Health Organization for Pudendal Education

Hello and hope I can get some idea as to if I fit into a pudendal patient.
Whether you are male of female I would appreciate you telling me the location of your pain and on a scale of one to ten what would you give your pain on a bad day?
I am sorry if this has been done before or elsewhere.
Maybe to save me the embarrasement of no one writing some good soul could tell me
thanks
you are such a lovely bunch bless you
love little mo
xxx

I am a female and I have pain in my sacral area and sit bone areas (left greater than right). I also have developed muscle pain all over my body since my PN symptoms. I get pain in my feet a lot if I don't wear really suppportive shoes. I have vulvar burning at times. Pain with BM's at times (burning before, during, and after and I am not constipated). Clitorial pain at times and especially with arousal or intercourse. Sometimes I have urinary frequency (mostly when I am really flared), but deep massage to my abdominal muscles seems to help that as I have trigger points all over my body. All the muscles in my butt are tight and I have atrophy of my left gluteal muscles. I think that about covers it

Most days my pain hovers around a 4-5, but by the end of the day and on bad days my pain easily can go up to the 7-8 range. I don't usually let it get much higher than 7 without taking something for pain (narcotics or tramadol or ativan or something). I should add that my pain is a 4-5 with extreme hyperavoidance of sitting and limitation of my daily activites.

Hope this helps and welcome to Hope. Feel free to ask any questions. No question is silly and we are happy to help!

I have pain on the right side in the deep part of my pelvic. It hurts more before and after bowel movements. I have slow urinary flow meaning I have to mentally tell myself pee come down. Sometimes it takes a min to start the flow. It burns in my right butt but narc helps. I have vaginal pain during and after intercourse. I have anxiety from it. On a good day pain level is 6 and bad day 8-9. I have suffered for 3 years but plan to see Dr. Conaway.

Little Mo,

Symptoms of PN can vary from person to person so a good starting place would be to read the overview of symptoms page and that might help you to figure out if you fit the PN picture. Click on this link: http://pudendalhope.org/node/9

Hello Violet
Thank you for leading me to the article .I have read and re read this so many times and out of roughly 25 symptoms I relate to 3 at the most.
My pain and symptoms get better toward the end of the day
Laying down helps with the pain as it appears to be gravity causing it , also there has been no mention any where that the bulge can be felt dropping, and I can wiggle this burning lump often.
I was hoping to get some words/ information together to perhaps have a last crack at the whip (so to speak 0 with my GP....bearing in mind he is the one that upset me some three years ago when I sat in his surgery telling him I had a lump inside my body behind the clitoris and found it to embarrasing then to tell him it verged on some kind of sexual arousal.
I had to repeat the same words to a urology team at the hospital when I finally was reffered ther.
They also looked at me as if I was crazy especially when every scan/ x ray etc showed nothing.
As you know I went from specialist to specialist doctor to doctor hospital to hospital
It was said by a specialist it was not musculoskeletal, and confimed by many others.
By asking other members I was going to gain information that perhaps can only come from the horses mouth, also it would be interesting, as well as an opportuninty to gage the pain some members are coping with.
They have probably written it down somewhere sometime that would be obvious ..I was hoping to scroll and see if I fit in with pudendal outside the written guidelines.
I am feeling very nervous at seeing this doctor today, but I need a consistency in my life right now as I am fast falling after three years of pain, procedures ops and more pain with doctors also dropping me as I think I may be a little to over proactive for them.
It was very kind of you again Violet to have informed me of that information as it might have been that I had missed it, and I really do not want to sound ungrateful because I am not , by any means ...I have the greatest respect for the work you put in Violet..I hope your message to me hasn't put any one off writing and telling of their pain level and so sorry to have to say it is something like that information given to me by yourself that I would have much preffered to have had in pm...so sorry if this does sound ungrateful as I say I am not and really hope people /members continue to tell where their pain is.
Thanks to alll
love from little mo...ps. I have rushed through this letter as I hAD sat writing for an hour carefully choosing right words and then when I went to submit I was told to register but I already had so maybe I was too long aye
lots of love
little mo
xx

Hi Little Mo

Just to mention, very quickly - a lot of people come directly to the forum because it shows up on google searches - I know that's what I did! - and the information pages can and do get overlooked. It does happen.....


Ok. With regard to where the pain is, I think that probably no two of us have symptoms alike. I do have a diagnosis of PN, by the way.

The pain that I experience can be literally anywhere in the area innervated by the pudendal nerve. That is, the whole of the perineum, from the back passage to the front of the vulva. There is rectal, vaginal, and urethral pain as well. Usually it feels hot, as if burning, and sometimes I get electric shock type pains that shoot down the inside of the leg to the foot. But sometimes it is sharp like a knife. Usually I wake with no pain, and it gets worse during the day. Things that bring it on without fail are BMs, sex, and sitting.

The feeling of a foreign object inside the vagina or rectum is one that I had a lot at the beginning, but I don't get it now. This is a classic PN symptom by the way - there isn't any object or lump actually there at all, it just feels as if there is, weird huh. (If there is actually a lump there that can be physically touched, then that's not the same thing.)

The feeling of sexual hyperarousal is another symptom linked with PN, it is the nerve playing tricks basically, and I've been having some problems with it over recent months. I have found that tramadol suppresses it.

In terms of level - first thing to say is, I use the pain scale on this website, here. I would say that over the last week my average pain has been 4-5. I've had spikes up to 8 several times this last week. This is with tramadol SR.

It has been a fairly typical week, and my pain is well managed. In other words, I've got my head around it, it doesn't scare me, and life is still good. (I wouldn't have said that 18 months ago, though. Not by a long way.)

I hope this is the sort of information that you are looking for, and I also hope that you get a diagnosis soon.

calluna wrote:Just to mention, very quickly - a lot of people come directly to the forum because it shows up on google searches - I know that's what I did! - and the information pages can and do get overlooked. It does happen......

Thanks for explaining, Calluna. That is why I posted the link on symptoms so that anyone reading this thread with the same questions as Little Mo could find the answers quickly and easily.

Little Mo,

If you can actually feel something inside of you with your finger and wiggle it I'm wondering why the doctors can't feel it. What size does it feel like? Typically it is very easy for physicians to tell if there is an organ prolapsed into the vaginal area so I'm not sure what's going on with you but I hope that some kind doctor will be able to help you sort it out. You do have a lot of the same symptoms as the rest of us PN gals -- you don't have to have all of the ones listed to fit the PN picture. Most people only have a few of them.

It is usually straightforward to identify a prolapse, but not always. It can happen that things prolapsing into the vagina go back where they belong when you lie down. Which is why a good gynae will do an exam standing up, if the person is describing a prolapse and they aren't finding it with a standard examination. Prolapses aren't really a lump, though - they are a soft-ish bulge usually. If it is the cervix falling down, it sort of feels like the end of your nose - it is firm. If bits descend outside the body, then they can get pretty sore and painful as then there is friction of course. TMI probably, sorry!

Anyway. Little mo, I really hope the doctor was sympathetic. What you have must be PN related, whether or not you have a prolapse as well, because you have the HA going on there and that is like a big red flag - pudendal nerve problem!

Thank you every one who has eplied to this post.
I am aware symptoms vary ...it is sometimes I think for a suffer to put it in writing it is quite theraputic it also helps reminding people what their pain is
reading the posts I have gone wow how do you manage? and then remeber my own syptoms i am so glad I found you people because I thought I was the only person in the whole world with the lump that started behind the clitoris to now falling into the vagina witth gravity it is very, very painful and burns I feel it pulling perhaps other nerves and veins and yet I have had many many scans ..I think it goes back up when lying flat as that is my only pain relief...the morphine pethedin lyrica amytriptlyn and other drugs do not take the pain away I am desperate, probably like most of you sufferes and my heart goes out to you. Out of one day I have one good hour...my life is grim and I am so deppressed ..the doctiors do not want to know me now I have pain management.
I really do not know where to get help now but I thank you all for being so kind and especially Violet that withou her many would have suffered more thank you violet
god bless
little mo

I forgot, Little Mo -- did you say where you live yet -- I think you said UK or Ireland? Is there any way you can see one of the PN experts -- and maybe have an evaluation by one of the PT's who treats people with PN?