New Member - Kathy

[kathyd]

hi everyone
I want to say hi and introduce myself. I have been suffering for over 4yrs and have read witin interest your posts.
I have learned the hard way about the road blocks we face.
My symptoms started with IC stuff ( horrible constant urinary urge, and feeling that my bladder was always full.) I relentlessly pursued the Ic treatments and researched my head off.. Treatments didn't work.
Many drugs had side effects that made it even harder to empty my bladder.
I also had loads of PT with some really well known folks w/out benefit, and now feel that all that poking around inside my body may have kicked off the sit pain..About 2 yrs ago sit pain gradually came on.. I have seen many docs but believe I have yet to be properly diagnosed and treated. I've had several nerve blocks (these may have hurt me and maybe even made my sit pain as bad it is today. ( can't sit w/out pain) and for about 2mos,I find now that even local driving is pain inducing, both in perineum and in sit bones.
I have just had the Potter MRI I have seen the report but am waiting for my docs to read the films themselves and advise me as to whether I have nerve compression/entrapment.. its not clear from the written report.
I don't want the surgery unless I know we are going in there to find something that really exists, and not just looking for a needle in the old haystack. I feel like all I've tried has made me worse and don't want to risk getting even worse, from a surgery which the doc admits there is no follow up and real stats to go on. How shameful is that in the year 2010!!
I believe i am still suffertng due to all the conflicting opinions I have gotten, the lack of knowledge, and most of all the incredible fear this journey has instilled in me. I think if i had just left well enough alone, I would be in better shape.
Any opinions on who is best surgeon? (I am considering Conway) he is closer to me (but still a 6hr drive! yikes. i spoke to him but didn't learn much (very non-comittal) He wants to see me, but not sure if I want to put my body thru the agony of the trip (maybe for nothing.
I am a 50 yr old mom of 2 teens and a little girl. I have a great husband who is suffering terribly w/me trying to keep things going here at home, and deal with my fear and depression. ( I am not the person I used to be,and so want her back!
Also I have tried soo many cushions ...they don't help much.. and was interested in what cushion those with both sit bone and perineal pain have found to help..I just want to drive again and be able to relax.
I can't find a comfy position (just walking)
The docs take forever to get back to us ( for all the reasons you guys mentioned) business, and not giving pelvic pain the attention it deserves!
I am really looking for hope and know I need to relax, stop being so afraid (get my Central Nervous System to wind down)
Sorry to ramble here
Thx and best regards
Kathy

[HerMajesty]

Hi Kathy,

Welcome!

I know you've been reading a bit here but to point out some specific site features:

-there is a section entitled "Seating and Physical Lifestyle adaptations"; you might want to browse there for a cushion. There is also a discussion of some options on the website itself, here: http://www.pudendalhope.info/node/45

- In the "MRI / MRN" section, some people have been posting their radiology reports. If you want to post yours, sometimes the patients give better feedback than the Docs in my opinion.

I started with interstitial cystitis before pudendal neuralgia too. To solve both at once, it is important to identify the underlying condition in your pelvis. I doubt the PT led to your additional problems as I had no PT between the IC and PN; it is just that once one thing goes wrong in the pelvis, everything seems to start to fall like dominoes. I hope the MRI was able to identify the problem for you; Dr. Potter has a very good rep. My problem was pelvic joint dysfunction which will not usually show up on an imaging test, although if you had competent PT they should have been able to rule that out. Sounds like you are doing all the right things to get information.

[Celeste]

My one piece of advice is to pick the doctor based on the treatment he offers; they're all different. If you go to Dr. Conway, the surgery he offers is the TIR approach, so be sure that's the one you are interested in. He observed and rejected Dr. Hibner's methods, but has said he is going to learn Dr. Antolak's methods at some point in the future. Not trying to confuse you, just putting this out there in case it wasn't otherwise obvious.

[gracie]

Hi Kathy,
I had TIR surgery with Dr. Conway in Feb 2010. I really can't say it cured me, but the pain is less. I can sit for short periods and the burning pain is not as bad. It took a very long time to get to this point. He has told me that it can take 18 mos to 2yrs to know for sure if the surgery is successful. Last I spoke with him, he said he may be offering the TG approach in the future. I am hoping that I won't need it. It is hard to decide who to go to. I am a single Mom of two young daughters. It would be extremely difficult for me to travel very far away. I chose Dr. Conway because he is closer (4hrs) and after I met him he did seem like he truly wanted to help me. When I went for my follow up he said he would fight with me as long as I wanted to fight. I told him that would be until I am cured. You should definitely go with the Dr. you think can help you the most. I am only telling you my experience as information for you to have. I am not sure what the stats are on the TG approach, but had that been and option in NH, I may have chosen that.
Good luck and wishing you well,
Gracie

[kathyd]

thx so,much for all who replied to my post.
I am in too much painto sit to type, but I have so much I would love talk to u guys about. (so sometimes I had my famliy type for me when they can)
I am not convinced that PNE surgery is the way to go for me, nor is my hubby,, one of my docs in NYC is (I think cause she is running out of ideas after trying for 2 yrs, and yet another specialist has strongly urged me NOT to do it.... I pray to find some pain control and way to sit ...etc.. I am on Nucyta now but it doesn't help
I cannot sit on my sit bone (ishial tubes) and more recently my perineum hurts on contact... The new doc I mentioned is concentrating on more muscular skeletal and aligment issues...and working on injecting with trigger pts. so far no change.
I have IC issues as well for 4 and one half yrs-
(how this all began, later my sitting pain began about 1 and a half yrs ago. but has been disbabling recently after a Chiropractor adjusted me for 2 mos..UGGG!! Now I can' t drive locally even, and my neck is spasmed from the odd positions I've sat in to get the weight off my perineum and butt, and from being jostled while laying down in car...so the neck is a new issue! I am so discouraged. I feel like its a lost cause,.but I need to fight on for my hubby and 3 kids.
Any ideas on pain control? Ican't take drugs with anti cholinergic properties (this includes many anti-derpressant and some pain meds) as the cause uinary hesitany, and, make it hard to emtpy the bladder.
Also any ideas on concocting a cushion which would get the butt and perineum up off the chair. If I could drive again I would be so greatful!!!!
I so need some direction and hope.. I have been shut in and just feel like there is none.I have fought hard for over 4ys seen soo many doc and nothing panned out..The docs take forever to get back to me ... you all know the drill..I had the Potter MRI and from Potters comments there is no glaring evidence of PN, but other issues we are working on, (however it sure feels like it to me.)
But My gut tells me the PNE surgery might not be for me and may only worsen things..
Also anyone heard andy info re Dr Dellon in Baltimore...One of my docs keeps suggesting I see him for periperal nerve work, but after seeing my history he didn't seem to think I had PNE, and I got the sense that that the 3 hr trip to Baltimore would be a waste of time, after reading his reply (from his website it doesnt seem like he does much work with PN, as it wasn't mentioned.

Thanks again all, hope i am not repeating myself from my other post.
any info or help would be so appreciated.
I think you are all so strong. and I wish u the best for 2011
Kathy

[kathyd]

Her Majesty,
Thx for the info on pelvic point dysfunction.. sounds like something I could have based on my muscular skeletal stufff.. I will check into when I get in to see my NY specialist ...
Best to u,
Kathy

[sgrandy]

Hi Kathy,

Could it be that you have pudendal neuralgia (inflammation of the pudendal nerve) without entrapment? It is very possible to have inflammation of the nerve caused by something else other than entrapment which would explain why Dr. Potter's MRI didn't reveal an entrapment yet you have symptoms of a nerve condition.

You may want to post your MRI results under the MRI/MRN section so that more expert posters on this forum can read what Dr. Potter found.

Stephanie

[kathyd]

Thx Stephanie,
yes I am hoping it is PN rather than PNE..I just wonder how can I find out. I will see my new physical med doc on
Fri... she hopefuly has studied my recent Potter MRI films by now, (she hasnt contacted me yet and its been a few weeks!
I did have a lot of PT with reputable NY areas PTs, and I had no change, but at the time we were concentrating more on IC issues than sitting pain. But in June 2009 shortly after the onset of sit pain, I saw Dr Jerome Weiss and
also Liz Rummet and Step P at the Pelvic Pain rehab center in SAnFran.. Both these ruled out PNE and couldn't find glaring of IC either, despite my severe symtpoms. I was shocked as I' travelled cross country to see them, and didn't get much direction. When I got home ,my local PTs couldn't find trigger pts and said my sitt pain was due to a skinny butt
Now 15mos later, I am in much worse shape, IC symtoms remain and limit my diet (long story) and my sitting abilty went, way downhill following servies of 6 blocks into different nerve pathways at the advice of one the "experts".
Anyway, Im hoping to figure out whether I have PN PNe, Pelvic Congestion syndrome, before trying to see Conway...( I just can't face a 6 hr roadtrip, as can't even get aound locally right now.
I will list my history and treamtments soon as you guys have
Thanks for your responxe. We will also try to copymy Potter report here.

Ladies, do people consult with Potter on the phone? So far I just have my docs pass on the info.
I am located near NYC.
Kathy

[Cora]

Kathy,
Your symptoms are similar to mine, although my sitting tolerance has improved. I wanted to respond to your cushion question. What worked best for me after many trials, was I actually bought a vinyl toilet seat and removed the lid. Then on top of the seat I put one of those u shaped toilet cushions that you can just attach with a velcro strap that it comes with. ( just googled u shaped toilet vinyl cushion) and found many of them. Then, I had a friend sew a pretty tote with handles and velcro closures and that is what i sit on now when I drive. It has been great for me. I used to carry it with me too into restaurants, but now I can sit in restaurants. I also went to PT for 2 years and still go for pain management. I saw Liz rummer and then Rhonda Kotarinos, but now see someone closer who is also very very good. Pt was helpful, but not a cure for me.
Best of luck to you- you'll get a lot of info over here.
Cora