco
I am so sorry for all this. Pain is awful to manage and we've been through that.
ReplyDeleteWe were offered radiation for JB's prostate cancer and declined. As you say, it could worsen his quality of life.
You were so close to us in Perth! next we've a scan of some sort. No call yet.
(ツ) from Cottage Country , ON, Canada!
What a runaround you have had. Hopefully the new meds help a bit.
ReplyDeletehow miserable! indeed . some thin similar her but in the ne turning my head Sorry to say your spot sounds much worse. I'm try to get aback into blogging after the passing of my beloved just when the corvid hit,she from Alzheimer.
ReplyDeleteThat sounds like misery, AC. I hope you eventually find someone who can help.
ReplyDeleteI'm so very sorry.
ReplyDeleteYikes. This sounds awful. Hopefully this gets solved soon.
ReplyDeleteWhat a bummer! I'd go to Pipe Tobacco's doc! You're almost down to ice packs or standing on your head to search for relief. Hope you can keep hacking through the medical system to get to the correct Wizard / Doctor. Linda in Kansas
ReplyDeleteOuch. Double ouch.
ReplyDeleteChronic pain is awful. How well I know.
ReplyDeleteI do hope you get some relief one way or the other. Stretches always helps my lower back pain, even when I think it can't possibly. I read PipeTobacco's comment with much interest.
ReplyDeletePain is so frustrating. And so limiting. I think the limitations are the worst -- that gets into your head and then it's depressing AND hurts. I hope these new meds will help ease the sleep issues AND the pain. I send all good wishes. Difficult diagnoses seem to take forever to straighten out.
ReplyDeleteI'm just wondering about the source of your pain being described as a "small and deep spot." Sheesh. Spot of what!!?? There are lots of things that can be described as a spot. That is the vaguest thing I have ever heard. Do you ever take someone with you to take notes and ask questions you haven't thought of? It can be very useful in a doctor appointments. Not all of them are the best communicators, and when it's YOUR body, you are not at your best either.
ReplyDelete