Health Organization for Pudendal Education

Hi there-

I am so glad you called and he can get you in so soon. From the time I called for a consult to my appointment on Monday it was a three month period. He is just so busy - he told me he does multiple 3-4 pudendal nerve surgeries a week!

As for how I am - nothing has changed except I feel like the pain comes on stronger sooner in the day than it has in the past. I can only sit for a few minutes before it is at a level 8-9. I really hope Dr. C can prescribe something to get it under control because I am losing my mind with this pain. I will write again after Monday to update with Dr. C's diagnosis and thoughts.

Katherine

Hi Katherine
So sorry to hear nothing changed for uou. Hope Dr C can do things for you to immediately relieve your pain. I am also having trouble with pain meds and looking for ways to alleviate the pain. I will ask Dr C during the phone consult what is the success rate of the surgeries? I will also research on other neurosurgeons in the state. If you like, you can PM me. Good luck with your consultation today! Thinking of you.
Yvonne

Now I have my official diagnosis - It is definitely PN.

Went to Dr. C Monday afternoon. The drive up was uneventful and my pain level remained at about a 6 which is a "great day" level. We even had lunch prior to the appointment and I sat at a restaurant booth without being too uncomfortable.

The first part of the appointment was the normal measurement/intake by his nurse (weight, BP, etc.). Then we went to Dr. C's office to discuss my history and symptoms. He talked with us for about 20 minutes (very thorough and interested in what we both had to say) and then came the vaginal/rectal exam. WOW - PAIN! Of course he knows exactly where to press so it was clear that this is the problem when I was about to fly off the table. The left side is much worse than the right which is what I've felt all along. For the last 15-20 minutes, we talked about the diagnosis and the 3 things I need to do for 3-4 months before even discussing surgery. This is where things got weird for me (and my husband).

First of all, when we started talking he made some comments lamenting about how boring the PNE surgery is and how unfortunate it is that this is what he's known for and he has to do it all the time now. I thought he was joking, but he was not. He continued on for another few sentences. Maybe we caught him on an "off" day, but I waited 3 months to see him and drove for hours to get this diagnosis. Hearing that we sufferers of this awful condition bore him is not a positive impression. It was really awkward and there was a long silence when he stopped complaining.

Then he said he thinks I was pre-dispositioned to get PN and compared me to a patient that developed PN after an 18 hour flight to Australia. Not similar to me at all. I had it when I woke up from major abdominal surgery. I know he’s the doctor, but this doesn’t make sense. I don’t cycle or weight lift, and I’ve had four babies vaginally (one 9 lbs 20 years ago!) and other abdominal/”lady” surgeries with no problems or symptoms. He even made a comment that it was surprising that having these babies didn’t trigger it. (I was thinking – because it was the hysterectomy!!). He’s basing this on the fact that he read my OR notes and there’s nothing unusual there from the surgery. Well my DR didn’t even really know about the pudendal nerve or PN, so of course there wouldn’t be anything. At this point I am wondering what I am doing here. Again – maybe he was having an “off” day. He is the expert and I have no other options left but to stick it out with him.

Here are the three things I need to do for 3-4 months before coming back to see him:
1. Avoid sitting without a cushion and move positions if it starts to hurt. Make cushions from gardening pads and bring one everywhere I go so I never sit without one. For the most part I already do this. He detailed another patient’s work day in which he sits on a cushion for 30 minutes, stands for 30 minutes, lies down for 30 minutes, and then meditates for 15. I told him I’ve already been doing this since I started working from home after the hysterectomy but he didn’t want to hear it. He gave me a look like it was unbelievable that I already do this. I even have a desk that is specifically for lying down. I even started to tell him about the cushion I have already that seems to work for me, but he didn’t want to hear that either. He wants me to make one from garden pads and made it clear when he kept cutting me off that he didn’t want me to use the one I already have that works. Again – weird!!
2. He went right into needing pelvic PT for PN, and he acknowledged there are none near me. He wants me to go to an “all star” level PN PT, but there are only some in Boston, NY, and near him in NH (all a 2-3 hour drive from me). He did say that if I have to drive far for them it will negate any progress that the PT will make. He’s supposed to look into if there are any closer to me, but I haven’t been able to find any. The one in Hartford that I was seeing was doing all the wrong things for PN and he didn’t want me to go back there. So in short PT is out for me.
3. See a pain specialist for pain relief in the form of nerve blocks, medication, etc. He told me there’s one in Bridgeport (CT) that he used to work with in NH that I could go see. Since that is a 1.5-2 hour drive for me, I told him maybe I could go back to the doctor in Providence (RI) instead because that’s closer to me and has talked to me about those options already. He cut me off again with clear annoyance and said no, I need to go to the guy in Bridgeport. At this point I’m wondering what in the world I did to make him so annoyed and I just want to get out of there. I was in so much pain from the exam and his kindness/patience had clearly worn off. I even forgot to mention some very important work/disability items to him, but I was so uncomfortable I just wanted to leave. So, I do need to call him and talk to him about that.

In the end, he didn’t have me make a follow-up appointment. I am to take the diagnosis and try these things on my own. I haven’t heard back from him about a PN physical therapist near me yet, but I don’t expect him to find one. I called the pain management doctor in Bridgeport but haven’t heard back from that office either.

In the end, even though I got a diagnosis I don’t have much hope given I have already made the changes he suggested for sitting/work and there are no PN physical therapists near me. All I can do is try the pain relief options suggested by the pain management doctor which in my mind is a bandaid for the problem. Dr. C said it’s important to have PT to work with the muscles at the same time as pain relief so both parts work together - but I don’t have access to appropriate PT.

I don’t know what I was expecting from this appointment but I am really depressed about the outcome. I don’t know what rubbed the doctor the wrong way but I felt like all I did was annoy him when I talked about what I am already doing. It was truly bizarre. I know he is an expert and I should trust in him, but it didn’t seem like he really cared about my input. Again – we all have days that we aren’t 100% so maybe that’s what happened. I am going to give him some grace because I know he’s been helpful to so many others. The beginning of the appointment was good – it just got so weird toward the end and I don’t feel any better off after walking out his door. I am hoping once I get in with the pain doctor and get some relief I will feel differently. Right now it's more of the same and I envision 3-4 months of no progress ahead of me.

Does anyone have any other thoughts/suggestions for me in the meantime? I am making changes to my diet by taking all natural B complex vitamins and eating 2/3 raw diet as well to aid in reducing inflammation.

I'd be to happy to offer you some suggestions. Where do you live again?
And this is why I never went to see Dr C. Unless you want surgery I've done everything he would suggest but no surgery for me.

Hi Katherine,

That does sound frustrating! And I know (at least to some degree) how you feel, because I have waited and waited for an appointment (usually for pn but sometimes it's one of my other ailments) and then the appointment is a massive letdown because the doctor interrupted me and didn't have much to offer beyond what I already knew. But, your experience seems like it was especially bad. I'm sorry. Perhaps he was having an off day, as you suggested. It's hard to know, but thank you so much for sharing it all. I've created a two page summary (with bullet points) of the major events, procedures, and pain strategies (in my case, ice and sitz baths) in my pn and back health history and a one page summary of all my current meds and doses that I am going to give out (or mail out) in advance of seeing a doctor. I don't know if doctors will read it in advance, but I am trying to avoid some of what you described. But, I am 2.5 years into this and I just created it this summer. I didn't have anything like this at your stage. Do keep us posted on your progress.

April

That does sound out of character from what I have heard other patients say about Dr. Conway being very caring, so maybe you are right about him having an off day.

It's unfortunate there aren't any PT's who specialize in PN near you. There are people who have traveled to a good PT and stayed out of state temporarily just to give it a try. I don't know if that's an option for you -- or if you have any relatives that you could visit who are near a good PT.

Violet

Hi everyone-

I wanted to give an update because I do have some treatment and pain relief options on the horizon.

The best news is that Dr. C called me last week with a PT about half an hour away. She is an independent PT with her own private office, and she does not advertise that she treats PN. Additionally, she doesn't take my insurance (Cigna) so I wouldn't have been able to find her through that source either. As she is out of network I need special approval from Cigna to see her which requires Dr. C's office to write a letter that describes her specialty in treating PN and why I can only go to her. Also - the max number of PT they will approve is 30 visits and I've already had 9 visits elsewhere, so I may have only 21 with her until the next calendar year. The Cigna rep said I do have a case for more to be approved via appeal since they were providing the wrong PT which made my symptoms worse. I will cross that bridge when I get to it - for now I just need Dr. C to hurry up and get that letter to them so they can approve me seeing her. And - my mom is now retired (as of June 30) and offered to drive me there so hubby doesn't have to take the time off.

The other good news is I saw the pain management doctor (Dr. Tung) yesterday that Dr. C works with here in CT. Even though Dr. T relocated here from Nashua, his staff was telling me they get Dr. C's patients quite often still (even if they are from outside CT). Dr. T was so thorough and patient - he wanted to hear every little thing and every "weird" symptom I have. I think it's the best appointment I've had since the hysterectomy. Even though my appointment was at 4:00 in the afternoon, he didn't rush me at all and I ended up leaving the office after 5:30! In addition to listening to my long saga, he did a basic neurological assessment with manual examination techniques and a few using small tools. He didn't make me sit at all and made sure everything he did wouldn't cause me too much pain. He was so considerate and kind. It was worth the one plus hour drive!

I am going to his other office (1.5-2 hours away) on August 16 for a nerve block on the left side to determine for sure that it is PN. If that is successful, he wants to try another one after that on both sides. He talked about doing a series, but I am hesitant to get multiple blocks based on what I've read on here. He also prescribed Baclofen to stop the spasming at night (10 mg) so I can fall asleep easier, as well as Tramadol (50 mg) twice a day for the pain. Although I've had bad reactions to narcotics in the past, he was confident Tramadol would work differently for me (I guess it isn't truly a narcotic? I need to learn more). I'm a very petite person and I don't drink any alcohol at all, smoke, or put anything else into my body other than mostly whole foods so a lot of medications I have bad reactions to. He said I could cut it in half when I first start to make sure, which made me feel more comfortable trying it.

Last night I took the first Baclofen by itself to see if that worked ok and it did! No side effects and I could feel the muscles relaxing pretty quickly. I was out like a light at 9:30 and slept until 6:30! I even slept through my oldest son getting home from work which is something I never do (he is a night manager at a restaurant). About 2 hours ago I took 1/2 a Tramadol and it took the edge off the pain enough to sit here on my cushion and type this update. Other than feeling a little like I had a drink, I'm doing ok with it. All the other narcotics/opioids I've taken in my life put me to sleep like I'm in a coma and I literally cannot move my limbs or stand up. So this may just work for me. I am so thankful for this new doctor!

I also want to thank all of you that have reached out via PM to chat with me. I am grateful for you all and this site for connecting me with others that understand.

God bless-
Katherine

Katherine,
What a wonderful turn around from Dr C and you have help from different places. I am so glad to hear the update. Wishing you well with the new treatments. FYI I believe Tramadol was reclassified as a narcotic a few years back and is much lower on the scale of narcotics than drugs like oxycodone. I think because not can be addictive it was added. I was using it until recently my primary care took it away, but it was a big help to me.
Janet

Hi Katherine,

This is encouraging news that you have some caring doctors who are helping you with some treatment options. Just wanted to wish you good luck with your upcoming nerve block and PT.

Take care,

Violet

Hi everyone-

I had my diagnostic block on August 16. It definitely worked, but only for about 45 minutes. The block had just the numbing agent and no steroids. After it wore off, the pain was raging for about 6 days, and then it "calmed down" to the previous normal level. I went back today for my follow up appointment and Dr. T thinks the nerve is entrapped because the numbing agent should have worked for 6-8 hours. After battling with my insurance company, I am scheduled to start PT on October 1 (paying out of network costs up front). Dr. T wants me to do PT for 4-6 weeks before we decide to do a block for long term relief. His theory is that as the nerve's inflammation is reduced through PT manipulation, it will hopefully release from wherever its being entrapped. If he does the next block after that, in theory there is a better chance of it working. So, we will reevaluate at my next appointment with him November 13.

I continue to struggle with the level of pain I am in every single day. I am taking Tramadol 3x daily but it just reduces my pain level from 8-10 to 6-8. I have to take small doses so my head is clear enough to work, otherwise I'd be on much higher amounts. I am working over 30 hours a week from home, and my employer has been extremely understanding thank God. I alternate lying down, sitting on my cushion, and standing in order to get through it. The muscle relaxer upsets my stomach too much so I gave up on that. I try to stay positive, but some days are harder than others. I'm not giving up. I've got a lot of life left to live once I get through this.

Katherine