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Blood in urine following sexual activity
I had a TURB on 4/13 to remove a papillary tumor and flat cell transitional cell carcinoma IS. Then, 6 BCG treatments to follow up and treat the transitional cell noninvasive carcinoma in situ.
Four days after the third treatment, I experienced a lot of bleeding and passed many very large clots over a twelve hour period — very scary :P, but that hasn’t recurred, although I still see an occasional smal clot here and there.
Like most of you, the irritation and discomfort increased dramatically as I reached the fourth instillation, and still remains about the same nearly four weeks after the 6th treatment. Also a lot of pain and cramping in the urethra.
Lately I’ve noticed a little blood in my urine immediately following sexual activity or even just an erection. Is the bleeding elevated/aggravated by this activity or could it perhaps indicate problems in the urethra caused by all the cath infusions, cytoscopies (I’ve had several)? :-
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66 Replies
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Wendy,
Thanks for the response and I will post any answers from my Dr. later.
I did not see this on the “show unread posts…” link.David
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Dear David,
I don’t have any answers but I want to thank you for asking this question. I’m sure many people will benefit from knowing about the possible problem, and hopefully can share experiences. Please keep us posted on the answer you get from your doctor.
All the best,
Wendy -
I realize that this is a very old thread, but I have new information which directly relates to the original topic.
As I related in a separate topic, I had a TURBT back on 11/30 where the doc also removed some prostate tissue which was encroaching in the trigone bladder neck area where he was working on removal of some papillary and CIS tumors. I have since read that any prostate work will cause bleeding and tissue sloughing over a period of two months or more in some cases.
This past weekend I used Viagra as an aid to facilitating some long postponed sexual activity. It worked reasonably well (1/2 pill dosage) but after sexual activity I had an extremely bloody urination with what appeared to be several medium size clots or perhaps bits of tissue.
Has anyone else experienced something like this? I’m due to have a cysto this afternoon so will ask my Urologist. Hope it’s just related to the TURBT or the prostate work and not more CIS!
DDoyle
Age 64
3 TURBT
recurrences of papillary & CIS
(all non-invasive) -
Dave,
Thanks for checking in. Try not to get spooked yet. Let’s hope he can get a more definitive determination on the 31st.
Fingers crossed.
Rosemary
Rosemary
Age – 55
T1 G3 – Tumor free 2 yrs 3 months
Dx January 2006
Rosemary & All:
I had a cysto today. Still a lot of edema – very painful :P
The Uro did take more time to talk to me today for which I was thankful but he seems very apprehensive about my chronic inflammation. He’s worried the CIS is still there even though the cyto came back negative. He keeps talking about RC — he’s starting to spook me :-
I go back on 8/31 for a quick exam, followed by another TURB.
Fingers crossed and many prayers.
David
That’s great news, David!
Rosemary
Rosemary
Age – 55
T1 G3 – Tumor free 2 yrs 3 months
Dx January 2006
Good news!!
The cytology results from 7/27 showed no malignant cells, just a lot of inflamation (from the BCG).
Will have a cysto on 8/10 but expect no surprises.
So far, so good!
DDoyle
Warren & all who have followed this:
I did go to my URO yesterday afternoon and left a specimen for a cytology. I had learned earlier in the day that the sample I had left last week did not show any infection from the culture they sent to the lab. I had been taking the celebrex for over a week and thought it had stopped the bleeding if not the pain (still considerable pain in the urethra during voiding — probably from the edema), but the sample yesterday was “golden/orange” with a small clot so the bleeding’s still there, just not so pronounced. Don’t know if it’s from the edema or what. I asked the URO’s nurse what she thought and she ventured that it could perhaps be caused by a “recurrance”. She also said they don’t generally do a cytology untill 6 months after surgery (it’s been 4 months and a week in my case) .
It will take a week and a half to get results. Amazing. Houston is the 4th largest city and they send their work to a small lab in San Antonio. Welcome to managed health care, I guess.
I still have an appointment on Aug 10, hopefully for a cystoscopy, provided that the edema has subsided enough for a successfull examination.
Just wanted to report that I did finally take action, just don’t have any answers yet.
I do appreciate your feedback since this is all new and frightening to me since I have read some of the consequences of waiting. From all I have read, the CIS which I had (and may still have) can and does recurr and is very persistent and fast-growing.
David
Warren,
Thanks for the info. I will probably just wait until Aug 10 when hopefully I will be clear enough for a good cysto. The Celebrex seems to have stopped the bleeding but there’s still some pain in the urethra when I go. No stricture, though. Probably still some inflammation & edema.
David
[quote author=ddoyle link=topic=1032.msg6848#msg6848 date=1185236460]
I’m a little aggravated that my Dr. did not see fit to order a Urine Cyto (just a routine culture) when I went in for my cysto last Thurs 7/19 — then he flew off to Tanzania until 8/10. Most likely the results will be negative but no way of knowing whether there are cancer cells. Oh, well :-
[/quote]
Dear David,
Any physician can order a cytology. Ask your family physician if he would send one to his lab. You don’t need to wait until August 10 for your urologist if you’re anxious for an answer. The test can be done on a voided urine, i.e., you just pee in a cup. It doesn’t have to be collected at a cystoscopy.
-Warren
TaG3 + CIS 12/2000. TURB + Mitomycin C (No BCG)
Urethral stricture, urethroplasty 10/2009
CIS 11/2010 treated with BCG. CIS 5/2012 treated with BCG/interferon
T1G3 1/2013. Radical Cystectomy 3/5/2013, No invasive cancer. CIS in right ureter.
Incontinent. AUS implant 2/2014. AUS explant 5/2014
Pediatrician
Wendy,
No problem, if I hang in there on this forum I’ll be an expert some day if I read all the posts and links.
It’s comforting to know that I probably don’t have BCG infection but I most certainly am among the 30% who have experienced a strong reaction. Good news is that the Celebrex does seem to be gradually alleviating SOME of the pain and ALL the bleeding (as of right now).
I’m a little aggravated that my Dr. did not see fit to order a Urine Cyto (just a routine culture) when I went in for my cysto last Thurs 7/19 — then he flew off to Tanzania until 8/10. Most likely the results will be negative but no way of knowing whether there are cancer cells. Oh, well :-
Thanks for all you do to help us keep better informed ;)
David
TURB 4/13/07
TA, CIS
BCG 6X
David,
I’m sorry for quoting too much information…please forgive me. Lamm will tell you that it’s something like one in a million cases that end up like that because even sepsis is treatable. But because the threat exists it has to be stated, I would think, as with any treatment when you consent to it. But don’t worry too much, from the sound of everything you do not have BCG infection.
All the best,
Wendy
Wendy,
Thank you for the helpful information. My Dr. has already mentioned INH therapy in case the anti-inflammatory drug (Celebrex) fails to alleviate the bullous edema around the bladder neck. I have been taking the Celebrex since Thursday evening and the pain and bleeding appear to have subsided quite a bit but there is still a bit of pain when I urinate. I have an appointment on the 10th of August, by which time things will have cleared up sufficiently for a clear cysto to see about any remaining CIS.
I have to admit, much of the info is beyond my comprehension — and some is frightening (fatal consequences of BCG sepsis)
David
[quote author=ddoyle link=topic=1032.msg6747#msg6747 date=1184889228]
He did mention the possibility of maybe having to treat the BCG reaction with something called INH?? — A med for fighting TB, I think.
Of course, behind it all one worries that the CIS may be the real culprit. ???
David
[/quote]Dear David,
I’m sorry to read about your problems and hope the bleeding and pain is better now, and that the antibiotics will fix things.
Dr. Lamm, an expert on BCG for 30+years, says that when there is a suspicion of BCG in the bloodstream causing infection, the anti-TB med isoniazid should be used as a prophylactic because it’s too dangerous to wait. I friend of mine had this infection and was extremely ill, in the hospital with high fever and chills…in other words I think if you had the infection you would have known it by now.
I’m afraid you might be one of those who cannot tolerate BCG. Another option is low dose BCG+Interferon. It’s supposedly less toxic to the bladder.
Experts agree that when irritative symptoms are present BCG should be delayed.
From Lamm’s protocol on webcafe:
Treatment of BCG Side Effects and ComplicationsBy lowering the dose of BCG to 1/3, 1/10/, 1/30, or 1/100th as needed to avoid increased irritative or systemic symptoms, very few patients have any difficulty with BCG immunotherapy. If irritative symptoms persist beyond three days, fail to respond to symptomatic treatment, or are severe isoniazid 300mg a day can be given. If patients respond promptly, I generally stop treatment after only one or two weeks. In patients who have true BCG infection requiring antituberculous antibiotics, for example symptomatic prostatitis, epididymitis, or hepatitis, isoniazid plus rifampin 600mg daily should be given for 3-6 months. With serious infections triple antibiotic therapy may be needed, and ethambutol 1200mg daily or a fluoroquinolone may be added. BCG is relatively resistant to cycloserine and pyrazinamide.
BCG sepsis can be fatal, and prompt and effective treatment is necessary. Since cultures are often negative, treatment must be given empirically. Patients require coverage for gram negative sepsis as well until blood cultures are negative. With sepsis the current treatment of choice is no longer cycloserine, but isoniazid, rifampin, and prednisone 40mg daily. Caution must be taken to taper the prednisone slowly because hypotension may return when prednisone is stopped. Occasionally higher doses of prednisone are required. Though a major component of this reaction is hypersensitivity, prednisone alone without isoniazid and rifampin should not be given. In our animal model, prednisone alone increased mortality, but prednisone plus antibiotics markedly improved survival when compared with antibiotics alone. ”
http://blcwebcafe.org/drlammsprotocol.asp
And for more on BCG and the BCG+IFN option:
http://blcwebcafe.org/bcg.asp
http://blcwebcafe.org/interferon.aspAll the best,
Wendy
[quote author=ddoyle link=topic=1032.msg6799#msg6799 date=1185037619]
I was doing some online research into the Bullous Edema+BCG and there is quite a bit of potentially confusing info out there, mostly well beyond my non-medical comprehension. Terms like “Tuberculous Cystitis” and other topics. The INH remedy did turn up some but results appear to be mixed. In all, somewhat confusing. I guess I’ll just have to wait and see.
Meanwhile, still some blood in the urine…[/quote]
Hey David,
BCG is a bacterium which is closely related to TB. It is used as an immunization against TB in many countries, but not in the USA. Its use for other medical treatments to some extent depends on its stimulation of the immune system when the body reacts to it. The term tuberculous cystitis suggests that the bladder has actually become infected with the organism. Bacteria are free living organisms. We have bacteria on our skin, in our intestinal and respiratory tracts, etc. which are just living there without causing infection. When bacteria invade tissue rather than living on the surface, then it is an infection. Cystitis actually means inflammation of the bladder rather than infection, but the use of an antituberculous drug suggests a need to help the body get rid of the organism. Very often infection is assumed to be the cause of inflammation and is treated as such, but inflammation is not always caused by infection. If your bladder is badly inflamed by the reaction to BCG, but the organism has not caused an infection, when you urinate after the treatment, you get rid of the BCG so the INH would not be likely to help.
-Warren
TaG3 + CIS 12/2000. TURB + Mitomycin C (No BCG)
Urethral stricture, urethroplasty 10/2009
CIS 11/2010 treated with BCG. CIS 5/2012 treated with BCG/interferon
T1G3 1/2013. Radical Cystectomy 3/5/2013, No invasive cancer. CIS in right ureter.
Incontinent. AUS implant 2/2014. AUS explant 5/2014
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