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[Mary M.]

Hello, so happy to find this site. Hope I am doing this correctly.

I have had all the symptoms of Pudendal Nerve pain for 5 months. It is unbearable. I am going to a Pelvic Pain clinic at a teaching university hospital in Chicago for evaluation Friday morning. Are there any questions you believe I should ask that would help me get proper treatment? Has anyone had the surgery? Of course I am still in shock and frightened since I am a very athletic woman and can't believe how my life is about to change. Has anyone suffered from depression? Thanks for any information you can give me.

[Lernica]

Hi Mary,

Welcome to HOPE! Hopefully you'll find the answers you're looking for here. Many of us were physically active before being struck with PN. I now exercise by swimming lengths, which is usually fine for PNers. Walking is also fine for many of us, but no walking uphill. Running, biking, horseback riding are all out of the question.

Depression is a common occurrence for people in chronic pain, and it is usually helpful to take antidepressants. They help with mood and pain. But their effects take awhile to set in, so give yourself a few weeks.

Once your treatment plan is in place you will begin to feel better. You are lucky to live near a teaching hospital, and one that has a pelvic pain clinic to boot! Eventually you will find that you don't miss athletics too much, and that a day of reduced pain levels will make you just as happy as if you had run 10 miles!

As you begin this PN journey you will find that you will have to be your own best advocate to get the right and proper treatment. Read as much as you can about the condition and treatments, and print up articles for your doctors. Over time, you will find that you know more about PN than most doctors.

Most of all, do not lose hope! You are among friends. The forum has many wonderful, caring and knowledgeable members who all speak from experience.

Best wishes,

Lernica

[Celeste]

We've all been in your shoes, and everything you feel is normal. Lots of us have had surgery, and there definitely is life after PNE.

I think it's safe to say that most of us found that we needed to travel to see a PNE specialist, but it's certainly true that a pain clinic can sometimes help you get a little more comfortable, which really helps with coping while you look for treatment. Hopefully your visit will be a good one and it'll make you feel like you're on the right track.

[Mary M.]

Thanks a million. Of course I am scared and overwhelmed at the moment. Do you know if people are ever able to sit again? That is my goal. That said, everything I am reading says if you sit, you are causing further damage. How do you live a life this way? I mean go to the beauty shop, drive, work? Can you walk around the block?

[TracyB7777]

Ah Mary, I'm so glad you found this site. I remember how excited I was when I found it to finally be around people that "got it"! As for living life, you try to find accomodations as much as possible. I still work full time as an Executive Assistant however I never sit. My staff (work in Operations) built me boxes for my computer to rest on, gave me a static pad to stand on and built up my work station for "desk work". I just purchased an anti-gravity chair that I use at lunch time (when I can) to get off my feet for a while. Some people have found pads that work for brief sitting but I personally haven't found one that works for me...yet. I keep trying. Friends and family and co-workers pretty much know my status. If we want to go out to eat they shoot for places with Hi-Tops for me to stand at or bench seating for me to stretch out on. You have to do whatever you can to make yourself comfortable. Back row in the movie theatre so you can stand, etc.

Good Luck and keep asking questions. This group has been wonderfully supportive!!!

Tracy

[Celeste]

Thanks a million. Of course I am scared and overwhelmed at the moment. Do you know if people are ever able to sit again? That is my goal. That said, everything I am reading says if you sit, you are causing further damage. How do you live a life this way? I mean go to the beauty shop, drive, work? Can you walk around the block?

I always sat using an IC cushion, basically two foam bars with some egg-crate foam connecting them so there wasn't pressure on the affected area. Of course this was just to do minimal sitting, not because it would cause damage, but because more sitting = more pain! I think the no sitting edict comes from those who are suggesting ways to avoid further treatment. The reality is, you can really limit your life if you cut out sitting and if you try to just go to lying down or standing for everything, you'll wear out your body in other ways.

Surgery was my answer, and I've returned to normal sitting. I know lots of others who have as well as some who may always want a cushion of some kind...but again, there is life after this. It might take a while to get relief no matter what you try, but it's certainly possible. I think that there is a lot of very discouraging information out there, but please try to stay positive that you can get better.

[Mary M.]

Thanks again. I have a question. Are all the people you know who actually can sit now people who had surgery? My goal would be to be able to sit for 3 or 4 hours at a time. Thanks again.

[Celeste]

Thanks again. I have a question. Are all the people you know who actually can sit now people who had surgery? My goal would be to be able to sit for 3 or 4 hours at a time. Thanks again.

The ones I know by name, yes. Some on the forum get enough relief between medication, PT and lifestyle adjustments, and some are not candidates for surgery for other medical reasons. There are some for whom surgery did not help, or not enough, and they have gotten some relief from a neurostimulator implant. There are also some here who have not found any relief. There is a whole spectrum as you can imagine. However, it isn't a problem that seems to go away on its own.

The usual process is to rule out anything else it could be (seeing specialists and getting scans, for example), try some medications or other therapies like PT or nerve blocks, and see what your results are. If nothing is helping, that's when most people start looking for a PNE specialist, if not before then. The time between all the various appointments is useful for learning about next steps if it comes to that. One thorny issue is whether the PNE specialist you ultimately select will accept the results of nerve blocks you had somewhere else. Another is that there are also some newer scans available that their providers claim to be more telling, but none of the PNE providers require them or use them in their diagnostic protocol. We have so many more providers now than we did when I was going through it, and they all have different ideas. You definitely would need to decide which philosophy you agree with more, because the one thing you cannot do is go to X and receive the treatment that Y gives. You will probably also find it very difficult to take something that one tells you, and make it square with something another one has told you; contradiction is rampant. Everyone here has their own opinions, but you'll have to make up your own mind. There is no referee to make the call on what is the best thing. Unfortunately there is a shortage of peer-reviewed literature on this compared to other medical problems.

I'm sure it all sounds very daunting, but you can get through it.

[Lernica]

Thanks again. I have a question. Are all the people you know who actually can sit now people who had surgery? My goal would be to be able to sit for 3 or 4 hours at a time. Thanks again.

Mary,

Many of us can live with PN without having surgery. We need to make some major lifestyle changes but it is possible. Surgery is really only an option of last resort given the lack of data on its success rate. So please try the options suggested by Celeste first. If you like, you could book a consultation with a PN surgeon now since it may take up to eight months to get an appointment, and several months after that for a surgical date.

If you are working at a desk you need to make some furniture changes. For instance, you will need a stand-up desk, or (even better), a "height adjustable" one that moves up and down with the push of a button. (It plugs into an electrical outlet.) Please see the suggestions under the forum section called "Seating and Lifestyle Accommodations" (or something like that) for other ideas on how to set up your office.

You may also have to scale down your hours at work. Would your employer let you work part-time until you settle on your pain treatment? I started by cutting back from 8 to 6 to 4 to now 2 hours a day. This requires an extremely understandable and flexible employer.

Also, can you get some help managing the housework at home? This would also take pressure off your nerve and allow you to sit/work/stand more comfortably and for longer period of time.

Good luck with everything, and don't hesitate to ask us more questions as you begin your PN journey.

[Celeste]

Surgery is really only an option of last resort given the lack of data on its success rate. So please try the options suggested by Celeste first. If you like, you could book a consultation with a PN surgeon now since it may take up to eight months to get an appointment, and several months after that for a surgical date.

Surgery is a chance you can take if nothing really works and your quality of life is just too low. Any PNE specialist is going to want to see what you have exhausted as options for relief, so definitely give reversible and non-invasive treatments a try. It does help to give yourself a sort of timeline for how long you would be willing to give an option to work for you. It helps psychologically to feel that you gave these things a chance, should you decide you need to investigate surgery. Finally, not all of the PNE doctors have a long wait to be seen.