I wrote this article on pelvic pain a while back, and was waiting for the right time to share. Since I missed International Men’s Day this past Saturday, now seemed like the time.
Prudery and Squeamishness are two things I don’t have much patience with.
Okay, I’m squeamish about having things touch my eyes, and snakes still make my skin tingle. I don’t care to look at open, oozing wounds or dismembered bodies. Or most of the photos on Internet ads captioned, “Do this one weird thing to get healthy!” That’s what I would call normal, healthy squeamishness. We should be uncomfortable with things that could be dangerous or harmful.
But being so uncomfortable about the parts of our bodies that go inside our underwear, to the point that we don’t know about or receive the health care we need, is just plain stupid. And it grows not only out of childhood prejudice that boobs and butts, ding dongs and hoohas are “gross,” it grows out of the repressed, anti-sexual prudery brought to us by the Brits who had the biggest influence over our nation’s culture from the beginning, and haven’t let go yet.
Women’s health pundits identified this dangerous prudery a few steps back. You can’t show bare breasts on television, so it’s harder to have open dialogue and share needed information about breast cancer, which kills a lot of women. We don’t want our teenage girls to be able to spell “S-E-X,” so let’s not tell them about the vaccine to prevent HPV, even if it could save their lives.
But it’s not just women who are affected by this prudery, and I think it’s time to say so. As I say it, I’ll give a nod of thanks to the champions of women’s health issues who brought these discussions out into the harsh light of day, because, if they hadn’t, I’d still be in a lot of pain, and might have had parts cut out of my body that didn’t need to go.
But now the focus needs to be shifted slightly, and we need to admit that men, too, are suffering because we find certain topics “icky.” It’s time for us to grow a pair of those things we’re suppose to have in our shorts but we’re not supposed to talk about, and start being honest about health topics that involve our butts and our ding dongs, and all the parts that connect them.
I’ve spent the last two years wrestling with what I’ve been variously told was a sexually transmitted disease, a urinary tract infection, a prostate infection, or a possible mechanical flaw in the construction of my urethra. I’ve taken enough antibiotics to treat the entire Gallagher family on Shameless, and I’ve had cameras run into parts of my body where I can’t imagine even the most dedicated paparazzi would want to go. (It’s called a “cystoscopy.” My urologist called it a “little camera.” The only saving grace was that he didn’t show me the size of the “little camera” before he inserted it. I would have run out into the street without pants, screaming.)
Okay, so there was an infection. E coli, in fact. It got into my prostate and didn’t want to go back out. The prostate is well-shielded, and doesn’t want antibiotics to get into it. So, if an infection sets in, it may just stay. My urologist wanted to do microwave therapy, which literally involves running wires into your junk and burning away parts of your prostate. How do they determine which parts? I didn’t ask. I said, “Let me read up on that.”
While I was researching Trans-Urethral Microwave Therapy (TUMT) and sucking down various antibiotics, a friend who’s into alternative medicine recommended a powder called D-Mannose. It’s basically another kind of sugar. I researched it and discovered two things: NIH has conducted studies on women which show that D-Mannose can force E Coli bacteria to release their nasty little hold on the urinary tract–at least in women–and most of the world seems to believe that only women have urinary tracts, or at least that they’re the only ones whose urinary tracts are subject to the ravages of bacteria like E Coli. The very shy doctor at the urgent care assured me that “Gentlemen almost never get UTIs.” When I went to buy the D-Mannose, I had to ask where it was, and it was in the Women’s Health section.
Either the huge doses of D-Mannose and water I took for the next three weeks worked, or the antibiotics I’d given up on finally got around to killing the E Coli, or both. I went to see my urologist for a follow-up. He ran a lab test, told me I was infection free, felt my prostate and said it was (still) the size it was supposed to be, shook my hand (after removing the glove and letting me put my pants on) and said, “Congratulations.”
Here’s the thing: I was still in pain. The whole point of all the tests I’d had, and all the drugs I took, was to get rid of the pain. It hurt when I peed. It hurt after I peed. It hurt when I didn’t pee, just randomly. And yes, it hurt when other fluids came out the same passage. In fact, it hurt worse, sometimes with pains shooting up to the base of my skull. And, most of the time, I felt like I had a golf ball wedged up into that space where there was no hole and no sack.
I can’t speak for how it is for women, or even other men, really, but for me, the scariest feeling in the world is that my boy parts might be turning against me. I’d had a PSA test, and it was normal. Actually, that was a bit surreal. I was 49 and 50 weeks, and my PSA was 3.03. My urologist said “That’s high for your age. It should be 2.5 or less for a man in his forties.” I pointed out that, in two weeks, I’d be a man in his fifties. “Oh,” he said, “then the threshold of cancer risk will be 3.5. But right now you’re high.” At any rate, no high PSA and no enlarged prostate (confirmed by digital exam several times) meant likely no cancer. But these mystery pains still had me on edge.
I learned that depression and anxiety go hand in hand with the condition I now appeared to have–non-bacterial prostatitis. That diagnosis means your prostate isn’t bigger than it’s supposed to be, and there’s no evidence of infection, but things still hurt, burn and ache. It’s the least common of the four flavors of prostate trouble, and men who suffer from it often suffer for decades.
I don’t give up easy, so I read about every treatment there was for this thing. Trouble was, every article about prostate pain starts with a cutaway drawing of the prostate and where it’s located, every article uses the word “walnut,” every article describes the four types of prostate trouble… and then every article proceeds to tell you what treatments are available to shrink the prostate and restore urine flow.
That wasn’t what I needed to do. My urine was flowing fine. I just needed the damn thing to stop hurting all the time. My sister, who works in health care, said that what I had was an “angry prostate.” That about summed it up. My prostate was pissed and so was I.
Prostate massage is mentioned occasionally, pro and con, as a therapy for prostate pain. There are devices you can use to massage yourself. Various personal accounts on forums said that, for massage to be effective, it needed to express fluid and get the infected or stagnant fluid out. I learned that urologists disagree on prostatitis and its causes. (And here’s some evidence of how much we need to open up a dialogue on this subject–Microsoft Word cannot spell ‘Prostatitis.’ What does that tell you? It knows the word ‘Prostitutes,’ but not ‘Prostatitis.’)
My doctors never mentioned prostate massage. I found an article suggesting an explanation for that. The suggestion was that a doctor doesn’t want to be involved in a sexual encounter with a patient, and doesn’t want to be accused of sexual abuse; so sticking a finger in a patient and manipulating until prostate fluid expelled was not something they tend to want a part of. If that’s true, we’re back to prudery and the “ick” factor, and it’s a damn shame if that’s preventing patients from getting the help they need.
There were lots of pieces of information not discussed by the three doctors I saw about my condition, and most of them strike me as perhaps having been omitted from discussion because they were uncomfortable topics to bring up.
For instance, it wasn’t until I was on my fifth course of antibiotics that I read that the drugs have a better chance of penetrating the prostate if the prostate has to replace fluid shortly after the drugs have entered the blood stream. In other words, a man treating a bacterial infection in his prostate should ejaculate, thus emptying the prostate of some fluid and forcing it to pull more fluid in, about thirty minutes after taking a dose of antibiotics.
My doctors didn’t tell me that, and it would have been useful to know.
Of course, instructing me to do that would sooner or later make us trip over the most dreaded word in the English language. No it’s not the ‘F’ word and it’s not a racial pejorative. It’s ‘masturbation.’ None of my doctors used that word, even when I was being handed a cup and told to ‘produce a sample’ of the fluid from my prostate. It was the first of those samples that confirmed I had an E Coli infection, but we didn’t look at one of those samples until after I had suffered the intrusion of that “little camera” running the entire length of my Johnson, through my prostate and into my bladder. Really? That just seemed backwards to me, and I wonder if asking me to “produce a sample” by masturbating wasn’t considered the lesser evil simply because everyone’s uncomfortable talking about something that a lot of people do every day. Some several times a day.
This was a condition that made my doctors uncomfortable. The shy female doctor who first examined me two years ago assured me, for instance, that men just don’t get UTIs “…except through sexual contact.” Well, I’ve been getting UTIs since I was about 14, and, if they were brought on by sexual contact, then I was having sexual contact I didn’t know I was having. That doctor didn’t really want to have the discussion, I could tell. She just dropped that information and left me feeling that, no matter what I said, she would think I was lying.
But when I pushed a bit, she said, embarrassed, “I hate to ask, but have you been indulging in anal sex?” She was so embarrassed that I didn’t indulge my morbid curiosity enough to ask back, “Giving or receiving?” I just said, “Um… no.”
So here I was 20 months into this illness, congratulated on my recovery, but still suffering. I’d read back a few months before about something called ‘Pelvic Floor Therapy.’ I’d looked online to see if there were any providers of said therapy in my area, and the only one mentioned was a gynecologist. Again, it seemed that what I was dealing with was being shoved into the category of ‘A Woman’s Disorder.’ I’m pretty secure about gender issues, but I guess some residual effects of being teased as a child left me not really wanting to push the boundaries too much and ask for treatment by a doctor who specialized in female patients.
But many months after that abortive research, I stumbled across an article about pelvic pain in one of last year’s issues of Reader’s Digest. It once again had the slant that this was a woman’s issue, even though the opening paragraph said that men get it too. But it described pelvic pain therapy as a growing practice, and explained that the muscles of the pelvic floor, which can become too weak, too tight, or too spastic, can be at the root of all kinds of problems, including erectile dysfunction, incontinence, urinary frequency, urinary pain, pain with orgasm, anorgasmia (meaning you can’t have an orgasm), back pain, hip pain… the list goes on.
Repetition is important. This was the second reference I’d come across about performing physical therapy on the muscles of the pelvic floor, and, though it was geared toward women, it was a very thorough discussion. I wanted to know if this treatment was available in my area. The article gave me a few alternate terms to try in a Google search, and I think it was simply “Pelvic Pain Therapy” that brought me results. There was a physical therapy center near me which specialized in this treatment, and, yes, their website said they’d see male patients.
I knew going in that this was a treatment that a lot of people would be afraid to try. Indeed, when I met with my therapist and explained my symptoms, she said she believed she could help me, but made sure I understood what was going to happen. Physical therapy for pelvic pain involves many techniques, including exercise, massage, electrical stimulation and biofeedback. Some of these techniques can be performed on the external muscles like the thighs, hips, abs and buttocks, but most of them have to be performed internally.
And we’re back to the “ick” factor. Women have two entrances for accessing the pelvic floor muscles, and the front entrance is specifically designed as a two-way passage for putting babies in and getting them back out. Men have one entrance, and a lot of us are downright phobic in our belief that it’s an exit only. (And that’s not a heterosexist POV, either. I’ve talked to gay and bisexual men who are just as phobic.)
So, to take this therapy, a man has to be prepared to have a finger inserted in his anus to perform, not the quick feel of the prostate we’re begrudgingly accustomed to, but sustained probing and pressure. The point is to find muscles that hurt when they’re touched. Once these painful trigger points are found, the procedure is to push on them until they relax–for as much as two minutes per trigger point. There are quite a few muscle clusters which pass through the pelvis and are accessible rectally or vaginally. If they’re all giving you trouble, that finger is going to be in there for a while.
I had two particular trigger points. My therapist told me the long, latin names for them. I don’t recall those, and I don’t know what the second point was. I do know that the real trouble-maker was my hip flexor. Who knew you could get to it from there? I certainly didn’t. I injured my hip when I was 16, and it’s ached on an off throughout the three plus decades since. It had really been crying for help these past few months, and its twin was starting to talk about forming a collective bargaining unit with it. When my therapist touched that trigger point and I told her it really hurt, she worked on it until it relaxed. My right hip is still stiff sometimes, but that ongoing pain of 2015 left with the New Year and has made only occasional homecoming visits since.
Electrical stimulation and biofeedback, which allow you to actually see how tense your pelvic muscles are on a line graph, are performed via an inserted sensor. It’s about the size of my thumb (don’t worry, I have stupid-tiny, little hands) and, yeah, it’s a bit uncomfortable to have it in there for 45 minutes. Pretty quickly, you learn to put it in place and remove it yourself, so that eliminates some of the embarrassment. (Although the irony of them having to take the laptop to the office IT guy because it wouldn’t talk to the PS2 cable coming out of my ass was not lost on this particular IT professional. I told my therapist that I thought I’d require all my users to insert such a probe in the future before I would allow them to file a helpdesk ticket.)
There are also massage techniques you can learn yourself, so that, when those muscles tense, which you’ll also learn to notice, you can ease the pain. Yes, it’s indecorous–icky, if you like–to talk about putting your fingers or any device into your own anus; but would you rather be in pain all the time?
After about eight weeks, my therapist told me that the levels showing in biofeedback were excellent. I don’t know the units used, but I know that, on the scale she uses to measure muscular tension, a good at-rest level for the muscles is 3 or less. When I started seeing her, my at-rest levels were about 20. That week, they were below 5, and no sort of stimulation caused them to go higher. So I got to take a two-week break from our twice-weekly sessions. That was a major victory. About two weeks later, she told me I had “graduated,” and could manage my pain myself.
I still have occasional, very minor pain, but I know techniques to make it stop. Better, my therapist’s combination of practical treatment and education have left me completely confident that my pain is muscle pain, not incipient cancer and not the growth of my prostate with age. The cause is probably stress, and God knows I’ve had a steady diet of that over the past few years, especially the years between 2009 and 2015. My co-workers all understand why I say that.
My therapist also weighed in on how squeamishness and prudery are keeping people from getting help. One of the reasons there aren’t many providers for this kind of therapy, she says, is simple economics. It’s expensive to be trained in these techniques, and it’s a kind of therapy that doesn’t allow you to treat multiple patients at once, reducing potential income. But she also cited as a reason for the scarcity of pelvic pain specialists is that it involves touching people’s private areas. No one wants to be accused of abuse or sued, so a lot of people stay away. Male therapists particularly are reluctant to perform this service on women, and, in our still-homophobic culture, even more reluctant to perform it on men. Many female therapists won’t see male patients simply because it’s outside their comfort zone.
And there you have it. We’re a diseased culture, and our mentally diseased attitudes are allowing physical disease to proliferate.
But, if you are suffering from this maddening kind of pain, know that there is help. Get over your prudery and squeamishness, push your way past the prudery and squeamishness of others, and get that help.
This is important for men and women to know; but, since women seem to be getting slightly more encouragement than their brethren, let me speak for a moment just to men:
Dude, your boy parts are not turning on you. So don’t let them hang there in pain.
I just ran across this post of yours, and Steven, I think you should submit this to a publication such as “Men’s Health” or perhaps “Prevention”, or even “Esquire”– anywhere that has a largish male reading audience on the subject of health! I’m serious about this. Bad info, lack of proposed alternatives, and lack of discussion are problems for both men and women–and both male and female physicians! I may be female, but I can tell you I’ve often had more problems with female doctors whose *point of view* was more important to them than my own damn health, than I ever had with male doctors–and I know women who have felt compelled to stick with incompetent female physicians because they felt they’d somehow be betraying women if they saw a male gynecologist who might be more competent. You’ve experienced a female physician giving you bad information and male physicians giving you too little information, and all of them unwilling to propose treatment that could have helped you because they didn’t know, didn’t research, found reasons to avoid it, or otherwise couldn’t be bothered. Chronic pelvic pain is a problem that afflicts many people and your story could help those who are suffering in silence and getting bad or no advice. I urge you to circulate this story more widely beyond your blog!