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sitting pain--pudendal nerve entrapment sitting pain--pudendal nerve entrapment

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  #1  
Unread 05-13-2004, 12:11 PM
sitting pain--pudendal nerve entrapment

Hello ladies,

My name is Celeste and I have PNE from a prolonged vaginal birth. I found help online to get my diagnosis of Pundendal Nerve Entrapment, and I see that it is already a link on the support pages of The Road Less Traveled. My pain is all on my left side, and it hurts when I sit and stops when I stand up. The chief symptom is pain, which can be one side or both sides.

I would like to add two things:

1. The link to the page should be changed; it is now www.tipna.org (The International Pudendal Neuropathy Association). Your current PNE link has a lot of information as a starting point but to ask anything interactively, the new link is needed as www.pudendal.de is no longer functional.

2. I am mentioning this information here because it occurred to me that we have a lot of ladies on our site whose PNE began immediately after a gynecologic procedure--sometimes a colposcopy, other times a hyster, and sometimes a pelvic floor surgery in which the sacrotuberous or sacrospinous ligaments of the pelvic bone are disrupted.

In any case, I invite anyone who suspects this may be a factor in her post-op pain to surf over and see if any of the information given helps you. Many of us are helped with CT-guided steroid injections, and others have been helped with surgical nerve decompression. The main problem is that the topic is not mainstream, and so we hope to provide information you can take to your doctor or use for your own investigation into your options for pain relief.

Thanks.
Celeste
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  #2  
Unread 05-13-2004, 05:00 PM
Pudendal Nerve Entrapment

Hi Celeste
I too think I have PNE. My neurologist says I have damage to the nerves from my Hyster. He went on to say It is not my GYNs fault. It just happens.
After reading the info on www.tipna.org I am 99.9% sure because I have the classic symptoms. I am currently taking 800mgs of neurontin 3x a day. Some days(more often than not) that does not even cut it.
How about you? What are you doing to cope with the pain? It really is maddening dont you think? I dont like the fact that all I can think about is my vagina!
I had my Hyster so I could forget about it! I would really like to hear what has worked for you. Thanks ...Bedaleigh
  #3  
Unread 05-14-2004, 07:30 AM
sitting pain--pudendal nerve entrapment

Hi Bedaleigh,

I have tried Neurontin and Elavil, but even on small doses of them I was in too much of a stupor to be vigilant enough to care for a small child. But I do recall that Neurontin made me still be able to feel the pain, but I just didn't care a bit about it!

I finally went to see the doctors in Houston who offer the French pioneers' treatment in the US. I went in March and then again in April. They gave me a definitive PNE diagnosis and I had a total of 3 steroid injections to see if that would calm the nerve down any. The relief I got was only temporary, but they told me this is a very good sign that I will have luck with the decompression surgery. I'm scheduled to have that June 30. I feel that because my pain is of relatively short duration (2 years) I stand a better chance of the nerve being able to heal than somebody who has had 20 years of it.

I have been able to keep my job (many have not, especially those with bilateral pain and a job that requires sitting) mostly with seat cushions, leaning to my right side when sitting, lots of standing breaks, and taking a day off whenever possible. You are so right, the pain is just maddening. It really does a number on the emotions because all around you are people who went through what you did, and DIDN'T get this awful result. Of course there is no polite way to bring up one's crotch in public, and if you do try to describe it people are pretty quick to give you a wide berth. Online support has been the key to my sanity because pain meds that are non-narcotic don't really help me.

Anyhow, I am quite hopeful that my nerve will be able to heal although they say it can take months to a year for the healing process. I was reading about neural plasticity, the which is how the nerves are changed by pressure and what it takes to recover, and it helped me understand more about what to expect.

Celeste
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  #4  
Unread 05-14-2004, 08:12 AM
sitting pain--pudendal nerve entrapment

Wow, I went on the site this morining to see if i could find anyone with this condition. I just had a prudental nerve block in my vagina yesterday at the doctor's office. They are thinking bladder issues and maybe pne. I had a tah and bso three lap surgeries, colon test, bladder test, mri's and ultrasounds just to mention a few. I had my first lap in January of 2003 and with dx' with severe endo all over my repo organs and my adominal walls and adheasions. I had my hyst in march of 03. I went through the spring and summer, fall and winter now spring again with such pain and discomfort when I sit for a prolonged period of time. I still remain in pain, then I went to a specialist who thought it was adhesions and I underwent surgery in Jan of 04 and in feb of 04. I a m now going to the pelvic institute at Graduate hospital in Phila. I am currenly going to pt and taking meds neur and muscle relaxers, now I am taking for one week some bladder meds and they want to look inside my bladder also, I am going to print out that site and bring it with me next week to my dr's. I read all the symptoms and I can't believe that this sounds so much like what I have been going through. I had three shots yesteday, I do not feel any different yet. My new Dr. is so compasionate and is working with my pt to try to get to the bottom of my pain. I will let you know what they say next thursday when I go. I do not think it is my bladder but I do think now more then ever that is is nerve related. Now if it is what is next. Please keep in touch as will I. Mary
  #5  
Unread 05-14-2004, 10:54 AM
sitting pain--pudendal nerve entrapment

Hi JuniperBreeze!

It sounds like you have been through an awful lot already! Unfortunately most of us go through a lot of tests and referrals trying to find our way with this problem.

I wanted to mention that urinary continence problems are very common with this. The pudendal nerve is a mixed nerve--that means it controls both sensation and function. It has partial control of both the bladder and rectal sphincters. I have some urinary leakage that has twice improved in the aftermath of nerve blocks, so this tells me my pudendal nerve is definitely causing that. Of course, the blocks wear off and so does the relief in my case. That's why I'm going forward to have the nerve decompressed. They will only let you have so many blocks because the steroids which can heal, can also be irritating to the nerve fibers if overused. Besides, there is no sense in continuing blocks if they don't give relief for more than a short while.

Good luck with your next appointment. There is all kinds of information on www.tipna.org that you can print off to take in with you. However if you still have questions please visit as you will certainly have people in the same boat to talk to about it.

I'm glad the timing of these posts worked out so well for you!

Celeste
  #6  
Unread 05-14-2004, 11:50 AM
pudendal nerve entrapment

Hi Celeste,
Thank you for your reply. It sounds like you have been through alot. I cant imagine having this 2 years let alone 10 or more (without going nuts!). From what I am reading it sounds as though Houston is the only place in the U.S. to get a correct Dx?
I dont know if I should even mess around with my neuro. I have had 2 MRIs, X-rays, ultrasound and next week a test for nerve damage I cant remember the name but he says it give a little shock, ( I am sorry these meds make me forget) That part I remember! This test will probley be inconclusive because they need to place the probe in specific area am I right?
I have been dx with everything from vulvodynia to herniated disc
(which my neuro says the disc thing is nothing to worry about. It is just my age and everyone gets some form of them. I am 47 yrs old.( I do not have vulvodynia which my gyn thought)
Celeste, has this affected your legs at all? My left leg has a feeling of sciatica but neuro says it is from the affected nerve. In other words the herniated disc is not pressing on anything.
You are so right about the neurontin. I dont know what I would do if I had small children to care for. My fear is I might forget the stove is on and burn the house down! They keep upping my dose because it isn't working. I dont know what else to do. Are there any meds that help you that dont make you feel this way?
My pain is burning when seated, if it is really bad even when standing, pain when urinating, bowel movements, twinges of pain in vagina and rectum and the sciatica feeling. Even when I cough I get a twinge! I do feel good in the morning but It dosnt take long for the cycle to begin.
Sometimes I want to run away from my body. I feel like i am going to go crazy!
Sorry so long but It is good to talk to someone who has been down this road.
I am anxious to hear from you and would like to hear about your upcomming surgery. Will you have that done in Houston as well?
Take care Celeste. Thank you for your reply...Bedaleigh
  #7  
Unread 05-14-2004, 12:12 PM
sitting pain--pudendal nerve entrapment

Hi Bedaleigh,

From what I am reading it sounds as though Houston is the only place in the U.S. to get a correct Dx?

--Yes, that's about how it shakes out. My experience was that most of the workup I had elsewhere couldn't be used, they had to repeat it so it would be done according to the French protocol.

I dont know if I should even mess around with my neuro.

--That's up to you. You can have a phone consult with the Houston team coordinator Dr. Renney and he can tell you if he thinks they can help. You have to set up secure messaging through his site then fax him some forms on his secure fax.

I have had 2 MRIs, X-rays, ultrasound and next week a test for nerve damage I cant remember the name but he says it give a little shock, ( I am sorry these meds make me forget) That part I remember! This test will probley be inconclusive because they need to place the probe in specific area am I right?

--It's great that you already had the MRI; see if you can get your films back to take to Houston with you if you go (shouldn't be a problem, they are your documents). The nerve test is probably the PNLMT (pudendal nerve motor latency test) and it's important for the diagnosis. Unfortunately Houston can't accept the results from anywhere else and will make you repeat them. It's not "that bad" of a test, and I had it once before I went to TX too. But the thing is, even if your result is less than 4 (ie normal), a non-PNE specialist might say it's not your pudendal nerve, whereas the Texas team also goes by symptoms and response to a blocking of the nerve at the spinal level. So yes, you might not really get anywhere with a neuro who is not on the same page.

I have been dx with everything from vulvodynia to herniated disc
(which my neuro says the disc thing is nothing to worry about. It is just my age and everyone gets some form of them. I am 47 yrs old.( I do not have vulvodynia which my gyn thought)

--Vulvodynia just means sore vulva, and there isn't a whole lot they will even do for it, so I wouldn't sweat this diagnosis or lack of it.

Celeste, has this affected your legs at all? My left leg has a feeling of sciatica but neuro says it is from the affected nerve. In other words the herniated disc is not pressing on anything.

--No, but sometimes I have some pain at the bottom of the butt cheek. Other people do have thigh and leg pain, and the neurologists all say it is because the sciatic nerve is very close to the pudendal nerve, and sometimes there is "cross talk" between them. So a pudendal nerve problem can indeed show up as a leg pain/numbness problem.

You are so right about the neurontin. I dont know what I would do if I had small children to care for.

--Neurontin turned me into a very dangerous driver and a mom who didn't keep very good tabs on what a mischief maker was into :h no::. Nothing bad happened in those two days I was on it, but the scares were enough to make me say I couldn't be on this stuff and keep up with my life.

Are there any meds that help you that dont make you feel this way?

--I gave up on meds, but you might post this on www.tipna.org because other people have tried a lot more than I have; I can't remember all the different stuff they reported.

My pain is burning when seated, if it is really bad even when standing, pain when urinating, bowel movements, twinges of pain in vagina and rectum and the sciatica feeling. Even when I cough I get a twinge! I do feel good in the morning but It dosnt take long for the cycle to begin.

--Feeling okay when you wake up (ie from bed rest, so all pressure is off the nerve) is a classic sign of PNE. I think you should get evaluated.

Will you have that done in Houston as well?

--Oh yes, I am not switching now! LOL Thanks for your kind words.

Celeste
  #8  
Unread 05-17-2004, 10:49 AM
sitting pain--pudendal nerve entrapment

Hi Ladies!
I just left the tipna site and saw your posts there. I have been on Hyster Sisters since my LAVH last September. Since developing this new problem in January I have also been reading the IC-Network site as well. My doctors don't know what is wrong with me. I have urethral burning and soreness and sometimes I feel like there is something partially in my vagina (like I need to push something out). My gyn suspected IC so I started researching that even though I have no sensitivity to food or urgency or frequency. CT scan and cystoscope were both normal (just a little swelling and redness in the urethra). A urologist and a uro/gyno both have no answer and have pretty much abandoned me. My regular gyn is still trying to help. He gave me a 7 day steroid dose-pak two weeks ago that seemed to help some. I guess I'm not sure what kind of pain PNE causes. Can it cause only urethral burning and soreness (especially when sitting)? Thanks for any input.
Jean
  #9  
Unread 05-17-2004, 11:28 AM
sitting pain--pudendal nerve entrapment

Hi Jean!
Isnt this just fun trying to figure out what is the matter with us? Thank goodness for the web. At least we can try and guide the Drs. in some kind of direction. Even though I have not been dx yet but think it is pn, this is how I feel.. Burning pain in vagina especially when seated (GYN thought I had vulvodynia and mentioned IC but never had me tested) at first it felt like I was constantly being stimulated Now it is just a burning with lightning twinges , pain when I am urinating about half way through also hurts to have BM. I also have tingleing down my leg to my foot but Neuro says it is not sciatica.
You say you feel like something is in your vagina? I belive I read that that is a complaint of PN. I feel like there is something in my rectum. Sitting makes the burning worse and goes away when standing or laying down (laying down for me works the best) Also sitting on the toilet brings relief I feel pretty good in the morning but it doent take long for it to appear.
There is so much information on the tipna site. Also in a search just type in pudendal nerve entrapment or pudendal nerve neuralgia. You will get alot of info there. Another forum is pudendalnerve.info
Keep in touch. I would like to hear what you find out as I too am seaching for an answer. Brenda
  #10  
Unread 05-17-2004, 11:49 AM
sitting pain--pudendal nerve entrapment

Jean, I think you should post on www.tipna.org as there are others who have a similar description of their pain and they can tell you more about it. Mine started out feeling like there was a razor blade sitting on the outside of my vagina, and now I sometimes have the feeling of another blade in the rectum. I have some urinary leakage, too, and the bladder absolutely can be affected by trouble with the pudendal nerve. The IC site is great; I ordered a seat cushion they sell and it has helped a lot when sitting can't be avoided. It has a large open place in the middle so nothing will touch my painful areas. It is not a total answer, but it helps me until I can have my surgery and start healing.

To know if you really have PNE, you need to see a doctor who is very well versed in it. If you have not had it all that long (weeks, months) there is a chance steroids may help you more than somebody who has had it for 2 years, like me. One of the men on the site just reported that a 5 day pack of prednisone tablets had helped him some. Trouble is, I don't know how long you can be on that. He has not had the nerve testing or diagnostic blocks either, so I can't say for sure what that would mean to you. But if your pain came on as a result of a hyster, I think there is a good chance you do have PNE. Part of the history that the experts are really interested in, is if you had an even that made it start. For some it's an accident, for others it's different abdominal or rectal surgeries, for others it's birth, and for some it's weightlifting injury or an unusual amount of unrelieved sitting.

Come over and post to see if your story rings a bell with anyone. If nothing else, you'll get to talk to somebody in the same boat.
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