My PN and coccyx pain story.

Treatment options for UK & Irish members; including VHI & HSE criteria for funding and E112 Applications etc.
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Arsenal123
Posts: 1
Joined: Wed Jul 13, 2016 6:50 pm

My PN and coccyx pain story.

Post by Arsenal123 »

My PN treatment experience with Karolina (physiotherapist), Michael and Chris (Chiroprators) at Sayer Clinics.

Hi All. Been wanting to write a shortish review for a while but just haven't had time. Quick background which led me to finding Sayer Clinics and undergoing treatment with this fantastic knowledgeable bunch of people.

I'm 30 years old and work in the public sector. Prior to suffering from coccyx and PN issues I would say I was extremely fit and had no medical issues. Was a keen gym goer, football player and runner. In August 2015, that changed and it went a little down hill. It started with sudden testicular pain on my left side, 3 short sharp shooting pains. This then progressed to frequent urination, burning and extreme sensitivity in the penis.

The following events/treatment then followed.

-September-diagnosed with "suspected" prostatitis. Given various antibiotics and bladder relaxants- which I must say we're horrific. I didn't take to these very well at all. Didn't eat and went from 14st down to 11.5st, not ideal considering I'm F602.

-October (late)- back in to see urologist. No better. Off medication. In for laparoscopy and prostate massage (rather uncomfortable to say the least!!). Slight improvement with urination frequency and sensitivity in penis.

-December-referred to pain specialist to explore further, as now experiencing severe burning on buttocks when sitting down, on any surface.

Jan- see pain specialist and undergo MRI scan, no issues identified but diagnosed as having having PN. Undergo epidural to try and calm nerves, which don't work and intensify burning pain.

Jan/Feb- refereed to physio at BMI and undergo phsyio, which doesn't help

March/April- discharged by pain specialist and told it could take 2 years for condition to "calm down". Told should experiment with various medication, Lyrica, Pregabalin,Nortripillyin (if that's how you spell them) etc...... Again, none of these worked and felt like utter crap. Mood changes, tired, lack of energy, low libido etc....

May- start doing some research around PN and discover Pudendalhope website. There I find Sayer Clinics- thank goodness!!!!!

Now I must admit I was extremely sceptical about going to a Chiropractor as I had been undergoing medical care in hospital etc..... Also, back in Jan/Feb I had undergone physiotherapy with no improvement . However, I was honestly at point in my life where I had to try anything. Being a "youngish" male and not being able to sit down, was not only embarrassing but sent me on the verge of depression as the pain was so intense.

I saw Dr Michael Durtnall in May 2016, Immediately I took a liking to the man, honest, straight talking and funny ("stand tall, chest out, head up and on your toes ready to pounce" he tells me") the main thing is he listened and explained what was going on, and what was required in terms of treatment. I had some X-rays and the images showed my coccyx was a mess and I had a lot of calcification in my pelvis, spine etc......Michael explained I would require adjustments with him (great...... Getting my bones cracked isn't my idea of fun and relaxation) and intense physiotherapy with a physiotherapist. Now, Michael was honest with me, he explained I won't get better overnight, and it will require extensive treatment and a change in my posture, how I move etc....... Whilst receiving treatment from Michael I also have weekly physiotherapy sessions with Karolina, who is AMAZING- although she inflicts pain on me during treatment (nice pain though). I have an extremely stiff pelvis, especially on my right side which will often tighten after I play football. However, with the "homework" physio exercises I have been given by Karolina this helps in between treatments.

Now, I'm not going to lie. Some days I still feel uncomfortable and have slight burning when sitting. However, I can now at least sit, on most surfaces with minimal discomfort, something I couldn't do before seeing Michael, Chris and Karolina. I've had to be patient, and one needs to understand that it's not a "quick all better fix" overnight. I've had good days and some bad. However, the good greatly outweighs the bad. Plus, you need to stick with what the therapists are telling you. There are days when I can't be bothered to do my stretches as I've just finished a 12 hours shift, but I get on and do it, because I want a normal life.

Overall, I have being seeing Michael and his team now for 2 months and Ive seen a 40-50% improvement with my symptoms, which in my opinion is huge. There is still some way to go but I accept that. I look forward every week to seeing the team, knowing that I'm a step closer to getting back to some form of normality. Sayer clinics in my opinion have helped me more in 2 months than any other medical treatment I received the 9-10 months previously. I'm still receiving treatment from Sayer Clinics now and will be for a while. So onwards and upwards hopefully.

If you suffer from PN and haven't tried Sayer Clinics give them a try. There treatment may help you or it may not. Every person is different.

If you want to know more about my story/recovery drop me a line. If you want to get into a medical argument, diagnosis/disagreement etc..... Don't bother emailing me as I won't answer and I have better things to do (like homework-stretches). Will post a further update shortly. I've read some other peoples posts on these forums , some are positive others are negative,each to their own. I would say form your own opinion if you undergo treatment with Sayer Clinins.

Sorry if there any spelling or grammar mistakes, it's been a long day. Off to bed.

Ta ta for now.
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Violet M
Posts: 6570
Joined: Mon Sep 06, 2010 6:04 am
Location: United States
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Re: My PN and coccyx pain story.

Post by Violet M »

Glad to hear you are seeing some improvements and I hope it continues for you. ;)

Take care,

Violet
PNE since 2002. Started from weightlifting. PNE surgery from Dr. Bautrant, Oct 2004. Pain now is usually a 0 and I can sit for hours on certain chairs. No longer take medication for PNE. Can work full time and do "The Firm" exercise program. 99% cured from PGAD. PNE surgery was right for me but it might not be for you. Do your research.
Pinklady
Posts: 4
Joined: Thu Aug 25, 2016 12:25 pm

Re: My PN and coccyx pain story.

Post by Pinklady »

Hi Violet, could I ask if you think twice a week physical therapy for Vulvodynia is too much, I would have thought a break of a week better, Thanks Kosn
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Violet M
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Joined: Mon Sep 06, 2010 6:04 am
Location: United States
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Re: My PN and coccyx pain story.

Post by Violet M »

Kosn, I can't say for sure what would be right for you. My PT had me come twice a week as I recall. I think it would depend partly on whether it helps or whether it causes a flare-up. When I had internal PT it caused such a major flare-up that I don't think I could have done it twice a week PT. If it seems to help and doesn't cause a flare-up then I don't think twice a week would be too often.

Violet
PNE since 2002. Started from weightlifting. PNE surgery from Dr. Bautrant, Oct 2004. Pain now is usually a 0 and I can sit for hours on certain chairs. No longer take medication for PNE. Can work full time and do "The Firm" exercise program. 99% cured from PGAD. PNE surgery was right for me but it might not be for you. Do your research.
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