First Post - Hematospermia

[cpps2020]

Thanks in advance to everyone who participates in this forum. It is a lifesaver for those of us dealing with CPPS. I am 52 y.o. with no prostate issues until last year.

My story began in April, 2018 when I had a single episode of hematospermia (blood in the semen). From what I read online, this was likely spurious and not indicative of anything serious. I had a negative urinalysis and low PSA at that time (2.5) so I took a wait-and-see approach. Over the rest of 2018 I had 2 or 3 similar episodes, and in January I saw a urologist who diagnosed prostatitis (based on this symptom alone) and prescribed 3 weeks of antibiotics. By this time I was feeling sore in my groin and the blood was more frequent, so I took the antibiotics and felt much better. The blood also resolved.

This happy state of affairs didn't last long. About a week after completing the antibiotics, the blood returned and my urologist told me I should continue the antibiotics for another 3 weeks. I filled the prescription but was unhappy he would not order an imaging study to rule out anything more serious (my brother had prostate cancer in his 40's), so before starting it I saw another urologist who told me he did not think there was any infection and sent me to get an MRI. This showed only some inflammation consistent with prostatitis.

In the meantime the soreness and blood were getting worse, and given how much the first course had helped (and my type A personality which was making me anxious to do "something"), I started taking the antibiotics again. My 2nd urologist was OK with this decision (although in hindsight he was right to recommend against it), and said if I was going to do another course I should write off the 1st course and take the antibiotic for 6 weeks. Again, all the symptoms cleared up within a couple weeks but came back soon after I completed the course.

By this time, I had read about the anti-inflammatory effects of antibiotics and concluded that I did not have an infection. I asked my urologist what I should do if things got worse and he said I could try NSAIDs for flare ups and acupuncture, but that things would probably improve over time.

Suffice it to say, things are not really improving. I carry a folding gel cushion wherever I go because sitting on anything makes me sore, particularly soft cushions that press on the perineum. I tried acupuncture a couple times which made me feel exhausted and triggered some inner ear issues, so I discontinued that. I take any accredited quercetin product twice a day and Advil now and then for the pain, which gets to about 4/10. The worst part is that erections and ejaculation are painful.

After reading on this forum about stretching and self pelvic massage, I bought a wand and tried it last weekend very gently after some stretching as described in "A Headache In the Pelvis." A bit shockingly, my next ejaculation was completely bloody unlike anything I had experienced before. I assumed either the stretching or the wand must have broken some capillaries in my prostate. My urine was clear (so it does not seem like the bleeding was continuous) and I also didn't notice any particular increase in pain afterwards. At this point I am continuing to stretch every day, and once my semen clears up I will look for a physical therapist who specializes in CPPS. I am in Westchester, NY and Hudson Valley PT seems like a possible resource--wondering if anyone has any experience with them.

I am heartened by the success stories here, but feel like I have a long road ahead of me. Any advice would be very appreciated. I am particularly curious if bleeding has been a prominent symptom for anyone.

[webslave]

Bleeding absent cancer is not significant, as you have established. Pressing on the prostate directly could exacerbate the bleeding because there is probably a 'weak spot' in a capillary in there. Inflammation from the CPPS has caused that weak spot to manifest in bleeding. The pain and reaction to antibiotics makes a CPPS diagnosis very likely, so I agree with your uros.

Your uros won't be much help to you from this point on, in all likelihood.

Try to see Marilyn Freedman in NY
http://www.essentialphysicaltherapy.com/

[cpps2020]

I checked out the DCT site briefly and it is interesting how McCoid says that pelvic relaxation is not as important as lengthening and strengthening. He also seems to focus on strengthening the muscles around the pelvis, saying that the pelvic floor issues are a reaction to a problem outside the pelvis. NeoKortex88, do you know if his approach is at odds with or complementary to pelvic floor trigger point release?

At this point, I am up for trying anything. I'll get in touch with Dr. Freedman and schedule an appointment. It's about a 3-hour round trip but she has a lot of recommendations here which counts for a lot. It might also be interesting to see if she has any experience or thoughts about DCT.

[webslave]

The DCT thing is a fad, until proved otherwise. There are no studies, just some anecdotes, and those are notoriously unreliable.

Freedman is a much better spend of your money at this point.

[ChgoGuy]

The DCT thing is a fad, until proved otherwise. There are no studies, just some anecdotes, and those are notoriously unreliable.

I totally respect what you are saying Webslave... However - There is only one way to find out, and somebody has to be willing to do it and find that out for sure. I don't see spending $260, plus a few extra bucks to learn what works and what doesn't as a waste of time and money at all. Somebody has to try. Nothing is 100% and there are zero guarantees no matter what we try or do. If there was, wouldn't everybody be cured or fixed by now? Speaking only for myself, I need to be honest with myself here. There is only one certainty here, and that is that I need this to stop and just go away. Even if that means the fix is standing on one leg, holding my nose and jumping up and down!

[webslave]

There is only one way to find out, and somebody has to be willing to do it and find that out for sure.

That's not the test. People report cures when they are experiencing a placebo effect ... then a year later they come back sheepishly and admit it was not a cure.

The only "one way to find out" is a proper peer-reviewed study.

[ChgoGuy]

IMHO, and it's just an opinion, that could be said about any treatment we seek to fix this. I think we are all capable of feeling a placebo effect from any treatment. You make a valid point when you say there should be a "proper peer - reviewed study" and I am all for it, but until one is done, the only thing we have to go on, is what's in front of us, and that's the people who are willing to give it a try like myself. I don't think David McCoid is afraid of such a study, which is more of a reason why it deserves a good look at. Webslave - You're a good guy, and you're all heart with this, but some people are still suffering with this, myself included. I'm not doubting anything you say. It's not as if you didn't suffer yourself, but at this stage of time, I'm not sure there is any one solution to fixing this. I think all options available should remain open until we find something that helps each and everyone of us. For me, giving up isn't an option. I never thought I would see the day when I would allow somebody's fingers up my behind, or an S shaped wand to find some relief, but out of desperation, I was willing to try anything. You just do what you got to do. I am doing a bit better since starting DCT. Am I fixed or cured? Far from it yet, but nobody told me the road was going to be easy - whether it was DCT or the Wise Anderson protocol. For me, all I can do is keep pressing forward. I think a study of DCT is a great idea, but not something I have any control over.

[webslave]

If you reach a dead end with all the treatments and protocols we discuss here, then by all means try something new like DCT. But remember a LOT of men with CPPS have been cured and no longer visit this forum. Some have left us their success stories. If and when we see DCT begin to feature in those success stories on a consistent basis, I'll start to pay more attention.

[cpps2020]

We all have to work through this in our own way. Since I am near the beginning of this, there are several things to try that seem low risk that a lot of people have used and had success with. I gave acupuncture a try because it has a few thousand years behind it, was recommended in some reliable studies (and by my uro), and seemed unlikely to harm me. I learned quickly that I did not react well to it, so on to the next thing. Pelvic floor therapy likewise has a lot of positive data and seems unlikely to injure me if I work with experienced pros. I hope to give this a real shot -- maybe it will take 6+ months -- and learn a lot about how this condition is manifest in me. Along the way, I hope to become healthier in general and maintain a positive attitude. I used to do yoga regularly for about a year, so I know my limits with stretching and feel I can add that to my routine in a way that will benefit me and hopefully not make things worse. If things don't go well then sure, DCT might be an option but I'll need to come to that decision over time. I think the main criteria for me without peer-reviewed studies will be 1) is there another option that has some data behind it, and 2) how likely it is to injure me or make things worse. Doctors make similar decisions whenever they prescribe treatments off-label.

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An update on my progress so far...

I have had 2 sessions with Dr. Freedman, feel moderately better, and have learned a lot about my own condition. I have also been stretching regularly as described in "Headache" and doing some internal work.

I have a new perspective on my symptoms. The hematospermia started when my company closed my division and fired most of my colleagues. It got worse after I developed tinnitus and was incredibly stressed about controlling it. The pain started soon after that, and of course I attributed it all to my prostate based on what my doctors were saying. After improving on antibiotics only to have the symptoms return, did I start associating everything with pelvic floor dysfunction. I have no reason to doubt that in my case, stress contributed to this and pushed me over some threshold where I then became symptomatic.

But in my case, there seems to be another contributor besides the pelvic floor. After working with Dr. Freedman I have learned that I have palpable scar tissue from 2 surgeries: a bilateral hernia repair with mesh, and a left varicocele repair. The subcutaneous tissue is tight and sore when pressed, particularly on the left side in my inguinal region, and so far therapy has focused on stretching it out. Nerves and blood vessels run through this area, and when you work it in this way it starts to soften and you can more easily feel a pulse through it. The sessions are not too painful and the soreness lasts about a day. The idea that we are breaking up adhesions, leading to better blood flow, less pressure on some nerves and reduced inflammation, makes intuitive sense to me.

I also assume that these surgeries have produced internal scar tissue, which we are also trying to break up by using the Theracane and applying deep pressure to some areas of the abdomen and pelvis. This should also help relax the iliopsoas through which many nerves and blood vessels run into the pelvis.

In the days after my first PT session, the soreness became more localized to my left perineum (ischiocavernosus muscle), so I started massaging that area regularly. In the next session, Dr. Freedman really went deep in this area, which was quite painful but reproduced my most prevalent symptom (but more intensely). It seems likely that the pudendal nerve is a key contributor in my case. Given that this nerve runs deep in the pelvis, I plan to become more focused on the internal work over the next few weeks.

[NeoKortex88]

How do you deal with tinnitus so far? I can ignore it 3 days of the week and 4 days it stresses me out.

[cpps2020]

I've had tinnitus for a year now, which started with a head cold that must have gotten into my inner ear. The first 3 months were very stressful, keeping a diary of everything I did trying to find my triggers. Around that point, I realized I would sometimes go a week or more with minimal tinnitus, and this made the biggest impact on my ability to habituate since I understood it did not have to be constant. My triggers seem to be salt and stress. When I was having minimal episodes this summer, I raised my salt intake and started noticing it almost every day for a week or more, so that convinced me that salt was truly an issue. It is a cumulative thing, so I keep my intake minimal at home and I can generally eat what I want when I go out.

Every so often it will flare up, which becomes an issue mostly at night when trying to sleep. In that case I have white noise and other sound therapy on my phone that will help to mask it and calm down the negative thoughts. (An Ambien can also help.)

As I understand it, the realization that I can live with this lowers my anxiety around it, perpetuating a positive feedback loop in the brain that diminishes my perception of it. This is essentially what habituation is.

I believe that this is the most common outcome of people with tinnitus, which explains why most people who post on tinnitus forums drop off after a few months. This may be similar to CPPS -- once you begin a program to help it and start seeing improvements, the positive effects on your mood contribute to continued improvement.

How long have you had the tinnitus, and do you have a sense of what your triggers are?

(Also, if this is off-topic for this forum, feel free to reach out to me directly and I can recommend books and other resources.)

[NeoKortex88]

I have it for a year now and currently it’s spiking. However I am really depressed and anxious about my life so that probably is contributing to the spike.

[cpps2020]

Really sorry to hear about that. As Glenn Schweitzer and others have written about, you can view the tinnitus as a personal stress meter. Everyone has experienced tinnitus, but most have a much higher ability to suppress it because their baseline is far from the threshold of perception. This is just like the CPPS threshold schema discussed in the Wise-Anderson book. Stress brings you closer to that and then symptoms start appearing more often.

After 3 months of working on my CPPS, I would say I am certainly over 50% better. One key realization for me was that I should stop avoiding the pain by using cushions all the time, and instead start sitting more without them. Now when I feel soreness, I can do my exercises and usually discover that something is tight. (My iliopsoas is a major culprit.) After I stretch it out, the pain is noticeably better or even gone. It may also be that taking a break from work and stretching is simply a way to relax and lower my threshold. In any case, I'm starting to use CPPS as a barometer of my physical and mental health, which can be a more empowering way to think about it. Similarly with tinnitus, that approach can focus your mind on addressing the underlying causes and stop worrying as much about the symptoms.

By the way, I don't do much meditation now but that did help me a lot when I was working through the tinnitus. By focusing on the sound (as opposed to your breathing), you can train yourself to associate relaxation with the tinnitus and decrease your fight-or-flight response, which will lead to a lowered perception over time. I actually had experiences where the sound completely melted away during the meditation.

[NeoKortex88]

Thank you

I am actually meditating every morning for 30 minutes. It's a guided meditation from youtube. Only be doing it for 3 days now
I actually did some jaw/neck stretches and when I put my finger right in front of my ear and press hard into my jaw and open my mouth it hurts
like I had CPPS in my mouth lol. My tinnitus sound was actually a lot better afterwards this evening. Maybe I am on to something but to early
to tell.

[cpps2020]

Three plus years later, I finally think it is time to report on my progress in the hopes that others can learn from my experience.

Re-reading the above, I didn't fully understand the source of the pain until several months later. After finishing 3 or 4 sessions with Dr. Freedman in late 2019 and continuing my stretches, I recall being a bit depressed in February 2020 realizing that the pain was no longer improving. At that point, I joined a Pelvic Pain Stretching program and started diligently doing that work for 1 - 2 months. In the course of that I became much more aware of the muscles around my pelvis, and one stretch in particular that focused on the upper part of my left hamstrings felt noticeably tight and a bit sore. This is a deep part of the muscle, and even pressing on it with my hands is not enough to really get at the tightness.

I purchased this roller: https://www.amazon.com/dp/B008YPZQCU
By sitting on the roller and rolling it just below my butt while stretching my hamstrings (leaning forward), I can really get at that set of muscles/tendons. It became 100% clear to me that tightness in those muscles correlated completely with my pelvic pain. At that point, I stopped the stretching program and just focused on these muscles.

I also discovered a few other stretches that can reach those muscles, which I can use if I am not at home and don't have the roller. But nothing is as good as the roller. I still get some tightness related to ejaculation, but it is easily rolled out. I no longer have any pain sitting and generally this is like having some minor back pain when you get older. Not a big deal.

But there's more!

The hematospermia has continued for 4 years straight, generally on a 2-week cycle going from bright red to rust and then recurring. My PSAs have fluctuated below 5, and I have even had a biopsy (based on MRI finding) which just showed chronic inflammation. It seemed obvious to me that the prostate inflammation was irritating my deep hamstrings (causing the tightness) and I might have to live with the hematospermia forever unless I wanted to have a procedure (my urologist said a TURP might get rid of the blood if it really bothered me).

Back in 2019, I tried Quercetin for a couple months and then stopped because it didn't seem to be doing much. At that time, I was still dealing with all the pain and could not make sense of what was working and what wasn't. Three months ago, with the pain now in check, I decided to try Quercetin again (2 pills / day). Now in month 3, the blood has been gone for about 3 weeks straight. This is a very clear departure from the last 4 years, so I can say that for me personally it is having a noticeable effect.

I encourage anyone trying to find the source of their muscle tightness to try all types of stretches and be alert to any soreness that could indicate the source. In my case, I was lucky that I could get at it externally, and hopefully others might discover the same thing.

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