Hi everyone,
I AM NEW TO THIS SITE, BUT HAVE BEEN SUFFERING FROM PELVIC FLOOR MUSCLE SPASM ALMOST 24/7 for about 4-5 years (literally). When I say 24/7 I mean exactly that - the muscles are just contracting ALL the time - when I try and relax, when talking to people, when trying to get to sleep, when waking up. IT'S CONSTANT. It's very difficult to concentrate or follow conversations etc. because of it.
When I try to relax the muscles down there, I get this kind of 'feeling' within 1-2 seconds, and then the muscles contract involuntarily. The only thing which has prevented the spasm up to this point has been to keep my mind active & busy with thoughts, work, imaginations etc. until I try to relax and then it just happens again straight-away again.
I would not describe it as acute pain. It' more severe discomfort & inability to concentrate/relax at all with anything. It's a bit like, I guess, if you keep on clenching your first fairly hard - it's not acute pain, but it's very uncomfortable and it's incredibly debilitating & annoying.
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I HAVE BEEN VERY FORTUNATE IN THE LAST 2 WEEKS, in that purely by chance I have found something that gives great relief for the spasm. Borage Oil & Cod Liver Oil (2g each 3 times a day). The spasm pretty much subsides completely for a couple of hours after taking it!! (but it comes back with full force after).
It appears that these oils act as anti-inflammatory and reduce prostaglandin e-2.
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I ALSO HAVE RELATED SYMPTOMS. Only realised they were related through reading this site! So thank you site-owners!
+ High urinary frequency (20-30 times a day) & v.high urge to urinate.
+ Irritable bowel. Specifically very loose stools. I had test for all the routine causes such as Crohn's/celiac etc. which all came back negative.
These symptoms have been hugely improved last 2 weeks from taking the mentioned oils above.
Also, I have suffered terrible chronic insomnia for years. I cannot get to sleep, even when quite tired, due to the spasm. I can only get to sleep when chronically over-tired, and even then the quality is very poor.
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I WENT TO SEE THE UROLOGIST FOR THE FIRST TIME YESTERDAY. I am not ashamed to say I was in tears explaining the problem (as it has had such an effect on my life - as I'm sure it does for everybody). I explained about the constant spasm, and he just looked completely confused and expressionless. He didn't understand it. The ONLY thing he said on the spasm specifically was "some people who get pain, also get spasm" - but that's ALL he said!
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I KNOW THE REASON FOR IT, BUT DO NOT KNOW/UNDERSTAND THE UNDERLYING CAUSE. I had an adhesion between foreskin/glans which pulled the head back on every tug and caused the PC ejaculatory reflex on every tug. I masturbated like this for 6 years (I am 22 now) before realising there was something anatomically wrong, and then had it surgically corrected. But the constant spasming which happened as a result still remains.
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+ I'M WONDERING IF ANYONE HAS NAY VIEWS/THOUGHTS on my condition.ie. if anyone who knows more about this condition than I do can shed some light on what might be the possible underlying mechanism behind it, it would be HUGELY appreciated
+ Also, HAS ANYONE BEEN TREATED IN THE UK BY A PELVIC FLOOR SPECIALIST? I will travel anywhere in the UK to see someone about this.
Thank you for reading, and looking forward to any replies,
David B
Hi everyone - My story & anyone in the UK?
Hi everyone - My story & anyone in the UK?
Age: 23 | Onset Age: 18 | Symptoms: Constant spasm/uncontrollable sustained contractions of PC muscles (bulbospongiosus/ischiocavernosus) | Helped By: L-arginine | Worsened By:
Welcome. Just a couple quick thoughts.
1) Have you tried taking a Benzo such as temazepam or clonazepam for a week or two (only) to try to 'break the spasm'? (Might be longer lasting than the oil combo)
2) If your body is always tired it is more prone to tense up. If you are OK once you get to sleep (ie. don't wake until you have to) try Zaleplon. It's a non-addicting sedative that might help you get to sleep. It only has a half life of 1 hour though, so it won't keep you asleep if you're prone to early awakening.
1) Have you tried taking a Benzo such as temazepam or clonazepam for a week or two (only) to try to 'break the spasm'? (Might be longer lasting than the oil combo)
2) If your body is always tired it is more prone to tense up. If you are OK once you get to sleep (ie. don't wake until you have to) try Zaleplon. It's a non-addicting sedative that might help you get to sleep. It only has a half life of 1 hour though, so it won't keep you asleep if you're prone to early awakening.
Age: 32 | Symptoms: Twingy pain/muscle spasms in groin area (gone), tingling sensation at tip of penis (has resolved as of now), urinary frequency (resolved as of now), thicker/decreased amount of semen (resolved as of now). Makes better: Stretching, Relaxing pelvic muscles, moment to moment relaxation, not sitting with legs crossed, Elavil, quercetin. Makes worse: Sitting, stress, more than one orgasm/day, constipation, manual labour
Hi David
Welcome to the forum.
I'd recommend you go and see Bill Taylor who is based in Edinburgh.
His contact details are:
Bill Taylor
Taylor Physiotherapy Sports Injury Clinic
10 Comely Bank Avenue
Edinburgh
Scotland
EH4 1EN
0131 332 8698
Make sure you ask for an appointment with Bill himself (he has other physios) and say its for CPPS. Might be worth asking to speak to him over the phone. He's usually in clinic non-stop during the day but he'lll phone you back.
I'd recommend doing a search for 'Bill Taylor' on this forum for some background and you can read my story/progress via the link in my signature below.
Also read through this thread plus it's worth buying 'A Headache in the Pelvis' to read.
Richard.
Welcome to the forum.
I'd recommend you go and see Bill Taylor who is based in Edinburgh.
His contact details are:
Bill Taylor
Taylor Physiotherapy Sports Injury Clinic
10 Comely Bank Avenue
Edinburgh
Scotland
EH4 1EN
0131 332 8698
Make sure you ask for an appointment with Bill himself (he has other physios) and say its for CPPS. Might be worth asking to speak to him over the phone. He's usually in clinic non-stop during the day but he'lll phone you back.
I'd recommend doing a search for 'Bill Taylor' on this forum for some background and you can read my story/progress via the link in my signature below.
Also read through this thread plus it's worth buying 'A Headache in the Pelvis' to read.
Richard.
Not medical advice: Read my progress to date : Read about my W-A clinic visit
Age: 54 CPPS: 20 Yrs Recovery Status: 95% Symptoms: Pain around perineum Makes Worse: Tension, sitting Makes Better: Stretching, triggerpoint therapy, relaxation
Age: 54 CPPS: 20 Yrs Recovery Status: 95% Symptoms: Pain around perineum Makes Worse: Tension, sitting Makes Better: Stretching, triggerpoint therapy, relaxation
HI mate,
Sory to hear about your condition. This is a great site. In time it will help you massively. I'm in the UK - Birmigham.
Greg
Sory to hear about your condition. This is a great site. In time it will help you massively. I'm in the UK - Birmigham.
Greg
Age: 29 | Onset Age: 26 | Symptoms: initially severe burning throughout pelvis - much better; muscles spasms all over region, back pain, chronic IBS (much better) | Helped By: Psychotherapy, SP stretches, swimming, accepting the condition (understanding there is treatment); stress/anxiety management; possibly basic quercetin; valerian root, vit B & calc & magn supplements; gluten avoidance & especially dealing with chronic constipation. | Worsened By: stress / anxiety, too much sex; repressed emotions; personality goodist traits. 80% better
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LightningTree
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Welcome.
I'm not fromt he UK, but a visited Britain last summer for three weeks and had a great time. I love the UK (and the new Doctor Who. )
Anyways, hang in there. I also found that multi-vitamin supplements helped me. Also, foods with potassium and vitamin B cut down the pain some.
I'm not fromt he UK, but a visited Britain last summer for three weeks and had a great time. I love the UK (and the new Doctor Who. )
Anyways, hang in there. I also found that multi-vitamin supplements helped me. Also, foods with potassium and vitamin B cut down the pain some.
This is not medical advice, and I am NOT a doctor of medicine or a related field.
* Age:33 Onset: February 2004.
* 99.9% IMPROVEMENT in 2.5 Years with the first year being the really hard part
* Current Symptoms: Mild irritation of perineal muscles on occasion. Relieved for days at a time by a specific stretch (see below).
* Initial Symptoms: Terrible penile, urethral, rectal, and perineal burning/aching with addition afferent sensations.
* Current Treatments: Deep stretching of the legs and pelvis. Most effective: Deep psoas and levitar ani stretch using the first phase of the "pigeon pose" from Yoga. When a deep pulling is felt in the middle of the pelvis next to the upper rectum, symptoms are completely alleviated for several days.
* Past Treatments Hyperprotection of the perineum for 1.7 years, Walking, Rectal biofeedback, Stanford/Wise-Anderson Protocol, Conditioned deep relaxation practice, Men's Multi-Vitamin and an Extra B-complex pill, all seemed to help.
Thanks guys,
I've just finished reading Headache in the Pelvis, which has enabled me to take a huge step forward and to pinpoint the exact problem
- bulbospongiosus & ischiocavernosus trigger-point(s) with muscle spasm & aching in the perineum & testicles. Caused by the continues chronic involuntary contractions over many years.
I will book an appointment with Bill Taylor in Edinburgh.
DavidB
I've just finished reading Headache in the Pelvis, which has enabled me to take a huge step forward and to pinpoint the exact problem
- bulbospongiosus & ischiocavernosus trigger-point(s) with muscle spasm & aching in the perineum & testicles. Caused by the continues chronic involuntary contractions over many years.I will book an appointment with Bill Taylor in Edinburgh.
DavidB
Age: 23 | Onset Age: 18 | Symptoms: Constant spasm/uncontrollable sustained contractions of PC muscles (bulbospongiosus/ischiocavernosus) | Helped By: L-arginine | Worsened By:
Let us know how you get on 
Not medical advice: Read my progress to date : Read about my W-A clinic visit
Age: 54 CPPS: 20 Yrs Recovery Status: 95% Symptoms: Pain around perineum Makes Worse: Tension, sitting Makes Better: Stretching, triggerpoint therapy, relaxation
Age: 54 CPPS: 20 Yrs Recovery Status: 95% Symptoms: Pain around perineum Makes Worse: Tension, sitting Makes Better: Stretching, triggerpoint therapy, relaxation
Sorry to be a pain David / Richard can I have the umber for Bill Taylor? Cheers
Age: 29 | Onset Age: 26 | Symptoms: initially severe burning throughout pelvis - much better; muscles spasms all over region, back pain, chronic IBS (much better) | Helped By: Psychotherapy, SP stretches, swimming, accepting the condition (understanding there is treatment); stress/anxiety management; possibly basic quercetin; valerian root, vit B & calc & magn supplements; gluten avoidance & especially dealing with chronic constipation. | Worsened By: stress / anxiety, too much sex; repressed emotions; personality goodist traits. 80% better
0131 332 8698GP2 wrote:Sorry to be a pain David / Richard can I have the umber for Bill Taylor? Cheers
Not medical advice: Read my progress to date : Read about my W-A clinic visit
Age: 54 CPPS: 20 Yrs Recovery Status: 95% Symptoms: Pain around perineum Makes Worse: Tension, sitting Makes Better: Stretching, triggerpoint therapy, relaxation
Age: 54 CPPS: 20 Yrs Recovery Status: 95% Symptoms: Pain around perineum Makes Worse: Tension, sitting Makes Better: Stretching, triggerpoint therapy, relaxation
Much obliged
Age: 29 | Onset Age: 26 | Symptoms: initially severe burning throughout pelvis - much better; muscles spasms all over region, back pain, chronic IBS (much better) | Helped By: Psychotherapy, SP stretches, swimming, accepting the condition (understanding there is treatment); stress/anxiety management; possibly basic quercetin; valerian root, vit B & calc & magn supplements; gluten avoidance & especially dealing with chronic constipation. | Worsened By: stress / anxiety, too much sex; repressed emotions; personality goodist traits. 80% better