First Time Post - My Story and All Input Welcome!

[Meliora]

I hope you find some good doctors at C Clinic! I liked having my embolization by an interventional radiologist because it was so minimally invasive. All I have is a tiny scar where the doctor entered in my upper/front thigh through a vessel.

I have actually have had PN issues for a while (just did not realize what it was,) but in February everything became severe. I could sit before then, just had some mild discomfort at times. I have some of your PN issues, the rectal tightning (plus I have spasms) and the fullness changing the pain. I understand family needing you well....I feel the same way, my family needs me well too! I have kiddos and cannot even drive them to school anymore or go out with my husband (hard to eat out or go to a movie when you are standing.) Makes me very very sad.

I am planning on surgery....we shall see if it works. I sure hope so!

[HerMajesty]

looking at entire the MRI, the only things I can add are:
1. I had mentioned the possibility of piriformis syndrome in my 1st post, and Dr. Potter rules that out by stating that the sciatic nerve is not piercing the piriformis. So, it' can't be entrapped / compressed by the piriformis.
2. There is mention of tendonosis and that is not a normal finding, but I do not know what bearing if any it would have on your neuro symptoms.

[helenlegs 11]

Hi again,
With ref to your Potter MRI, I would just like to add that many doctors don't think imaging (at the moment) is always helpful. I wouldn't exactly say that however, I think it must be helpful to some degree BUT the most helpful thing is to combine those findings with a detailed history of problems, onset and description of pain and a knowledgeable clinical examination.
Any one of those things in exclusion is often not enough, unless something did shine out in answer to the pain.
Your MRI does point to the varices as a problem worth pursuing. Although that alone probably wouldn't answer all of the problems you are experiencing.
Maybe added tension and stress, internalising problems etc could though, especially when added to that pudendal pain caused by varices. I would still go for some cognitive, relaxing therapies to help as they can always help whatever the reason for the pain.
Do learn as much as you can about the whole problem (which obviously you have and are doing) but also about your own body and pain so that a clinical examination can be of the most benefit to you. I have heard too many times things like 'Dr pressed in whichever place and because I didn't hit the roof they say I don't have PN' or something similar. Once we can tell our own pain story better it gives a rounder more comprehensive picture.
I have 'investigated' my own pelvic nerve issues with my own now 'knowledgeable clinical examination' and hell it hurts (and sometimes continues to hurt) but at least I will have a response to the 'you didn't hit the roof' reply now. No, but I would if you did thi. . . .AAArgh!
I really do think that a good clinical examination, along with a patients history, then maybe, backed with imaging, is the way to go. IF the imaging shows nothing conclusive however it should be ignored as the exam and history taking are mandatory.
I am just generalising here of course.
For you, I would also still get a PT evaluation of your piriformis muscles, even do some very easy stretches and see 1. if it is tight or causes pain or discomfort.
2. Helps. Any piriformis problems are usually secondary to PN problems.
You may have over done the exercising program as tendinosis is repeated injury to the tendons which could be due to strain on the gluteal muscles mentioned. Muscle spasm could also contribute to this. I have 'gross enthesitis' showing on a scan I had, at similar places (gluteaus min and medius) but I did have a massive muscle spasm that kept me totally stuck for about 5 days which I think contributed. I think that my spasmed piriformis muscle doesn't help either, although surprisingly there is no enthesitis mentioned for that muscle. The enthesies is where the tendons insert into the bone apparently. I must admit that no one has mentioned this as being able to be part of my pathology but I do think that it shows muscle tension as I don't think this or tendinosis can happen otherwise??
Definitely try something that will help you relax.
Take care
Helen

[greeneyes]

Matt:

I thought I'd add my two cents worth here since I had a SCS implanted about 3 years ago. I agree that it is too soon to consider an implant. now. By the time I got mine I'd had chronic pain for 15 years. I have low back pain that started in 1995 and pelvic pain that began around 2006. I've had numerous diagnostic tests but nobody has been able to explain why my back and pelvis hurt. Surgery is not an option and I chose to get the SCS because there wasn't much else I hadn't already tried. I know it's hard to be patient when you are in so much pain but you still have other options. I'm glad you found a sympathetic pain doctor and I hope you find some answers soon.

Greeneyes

[Thunderman69]

Helen,

You know... I never really thought to do anything other than go off of what my body is telling me.. So your saying to kinda feel around, press certain areas and what not.. If i understand you correctly. The trouble is most of my pain is rectal and straight up through the bowel and into the middle lower back / coccyx area. There is absolutely no way in hell I am touching my bum ... so I really cant get a good clinical on me self unfortunately. No more internal exams!! . I had like 8 DRE's and my prostate massaged several times just 8 months ago. Bad times to say the least, and of course all for naught as they found nothing wrong with me of course. The last time I had an invasive procedure was a colonoscopy last April and it put me in horrific pain for almost 6 weeks and forced me to the emergency room. As a matter of fact, the thoughts crossed my mind many times that something went wrong during that procedure because Ive been 10x worse since I had it done. I never had bowel incontinence issues till after that.. I have light incontinence now thats not too bad but it exists nonetheless. As far as relaxing, well I dont know if thats ever gonna happen I was tightly wound before all this happened, and a definite type A kind of person. I have a real hard time accepting this, and I want to get back to work so its really really difficult. However, my wife and I agreed that its time for some counseling with a professional that has the background to handle chronic pain patients. I am trying to support a family and battle this thing and deal with everday life..yada yada yada... But I get it.

Greeneyes.,

Thanks so much for the two cents its greatly appreciated. I am so sorry you have had to suffer for so long.. Its just not right that anyone should have to deal with that.
I understand where you are coming from in that its early for surgical considerations however time is running out for me at work. I have a new home with a big mortgage, and two teenagers. My employer was wonderful over the last year dealing with me and this problem. But, I am in sales and its a new year and I will have to start producing. If I dont do something to reduce these pain levels somehow I fear I will remain mostly bedridden and unable to work. Which means I could get let go from my job and I would be in a world a poop. From evrything I have read, Its very difficult to get disability for this condition.. As if the pain is not enough with this hideous disease, I lay awake every night worrying about how in the hell I am gonna make it if I lose my job... ...Yes My pain doctor is wonderful and sympathetic to my pain but he is the one that wants to implant the SCS. He feels that I am a great candidate after only one year of this PN issue.. And he has diagnosed me with PN by the way. I dont think I put that it in the original post so thats important.. He is not a believer in surgery for PNE. Quite frankly, he is really moving this whole SCS along rather quickly - he already gave me the pre-surgery counselor referral to have the psychological exam before surgery. He is ready to go!
Its hard for me to decide because he is telling me that it has the potential to significantly help me. Did this SCS reduce your pain?

Matt

[helenlegs 11]

There is absolutely no way in hell I am touching my bum ...

Matt

Well it wasn't a challenge anyway Matt
Actually there are some skin rolling 'tests' that can help identify the problem more precisely. I know that Dr Beco uses this technique for diagnosis.
It may not work in all cases but as all branches of the pudendal nerve have termini near the skin, additional pressure from skin rolling will usually cause greater pain than would usually be associated with this action if the the right spot is located.
I have to add that it can cause a flair of symptoms although this will subside.
As you mention later in your post , you do have had a PN diagnosis (don't thin k I realised that) so it's not necessary. PHEW

[flyer28]

I would agree with the opinion of Helen and the others, that we have to proceed extremely cautious with our confidence concerning MRI and other imaging tools. There is no standard how the entrapment "look like". I had also "certain fibrotic thickening in my right dorsal canal" but am not confident that this is the one and only reason of my pain, because the other hints are contradicting> no tinnel sign, no sitting pain, no relief with ultrasound guided dorsal nerve block...These facts somehow overweight the MRI in my eyes. trying to continue with PT, had wonderful 15 days in early January after I guess 6th session of PT, now feeling miserable again...

[Thunderman69]

Helen -

Thanks much for that PDF! Outstanding stuff... i tried the roll test and couldnt get the pain sensations HOWEVER when I push in the middle of my right butt cheek which is where I believe the ischial tuberosities (sp?) are located I got significant, unusual pain that seems to radiate and make my rectum and other symptoms flare(mildly).. I cant emphasize how much I appreciate you pointing out self examination to me. I wouldnt have started pushing on things if you wouldnt have, and I wouldnt be studying my own more in depth ! Now, I dont know if that pain is related but it sure seems like it... Maybe someone can tell me if thats indeed a pain point for pelvic nerve issues? Cheers Helen.

Flyer,

No doubt... i agree that imaging alone is meaningless. There is no doubt in my mind that I have some form of entrapment going on here. Taking a birds eye view, and looking at my case starting from last February up till now, it matches evrything I have read here almost step by step what the timeline looks like when the nerve is left trapped and only medications, therapies etc. are utilized to help with the pain. I had a period of time that lasted almost 3 months where I felt better and went back to my normal life. The physical stresses as such took a toll on the nerve and as we all know the major pain flare symptoms are often delayed by many days, weeks and sometimes months. It all came back to hit me on December 28 th and now I am in the absolute worse shape I have been in since this hideous journey began. For all practical purposes I am bedridden.. Only able to stay on my feet for a couple hours at a time without heavy doses of opiates. I lay in bed and rotate ice packs all day until the nerve calms down at night around 11:00 pm or so... Sleep till 7 am.. Wake up... And its like an evil version of the movie GROUNDHOG DAY. This exact same routine has been going steady now for over 3 weeks, and its got me extremely nervous that its more than just a major FLARE. HOW LONG WILL IT LAST.? My great fear is that I did significantly more damage and this is just where I am gonna stay.... I am praying I can come out of this thing and back to my baseline for my family, and myself... Scary times to say the least.

Matt

[flyer28]

Thunderman69, I feel empathy for you. I know what it is these ups and downs..without clear cut diagnosis and treatment.
According to my experience, every flare-up had an end and the pain got back to baseline values. Hope that it will be your case too.
all the best

[Lernica]

Let me just chime in for a bit. Matt, I'm so sorry to hear about your journey but I too was bedridden and am now about 80% better. You will too. I agree with the others that it is still too early for you to think about a neurostimulator until you can figure out the source of your pain.

Like Violet observed, it sounds like your tight muscles are now getting involved in the party which is leading to multiple neuropathies throughout your body. It's not a mystery; it's a known complication of prolonged bed rest and inactivity, combined with a heightened nervous system from all the pain you've been in.

When my muscles were doing the same thing, I too could not tolerate pelvic (internal) PT. But like the others I think that eventually it should be part of your plan for full recovery.

The reason I'm posting (since so far I have not said anything that the others haven't) is to tell you that something which helped me IMMENSELY early on in my PN journey was a few rounds of electro shockwave therapy (ESWT) to loosen up all the muscles that were contracting all over my lower body and causing the confounding multiple pain symptoms. For your convenience I am attaching the link to my ESWT story here: http://www.pudendalhope.info/forum/view ... a+cornwall

My ESWT story ends where the story to repair my hips through arthroscopic surgery begins. You and I are (were) both runners, and that may not be a coincidence. For your convenience, here is a thread about the connection between hip problems and pelvic pain: http://www.pudendalhope.info/forum/view ... f=9&t=3487.

BTW, my principal pain symptoms were rectal and perineum pain, and my colonoscopies were always extremely painful in contrast to the clear test results. Given our similarities, I am confident that you will get to the bottom of this (no pun intended) and that, with patience, you will eventually resume a full and active life.