Starting pelvic treatment after 4 and a half years

[JuanMilo]

Hi, so I've neglected doing anything serious about this illness because I was so confused by everything and I still am to a degree. I'm confused about how it seemed to start off as an STD, how nothing shows up on tests etc, how the uros will insist that pelvic therapy isn't an option for me etc. I'm confused about where to start, confused about what to look for in my pelvis and I feel I need some guidance.

I've decided I'm going to see Karl Monahan in London. A quick search turns up some interesting results on this forum from a while ago. He seems like a good guy who comes at this illness from the tension angle albeit perhaps differently (?) to the angle some in the forum do, I'm not quite sure. Still though I feel like he's a decent place for me to start dealing with this illness as a tension problem.

I'm at the point now where this has been affecting me for nearly 5 years and I'd like to be in a relationship again. Something needs to change. I'm also seeking out help for anxiety I've suffered with the the past 2 and a half years.

I'm just wondering what people's thoughts are on this. I actually tried Amy Stein's stretches but they caused a lot of burning in my abdomen the next day. I did start off doing her stretches more than once on the first day - perhaps I over did it?

I'd be very grateful for people's thoughts. I suppose I just need an action plan and I'd be extremely grateful if anyone could help me get all this in order!

Thanks a lot.

[webslave]

Looking at this
http://www.thepelvicpainclinic.co.uk/about/
Karl Monahan seems to be coming from the right general direction, so this is probably a good move for you.

[JuanMilo]

Thanks webslave, it's relieving to know you think that! Fingers crossed this can be the first step on the road to some kind of recovery. I'll do my best to keep this thread updated with my progress.

You might remember talking to me a couple of years ago. My outlook has changed since then and I've changed my signature to match.

Btw - what do you think about the fact I had quite bad burning pain I've never had before my Amy Stein's stretches?

[webslave]

It's a good sign. If any sort of muscle manipulation (including stretches) increases pain, the chances that you have a muscle-nerve problem goes up dramatically. And that's actually good news, because it's curable.

[Alphalifestyle]

Wow, that Karl Monahan guy seems to be really qualified. Looks like a very good place to visit for us European guys. Might visit him myself at some point.

Seems like we have qualified male pelvic pain therapists in the UK, Neatherlands, Czech and Germany now:
http://www.thepelvicpainclinic.co.uk/
http://www.pelvicpain.nl/international-patients
http://www.ebzkoeln.de/pages/de/spektru ... chmerz.php
http://www.suchajehla.cz/informations/
http://www.naprapathy.cz/?lg=de&str=1&n ... aprapathie

That is a excellent development and gives us some options here on the old continent.

Wish you all the best and please keep us posted! I am very curious if that guy is as good as website makes him look!

[JuanMilo]

Apologies for the long post in advance, I want to be pretty comprehensive about my experience though.

I had my appointment with Karl yesterday. He's a very friendly guy, and his practice is based on what is (as far as I know) THE medical street in London. Very posh, very well to do, with high ranking medical establishments on the same road. I do think he only rents a room in the building he's in, but perhaps him being on that street is a sign that at the very least he's doing well for himself and therefore, perhaps he's good at what he does. I hope he is, he seemed to know what he's talking about. He definitely does come at some things from an alternate point of view, I'm having some blood tests on Monday and he wants to check out the results and recommend supplementation based on them. He says the standard accepted 'normal' levels of things some as thyroid hormones aren't necessarily right for the individual. I don't think this was NECESSARILY to do with addressing the pelvic pain though, because I have issues with sleep, fatigue, anxiety, depression, joint pain etc, that I told him about. I think it was part of an holistic approach.

Onto the pelvic pain aspect, which obviously was the biggest part of the appointment. He did the general kind of physio thing where they manipulate your legs to find tight muscles, of which there were a few, but that's no surprise with my level of inactivity. He got me to lie down and breathe deeply, focusing on breathing into the belly. Then he got me to bend my legs into the position you'd have them in while doing sit up, and kind of splay them out with pillows supporting my knees while I did the breathing technique he showed me. I think he said it was an abductor stretch (?). I was actually quite ill and very tired from getting up early yesterday so I can't remember when he did this (before or after these stretches), but he also did an abdominal massage, looking for trigger points where pain referred. He did seem to find one but to me it was just central, where I'd imagine my prostate is. My abdomen in general is quite sensitive centrally around the bladder and prostate area, he said that the muscles around that area were very tight. He put a decent bit of pressure on these areas and it definitely wasn't comfortable, but it was tolerable. He then got me to turn over and did the same around my buttocks and my lower back. I do get twinges of pain in my lower back from time to time since pelvic pain started for me. It seemed to me that when he started palpating one of the bones on the left in my lower back, the usual pain in my left testicle started. That said, I'd just flipped onto my front after a moderate massage, putting pressure on a sensitive spot (around the prostate/bladder). That same sensitive spot (at the front) has referred pain to my left testicle once before when I was walking with a heavy bag that has a waist strap around the bladder/prostate area, so I'm not sure if there was a trigger point in my back or not. He also got me to perform the abdominal massage on myself, as he wants me to do this at home.

Then we went onto squatting while using the breathing technique. It seems for me that tensing muscles involved in squatting aggravates things for me, so instead, he showed me how to lie down and squat against a wall in order to take the pressure off my pelvic/abdominal muscles. Just a quick note - the same abdominal muscles involved in squatting seem to aggravate my pelvic pain BADLY when I do sit ups, the last time I did sit ups I had days of pain while being aroused, horrible irritation in my urethra etc. much, much worse than usual.

After this, Karl recommended mindfulness from a service called 'headspace', I do already have access to this service through an anxiety charity. He recommends to do these breathing exercises/stretches during meditation, twice a day, but to practise the breathing exercises as often as possible.

We then talked about my sexual practises and other habits. I have two habits he addressed, one is 'kegelling' during masturbation, because I'm choosing the masturbate when I'm not aroused enough, the other is sucking my gut in. So it's time to change those two habits. He put it like this, I have a choice between sucking my gut in or not having pelvic pain, I have a choice between masturbating on a whim because I kind of want to, or not having pelvic pain. He also talked about catastrophic thinking associated with pelvic pain.

We talked about how when this all began, I was actually practising kegels and kegelling during sex which could well have played a role in this coming on, despite the diagnosis of non-specific urethritis at the beginning due to high white blood cells. Who knows maybe the pelvic pain caused the high white blood cells. It did have the hallmarks of an STD though, didn't start for weeks after repeated unprotected sex over the course of three days.

He didn't do an internal examination because I had some concerns about that but also because I'm currently ill with a stomach bug, but I couldn't cancel the appointment without losing a lot of money, I'd already paid for travel and the appointment, and only realised how ill I was on the train ride there - not pleasant!

I feel like Karl's pushed me in the right direction with a number of things to practise/think about now. Pretty under the weather today so I'm probably going to procrastinate until after the weekend, but I will 100% be starting to use these techniques in the coming days.

Webslave, I understand if you didn't read this far, but it'd be good to know your thoughts on the appointment.

Thanks a lot.

[webslave]

He put it like this, I have a choice between sucking my gut in or not having pelvic pain, I have a choice between masturbating on a whim because I kind of want to, or not having pelvic pain.

I like that. Never heard it put quite that way before, but he is right. The hyper-tense state needed to orgasm during routine masturbation is reported as a problem again and again.

Keep going with him; he seems good.

[JuanMilo]

Thanks for your response! Good to know you have confidence in him. I meant to say as well, afterwards when I was walking I had pain in my left testicle when I usually don't have it. I suppose like you said, if you have pain from your muscles being palpated it's a sign that's where the problem is. I'll keep this thread updated. I have a feeling the massage may have been the thing that aggravated the pain, Karl wants me doing that daily. Any advice about that?

[webslave]

If your problem is neuromuscular, and it probably is, you can expect symptoms to be slightly worse when you start treatment. Daily is good.

[JuanMilo]

Well I am definitely flaring. After ejaculating last night I had A LOT of irritation afterwards going to pee. I get this feeling like the urine is almost blocked in there accompanied by acute irritation. I had to go and sit on the toilet for half an hour or so. I still feel irritated today and my belt caused me to have fairly bad pain in my abdomen tonight. I haven't really had symptoms like this for a very long time. All I'm doing is the breathing techniques once a day with the adductor stretch (pretty light just lying down) and the floor squats. My symptoms are flaring pretty bad with light work. Should I just carry on with this and assume it'll get better?

[JuanMilo]

I've been doing the stretches and external massage but I don't think I'm seeing any benefits yet. I'm very concerned with the veins on my penis. I seem to be getting more spider veins that are becoming more prominent. I wonder if that's related to the treatment? Very confused as to what's going on and I'm half considering asking to see a urologist for a scan...

[JuanMilo]

Also, the veins are definitely the sorest part of my penis

[webslave]

Have you had internal massage yet, from Karl or anyone else?

[JuanMilo]

Have you had internal massage yet, from Karl or anyone else?

No internal massage yet. When I went to see Karl I had stomach flu and some anxiety about an internal examination. He said he wanted me to come back and see him for an internal examination.

The external abdominal massage seems to still be aggravating my pain, but I have only been doing it for a couple of weeks. It aggravates the pain I get around my left testicle, which seems to even radiate up to the bottom of my rib. Does that seem normal to you?

I'm still sticking with it and the pelvic approach. I'm committed to this and I'm hoping it's the right route. I just get worried I have something going on like pelvic congestion or a blood clot/varicose vein somewhere causing these symptoms. Just confused atm!

[webslave]

Without internal massage, you could be wasting time. Can you see Karl again?