Health Organization for Pudendal Education

Hi All,
I am a female from the UK and I have been reading stuff on this forum for the last 12 months and I am finally ready to ask for some advice because I just don't know what to do.
Had a definite diagnosis last year of PNE, from a doctor in the UK and the pain is in my rectum. I have had ganglion block and 2 transvaginal nerve block and none have eased the pain. I started physio last year and my symptoms eased a bit but since I have been having the injections I feel like I have just been left to see if they work. I have just started physio again but only had a few sessions so not made any difference yet but I don't know if I have been left too long and everything has seized up.
My life at the moment consists of office work part time stood up for most of it and then having to lie down on my side when I get home and I am usually a positive person but at the moment it's beating me
I think the worst bit is getting your hopes up when doctors tell you that after a few injections things should start to ease up but over the last 12 months I have gone backwards. I have had to stop driving and even walking is affecting me.
I am usually a fit healthy middle aged woman and a lot of the pain used to come from haemorrhoids and then I have had 2 anal stretches because of the haemorrhoids and trouble with constipation. So I think the damage has come from there.
I feel pressure from my family now because I can't go for meals, cinema and family gathering and I am usually the life and soul of the party, my family think I can just go to France have the operation, recover and then you will be back to normal.The doctor has mentioned about France but has since said he has had a patient that has been for the operation and still has to go back to him for injections. He has also said I would still struggle to sit down after the operation so that has confused me even more.
So I just feel that my family think that I am not helping myself because I am not willing to go for an operation that I don't know if it will work or make me worse. This year after all the injections etc I am scared of anyone touching me now but I don't want to stay like this so I am just so confused. I am hoping that the physio will help again and I wish that they hadn't left me without physio for 12 months because they wanted to see if the injections showed any sign of relief, which they haven't. So feel like I am starting all over again, the physio said I have hardly any pelvic floor muscles and I need to work on them so I am living in hope that it will give me some relief.
Also what has confused me as well is the doctor said after 2 injections and you get some relief France might be an option but I have read on here that if you don't get relief from anything then the operation is your only option.
Thank you for taking the time to read my story and I would be grateful if someone could give me some advice. x Kez

Hi Kez,

Did any of the block you had help even for a short time -- like several hours? The blocks can be a tool that helps in making a proper diagnosis so it's important to evaluate whether they gave you any short-term (hours) of pain relief. I don't know of very many people who actually got well from nerve blocks. They may exist but we rarely hear about it on this forum.

If your pain is only rectal with no other symptoms in other areas of the pudendal nerve then I would question whether it's the main trunk of the pudendal nerve that is affected. If it were, I think you would be having more widespread symptoms. So strictly rectal/anal pain would more likely mean that the inferior rectal branch of the pudendal nerve was affected -- or local nerve fiber endings. Have you been able to get an MRI to see if there is any scar tissue in that area that might be affecting the nerve? If there is a significant amount of scar tissue it might be possible for surgery to help alleviate an entrapment of scar tissue but then you have to be aware that surgery can just cause more scar tissue. So to me, it would make sense to pursue the PT route to work on calming down the pelvic floor muscles, and trying to loosen up any restrictions from possible scar tissue in that area, especially since PT helped you once before. Before even considering surgery, I would need to know what they were going in there to do and at least from the information you have posted, there isn't enough information to point clearly toward having surgery. When your PT presses on the pudendal nerve at the ischial spine or in Alcock's canal is it painful?

Violet

Hi Violet,
Thank you for taking the time to reply.
Yes the 1st block I had gave me a caudal effect and I was numb for at least a week and it was the best I have ever sat down. The only problem after it was that I have never been able to sit on it since. When the feeling came back I had the feeling of sitting on a golf ball and it's never gone away. The only place I can sit is on the toilet. My physician now who diagnosed me with PNE has given me the 2 vaginal nerve blocks and it has not given me any relief. I have always had trouble sitting on hard surfaces and had pain after going to the toilet but since having the first ganglion/caudal effect injection I haven't even been able to sit on a cushion. As like everyone else on here I have bought every cushion going from the US etc and still have to sit to the side on one bum cheek.
I have had an MRI scan and nothing showed up, but when I had physio last year and she was working on the inside muscles she said she thought she could feel some scarring and I think it's from when I had laser treatment for endometriosis in my early 20's, but nothing came from the MRI.
When the doctor diagnosed me with PNE his physio who I am seeing now pressed on the pudendal nerve in the Alcock's canal and it was painful but I never have any pain in any other area than my rectum. I also thought I had good pelvic floor muscles but this physio and the last physio said I have no pelvic floor muscles.
I never even used to take any tablets before the 1st injection and now I am on pregablin and amytriptiline, the doctor I am seeing now said the 1st injection has made it easier to diagnose me because of the symptoms it has left me with but I don't feel that way I just hope I am not left like this.
I am doing all muscle relaxation meditation and I am really trying to stay positive but it is a struggle. I hope the physio can work her magic and thank you for your advice. I think the worse bit is the doctors do get your hopes up and you are still the same if not worse off because the injections haven't worked and I haven't had physio for 12 months. If they prepare you for what's ahead instead of promising you the world then I think I could of handled it a bit better.
Thank you again Violet

It sounds like you had some temporary relief from the ganglion impar block but no relief from the vaginal blocks which I'm assuming were pudendal nerve blocks. The pudendal nerve blocks are supposed to be diagnostic and if you did not even have temporary relief with those blocks then maybe what I said before could hold true -- that since only your anal/rectal area is affected that maybe it is just the inferior rectal branch of the pudendal nerve that is affected. The anatomy of the inferior rectal branch of the pudendal nerve can vary from person to person. If it comes off the main trunk above where the pudendal nerve blocks were given, that might explain why those vaginal nerve block didn't help.
If a ganglion impar block gives you temporary relief like yours did, then you could try an injection of phenol into the ganglion impar which could give much longer lasting pain relief than a block containing a steroid and analgesic like marcaine.

I don't know...it's really a tough decision deciding what to try because you don't know whether a particular treatment might make you worse like the injection seems to have done. But the fact that you had temporary relief from that one block leaves you wondering if a phenol block into that same area might help -- or possibly even cryoablation. Sorry, just brainstorming here. Hopefully PT will help dramatically and you won't need to try anything invasive.

All the best,

Violet