His and Her Health

Can anyone help? I have a sister who is really suffering with terrible, "dirty feeling" sensations in both vaginal and rectal area. It is constant pain/relentless sensations. She has relieve only when sitting on a toilet seat when standing. Even laying down gives her no real relief. She needs to take a sleeping pill to fall asleep. Do you have any idea what this is? It has been very difficult for her to manage and she is somewhat depressed. She has gone the route of many of you, with no satisfaction. Please help.

Pudendal neuralgia/entrapment or levator ani syndrome?

I have always thought it was PNE but doctors in her area (St. Charles, MO) tell her there is no such thing; they have never heard of it. I am beginning to think she has PNE AND levator ani syndrome. Do you think that is possible?
She says it is constantly with her and seems to be getting worse. She was about to give up and seems to cry a lot. I am hoping she will go on this forum, and I think she might have posted here two years ago but at that time, no one seemed to offer any help. I think there is more information now, but, unfortunately, it seems that most doctors have no clue about pelvic floor issues and pudendal nerve involvement.

Her latest doctor asked her if masturbation helped at all! After a few visits to him, she realized that he has no clue as to what she is experiencing. She described one of her symptoms as being raped without let up, feeling a knife being pushed inside her, feeling as if she was sitting on a ball, feeling as if her inner parts were hanging outside of her body...horrible sensations.
She is going back to her internist and to her gyn this week. She can get to the U of W in St. Louis but, even there, there doesn't seem to be help.

thanks for your post.

Sorry to hear about your sister's suffering. It is difficult to find the right doctor.( I certainly can attest to that) There are many resources online if you google pudendal neuralgia or pudendal nerve entrapment. I know that there are only a handful of doctors scattered throughout the country that specialize in diagnosing it. I think if you do a search for pudendal neuralgia, that will help you gather more info. Good luck

Thank you, Sarah. I have asked my sister to come on this forum where there are so many helpful people like you. It is just amazing to me how many doctors "laugh off" pudendal nerve entrapment. Even my wonderful internist said he certainly knew of the pudendal nerve but he had not heard the term before.

Have a nice day!

nothing surprises me anymore....

Phyl, I am not sure I understand "dirty feeling?" Also just bc someone has relief on toilet seat don't jump to PNE. The type of a seat also relieves pressure on the perineum. It is great your sister has such support from you. Tell her not to give up. I know I have patients coming to me (PT) directly. Maybe she can do that and from there find an MD specialist?

Niva, thank you. I have been researching sites on the internet for several years now in an attempt to help her. The "dirty feelings" come from the fact that she feels as if she is having an endless organism -- as if she is being raped continuously. But, in addition, she has the other manifestations...she felt that her insides were falling out and would actually feel to see if that was really happening. She just calls it constant jabbing, thrusting, knife-stab feelings, twisting, pulling in both the vaginal area AND the rectal area. She feels like she is sitting on a round ball.
I even suggested she create a "toilet seat" chair but that didn't help. I figure if a toilet seat gives her relief, some such configuration could work. I suggested she try a kneeler, but that doesn't work. I've suggested she create her own pillow, trying to find the pressure points when she sits (but she has not done that yet). She has relief only when standing; she never gets relief from the symptoms.
I'm in Massachusetts; she is in St. Louis.
I know she has had different tests and has seen different doctors but they don't seem to know what to do. In a certain position, she is able to lay down, but needs pain meds to allow her to sleep. To look at her, you cannot tell that anything unusual is going on inside.
I found the name of a PT who specializes in pelvic floor problems; she is in St. Peter, MO which is close to Lee's house. But I have also asked her to join this forum to get direct answers and help from you. She will do that.
Thank you so much, Niva. She is determined to try to find some help; she needs to! I think I am one of the few who understands her problem. We came to the conclusion that it has to be the pudendal nerve from everything that I've pulled up from different sites, but that needs to be confirmed by a specialist -- and they seem to be difficult to find.
One thing that MIGHT be of interest is that she is very small. She weighed less than 100 pounds when she had her first baby and the baby was 9 pounds 5 ounces. I believe her other two children were also quite large. Not sure if this has any significance.
Thanks, again.
Phyl

Phyl, a few thingsa come to mind: There is a disorder called persistent genital arousal disorder (PGAD) which women complain of (uncomfortably)constant arousal. But as you said there is more here. As for the pregnancy, there can defintely be pudendal injury during that time especially delivery. It may not have to do with the size of baby though. Did she have a vaginal delivery? Was there use of forceps or vacuum? What was her positioning, etc all these can factor to an injury while delivering. But is this when the problem began?
I would also recommend some therapy with either a psych or social worker or some mind body work. These symptoms can cause a lot of emotional distress.
She should get in touch with the PT or some pelvic specialist soon!
Good Luck!

Niva, once again, thank you. Lee will be home tomorrow and I will pass all of this information on to her. I found this name as an APA therapist.
Do you think she would be a good start for Lee? I appreciate all the time you've spent answering the questions I have.


Linda Rueschhoff, PT
Education: BS in Physical Therapy in 1983 from St. Louis University
Practice Information: Owner of private practice, Heritage Physical Therapy, since 1989. Focus on treatment of pelvic floor dysfunction, urinary and fecal incontinence, constipation, chronic pelvic pain, dyspareunia, vaginismus, osteoporosis, and pregnancy related musculoskeletal problems.

Niva,

Sometimes I will be walking along and get a sharp pain up my vagina out of the blue- is this a spasm? Is it the PN that I feel?

Niva, when my bladder is full and I drop my pelvic floor as if I am going to urinate, but don't - its burny - what does this sound like- pfm problem?

Phyl, looks like this PT treats a variety of pelvic floor issues. I looked on her website and it seems in MO you do still need a MD referral though. She should call and speak to someone.
sarah1-I am not sure if that is a spasm. muscle pain is usually more described as an ache, sore, dull....As for your 2nd question, you may be doing the drops incorrectly? Dropping is an act of the muscles, yes.

<small>[ 03-23-2009, 11:10 PM: Message edited by: Moderator ]</small>

Niva,

these are very sharp almost like electronic lightening bolt feelings that come out of the blue and knock me off my feet either in my rectum or vagina- I always thought they were spasms? but you don't think? what else could it be

Niva: Once again, here I am. I found this information on the website from U or Rochester. It certainly sounds like what is plaguing Lee.

What is Pudendal Nerve Entrapment?
Pudendal Nerve Entrapment is a pain condition for no apparent reason in the lower central pelvic areas. These are the anal region, perineum, and scrotum and penis or vulva. Pain is worse upon sitting and less when standing or sitting on a donut cushion or toilet seat. The pain could be stinging, burning, stabbing, aching, knife-like, irritation, cramping, spasm, tightness, crawling on the skin, twisting, pins and needles, numbness, and hyper sensitivity. The pain is piercing and very comparable to a toothache. It often starts in one place and progresses.

Niva, do you see a lot of this in your office. Do you agree with the term: Pudendal Nerve Entrapment. I just can't believe that doctors tell Lee "there is no such thing."

You are such a big help on this forum. I just want to tell you that many on this forum get so much help from you. You're great!

Have a good day.

Phyl