Health Organization for Pudendal Education

hi, I am new to the forum, but have been dealing with pne for almost 3years. don't have time to go into my story now, but would appreciate advice, and especially connecting with anyone else who is in my shoes out there. I have an entrapment in scar tissue I guess resulting from childbirth and perineum tear that was sutured up. Initially I had numbness under the left labia, then pain started to creep in. I have all the classic signs and am not doubting that my diagnosis is correct. My doctor had me get an mrn and I guess the findings were consistent with the pain, so I started the nerve blocks, started with ct guided, but no relief, then I asked him if there was anything more accurate, and if we know where the problem is can't they go directly there with the block. So, sent me to Hopkins for MRI guided block. I found it was so much more painful, and took so much longer, the radiologist explained that it was that there was at least one big ligament in the way. So, I am wondering, is there a way to get a block without going in through the buttock cheek? Seems it would make more sense to get there through the perineum, vagina area.

Also, has anyone else in the group had there pne present this way?

finally, if 3 more blocks do not end up releasing th nerve, I am then looking at surgery. Would like to see who might know of a surgeon that would have this particular specialty. I live in md but ca travel if need be. I want the best chance at a cure, and the least chance of complications.

Thanks so much!,

Welcome to the forum.

One of our former directors had an entrapment as a result of childbirth and a tear with sutures after childbirth.

As far as blocks go, they can be done vaginally without guidance but are not considered as accurate that way. I've not heard of many people having successful results from nerve blocks. Did you have even a few minutes/hours of pain reduction?

You can access a list of PNE surgeons from the homepage at pudendalhope.org -- see the menu on the left of the homepage. You would be smart to read up about them on this forum and ask lots of questions.

Best,

Violet M

Did the blocks through the buttock give you any relief? If not, the dorsal blocks (Hibner has started doing them) are done to the side of the labia.

cari

By the way, what did your MRN show?

Hi Aleclucy,
I have not heard of blocks done with a MRI, is that something new? I thought it was only Ct and fluroscopy. My Ct blocks were painless, only have had two done. I have not had the Alcock area blocked yet, but might.
Cari - can you explain anything else about the dorsal blocks that Hibner does, what does that exactly rule out?

Thank you,
Debbie

Hi, sorry I haven't replied sooner. I didn't realize that I had replies, guess I thought they would come through email. So, please accept my apology for the delay in responding. Violet, I know you said that someone in this group had the same type of nerve entrapment from childbirth. Do you know what helped? Did this person have surgery? I am wondering about this. It would be so helpful to me to know this.

Also, I wanted to clarify that I had an mrn, which is like an MRI, but it allows visualization of nerves, thanks to a contrast agent that is injected. Mine did show an entrapment in scar tissue, on the left side. I asked my doctor if I could have blocks done then in just that area. So, Hopkins has the technology to do that, but it is uncomfortable, as they are going in through the buttock, around a large ligament and trying to get a precise spot. It took more time than the typical blocks do, and it seemed more painful. I am searching for some way to avoid this. Hibernate was suggested, but I cannot afford to travel that many times, and I have young children. Is there anyone who does this in my area (Maryland, D.C., Virginia, Pa)?

Thanks so much! Looking forward to hearing from you.

Thanks,
Kara

Kara, a couple of women I know who got PNE from childbirth had PNE surgery. One considers herself cured and the other is much better although not cured.

Most of the docs use CT guidance and go through the buttocks as you described. I wouldn't do anymore nerve blocks than you have to unless they seem to be helping. There are some people who have gotten worse from them. Have you seen a good physical therapist who deals with pudendal neuralgia yet?

Take care,

Violet M

Kara,

My advice is not to rush into surgery. In my view it is something done when everything else has failed. Look at the statistics of the surgeries. Realistically, only about 40% get a "cure", while an additional 20-30% state they were "improved", and 30% were not helped. There are several approaches to surgery, and regardless of which approach is used, there is considerable pain afterwards and a long recovery period. The surgeons themselves admit there is not enough data to prove one technique is superior than another. I wrote a Dr. Renney, part of a surgical team in Houston about the surgery, and he responded that the surgery is 100% unpredictable. In other words, the surgery may be a complete success in the view of the surgeon, yet, the patient is no better off.

I have some sort of PN disorder, and I am going to explore every other avenue before even considering surgery.

Read the accounts of those who have had surgery, and contact several patients who have been operated on, and I think they will tell you the same. Sure, some do get better, but on average, the surgery in my view cannot be regarded as a wonderful procedure if only 40% are cured.

Jim K.

Aleclucy11 wrote:Hi, sorry I haven't replied sooner. I didn't realize that I had replies, guess I thought they would come through email. So, please accept my apology for the delay in responding. Violet, I know you said that someone in this group had the same type of nerve entrapment from childbirth. Do you know what helped? Did this person have surgery? I am wondering about this. It would be so helpful to me to know this.

Also, I wanted to clarify that I had an mrn, which is like an MRI, but it allows visualization of nerves, thanks to a contrast agent that is injected. Mine did show an entrapment in scar tissue, on the left side. I asked my doctor if I could have blocks done then in just that area. So, Hopkins has the technology to do that, but it is uncomfortable, as they are going in through the buttock, around a large ligament and trying to get a precise spot. It took more time than the typical blocks do, and it seemed more painful. I am searching for some way to avoid this. Hibernate was suggested, but I cannot afford to travel that many times, and I have young children. Is there anyone who does this in my area (Maryland, D.C., Virginia, Pa)?

Thanks so much! Looking forward to hearing from you.

Thanks,
Kara

Hi Kara,

Where did you get your MRN done?
Kara have you tried acupunture? i know many here haven't had success with it but in my case it has helped so much! if you want to i can send you a PM and give you the details? i live in VA.Please don't rush into surgery.

Lola2