Possible PN and hoping for help!

[Meliora]

I am finally joining the board after gaining some much needed information. I have been having noticeable PN issues since last year that have been progressing and gotten far worse. I am still not sure what exactly started my symptoms, but my life has been almost 100% different since the beginning of this year. My symptoms initially started last fall as bladder spasms/infections/pain, an anal fissure, burning pulling sensation in my sacrum when I would lift anything heavy (such as my special needs child who is not much smaller than I,) sitting became slightly uncomfortable and things were different with sex.

I also during last fall decided to walk 2 miles on the treadmill (with no exercise in a long time) and felt a horrible right sided groin pain that I kept walking through. The problems seemed to get worse around this time as well. Whenever I would have sex my right side vaginally would have odd feelings and also my right leg/toes. The right side of my clitoris had more sensation and the other side much less at this point.

This year I had to do a lot of sitting (driving hundreds of miles,) and my sacral area, right hip, leg, toes started having issues again. Then I noticed when I sat to long I was actually going numb in certain areas (compressing the nerve.) I have gone to a dozen doctors and no one really seems to know what is wrong. I am now in terrible pain if I sit, have sex, bend, pretty much do anything. I no longer sit or drive and have to help with my so many things. I stand all day until I go to bed. Even laying down I feel like I am crushing the nerves, however the pain does not wake me once I am asleep. I feel like the muscle under my rectum is in spasm when I aggravate the nerve in any way and/or the nerve is swollen. I have altered sensation in some areas and horrible pain in others.

I have seen a couple pain management doctors and one suggests a sympathetic lumbar block, the other a caudal/block steroid injection. Has anyone had either of these blocks done with success I contacted Dr. Potter's office and they sent the protocol to a facility near me, that has a 3 Telsa machine (still waiting to get the MRI done.) I have had two other pelvic MRI's (not Dr. Potter's protocol) and one showed possible pelvic congestion. According to the pain doctor, it would seem I have some sort of pudendal neuropathy/general neuropathy. Three neurologists have not been able to figure out my issues! I am hoping to get some sort of relief as I have let this go on too long, my family needs me well! It's hard (as you all know) dealing with terrible pain and trying to just live life, can be very depressing.

Meliora

[calluna]

Good morning Meliora and welcome to the forum.

I am so sorry to hear that you are in such pain and that things are so difficult for you. PN is so hard to deal with, especially at the beginning. However it is good to hear that you have a diagnosis, and also good to hear that some investigations are under way.

It sounds as if you are not yet on any medications for the pain? - I do hope that your doctor sorts this out soon. I'd say this ought to be a priority. There are many things that will help but standard pain meds are not on the list as neuropathic pain does not respond to them. Many of us have had help from the combination of an antidepressant (amitriptyline/nortriptyline/duloxetine) and anticonvulsant (gabapentin/pregabalin).

I don't know of anyone who has had either a lumbar block or a caudal block, maybe someone will be along soon who knows more than I do.

I do think it would be a good idea to have your case reviewed by a doctor who has a particular interest in PN, there is a list on the home pages of this website.

Oh - and what an excellent screen name! Something we all hope for.

[helenlegs 11]

Hi Melioria, welcome
As you mentioned you have been diagnosed with a neuropathy but finding which nerve(s) and where can be tricky. Unfortuanately, neurosurgeons typically look at the lower spine with lower extremity nerve problems and don't know so much about the pelvic area and nerve issues there.
The planned blocks are not targeting any specific nerve so I doubt that they will get you any further diagnostically (not medical maybe someone more knowledgeable could clarify this) but could give you some pain relief as these shots are covering more area.
You have mentioned areas that are served by the pudendal nerve so I think the Dr's are right to pursue that diagnosis but to do that more specifically, it would need to be a more targeted pudendal nerve block.
Quite a few people who have been diagnosed with pudendal neuropathy do have some leg and feet issues too. That could be to do with pain 'wind up', 'central sensitisation' or 'nerve cross talk' (all amounts to the same thing pain wise) which can sometimes happen in the complicated pelvic area especially.
However, it could be because there is more than one nerve compromised, in your case possibly the pudendal (saddle area) and sciatic (leg/foot). I would get them to check your piriformis muscle too, as both of these nerves pass near this muscle which stretches from the sciatic notch to the hip in the mid buttock. You would usually have specific buttock pain where the P muscle is with this condition so it will be fairly easy to rule out.
The other 'complication' is that a compromised pudendal nerve can cause a pain wind up which may involve the piriformis muscle as a secondary problem. So it can be a difficult problem to identify. At this stage that isn't too much of an issue as the medication advice from Calluna could help whichever pathology.
My advice would be to see if there is a PN aware Dr (from the home pages) Hopefully there is someone near you. If not, do not underestimate the role of a PN aware physiotherapist with any pelvic neuropathies. There are quite a few people on this forum who have had the first correct diagnosis from a PT when doctors have struggled. Again there is a list on the home pages here. Hopefully the up and coming 3T scan will give more information.
Physiotherapy may help the problem too as long as you make sure they are PN aware.
You mentioned that your problems seem to have started gradually so there is every chance that conservative treatment (PT and PN block) will help. Let us know how you get on, fingers crossed you will be able to identify the problem soon so that a good treatment plan can be formatted.
Good luck.
Helen

[Meliora]

Thank you Calluna and Helen for your replies! Calluna, I have tried Lyrica - made me feel like I had severe brain fog, Tegretol - all over rash, Amytriptaline - reaction as well, now I am supposed to try imiprimine. I am sensitive to meds unfortunately, I take lots of motrin these days, but will keep trying to find something. I wish I lived by a PN aware doctor, but would have to travel. I am not sure how I could make the trip, even bending is an issue...much less sitting for a plane/car ride. I have been laying down in the back of my parents borrowed mini van to get places, but after a short time, even laying down in the car hurts. I know I have to do something though. I plan on possibly having a block this week. I know the blocks I mentioned are not diagnostic, but that was all that was offered for now. At least it might help my pain a little. I was also told it would help blood flow and improve the functioning of the nerve. Strangely enough things somewhat improve for me with my cycles, not so much with pain, more sensation wise. I have terrible perineum/vaginal pain, but other areas seem "off." Helen, I have wondered about cross talk of the nerves and even wonder if I have more than one nerve inflamed/trapped. How do people on the board travel with such pain, etc. My compression with sitting is so bad, I have horrible pain and also numbness from sitting. Oh and Calluna, I thought the name worked well! Thank you!

[Violet M]

Meliora, welcome to the forum.

Since you don't live near a PN doc, if you could find a PT who is specifically trained to treat PN that would be a good place to start. Maybe you want to narrow down your diagnosis a bit more with an evaluation from a trained PT and from the 3T MRI before trying the caudal and lumbar blocks because they aren't without risk (arachnoiditis, etc.) and they aren't going to help if you have PNE. Or at least you could ask the doc who is recommending them what the success rate is for your symptoms and what the risks are.

[HerMajesty]

Hi you remind me a bit of myself both with the exacerbating factors (walking for excercise / long driving trips), and the involvement of more than just pudendal (I started in the toes and worked my way up) As you can see from my signature, my underlying problems were SIJD and Tarlov cysts. Tarlov cysts in particular cause sacral pain and lower extremity neuropathies in addition to pudendal. I just want you to alert you to this possibility before you get and MRI. Only a small percentage of people with Tarlov cysts have nerve compression leading to symptoms (Tarlov Cyst Disease), and many radiologists are trained to ignore tarlov cysts as asymptomatic artifact, and not mention them on the report. So to rule out or pinpoint this possibility, when you go in for your MRI have the front desk and / or technician write a prominent note for the radiologist: "PLEASE NOTE ANY TARLOV CYSTS ON REPORT". That way there will be no question.
Only a PT is going to diagnose SIJD as it is a movement dysfunction requiring hands - on diagnosis, something Doctors are not interested in. So definitely a PT is a great suggestion and if there is no pelvic floor PT near you, use a sports PT or other PT with training in Manual Therapy.
If you are wondering what the heck I am talking about when I mention Tarlov Cysts, here is the best website on the subject: http://login.npwebsiteservices.com/Tarl ... //Home.asp
And BTW, NO MORE LONG CAR TRIPS FOR YOU! I was gradually getting worse until 2009, but then I did a 3600 mile road trip and came home almost 100% disabled. I had to do a few months of PT and start meds just to get functioning again. Better to get treatment before you hurt yourself that bad.

[helenlegs 11]

Hi again Meliora,
If you can possibly get to a PT that would be such a good plan. It would need to be before any block to get a good evaluation. If there are non on the list near you maybe you could phone or email around any that are near and ask if they have any pelvic expertise. I wouldn't go if they haven't however.
Sitting is the big nightmare! There are many adaptations that are recounted on here that have helped people. However because the site of the actual problem can vary there is not a suit one suits all solution. The things that usually help are
1. Changing position (a lot) I have a 'better' side so tend to favour that. Good for shorter journeys but would help on longer ones.
2. Cushions. Many people make their own, some cut from spongy garden kneelers, even adapted toilet seats. There are branded cushions available, its a trail and error thing and they do tend to be expensive. If you do try any make sure they are returnable if no good.
3 Ice, everyone's favourite
4. kneeling . . . . even if it means travelling backwards for a while. I HAD to kneel on the floor of my husbands van for some miles a while ago. Totally unsafe and illegal but thankfully I was too low to spot. . . . . .and he didn't crash ! Not advised tho'
5. Standing (I stand and lean on by preference) on train and plane journeys when possible.
6. I often sit with my worst side off the seat and if there is a chair with arms ((plane. train) I support myself off the seat a bit with those for a while too.
7.Some people book 2 seats for longer plane/train journeys or try and travel at quieter times when there would be more seat availability.
8. Know that it will be difficult travelling but realise that any 'damage is already done' and you will get back to base line pain in time. You will probably HAVE to travel to get 'fixed'
9.Any tipple of choice
Take care,
Helen
There may be more travelling tips but that's all I can think of for now.

[Meliora]

Violet, I am concerned about the blocks. I just am scared to do "nothing." One doctor was also concerned because I have let this go on for so long, maybe that is the reason for the steroid. I also have swelling of the nerve, I can actually feel it when it happens....ouch! I do want to be cautious though and think risks are certainly real. (off topic, but I have a child with autism, so I think there are risks with anything foreign in the body, vaccinations, medications, etc.) It's a hard call on benefits vs risks!

Her Majesty, I hear you on the car trips and sitting! I soooo WISH I could undo all this damage! I have had two pelvic MRI's but no one mentioned any Tarlov Cysts, just an ovarian one. I will have to ask when I have my "Potter protocol" MRI done, it is not being read by her though.

Helen, thank you for the travel tips! Lots of good ideas! I know I will have to travel at some point, the thought of the pain....lions and tigers and bears...OH MY! I have tried a few cushions and the cut out center folds inward and crushes me "down there." I even tried the Tush Cush. Maybe I need to make my own!

I have been to 3 PT's and only one helped even a little. One PT actually hurt me (by not knowing what she was doing I guess,) that I got MUCH MUCH worse. My husband was not happy as it caused me WAY more pain/problems for any sort of intimate life. I know there are good PT's out there, I just have not been able to find one and not sure I want to go to another one.

Has anyone tried acupuncture, I have friends (who do not have PN) that think it is really helpful. Also, how to people "bend?" Is crouching okay or should I just use a grabber. I am having to rely more and more on my family to get things done at the house and I actually miss doing my own housework! I miss driving and going on dates with hubby though too!

[helenlegs 11]

Also, how do people "bend?" Is crouching okay or should I just use a grabber. I am having to rely more and more on my family to get things done

If you go by the Nantes Criteria the pain is from compression, therefore sitting causes pain while sitting on a toilet seat (obviously the same position) relieves pain. This is true in the main, I think especially initially. BUT it also stated that a nerve should 'be freely mobile' to avoid compression on ligamentous structures and given the fact that it is already compromised to some extent, any crouching will put a further strain on the already taut nerve. I don't think one bend or crouch does a lot to increase the pain, but much more, the more stress on the nerve. That's seems to be the way it is with me anyway.
Good luck Meliora
Take care,
Helen

[HerMajesty]

I have had two pelvic MRI's but no one mentioned any Tarlov Cysts, just an ovarian one. I will have to ask when I have my "Potter protocol" MRI done, it is not being read by her though.

You can also request that a radiologist look at your prior pelvic MRI's again, and note yes or no for tarlov cysts: They are not hard to find, just often ignored. It would be an economical thing to do before the Potter MRI, because if you do have cysts you would want to take your plan in another direction: you would get a full sacral MRI from a local provider and see a tarlov cys specialist instead of investing in another pelvic MRI. If you have a period of time before your 3T appointment, i would suggest posing the tarlov cyst question to a radiologist in the interim.