Hi there, I’m writing for my husband tonight. For three days he has had severe pain across his pelvis. The pain is sporadic but it has increased in intensity. When his pain reached a 10 of 10, I took him to an emergency room. He was diagnosed with diverticulitis. I’m not feeling confident with the diagnosis based on the severity of pain and his history of prostate cancer. Is it unreasonable to get a second opinion from the urologist?
He finished 38 radiation treatments in September to his pelvis region. He had his last Lupron injection in January and he is taking 240 mg of Erleada.
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GJ65
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I would for sure seek out a Urologist just to make sure there’s nothing else going on. Better safe than sorry! My dad dismissed pain he was having for sciatica for three months, turns out he broke his hip.
Thank you. He has never had diverticulitis in the past and based on the location, I am concerned that it could be bone pain r/t metastasis; although, his PSA remains low.
It causes anxiety and does not help treatment if he has unnecessary tests. Your feelings are not a good enough reason to not treat what is obviously diverticulitis. If that doesn't work, more tests can be done.
I had a bout of acute diverticulitis several years ago. It hurt a lot. It is the only time I've had it. And I had no cancer at the time. A liquid diet for a few days calmed it down. My CAT scans these days always note diverticula pockets in the colon. I hope it doesn't act up again. Good luck - Will
Apparently colons can have some thinner areas in the lining that can push out with some pressure and form a pocket(s). If something passing through gets caught in a pocket pain, infection, and worse can happen. Reading these comments reminds me that I was given antibiotics too.
Is he showing any symptoms of infection (night sweats, fever, chills, swelling, redness) in addition to the pain (though diverticulitis can include infectious symptoms as well)? Another option to consider is a post-op/post-radiation infection. 23 years ago my dad has his prostate removed and radiation and has basically been sick since (waxes and wanes). We are finally pretty sure he has had an infection with Actinomyces odontolyticus and Streptococcus anginosus since 2000 (was cultured in his peritoneal fluid in 2020). He had developed fistulas that burrowed from his urethra/bladder to his rectum (doctors blamed radiation damage and though that was a part of it, these bacteria love to make fistulas in radiated and traumatized tissue). Because of the fistula, he had to get a double diversion in 2017 (has urostomy and colostomy now), and during that surgery, the doctor found a fibrotic abscess in the place where his prostate would have been (both bacteria also cause abscesses). Unfortunately, she didn't think to culture it. It takes about a year to kill Actinomyces, and no one has treated him with any course of antibiotics that would touch it. My dad is having a flare again with severe pelvic pain, night sweats, swelling, fever, weakness, etc. I'm hoping the infectious disease doctor finally treats it appropriately.
I wonder how common these abscesses and/or fistulae are. And do they ever occur after simple RP surgery, rather than radiation? I have had intermittent perineal pain, usually mild but sometimes moderately strong, and when it is worse I sometimes feel slightly feverish. No scans done but the best guess has been CPP (chronic pelvic pain) which is not well understood. I am going to try some physical therapy next, but if that doesn't help I should insist on some kind of imaging, I think.
Yes, it can happen after surgery or any other trauma, doesn't have to be just after radiation. Pelvic actinomycosis tends to occur in females who have IUDs but can occur after pelvic surgery or radiation in males. That said, it's been an incredibly long journey being diagnosed. Pain down there alone could be due to nerve damage/scar tissue, but if you show signs of infection (feverish) then there's likely an infection. It's just very hard to convince doctors that's the case. I'd ask for a scan. We obtained a culture of his free peritoneal fluid when he was having an appendectomy in 2020 (I have an MD/PhD and begged the doctor since we didn't get a culture at his 2017 double diversion surgery when the abscess was removed, and he humored me, though he only did an aerobic culture and not additionally anaerobic or fungal so their could be more components at play). These two bacteria completely explain his experience for the last 23 years, the fistulas, the gigantic fibrotic abscess. And it takes about a year of antibiotics (IV (2-6 wks) followed by high dose orals for the rest of the time) to get rid of Actinomyces.
Your dad is very lucky to have such a knowledgeable and persistent daughter!
Thanks for the advice! My peritoneal pain is intermittent and usually pretty mild, so I will give the PT a go for the next month or so. My 49-year-old brother, who has a normal PSA and presumably no PCa, has pretty severe pelvic pain, so it is not impossible that I too have a predisposition to CPP, whatever that "really" is.
I did have pain on defecation for almost six months after my RP, which I attributed to a likely post-surgical anal tear caused by a few days of post-surgery constipation -- though I am not sure about the cause.
I have a PhD in biochemistry myself, and I worked in the pharmaceutical industry for about ten years, trying to discover and develop new antibiotics. So I am pretty sensitive to the possibility of a slow long-term infection. My mother also had severe diverticulitis so I am aware of that possibility as well. If the PT doesn't help, I will definitely ask for imaging!
For what it’s worth.l: I never had any intestinal problems whatsoever until salvage radiation. After I went through IMRT, 72 GY in 40 fractions, I’ve experienced constipation and was diagnosed with diverticulitis at my last colonoscopy. So yes, your husband could be suffering from that.
Diverticulitis can be VERY painful. If he has it, it is critical he get on an antibiotic, or he could get a colon perforation which can go septic very quickly. Please treat as directed, even if seeking other opinions. My husband almost died from diverticulitis and was in the hospital two months.
This happened to my father 7 years ago. After 4 days in the hospital, and going into septic shock, they discovered he had a very large kidney stone - that was at this point, infected.
This was beyond incomprehensible as I had been telling every doctor and nurse that he had a history of stones, ( 11 surgeries for removal!!) and needed to see a urologist or at least be scanned ( his was out of town which the office never told my mom when she called several times each day. Claiming later it was for privacy reasons that they never told us !!!! .)
THIS was at a very known hospital in Royal Oak, Michigan.
The nurses were saying he was not "presenting as having a stone" and ignored me....
A urologist NEVER even came in once, and we kept asking about him seeing one...with them flipping through charts, seeing IF he had actually been seen by one.
Each next person left the room, trying to find out why no urologist had looked at him, or his chart.
And until I got very loud and asked why was everyone talking about his prostate, which had been removed 9 years prior...he finally was scanned, and went into emergency surgery STAT as he was nearly in a coma.
My brother flew in from out of town - thinking we were going to lose him.
When my dad came out of surgery, he looked at my brother and says "hey buddy, I didnt' know you were coming into town!" We all started crying, and then so did my dad when we told him he had nearly died, and was there for 4 days.
The hospital tried to claim that "they never sent in a urologist since my dad already had one that worked for the hospital, and they thought he "signed off" of seeing a different one that was working at the time there" That was obvious total BS.
BE AGGRESSIVE when you think other options should be looked into.
DON'T STOP ASKING QUESTIONS and tell each person what you know about his condition, past, etc...and if you have to go to the desk, or ask for someone in charge....do it. AND KEEP DOING IT.
Sorry for the rant, but this is so scary when you have no control and KNOW something else is wrong....
It is very frustrating when the health professionals do not listen. Sometimes I think they already have a diagnosis in mind, and try to make the symptoms fit. My husband explained the pain as “feeling like a watermelon was trying to push through his penis. It still sounds like a kidney stone to me, but what do I know? He is responding to treatment!
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xo
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