New Person with Pudendal Nerve Disorder

[ritak]

Hey MNMOM/Jim,
Not sure if either of you are into this sort of thing but its free and these days free is good in my head. I find alternative methods useful when dealing with the stress of life and topping it off with a painful condition of the body. I have always gravitated towards the metaphysical,alternative and holistic approach to healing the body. These are websites that you can go on and do even as little as 4 minute meditation. There are lots of different ones from just straight up stress reduction to relaxation to angel etc... It also is interesting to read Lisa's story as she also dealt with a painful condition which lead her to putting all this out there to help others. It is Lisabeachy.com or she also is on utube and its meditaionsformoms.com.
The other is just a quick grounding exercise that you do in the am to start the day off right. He also is on utube. It is gold light2 by loren. This information was given to me by 2 different health care professionals. I use them frequently.This is just another adjunct to assisting with calming the body down and we all need that in order to heal. If you find them useful let me know if not well.... we are all different and hook into different ways. Or try something new Those are mine and they work for me, hopefully you will get some use out of it.
Peace,
Rita

[konedog4]

Rita and MNMom,

I am going to see if my insurance covers Beth Stidham. I spoke to her on the phone last week. I want to try every single avenue to cure this condition before deciding on surgery, as the surgical results are just too unreliable.

I have been feeling a whole lot better recently. I have avoided all sitting, except at work where I have to sit. I know this has helped. I am taking 1/2 mg of Clonazepam in AM and PM, and this brings some relaxation to perineum area. Finally, I am blessed to have a group of people praying for me for healing. I have gotten dramatically better since our prayer session. I have gone from not being able to sit at all, to now sitting for a time on cushions with cutouts. Additionally, I can now lift more than 40 pounds (carefully!), and can do a whole lot more things activity wise, especially vigorous walking and swimming. I changed the oil on two cars this weekend and even did some carpentry that involved bending, kneeling, sitting, etc. It is encouraging to see that things are getting better. Feeling better, my spirits have improved as well, and I am much more hopeful and not so despondent. I am being extremely careful not to do too much too soon. It is very easy to regress from straining or stretching excessively.

Please keep in touch and let me know how you are doing.

jim

p.s. I also decided to consider one or two more Antolak steroid injections, as I still have some anal/colon symptoms, although very mild. The first series of three injections are complete, and while I don't think they greatly contributed to my recovery, Dr. Antolak believes they played a cumulative role in the recovery. In reality, no one really knows. I am in a better place now than I was before I began the injections, but I cannot honestly say the improvement is solely due to the injections. I think the recovery is due to many factors working together, and not stressing the pudendal nerve.

[ritak]

Hey Jim,
Sounds like you are doing somewhat better.That is wonderful. Let me know if you go to see Beth. I would be interested in hearing what she has to say. I think it is important ot check out all possibilities before you do anymore injections and/or surgery.I have only had one session with Beth. She was very thorough and I was there for 1 1/2 hours. Sort of unheard of in todays health field. I have had 2 sessions with my other PT. Making some small changes already.
Keep us posted
Rita

[MNMom]

Rita,
Is there a reason you want to avoid the injections? For me, even though they're not providing any long term relief, they confirm that the pudendal nerve is the main instigator ofy pain. Whether it is neuralgia or entrapment I can't be sure but at least I have a diagnosis and maybe a small reduction in pain.

Rita/Jim,
I also am going to start seeing Beth as of next week. It turns out my new MAPs PT doesn't know any more than my old PT about PNE. Pelvic Pain is not the same as PNE! Afer Rita's endorsement last week I decided I wouldn't waste any more time with therapies that are not only useful, but at times counterproductive.

MNMom

[ritak]

Hey MN MOM/Jim,
I chose not to do the injections knowing they would further diagnose my problem for a few reasons.One being I really know for sure I have musculatolskelatol issues and I feel that if those get under control the PN issue may take care of itself. Two,I also read that the injections can sometimes make a condition worse. It made me a bit leary of jumping right into that option.If I exhaust all my other options either through some PT and some meds then I will address the option of doing injections. My first impression of Dr Antolak was not a comfortable one. He may very well know his stuff, but if I am to have someone perform anything on my body I need to feel comfortable with them.I know Beth knows her stuff and I do feel very comfortable with her. If she thinks that I need to do injections down th eroad I may go back to Dr Antolak.I see my other PT tomorrow and Beth again on Monday next week. I think that I will know more by then. I already notice some small changes.I worked 2 days in a row, alternating between standing and sitting and no increase in discomfort. Jim, still no news on a good dental chair, tried 2 of them. I am meeting with an adec rep on feb 14th. I will keep you posted on that.
MN MOM,Let me know how your visit is with Beth. Good luck.
Peace,
Rita

[acw]

Hi fellow Minnesotans,

I've been following this thread with some interest since I'm also in Minnesota and potentially looking for a good pelvic floor PT who also has PN knowledge. I was "diagnosed" by Dr Antolak almost 5 years ago, but like Rita didn't feel comfortable pursuing the injections with him. It's a long story between then and now, but I'm currently in the process of trying to get a new evaluation done. I'm waiting to get an appointment with Lora Anderson (her name sounds familiar from info I had read on one of the PN boards a while ago) from a referral by my gyn. But I'm definitely open to hearing about others in the area who may be knowledgeable. It would be good if we could get a current list of PTs together to help update this site, as I think Beth is the only one on there now.

Take care,
Anita

[konedog4]

I have an appointment next March with Beth Hoppe-Stidham in Woodbury, MN. She is really busy, and this is the earliest I can get in with her that does not interfere with work too much. Can anyone tell me what to expect? Are there any safe stretches one can do with PN entrapment/neuralgia that do not further aggravate the condition?

Jim

[ritak]

Hey Jim, I have now had 2 visits with Beth. My first visit was 1 1/2 hours long. Not sure if she went over on her time with me or if all new pt visits are that long. She questioned me a lot and then did some exam work which included some internal work of the pelvic floor area. At my first visit she did not have all my info from Dr Antolak so if you can fax her everything that will help.That office had to mail me my results from the latency test as they dont fax over too well I guess. Her diagnose of my condition is that a few ligaments in the pelvic floor are causing my pain and maybe some slight inflamation from the PN.She really does not feel I have any impingment. At my second visit she did all hands on work utilizing myofascial massage. She has a great touch. You are undressed with sheets covering you and she turns the lights down and puts on some music. She got to some pretty sore muscles and ligaments on me. I had absolutly no pain at all yesterday after she worked on me. I have not had any pain meds in 2 days. She is very gentle and will not approach you in areas if you are uncomfortable but hey you sort of have to go there to get to the problem I say. I have some exercises to do that are specific for my condition. I could tell you about some stretches but until you see her i think just do whatever makes you feel better. I could not go with Dr Antolaks approach of not bending, only standing, not stretching etc... it made me feel worse.It may help some people to follow this approach but not me. I just became very stiff in my muscles and not moving made me hurt more.If it feels good do it and if it makes you feel worse dont. I have 8 visits scheduled with Beth every other week. I then see another PT person that does another type of work with me on my whole body head to feet on the weeks I dont see Beth. I am starting to see some results. I will feel good when the pain is completly gone!!!
Hope that helps. Let me know if there is anything else you need to know.
Rita

[konedog4]

Rita,
I will have Dr. Antolak's office forward the results of his tests. Thanks for the tip!

As far as therapy is concerned, if it makes it feel better, I am with it.

I truly appreciate sharing this information with me.

Jim

[JaCKSteVE]

When I find I am feeling rough, or very tight, sometimes it is the only thing that relieves the pain. I get pain in my buttocks/thighs when I start running, but it soon passes and I feel great when finished.