My Story - Looking for Advice for Unique Situation

[GGGOz]

Hello - I am new to this board and I am hoping to get some feedback on my situation. I am a 26yo. Trying to keep this from getting too lengthy but still include all relevant info.

I first encountered my pelvic pain a year and a half ago. One day I woke up with pelvic pain, and suddenly I was having a small amount of dribbling after urination. Sex seemed to make this worse, especially masturbation, and I sometimes felt a pinch during orgasm that was worse in certain positions. (Found that orgasms when I was on my back hardly ever caused pain) After a week or two of this I figured it wasn't going to go away on its own and the pain was pretty bad so I started doing research. I self-diagnosed myself with a tight pelvic floor and went to see a pelvic floor PT. She got me doing stretching and did some massaging. No internal stuff or trigger point release (I don't think she was familiar with that), but she did say sitting on a tennis ball might help too so I also did that. Hot baths too whenever I could, and avoiding sitting too long. The pain went away after a few months, and the only time I could feel anything was after a core workout or heavy lifting exercises. (Not even pain, just some pelvic tightness)

This lasted for almost a year, with barely any symptoms. Then about 8 months ago, after started to get back into weight lifting heavily again for a couple months, the tightness came back and started causing some pain again. I started doing my stretches again to get rid of it the same way as before. Unfortunately, shortly after my symptoms came back, I had an incident after having sex a few times. When I reached orgasm, everything locked up and I felt sharp pain. Really really bad pain for a second or two. It felt like my urethra was blocked but I was still trying to push semen through. Afterwards there was a decent amount of blood in my semen. I was in lots of pain for the next few days.

Unfortunately this was just when COVID was starting so I didn't go to a urologist afterwards, I just began my stretching, baths, sitting with good posture, sitting on a tennis ball etc routine. The pain lessened and I felt less slightly less tight, but now I had new symptoms that weren't there before. It was a burning/inflamed pain in my prostate area that never seemed to go away after even a month or two. Finally I figured that my issue was not just tightness anymore and I started learning about prostatitis and things that could help with it. Over time, I added things to my diet that seemed to help somewhat such as: broccoli treatment, zinc, cranberry concentrate pills, and eating lots of garlic. I have just recently also incorporated Quercetin after learning about it on this forum, so we'll see if that helps too. When I take these treatments and avoid things like alcohol, citrus fruits, and the sharp/burning pain seems to go away 95%. Then I am only left with the tightness. (similar to my first bout with this) When I go off the supplements, the burning/swollen feeling in my prostate area returns. I am still having sex (though careful that I am not too tense when I do it and I avoid orgasm in certain positions).

Now that this is seeming to not go away on it's own, I am looking to quash this nonsense for good. I read HITP, and am trying to incorporate that though I have yet to find any TPs on my own. I am making appointments with a pelvic floor PT (a different one this time who seems to know more about trigger points) and a urologist to discuss this. Other than that I am just continuing with this general schedule:
-broc treatment, zinc, Quercetin, cranberry, garlic every day
-stretching 4 times a day (deep squat, happy baby, childs pose)
-sit properly and make sure I'm relaxed
-sit on tennis ball and foam roll glutes for a few minutes every day
-take hot baths as often as possible before stretching, tennis ball and foam rolling

The closest city to me is Syracuse NY so if anyone knows any good urologists or pelvic floor PTs near me I appreciate recommendations! I may splurge for a visit to see Dr Wise in California if this continues for much longer, but that would be a huge financial commitment for me.

I am hoping for some advice on my condition? What type of treatments should I be doing that I'm not. Any guesses what is wrong with me? All feedback is appreciated!


Thanks

[webslave]

The only unusual thing about your case is the sudden sharp ejaculatory pain accompanied by blood in semen. Other than that, your response to typical CPPS remedies is encouraging and suggests an uncomplicated outcome. You seem knowledgeable and proactive, which is good. Prognosis is positive.

[GGGOz]

Thanks for the response! That sharp pain/bloody semen was what really freaked me out, and I've never read about anyone else having had that happen. I guess in a weird way it makes sense though if I was so tight at the moment that my urethra was blocked, maybe something ruptured due to the pressure.

Do you have any recommendations for PTs/Urologists closer to Syracuse or should I probably try NYC? I know there are a lot of good PTs there but since its so far, I'm not sure how consistently I could go.

Thanks for the help

[webslave]

You're better off visiting an expert like Freedman in NY a few times, to learn the ropes, and then treat yourself from then on.
http://www.pelvicology.com/our-staff/

Or you could call David Wise. He may be able to recommend someone closer to you.

[GGGOz]

Sounds good. I will try to get an appointment.

[GGGOz]

Follow up questions. What is the difference between Quercetin and Quercetin? Any reason for me to pick one over the other?

Any other supplements I could try or prescriptions I could ask my urologist for?

Thanks again

[webslave]

Q-U contains more quercetin but also pollen extract, to which a small number of people are sensitive. It's the better product for most people.

Ask urologist for Amitriptyline and maybe a benzodiazepine if you suspect bouts of anxiety and stress play a part in your condition

[GGGOz]

Just to track my progress here, I did see Marilyn Freedman to look at my pelvic floor. She was helpful, and she found some tight spots in my abs, butt and pelvic floor. She taught me some methods of helping with the tightness, but I did notice that she would not call my tight spots 'trigger points.' She just recommended that I treat them like trigger points.

Also saw a local urologist. Boy you guys weren't exaggerating when you said that'd be useless. He just checked my urine for bacteria, rubbed my prostate a little bit and told me if it still hurt in 4-6 months come back and he could check for strictures and put me on antibiotics for a few weeks. Gave me info on the IC diet as well. Never heard of quercetin..

Still currently fighting a flare that has lasted a month and a half. It feel like an area wide burning that is worse after urination. As discussed elsewhere, I may be somewhat sensitive to Quercetin, so I am switching to Quercetin. Also working on an elimination diet, haven't really started yet though. Spicy foods, dairy and alcohol I know are bad, but I'm wondering what else is causing me issues.

Current regimen:

• hot baths every other day or so
• internal massage every other day.
• massage butt, abs, sit on a tennis ball every other day or so
• stretches multiple times a day
• quercetin supp

[GGGOz]

Quick update on my current status. Any thoughts/comments are always appreciated.

I mentioned in my last post that I had a current flare that I couldn't seem to fix. I was confused by this since before I was able to get back to basically 100% over the summer, and the same things were not working now.

I now am confident that the reason I can't quite break this flare is because I am back in the office and sitting all day. (this Spring/Summer I was working from home) With this in mind I started trying all sorts of cushions with limited luck. (Tried donuts and tush cush) I have now settled for an ergonomic chair that has a mesh base. This seems to work decently.

The problem I'm running into now is sort of complicated. As I mentioned in previous posts, my condition has two components: 1) My pelvic floor tightness 2) My pelvic burning

I am fairly confident I could get rid of either issue independently.
- To get rid of pelvic tightness, I need to sit with my butt back and pelvis tilted forward. This sort of stretches the pelvis as I sit in a way and provides lots of relief especially if I perform diaphragmatic breathing consistently throughout the day. That combined with stretching, not tensing during sex and sitting on tennis balls occasionally will basically eliminate my tightness for a period of time. This is what I did to beat my first round of pelvic tightness.
- To get rid of my pelvic burning sensation (that resulted from the trauma to my prostate/urethra), I need to avoid all pressure, take supplements like quercetin, and avoid certain foods like dairy, spicy foods, citrus and alcohol.

My problem is sitting properly in the manner I mentioned causes a lot of burning pain very shortly, regardless of what I've been eating, what supplements I've been taking, or what I am sitting on. But if I sit inappropriately (leaning further back with less pressure on perineum), I will feel tight before too long (golfball in rectum etc.) Standing also seems to make my tightness much worse oddly.

So currently I am basically going back and forth in between two different forms of discomfort trying to figure out how to beat both at once. It's frustrating to be honest but I feel like I'm gaining more understanding so hopefully I can figure this out soon.

Thanks for listening

[webslave]

Make sure you're using a donut cushion or sitting with each leg on a folded towel. Take the contact pressure off the perineum

[GGGOz]

I ended up going with a standing chair. (Discussed in another topic) This seems to fix my issue, since by leaning or "perching" throughout the day. I am feeling much better and think I am making progress again!

I am dealing with a new symptom however which is that my groin is extremely sensitive sometimes. Nothing too debilitating, but the friction of clothes, walking, hair etc is causing irritation. I am assuming this is somehow related to my CPPS and I think it may also be linked to recent hip soreness I've been dealing with. I have read from others that this may be allodynia and should go away on its own, so I am trying to be patient. In the meantime I am planning to help it along with some Lidocaine balm or something. Any other recommendations?

Thanks

[webslave]

Allodynia/hyperalgesia is very irritating. It's best to try to minimize any stimulation of the affected nerves. Anesthetic creams - yes, and mechanical isolation or physical buffering (e.g. bandaging) can also help.

[webslave]

BTW there are also home remedies for numbing nerves, a DIY approach:

1. Ice. An ice pack or cold compress can numb pain. Ice can also numb your skin prior to a procedure such as an ear piercing.
2. Patting. Patting your skin sharply a few times can have a very short-lived numbing effect.
3. Aloe vera. The gel from aloe vera leaves can ease the pain of sunburn and other skin injuries.
4. Clove oil. This can be applied to your skin as a counterirritant for pain with early research suggesting that it can act on the skin similarly to benzocaine.
5. Plantain. A fresh poultice made with plantain — the weed, not the fruit — may fight inflammation while soothing the skin.
6. Chamomile. A 2010 study showed that chamomile essential oils effectively penetrate below your skin’s surface into the deeper layers as a topical anti-inflammatory agent.

[GGGOz]

Definitely been helped by lidocaine cream. Tightness comes and goes once and awhile but it’s really not a concern anymore. No problems with urination other than a drop or two left afterwards.

Really the only thing I am still struggling with is a general burning sensation in my groin that’s aggravated by sitting. The burning is also slightly felt during urination. I have been sitting on cushions, trying standing chairs/desks etc with some relief but I can’t quite get rid of the burning.

Good diet seems to help slightly, but I don’t think it’s the complete solution. Cheat days don’t cause too much discomfort. Quercetin seemed to work initially (back when my pain was more localized) but now I’m not seeing any positive effects. Tried vitamin C, Allegra, and other supplements with limited results.

I may be slowly improving but sometimes I’m not sure. If I sit without a cushion I am confident the burning will worsen in a few days at work. Considering trying Elavil since my gut tells me this is lingering nerve pain. Is there anything else I can try?

[webslave]

One thing at a time. Try Elavil at the lowest dose you can, use a pill cutter and titrate up dose slowly.