How did you finally decide to have surgery?

[Faith]

Just wondering if any of you would have had surgery would like to share how you finally came to that point of deciding to do it? Were you completely bedridden? How "disabled" had you become? And if you want to share how you picked your surgeon and in the end if you feel like it was worth it? I have read (or at least I think I have) that the longer you wait to have the surgery sometimes the poorer the outcome. But at the same time I feel like you want to wait till you are really debilitated before considering this major surgery, right? Would love to hear your thoughts.

[AliPasha1]

Faith,

I woud proceed with the surgery.There is no point in wasting our lives and endure this misery due to PNE.I would highly suggest Dr. Michael Hibner since he does repair the Sacrotuberous ligament which leads to less Pelvic instability.

As far as the reasons for my surgery with Dr. Bautrant and redo with Dr. Hibner are concerned, they are as follows.

1)I tried all Conservative treatments and spent US $ 20,000 in the process with no improvements in two years.
2)Quality of life was zero.
3)Sexual life was non-existant.I am a 36 year old male.
4)I could sit with a cushion for about 8 hours daily at my job,but was completely dependent on my cushion.
5)Social life was zero.
6)Constant burning pain in the rectum which would radiate to my Genitals constantly.

Regards,
Ali


All the best,
Ali

[Celeste]

It took me over a year of searching for answers and then a while to meet the requirements for surgery in Houston. I ended up having my surgery 25 months past the onset of the pain. I wasn't disabled, but also didn't want to take a chance on becoming that way. I had a new baby and a fulltime job. While I was stressed that I needed to have surgery (everyone finds the idea stressful, I think) the decision itself wasn't difficult. Nothing I had tried had worked, and surgery was a chance I could take to get well. I have no regrets, and I've had no problems whatsoever from the loss of my ligaments, which were in fact the problem.

[Karyn]

I haven't had surgery yet, but after 3 years of disabling pain, a significant reduction in quality of life and 2 years of unsuccessful "conservative" treatments, I feel surgery is my CHANCE at getting better. The 3T MRI I had in NYC pretty much cinched my decision. I also felt the MRI provided me with a reason as to why all the treatments I'd been through didn't work. Additionally, I haven't noticed anyone who participates on the PN forums with true entrapments to suddenly get better. This doesn't seem to just go away. Think about the folks who have reported suffering for 5 years - 10 years - 20+ years, ect ... That speaks volumes to me. I don't know if this is true for everyone, or even anyone else, but I know from my own experience that my condition continues to deteriorate over time. Not get better. Each year, I'm able to do less physically than I could the year before. So, yes, I understand surgery isn't a guarentee but I really do think it's a chance. In light of nothing else working, I'm very excited and hopeful!
Warm regards,
Karyn

[JeanieC]

I just got to a point where it was just the only thing I knew of at the time that I had not tried. Everything I started, from surgery to PT to chiropractic to Oriental Medicine was a failure or made me worse. The only thing I had not tried was completely giving up sitting. I had read on the pudendal sites of people getting much better from avoiding sitting. This did not happen for me, I got no better at all. I was never bedridden or disabled, I could go to the grocery store and cook, but as time on the couch went on and on, I had less and less energy and even these simple activities wore me out. Living on the couch is very depressing, it was almost like I was not living at all compared to the way I had spent the rest of my life. So I decided to pursue an official diagnosis, as up to this point I was self diagnosed with some help from a PT and a neurologist who both said the dreaded pudendal word. I was given the official diagnosis in Houston last spring.

I could have scheduled surgery for June, but I decided to wait and make sure I had tried every medication available (there are still a few I may not have). Finally I picked up the phone and scheduled surgery, on my worst side only. This was the one that also had the abnormal PNMLT and was recommended for me by Dr Renney. The surgery showed that I was entrapped by the ligaments on the left side. They are now windowed and my nerve is free and has some slack in it compared to being constantly under tension. Now I am almost 5 months post op and I do still have nerve pain, but I am at least not worse, and have some hope that my pain will improve. I feel really upbeat today as I went to a water exercise class and was able to participate some!

Faith, you will just get to the point where you know what is right for you.

[RJR]

All the above are great answers. Celeste's post expresses my mindset best (except for the baby part as I am a guy). TG surgery recovery is much easier than I anticipated.
RR

Why consider surgery? My rationale...
-2.5 years of pain is enough…completed entire conservative path…unable to lower pain floor
-Ability to work, commute, and exercise is limited….daily sit time limit < 1.5 hours with special pad
-Compensating for not sitting is negatively affecting other joints (L knee, hips, arms, neck)
-Meet Nantes Criteria for PN (increases probability of surgery success)
-High field MRI (Dr Potter) of bilateral Pudendal nerve showed compressions at R STL and in R Alcock’s Canal
-PT finding that PF muscles are OK, which increases chance that root cause is the Pudendal nerve
-Lyrica and opiate side effects over long term are “not life-long meds to take”
-Pain generally worsens over time => Central Sensitization => best to fix it now
-Quality of Life
-Dr Hibner’s innovative approach to TG surgery

[quilter]

It was a very difficult decision to make. What contributed was talking to so many patients via the forums and getting diagnostic & treatment info I never would have found on my own - the dozens of MDs I'd seen sure weren't giving it to me. For the first 7-1/2 years I was alone, had never talked to anyone else with my pain. The forum community was (and is) a huge support - would have committed suicide long ago without you.

Factors:
1. Increasing pain and disability for 7-1/2 years before getting PNE diagnosed and having my first pelvic PT. I'd seen multiple pelvic specialists who said PT was for bladder patients and wouldn't help - WRONG. Treatment with a pelvic PT years earlier would have prevented so much pain, pointed me toward the correct tests and doctors, and maybe prevented surgery.
2. Everything else mentioned above regarding quality of life, ability to work, sexual function, trying dozens of medications, procedures and injections, not to mention at least $40K out of pocket and being increasingly made to feel crazy by my doctors.
3. I spent a year in pelvic PT and finally seeing PN-knowledgeable doctors before considering surgical consult. Via the forums I researched all the treaters and felt Dr. Hibner was the best person for the first consult. He matched up personally with everything I'd read about him, and was honest with me about my chances. Did more research, talked to my other doctors back home, and they all agreed he and TIG was the best choice, so I went ahead and don't regret it.
4. As to why I had a good initial result and then slowly backslid, don't know. Saw my PT at 6 weeks postop and she was amazed at the immediate anatomical changes. She said my pelvis was completely different than preop. All the muscle and trigger point issues were dramatically improved. Preop we'd made minor gains with PT and nerve blocks, but I'd been improperly treated for so long that conservative care just wasn't going to get me anywhere. I couldn't handle more years in pain hoping to make gains, so surgery was the only option. Now I'm unfortunately having to consider it again.

[Violet M]

Quilter, if anyone ever did their homework on this, you did! I'm sorry things have gone downhill lately and I sure hope you can find something that helps this time around.

Hugs,

Violet

[helen1000]

Hello,

Here is a look from someone who did not have surgery yet but has a plan in mind. Right now I am being treated for SIJ dysfunction. Because of position of my bones my pudendal nerve was stretched. Dr. Conway said that it is not sufficient but necessary improvement to put it in place.
I am also treated for Maigne syndrome (T10-12). It gives pain to urethra, lower abdomen pain and spasm and can trigger pudendal pain
My PT suggest that I get checked for labral tear and I will do it. Sometimes it can mimic PN.

If this does not work I will have surgery right away. I do not want to loose my chance for relatively normal life.

I hope it helps,

Helen