Health Organization for Pudendal Education

thanks for your support ! 5 weeks down now... hanging in there !

Apart from nerve glides, is there anything else I physio-wise that I could be doing to help the nerve at this point?

The surgeon told me to massage the scar to break up the scar tissue... not sure if anyone else has been told this.

Kassie

Hi Kassie,

Glad you sound like you are doing well. I am at 5 months and I am doing well also. It is still a bit of a roller coaster, so I will tell you what everyone told me........please take it slow. I have been feeling much better so I went for a massage today. The girl that was doing my massage very GENTLY massaged the scar and the area around and I have a little nerve flare tonight, so I will say. If you massage your scar....be very careful and only massage the scar. I think massaging the area at the top of the sacrotuberous was too close to the area where the nerve had been entrapped and may have been too much. This nerve flare, however, is nothing like it was before the surgery, so I hope this will not last.

I have been doing nerve glides and doing some easy water walking and swimming which has not caused any nerve flares, but I think it still may too early for swimming for you. Ii think we all heal differently and at different rates, but I do know now that nerves take so long to heal.......much longer than tissue or bones.

Good luck with your continued healing....and keep hanging in there!

Barb

Hi all
I had bilateral pudendal nerve surgery under the care of Mr Wong in Bristol 7 weeks ago and am now in recovery. Mr Greenslade diagnosed multiple pudendal nerve entrapments nov 2013. I have been told there is a 70% chance things will improve so I remain positive although my life has been turned upside down and I'm still in pain and having regular flare ups. I would love to hear from people that arebgoingbthrough this and happy to share any info
Thanks

Hi Positivepoppy,

Just your name lets me know you are on the right track. Seven weeks is really a very short time to see any results from the surgery. I am at 5 months, and although I can say I have seen some nerve pain reduction, I am still a long way from recovery from the surgery.

Yes, it definitely turns your life upside down. The word that was the most helpful to me was patience. It is hard to be patient, but nerves take such a LONG time to heal....not like bones or tissues. The other most helpful word of advice I was given is to gauge your recovery in months and years and not days and weeks.

Take things slow and don't push yourself and you should see a change in the number of flares you are having. Nerves don't like to be handled. Try not to bend. I use a grabber to pick things off the floor. Try not to sit as much as you can. Ice is good during your flares......just remember not to put it directly on your skin and don't leave it on for longer than 15 to 20 minutes.

This is the hardest time......hang in there. It does get better.

Barb

Hi barb
How is your recovery going, are your flare ups less angry and less frequent. I have tried ice but find the best thing is a squishy microwave wheat bag that I'm constantly heating up and placing in that area goes from back to front, bliss!! Only problem it's constant use as turned the insides of my thighs a lovely livid purple, very this season!! Don't care as long as it helps. Take care of yourself

HI PP,
I understand the heat feels good on your private parts, but I've been advised by my surgeon that you NEVER want to put heat on angry nerves. It's not helpful with reducing inflammation and can actually delay healing.
I'm just sayin' ....

Kind regards,
Karyn

Hi
Oh gosh I've never heard that I've been using a heated wheat bag for months and months? Does anyone else use heat to help or just ice? Thanks for the heads up

Hi Positivepoppy,
I put heat on my muscles because they are really tight since my surgery (glutes, hamstrings, piriformis,etc.), but I use ice for the perineum and other areas that feel like nerve pain. I have found it feels better if I wait until the ice pack is cool instead of really cold. It works for me, but everyone is different.

I am doing ok. As I said in the other thread, my main pain is my ischial tuberosity. I have had that pain since the beginning. The nerve pain is definitely better, but I still have my days where the nerve pain is there. I know that a lot of people have an increase in their pain at the 5 to 6 month period, so I am not worried.....trying to stay positive, like you.

The physical therapist feels scar tissue on that muscle that attaches to the ischial tuberosity, so she is trying to beak up the scar tissue. If that doesn't work, there are other treatments, but I am going to wait until the nerve heals.

I also still have numbness and soreness around the gluteal fold. Do you have that? I know the surgery interrupts nerves in the skin, ( I guess) and it takes awhile for the feeling to come back.

Hope you are feeling better and the flares calm down. Don't know where you live, but we are having spring and the trees and flowers are in bloom....it's wonderful for the mood.

Take care!
Barb

Hi Positive Poppy,

I use a "hot pack" on the perineum for pain and I find it works for the post op pain. I also find that a warm bath really soothes the area and calms down the nerve pain. My PM doctor prescribed ketamine cream mixed with Xylocaine for the burning nerve pain. I am having it made at the compounding pharmacy. Has anyone else had improvements or at least some pain relief with this cream? I am in a bad flare right now (4 months post op).

Take care and hoping you are feeling better today
Lara

Hi Lara,

I just started using a compounded cream with ketamine, gabapentin, lidocaine and something else. It helps some, but I thought it would be a cream and instead it is a gel that feels like Vaseline. Needless to say, it is kind of sticky and hard to apply.....and because my ischial tuberosity is so sensitive to touch, it is not easy to rub in.

Where is your main post op pain? I have commented that I have soreness in my gluteal fold and strange sensations (numbness) in that area. At 4 months do you have this? It is interesting to see how all the early post op patients are feeling.

Hope your flare calms down soon.

Take care.
Barb