Health Organization for Pudendal Education

I am a 55 year old female. 4 months ago I started getting pain down below which felt like a dull aching pain. Can't actually pin point where it is coming from - sometimes it feels likes its rectal and sometimes in my buttocks and sometimes at the front It seems to move around. Don't seem to have it at night or in the morning but gets worse as the day goes on. I can have the pain for a few days and then it disappears for a few days and just as I think it has gone it comes back. It is worse when sitting and not so bad when I am walking around. My doctor is completely mystified. Have had a cervical smear done and that was OK and now waiting to see a colon/rectal doctor at the hospital. Does this sound like PN symptoms? Please help I am getting desparate.

Hi Jackie - and welcome to the forum.

Those do sound like PN symptoms, particularly the pain getting worse when you sit, and worse as the day goes on. So you are among friends here.

First off, I'd strongly recommend that you try to avoid sitting - except with a cushion that helps, if you can find one. Lots of recommendations on the forums.

You may find the colo-rectal doc helpful actually - the surgeon who did the op for me a few weeks back was a colo-rectal surgeon and he certainly knew all about PN. I would suggest looking through the list of doctors here on HOPE - in fact the whole of the information section in the home pages, all very much worth reading.

One other thing - it can be useful to print out a copy of the pain scale, then doctors know what you are actually experiencing. There is a fact sheet for medical professionals as well - link - which can be very useful too.

Hopefully your doctor will be considering medications for neuropathic pain, as well - there are lots of options available.

Whereabouts in the world do you live, by the way?

Hi I live in Romford in Essex, UK- thanks so much for your response it is so helpful/ One of the drugs I take is amitriptyline at night which was prescribed for my hot flushes/night sweats and this really seems to help - is this possible? It is such a comfort to know that all this pain and discomfort over the past 4 months might actually have a cause.

Jackie,
Amitriptyline is a drug they use for nerve pain and one of those Calluna was talking about. Taking it took away shooting nerve pain I had in my toes but I could not handle increasing it to help with the pelvic nerve so I am using Gabapentin/neurontin for that. Lyrica is another . You may want to check the area for UK at the bottom of the forum for info close to where you live.
Janet

Good morning Jackie - yes indeed as Janet says, amitriptyline is one of the meds used for neuropathic pain. In the information pages you'll see TCAs mentioned - tricyclic antidepressants - and amitriptyline is one of these. It is usually prescribed first because it is very very cheap - I think it costs something like 84p for 28 days supply. Usual dose for pain relief is not more than 50mg.

By the way, I don't know if you've found this in the forums yet - NICE guidelines for neuropathic pain. As you are already on amitriptyline and are not getting satisfactory pain relief then the guidelines suggest adding in (or changing to) pregabalin.

Lots of us have found pregabalin to be helpful - for me it was like a magic pill - but some GPs are reluctant to prescribe it because it is not one of the cheap drugs - cost is something like £64 for 28 days. Another alternative is gabapentin, this tends to have more side effects but is cheaper.

Taking in a copy of these guidelines has helped people to get prescribed this med.

Thanks for all your help re medication. Trouble is I am being prescribed amitriptyline for night sweats and hot flushes due to the menopause. I have yet to see someone and persuade them that I might have PN symptoms. Would my GP listen if I went armed with literature do you think? I have done all the homework myself which is how I arrived at this forum but have not been diagnosed with anything yet.

Jackie,
It may depend on your GP, if you think they'd be open then give it a try or start checking into pt and doctors on this website and/or a pain specialist.
Janet

jackieandkev wrote: Would my GP listen if I went armed with literature do you think? I have done all the homework myself which is how I arrived at this forum but have not been diagnosed with anything yet.

Hi there Jackie
All I can say is that it is worth a try. I guess you almost have to start there, as even to get a private appointment you need your GP to refer you. What is your GP like generally? Do you think they are a forward thinker who can take a bit of patient empowerment? I hope so Do you have a date yet for the colon/rectal dr hospital appointment? PN is sometimes a diagnosis of exclusion and many have had to go through the gynae/urological tests first, at least any problems there are usually easy to rule out. The problem being that the NHS aren't noted for speed.
Take care,
Helen

Jackie, yes, it's possible that amitriptyline can help with the pain of pudendal neuralgia - so if it seems to be helping it would make sense to just continue with it. If you go to the UK section of the forum I think there is a discussion about physiotherapists who treat patients with pudendal neuralgia. That might be another option to try while you are searching for the right doctor.

Violet

Hello to All,
I'm happy I have found This forum since it has allowed me to understand and convey to my doctors what has been happening to me in the last 4 months.

1 History.
I'm a 43 yr old male active 193 lb and went to the gym every other day.I have been working for UPS for 24 yrs.10 of which as a tractor trailor driver. In October of 2011 a took a new position with UPS driving 5100 miles a week. Myself and a coworker would leave each week for four days.Driving consisted of 10 hour shift then 10 hour in the sleeper bunk. Total drive time in the seat was 44 hours. Total time on the road 89.7 hours. We would stop every 3 to 4 hour to stretch and use the bathroom.

2. In January 2012 I started to get pain while urinating and iratation at the tip of penis. Went to my family Doc and was Put on antibiotics for urinary track infection. Test found no bacteria and no Prostatitis no STD.


3. Febuary 2012 Was refers to urologist and under went a Cystoscopy. Test where negative for any urological problems.
Although in a small statement made by the DR just as I came out of the anistisia to my wife was I may have some pudendal pain.or pelvic floor spasms. Since I was just coming out othe anistisia I did not pick his comment up. Thank god my wife did. the urologist said there was nothing more he could do for me and referred me back to my family Doc.

4. March I went back to my family doc and that the urologist said it may be my pudendal nerve. Or pelic floor spasms. She put me on pregisone for 30 days at 40 mgs to see if it would alleviate and pain and it did to an extent.

I continued to work and The pain started to manifest as a sharp stabbing pain in my urethra and presure like feeling in my Perineum that made my uretha pain worse. I can only describe the pain as a worm being pushed thru may penis. I was driving ten hours and going insane. I started to buy seat cushions. I have about ten now and none really seem to work. I also started to change my position while i was driving . I was sitting more on the back of my butt then in a more upright position. By the time the pregisone started to wear of the pain spiked. I now had pain in which I now know as the piriformis muscles. Both side and in my penis.
As of 4/15 /12 I have lost almost 18 pound due to pain and not sitting down. No gym anymore. I do housework and yardwork with little pain. I do however have the burning in both butt checks while standind But I can deal with that pain. It is when I sit that penis pain and Piriformis pain really kick in

I am now out of work on disability and have been for the last 4 weeks.

I have had the following tests done.

MRI of the pelvis+ bilateral pudendal nerve. From ischial spine to sacrospial ligament beneath sacrospial ligament and the Alcocks canal. Came back negative
MRI of the lower lumbar .came back negative.

I have been refered to doctor at rothem institute in NJ,he reviewed the MRI and said you would not be able see if ithe pudendal nerve was intraped. He believes it Piriformis syndrome and has given me PT. it seem to help but as soon as I sit down the pain creeps back within minutes
I was also referd to pain management and was scheduled for a ganglion impairment injection on march 14.
In the meantime I had a appointment with another urologist to get a second opion.The doctor came high regarded and is at Jefferson hospital in Philadelphia. I was really surpraised he has had some paitiant that have the same symptoms. He thinks it is the Piriformis and pelicic floor muscles as well but told me NOT to get the ganglion inj that it woul not help. I canceled the ganglion injection. He told me to continue PT and pelvic floor exercises.

I have been getting trigger point massage with some success. Both myself and the therapist can feel the Piriformis in spasm.
But at times it only seems to aggravate it.

I have noticed the lack of some sensation in my genital BUt not numbness.
I have no issues with bowel moments or urinating.
No issues with sexual function or ejaculation .

I have another appointment tommarow with pain management to see if he can give me Botox in the Piriformis muscles both sides.


If anyone can please answer these question for me I would be much appreciative

1. Can Piriformis syndrome cause pudendal neurophathy i.e, loss of sensation in the genitals,And pain in the urithra.

2.can u have pudendal neuropathy and not have a pudendal nerve intrapment.

3,if I return to work with limeted driving, half hour driving and stoping for at least 20 mins. Will my symptoms get worse.

4. Is there any doctors NJ, Pa, Ny who specialize in Piriformis and pudendal neuropathy.

5.has any one been cured of either Piriformis syndrome or pudendel neuropathy with out surgery

6.if I get the Botox in the Piriformis muscle And have no more penis will that rule out PNE.



Thank you.