Health Organization for Pudendal Education

Like many of you I have been seeking an answer to my pain for some time now - although at 8 months I see that I am relatively new compared to many others.

I am male, aged 55 years. About 8 months ago I started getting lower back ache/pain after sitting for anything more than a hour. I saw the GP who said SI Joint. I had some PT. Didn't make any difference.

Over the last 8 months the ache/pain has got worse and if I sit for any length of time it seems to radiate to both sides of my pelvis. It is particularly bad if I sit on a couch, or on a cinema seat. I used to love going to the movies - now it is an ordeal. Sitting on a toilet seat is okay - no discomfort.

OTC pain relief doesn't do a thing.

I don't seem to have many of the associated symptoms - although ejaculation can cause a pain in the buttocks.

I have been searching for ages looking for something which seems to match my symptoms. This is the closest I have come to seeing something which matches what I am experiencing.

What do you think - could it be PN? What else should I look out for?

DannyB,

Pain while sitting is a hallmark of PN. Many of us also experience sacral pain, which is where the PN nerve originates. Pelvic pain after sitting is also symptomatic of PN, as is pain after ejaculation. It sounds to me that you are close to a proper diagnosis.

There is alot of good information on this website about how to obtain a definitive diagnosis, as well as how to protect the nerve from further damage. Please read as much as you can here about the condition so that you can craft a plan to bring an end to your pain, or at least to not make it worse.

Please feel free to pose any questions here during your journey and we will do our best to answer them.

DannyB,

Your symptoms sound suspicious of PN. Do you have a contributing factor.....some incident that could have caused it? Weightlifting, pelvic surgery, intense bike-riding, trauma to genitals are some common ones.

I'm fairly new to the site as well. Welcome to the group! We are candid and don't get offended by anything. Ask away.

cari

Thank you for the replies so far.

carolynm - no incident/trauma that caused it. It just seemed to start one day and has got slowly worse ever since.

Some of the things I have noticed are:

i) on a few occasions I have been lulled into false hope when it seemed to 'go away' for 2 or 3 days. But then it comes back again. I have often said that it seems to 'flare up'. But I have never been able to pinpoint any reason

ii) I sleep okay. It is usually okay in the morning but from midday onwards it gets progressively worse.

iii) strangely I seem to be able to drive okay - yet any other seated position is painful - far and away worse is a cinema seat.

Does any of the above sound familiar?

***I said lower back - but I suppose really it is the sacral region ***

Yup....mornings are good and then when I'm flared up by evening I am bedridden....

The car seats are hard for me, though.

I don't know where you are located, but have you looked on the Home Page for PN-aware providers? Both PT and MD? I hope there is someone near you so you can get a proper diagnosis. We ALWAYS tell newcomers to BE YOUR OWN ADVOCATE. This disease is rare and a lot of providers don't know a thing about it.

cm

Thanks again.

I am in the UK. But dependent upon NHS as I do not have private health insurance nor means to fund.

Hi DannyB,
Welcome
There are a few of us in the UK, as Lernica said 'crafing your plan' (like that Lernica ) with the great info you can acquire from this site and the people here is a good start.
Have you offered PN as a possible diagnosis to your GP? or have you been referred to anyone else yet?

I think that you might be in a good situation in that you had no 'trauma' to bring your symptoms on and therefore conservative treatments may well work for you.Fingers crossed. If PN is your problem, but it does sound likely from what you have said so far, read through the home pages for a comprehensive list of symptoms etc.
Here is a list of UK pelvic physio's http://www.pelvicphysiotherapy.com/Manu ... pists.html
Although I haven't any real feedback if any can help with PN, although Six Physio (London) and Ruth Love-Jones (southhampton) have been mentioned. It all depends where you live of course.
As for medication, I have heard that some people do well on Cymbalta alone (antidepressant) but many use with something like gabapentine and/or tramadol.
Trying some physio, not sitting (if at all pos) pacing activities and trying some prescription medications are the first things I would recommend to help but there are 3 NHS hospitals here now that can help too.
At least you have found HOPE and everyone will help as much as possible.
Take care
Helen

Thanks for the reply Helen

I haven't suggested it to the GP because to be honest I hadn't even heard of it until yesterday.

My main aim is to either:

i) convince myself this is the problem - at which point I can tackle the GP
OR
ii) rule it out - and continue the search.

I try not to take any medicines unless I absolutely have to - I recognise that for many there isn't a choice.

I mentioned on another thread that I have type 2 diabetes - and I wonder if that might have played a part (neuropathy).

I can walk fine - 20+ minutes on a treadmill (slow) doesn't seem to trigger it at all. It is sitting which is the main issue.

Saw your other post after seeing this one and it had me wondering as I know that people with diabetes do have to have some ops to address nerve entrapments BUT that seems to be type 1 diabetes and usually starts with tingling in hands and feet (extremities) so I hope you can rule that out. Please someone correct me if I am wrong (no medic)
To start with, I would have a look at the symptoms page (home pages) and see how many of your symptoms match up. If you tick these off and there are quite a few matches, you have already mention sitting pain, ejaculation pain and pain building through the day (maybe more?) and take the list to your GP ? see if he/she agrees.
I know you said that your GP had mentioned SI joint and you have had physio that didn't have any effect so that seems to have ruled that out. Did the physio find anything in your pelvis that WAS an issue or painful? piriformis, hip, ischeal tuberosity?
This is often a diagnosis of exclusion but I must say you do seem to be on the right track so far.

Helen

I have taken your advice and checked the symptoms listed on the home page.

Possible symptoms include:
burning - No
numbness - No
increased sensitivity - No
electric shock - No
stabbing pain - No
knife-like or aching pain: Yes (aching)
feeling of a lump or foreign body in the vagina or rectum - No
twisting or pinching - No
abnormal temperature sensations - Yes (some)
hot poker sensation - Yes
constipation - Occasionally
pain and straining with bowel movements - no pain, straining sometimes
straining or burning when urinating - no (interupted flow sometimes)
painful intercourse - Yes (on ejaculation and afterwards)
sexual dysfunction – No
persistent genital arousal disorder (genital arousal without desire) - No
the opposite problem - loss of sensation - No

That seems like an awful lot of 'NO's

In a nutshell its is aching in the sacral region - which usually starts late morning and gets worse throughout the day. By far the biggest issue is sitting - this irritates it very quickly. Toilet seats are okay - strangely driving seems okay.

I don't know where I saw it - but I saw some mention of it being like a toothache in your backside - this is it exactly.

So now I really don't know - I thought I might be on the right track - but there are so many symptoms which don't fit. I don't know!