PN or PNE Newbie

[Laura]

Hi all,
First let me say thanks to whoever started this website, and thanks to all who post. I've been coming here for about 3 weeks and have learned so much and hopefully I can eventually be a help to others.

I was having deep pelvic pain-but not terribly bad on my left side and went to PCP for answers. He thought it was a good idea to have a colonoscopy done to see if it was my intestines. I went to the surgeon who was going to do the 'oscopy for my pre-op. He started questioning me about my symptoms and decided to do a rectal on me. This surprised me as I've had colonoscopies before and never had a rectal exam before hand. He told me to lie on my side and he examined me. Didn't hurt just embarrassing. He told me I had nerve entrapment! While he was writing I asked him what's that? He continued writing and acted upset that I even asked him. He said I didn't need to know until it was sure thing. He wanted me to have a ct with contrast. I left very scared not understanding why he didn't want to talk to me about it.

When I came home I got on the net and found the info and was really frightened. He called me to tell me the ct was normal, I was @that point and said, "that means I don't have entrapment?" He said no that's not what it means, and he was going to send a note to my pcp to refer me to a neurologist. I live in a rural area neurologist 2.5hrs away.

My PCP put me on 10mg of amitriptiyine as I asked him for an anti-depressant because I couldn't sleep worrying about this condition. In the meantime waited for the referral for the neurologist to come (took about 3 wks). I called for appointment and had to explain about nerve entrapment in pelvis and she said "we don't treat anything like that here." Great! now what? I found a Dr Attaman D.O. in Seattle from this site I live about 6 hrs away. I had to practically beg my pcp for a another referral...for Attaman. My pcp acts like I'm a silly hysterical woman. He more or less acts like I'm jumping to conclusions and am too worried and he has treated other patients with just Amitripyline and they have gotten better, but he gave me the referral anyway.
Have now found out from making an appt. for the coming Saturday 7-23, Dr Attaman doesn't take my insurance. The visit alone is $300 but I'm still going.

My hope is I've caught this early and may only be PN not PNE . Have only had this about 6-7 months. I don't know how I got this condition, but best guess is I've had chronic constipation for about 3years. I know better than to strain, but have had to take senna or miralax to accomplish what should happen normally, and even than still hard to go sometimes. My diet is good (fiber lots) so I don't know. Prior to this condition I think I was spending too much time sitting too. Now I hardly ever sit and it does help, thanks to this website. Neither
Dr. told me to avoid sitting. Thank God I'm retired so I don't have to sit alot, and good husband drives and I can lie in back of car when we have to go somewhere. Not sitting is why I have lurked on this site and just today registered. I'm sitting on a pool noodle now to write this. Just got up and even with noodle it still bothers me to sit. Aside from sitting pain most of the time not too bad. The worst it's been is one day I was feeling ok and sat too long and had to use ice on crotch...burning not good. Also pain is worse on days that I have to move bowels more than once a day...maybe 4-5 trips as I don't feel I've had a complete movement and only go a little @ a time. The couple of days when I haven't had a bowel movement all day is when I feel the least amount of pain. It makes me think when movement is moving through intestines, it's somehow pressing on pudendal, and what can I possible do about that?

Can a dr. tell you have entrapment just by a rectal?
Does anyone know anything about Dr Attaman? Is there a chance this can go away with just lifestyle changes? I hope so. I would hate to have this get any worse.

Thanks for any help or suggestions you might have.

[Violet M]

Hello Laura and welcome to HOPE.

It may be a good thing you did not go ahead with the colonoscopy because it might have really irritated the pudendal nerve. To answer your question about diagnosis from a rectal exam -- yes, that can be an important step in the diagnosis because if the examiner knows the landmarks they can press along the course of the pudendal nerve and determine if it is tender or irritated. You said it didn't hurt but was the exam painful in any of the areas where he pressed? Typically if there's a nerve entrapment there would be some tenderness. He may have been checking for tight pelvic floor muscles which can also be an indication of a possible nerve problem. But I'm not sure why the ct scan -- that is not typically diagnostic of a nerve entrapment but maybe he was wanting to rule out other things. I think he should have given you more info!

I'm sorry, we have not heard from any of Dr. Attaman's patients so I can't give you much info about him. He sent the administrators an e-mail asking to be listed on the site an as I recall his license is in good standing. The short summary on the website is all I know about him. He is a DO which means he is an MD with some further training in osteopathy which deals with the musculoskeletal system but it sounds like he has some further training in interventional radiology. It sounds like Dr. Attaman is familiar with PN so hopefully you can get some valuable info from him. Your insurance may help cover part of the cost since there is no one in your network close enough -- you can check with your insurance company. If he wants to do a nerve block on you be sure to discuss with him the possible risks involved.

What about physical therapists -- are there any listed on the site who are closer to you?

Regarding constipation, it's very important to avoid it and to avoid straining so you will probably be ahead to take something on a regular basis so you don't get constipated. The goal is to keep stools soft -- I know one doc says the consistency of applesauce is best.

Sometimes PN goes away or at least gets better with lifestyle changes but you will have to be careful the rest of your life and avoid the things that caused it in the first place.

Take care,

Violet

[Laura]

Thanks Violet! In answer to your question if there was any pain during the rectal, no I don't recall any pain.

The reason I think he ordered ct was to rule out other conditions. I still don't understand (from reading here) how he can know if the nerve is actually entrapped from exam. Maybe he's just getting old because my PCp said he talked to him about my condition and he denied he told me I would need to see a neurologist.
I absolutely know he said if I had nerve entrapment that would be the next step.

I will post about Dr Attaman when I know something.

[calluna]

Hello Laura, welcome to the forum from me also!

I am so sorry that you've got this condition. But you will find lots of help and support here, there is masses of really good useful information in the main part of the website.

When I first started having PN pain, I was under the care of both a gynaecologist and a colo-rectal surgeon. The colorectal surgeon ordered a pelvic CT with contrast, he said it was just to be on the safe side and to make sure that 'nothing sinister' was going on. (It all came back clear.) I am sure you are right, and this is why your doctor ordered one for you, just to rule out other things.

By the way, sorry to be ignorant but what is a PCP?

Colonoscopy - yes, a risk, as Violet says. But sometimes it turns out to be ok. I also had a colonoscopy ordered by the colorectal chap - just to be on the safe side again! I was very worried beforehand but I can honestly say that it did not hurt at all, some discomfort at a couple of points but nothing worse than that. And afterwards I did not have increased pain. So if you do need to have one, please remember that although there is a risk that it might aggravate things, this isn't necessarily going to actually happen.

I agree with all that Violet says (of course!) and would just like to add something about constipation.

You don't mention fibre supplements specifically, but if you have been constipated for 3 years then I'm guessing you have at least considered them. I'm talking about either psyllium husk or isphagula husk, they are sold either as capsules, or loose powder to be stirred into water, sometimes they are flavoured. There are lots of them on the market. I used to take Fibogel. What they don't tell you is that they can end up actually causing a blockage if you are having difficulties physically emptying the bowel. (Not a nice experience, believe me.) So please be really careful if you are taking anything like this for any length of time.

What you say about not having pain when you've not had a BM, that really echoes with my experience. Not long ago I basically couldn't eat for a week - and that meant no BM's, of course. The pain level went right down. BMs are a major pain trigger for most of us here, I think, and it is very important to avoid getting constipated.

You mention lifestyle changes - yes, they are really important in managing this condition. I think that for many of us, they have provided more help than anything else. For example - please take care not to sit at all without an appropriate cushion. Lots of people here have found IC cushions to be good, there is also the Togu Air Active one which I got from Amazon because of a recommendation on this site, I cannot praise it too highly, I could not manage without mine.

But meds are useful too, and I do hope that you are getting some pain relief with the amitriptyline.

[Violet M]

I still don't understand (from reading here) how he can know if the nerve is actually entrapped from exam.

He can't know for sure if there's an entrapment just from the exam but if there is tenderness when pressing on the ischial spine on examination, according to the Nantes team that is suggestive of entrapment especially if it is on one side. Here's an excerpt from their article. http://pudendalhope.org/sites/default/f ... iteria.pdf

Presence of Exquisite Tenderness on Palpation of the Ischial Spine

Palpation of the ischial spine (posterior and slightly lateral)during digital rectal or vaginal examination is very often
tender. This does not constitute a true Tinel sign, as this palpation is locally tender, but does not trigger the distal pain
described by the patient. Many anatomical structures are situated at this level, making this tenderness very difficult to
interpret: passage of the pudendal nerve in the sacrospinous ligament, insertions of the sacrospinous ligament, ischiococcygeal fibers of levator ani muscles, diffuse hypersensitivity. Furthermore, tenderness of this region is not specific as it is also observed in asymptomatic subjects. However, unilateral tenderness at this site is suggestive.

[Laura]

Hello Laura, welcome to the forum from me also!

I am so sorry that you've got this condition. But you will find lots of help and support here, there is masses of really good useful information in the main part of the website.

When I first started having PN pain, I was under the care of both a gynaecologist and a colo-rectal surgeon. The colorectal surgeon ordered a pelvic CT with contrast, he said it was just to be on the safe side and to make sure that 'nothing sinister' was going on. (It all came back clear.) I am sure you are right, and this is why your doctor ordered one for you, just to rule out other things.

By the way, sorry to be ignorant but what is a PCP?

Colonoscopy - yes, a risk, as Violet says. But sometimes it turns out to be ok. I also had a colonoscopy ordered by the colorectal chap - just to be on the safe side again! I was very worried beforehand but I can honestly say that it did not hurt at all, some discomfort at a couple of points but nothing worse than that. And afterwards I did not have increased pain. So if you do need to have one, please remember that although there is a risk that it might aggravate things, this isn't necessarily going to actually happen.

I agree with all that Violet says (of course!) and would just like to add something about constipation.

You don't mention fibre supplements specifically, but if you have been constipated for 3 years then I'm guessing you have at least considered them. I'm talking about either psyllium husk or isphagula husk, they are sold either as capsules, or loose powder to be stirred into water, sometimes they are flavoured. There are lots of them on the market. I used to take Fibogel. What they don't tell you is that they can end up actually causing a blockage if you are having difficulties physically emptying the bowel. (Not a nice experience, believe me.) So please be really careful if you are taking anything like this for any length of time.

What you say about not having pain when you've not had a BM, that really echoes with my experience. Not long ago I basically couldn't eat for a week - and that meant no BM's, of course. The pain level went right down. BMs are a major pain trigger for most of us here, I think, and it is very important to avoid getting constipated.

You mention lifestyle changes - yes, they are really important in managing this condition. I think that for many of us, they have provided more help than anything else. For example - please take care not to sit at all without an appropriate cushion. Lots of people here have found IC cushions to be good, there is also the Togu Air Active one which I got from Amazon because of a recommendation on this site, I cannot praise it too highly, I could not manage without mine.
good at all
But meds are useful too, and I do hope that you are getting some pain relief with the amitriptyline.

Hi Calluna,

Thanks 4 all the useful info you have provided. For your information a pcp means 'primary care physician'. That is your regular dr. you see and he or she can refer you to a specialist if needed.
I sure did pay for my post. I typed it @ my desktop sitting on a pool noodle my hubby made for me. I had a lot of burning pain for the rest of the evening. Now I'm typing on my laptop lying on my side with the lap top sitting on a stool. It works except my shoulder is starting to get sore from holding my head up while I peck on the keys with one finger.
I sure took sitting for granted in the past. Now I never sit without something underneath and only for short periods. So far I might as well use nothing because nothing seems to help. I have used a donut, memory form pillow, and pool noodles, and most of the time pain goes from about 1 to 5. You mentioned the cushion you use. Are you able to sit with it for any amount of time and not have any increase in pain? THAT WOULD BE GREAT! I hardly ever sit anymore!
As for the Amitriptline I don't feel like it is doing any good @ all. Except for sitting, my pain is pretty manangeable. Besides sitting and post and pre bm pain it also hurts in my pelvis when I put my legs together (hard to describe). For example if I'm lying on my side to get off my bed in the morning putting my legs together hurts deep in left side of pelvis, but then it's over when I stand up and legs not together. I figure it rubs the nerve or something.

[calluna]

Thankyou Laura! - sounds like a PCP is the same as a GP over here.

Not being able to sit - yup, major inconvenience. It is slightly strange socially, not sitting - when people offer me a seat, particularly if I've got my stick with me, I just say thankyou but I prefer to stand, it is more comfortable for me. People always assume it is a back problem, I don't enlighten them.

But yes, the cushion really helps me, together with the meds I am taking. But I still can't sit for long periods, of course. You might find that rather than sitting to use the computer, it would be more helpful to raise the computer up so that you can use it standing up.

As Violet said, sometimes PN does get better with lifestyle changes. First thing to do is to stop making it worse - have a look on the main website here, there is lots of good information there. Don't do Kegels, don't cycle, don't lift weights....

With regard to pain relief - if the amitriptyline is not helping you with the pain - you are already on the usual maximum dose for pain relief - then you do need to let your doctor know.

Maybe it would be a good idea to think about adding in another med. Have a look in the Treatment Options section, again on the main website, there is a section on Medication management. Probably the next thing to add in would be gabapentin, lots of people get their best pain relief with a combination of an antidepressant (like amitriptyline) and an anticonvulsant (like gabapentin).

You could also think about tramadol, this does have some effect on neuropathic pain, I have found that it takes it down a notch.

And in the short term, ice is really really good.

[Violet M]

Hi Laura,

Just wanted to let you know that before my PNE surgery there weren't any cushions that worked well for me either -- but now I sit for many hours with a cushion. I had a set-up for a couple of years that allowed me to lie down while working on the computer. I did some standing too but that gets old pretty fast if you have any back or foot problems.

It sounds like you are doing all the right things. Hopefully you can get well just by being careful.