Looking back, what would you have done differently?

[Lernica]

Hello everybody,

I am a new member, having been diagnosed with PN just recently. I would first like to thank you all for creating this wonderful website and forum. I have learned so much from it. In fact, thanks to your website I self-diagnosed PN before I had the diagnosis confirmed. I also want to thank you all for your very funny posts which made me laugh despite myself. Pianogirl's posts on air travel were hilarious, while her post (I think it was hers) on preparing for sexual intercourse was funny, touching and hopeful, all at once. Again, thank you to all of you and congratulations on creating this fabulous website.

As I start down my own treatment path, I am curious about the following question: If you had to start your treatment all over again, would you do it differently? Do you have any regrets about the treatments you pursued, or the order in which you pursued them? Do you have any general advice for a newly diagnosed PNer?

Thank you all for your assistance. I look forward to being a part of this community.

Kind regards,

Lernica

[catherine a]

Hi Lernica,

My advice would be to keep a journal every day. I marked the time morning, noon, and night. Symptoms usually do get worse as the day goes on and it helps your doctors to read exactly how you feel. The only thing I would do different would be to go to doctors who have knowledge of Pudendal Nerve issues and avoid the ones who are not actively interested in learning. Most of us here spent lots of $$$$$'s and wasted time in finding the correct treatment due to being passed from doctor to doctor. Most of whom could only help with medications such as Pain killers, anti-depressants etc. but who showed no interest in our information from the pudendal web sites. If you come across a doctor who won't listen to what you have to say and is not interested in researching this condition then you're wasting valuable time and money.

I wouldn't do anything different from what I did before having PNE surgery. Unfortunately we must go through all other treatment modalities to see if they help relieve the pain or not. Seek out a good pelvic floor Physiotherapist but only those who are interested in learning more about PN issues.

Relax and try not to stress too much. Take your time and don't overdo anything. Try and block out negative comments from family & friends who don't understand what you're going through. Keep in touch with these forums as the people here are so supportive and understanding.

All the very best with your plan of treatment and I do hope you'll find specialists not too far from home. My advice is to go straight to those who are actively involved in the treatment of PN as some doctors believe that the pudendal nerve cannot be injured as it's too well protected. There are not many doctors and phsyios. who are knowledgeable in this area and we really appreciate the ones who are.

Catherine

[drds89]

Hi,

I would have respected this thing a lot more, and not been so compulsive about 'exercise' and staying 'FIT' after the straw that broke the camel's back and preceded my pudendal shutdown; that exercise compulsion has been driven so far from this past year.

We all make mistakes along the way and can't turn back the clock. I don't regret going to Texas and having the test to diagnose. I do regret the 2nd/3rd blocks, but I'll never know if that is why I'm not better this time, or just the trip out there when the nerve was stretched/inflamed and I had to stop my anti-inflammatories.

It seems I put every pitchfork in my pudendal nerve that is on the list (except for having a baby or hysterectomy ). Sitting long time, hard chairs, skating position, falling on coccyx, bike riding in the off season for cross training (recumbent bike, no dorsal nerve symptoms), some constipation 10 years ago, but fixed with fiber, and family history. I'm sure that my Dad's 'prostatitis' events were PN. He is 70 and great shape, no symptoms for > 10 years.

[Violet M]

Hi Lernica,

What worked for me might not be the same for you so it depends a bit on your history really. Do you know how you got PN?

One thing I might do differently is to take more pain medication and not try to tough it out so much.

Violet

[Ray P.]

Would never of got the cortisone shots. In hindsight I would of never had surgery in France. Would of had PT sooner after surgery in France.

That is enough for now.

[scaredgal]

Hi Ray,

Just curious, why would you have never gotten the cortizone shots?

[Lernica]

Thanks for your thoughts, everyone. Fortunately I have a very supportive healthcare community (gynecologist, psychiatrist, neurologist, endocronologist) looking after me who are either very knowledgeable about PN or are willing to learn about it. Not once have I had a specialist who did not believe that I was experiencing the pain that I am. This is likely because I have been a patient of theirs for so many years, having suffered from endometriosis since I was 21 years old.

My experience with that painful disease has also (hopefully) prepared me to deal with PN. I am not going to let PN defeat me, like endometriosis almost did. Catherine, your sage advice about not stressing out and about taking it easy is something that I have learned to do over the years. I know the importance of not overdoing things, of resting throughout the day, and of getting a good night's sleep.

Violet, in answer to your question about how I developed PN, the doctors do not know. Like drds89, I am (was) an active athlete my whole life. I never, however, fell off a horse or raced on a bike. I was a runner and weightlifter and swimmer. Since the start of my PN symptoms in 2001, however, I stopped running and took up the stairmaster. Did the stairmaster do me in? I read somewhere that it could. The repeat hip flexion could have been rubbing on my nerve since 2001.

Another possibility is repeat pelvic surgeries for endometriosis, a total of five over the last 25 years. Also, I had three very long and difficult labors, especially the second (pushing) stage. I have a narrow pelvis and large babies. Strangely enough the PN pain I am experiencing now is exactly the same pain I remember feeling while pushing the babies out for hours on end so many years ago. But my last child was born in 1994, and I did not start experiencing PN symptoms until 2001.

Is it my anatomy? However, neither my mother nor my two sisters have had difficult labors or developed endometriosis. I am the lucky one.

Drds89, my exercise is now limited to 25 - 30 minutes of front crawl swimming every day or two at the local YMCA. I cannot walk without aggravating my PN pain. My walking is now limited to the local bus stop and back. The swimming has been a life-saver for me. That, and the long hot shower beforehand and the long soak in the whirlpool after.

Violet, I hear your advice about painkillers. I have lived with alot of pain over the years but have never taken up opiates because of the pelvic congestion they cause. I have limited myself to SSRIs, benzodiazapams and anti-inflammories. I am now experimenting, for the first time, with Gabapentin. So far it seems to be taking some edge off the pain, but I find it is fogging my brain, and I'm only on 300 mg! I'm supposed to go up to 900 mg. over the next three weeks. I fear that I will be a blathering idiot by then.

Thank you, everyone, for your kind and wise words. I love being able to talk to you!

Regards,

Lernica

[Celeste]

Strangely enough the PN pain I am experiencing now is exactly the same pain I remember feeling while pushing the babies out for hours on end so many years ago.

Wow. I only had pain on my left side, but I had described it to people as if the baby was still stuck on descent, pressing against that nerve. I just wanted to confirm for you that somebody else has felt what you're feeling.

I realize that the timing of onset may not seem to make sense, but what I would offer in the way of explanation is that sometimes the nerve has just enough room in there until at some point it does not.

I'm very sorry that you're going through this; I would say that you're quite fortunate in that you have sympathetic providers who believe you and want to help. Many of us have stories of quite the opposite, and it really makes a difference when they're on your side.

I was not one who was able to tolerate increased doses of Neurontin, either. In fact the time I tried to increase from 300 (which had me feeling intoxicated) to 600, I was just a zombie and good for absolutely nothing. Some do report that as they stay at a higher dose it gets better...but I felt I couldn't afford the wasted days to perform that experiment.

Best of luck to you, and let us know how things go for you.

[Lernica]

Celeste,

Please remind me why labor can permanently damage the pudendal nerve. I had discounted this as a possible cause of the PN in my case because of the seven-year delay between the labor and the onset of symptoms (seven years). Was there any delay in your case?

Thanks.

Lernica

[GraceUnderFire]

Hi Lernica,

I too had 2 surgeries for endo (I decided not to do any further surgery as the benefit did not seem to last) and had 4 large vaginal births. My hysterectomy, however, was the definite onset of my PN.

As far as regrets, I try not to go down that road as it is not typically productive. But since you are beginning your journey, I will tell you that I would have forgone the TIR surgery that my husband wanted me to do first as it was less invasive and proceed directly to the TG approach. This is just my own opinion and I would never attempt to tell anyone what to do in regard to this horrible condition.

This forum and its participants are excellent resources and the best advice I could give is do lots of research and remember that things are changing often and don't get discouraged

Best wishes,
Grace