Health Organization for Pudendal Education

Hi folks, I have been lurking on your site for about two weeks. So many helpful posts and I appreciate the tone and respect. I seem to share some parts of some of these stories, I live in a rural area. My health care options are limited, the quality is pretty basic (like if you have a sore throat or get cut on barb wire) and health insurance options also limited. I am an hour and a half from the big city with full range of options, but my insurance and finding a specialist in this area are still quite complicated. That is why I would so appreciate input from this experienced group as ideas of what I should do next, what kind of doctor to pursue etc. I definitely have to do something and not just give in to despair.
Here's a run down. I will try to be brief.
55 female, consider myself healthy and moderate active.
20 years ago left groin began aching after strenuous 4 day back pack with heavy pack and dehydration
Pain became quite defined like a small bean in my groin, no lump at all, it does feel a little thick or ropey, but hardly.
Periods of painful "flare ups"-- pain radiating along my "panty line" up to hip and down to inside of left leg
Episodes of vaginal pain. Also, as bizarre as it sounds, when I have an orgasm a pain in my groin (same spot) fires off like a hot wire connecting it all (I can't believe I am writing about this)
10 months ago the pain in groin and vagina "rev'd up" and I got some pain pills for few days. I felt like I had a golf ball pushing in my vagina from the left and my NP said it felt tight and she could feel spasms. I was out of my mind with pain.
During all this I have had MRIs of back and pelvic region, xray of hip, ultrasound to check for tumors. Various kinds of PT some with bio feedback, massage, even tried acupuncutre. Not taking any pills-- need to avoid these as much as can unless I am convinced they are part of a cure.

Since the big "melt down " 10 mths ago, I have had off and on severe pain that last a few days to two weeks in my groin, hip, deep vaginal left side and inner left leg near rectum (closer to my leg tho).
also some numbness on left side of outer vagina--strange tinglings.
3 weeks ago the PT told me to do 30 kegels a day holding for 10 seconds. I started doing this, but realized I could not figure out how to release. Also realized I have to bare down to urinate.. which she said not to, but I honestly cannot figure out how to pee with out. AFter a few days of the kegels I was out of my mind with pain, could not sit ( have an hour and half commute to work), absolutely had to stand as much as I could.
I can walk 3-8 miles on flat ground going forward... but just trying to do slide toe taps hurts my groin and inner leg--
Laying down gives some relief and especially if I pull my legs up.
I have learned -- don't separate my legs getting out of car, don't bound up the stairs, don't swing your leg over a fence, don't lift bales of hay or grand babies, don't ride a horse,no bike and for sure NO MORE HULA HOOPING ever again (and darn, I was so good at it).And no more kegels until I am convinced they are really going to help!
Sometmes there is a fluttering inside my groin down by my vagina (sorry I cannot figure out the anatomy)-- it feels like spasms but doesn't hurt.
Put ice gel bags on my groin, hip and lower area of my groin --between my legs, after 2 plus hours this really helped.
I do have a sense of relief at times and am grateful for it when it comes. Always there is still the ache in the groin and all the pain always seems to start there.

Anyway, feel like a fool going on like this, but really need to do something, I want to travel and live fully in so many ways. Bless you all.

Hello Madjugar and welcome to HOPE. I am so sorry to hear all that you've been through. There are many people on this forum who have had similar experiences looking for a diagnosis, you are very definitely not alone in this.

You do have some PN -related symptoms, and your pain does sound like nerve pain. The pain when sitting and the foreign body sensation are both very characteristic of PN, also the hot wire sensations that you describe - and please don't worry, we've all had to get past talking about our embarrassing bits! - not a lot of choice there, really...

Kegels are a very bad idea for anyone with PN symptoms. They increase tension in the pelvic floor, and there is usually too much tension there to start with. They cause increased pressure which bears upon the already irritated nerve - and the result is increased pain.

With regard to the difficulty starting to urinate, many of us have had this symptom, including me. I did not find any specific answer to it myself, I hope that someone else will come along with advice. I used to try to relax, distract my mind, and keep as upright as possible. I do remember that some people have found that when they truly cannot go, and know that they need to, it is sometimes possible to go when standing in the shower, for some reason.

With regard to not taking any meds - there is a down side to this. I do understand your reluctance to accept medication, but you need to be aware that if you leave chronic pain unmanaged - if you leave these pain signals to run unchecked - then the pain gate can get 'stuck open' and it can become very difficult to get the pain to stop. I do think that you need to look at pain management as a high priority.

(The medications that are used for neuropathic pain are not the usual ones - things like paracetamol/acetaminophen do not help. Instead there are medications such as amitriptyline or nortriptyline, gabapentin or pregabalin. That last - pregabalin - was a magic pill for me, it made a huge difference.)

Finally two things - please don't sit! (Except with a cushion that prevents the pain) This is a big lifestyle change but it is very important - sitting is going to make things worse. We have all had to come to terms with this, you will find a lot of information on the boards about it.

And please consider seeing a PN specialist, to get his opinion on how best to move forward now. Again, you will find a list of doctors on the home pages.

I do hope that things improve for you soon.

Hi Madjugar
You are right of course medication will not be a cure but Calluna has mentioned why a targeted regime can be important. Many (including me) use an antidepressant like cymbalta along side one of the drugs Calluna mentioned (Lyrica has worked best for me too) and tramadol for pain (as opposed to nerve pain) If you are worried that medication just masks the pain allowing you to do more and make things worse, lifestyle changes like those you have already mentioned and not sitting will help of course and to some extent whatever the damage is, it has really been done already. You will probably need the help of expert physio at least to see any improvement.
Given your location travelling to a PN aware physio may be difficult to impossible? Maybe make the decision to go straight to one on the PN doctors listed on the home pages here. A Hollis Potter pelvic scan is another option but most doctors will diagnose without a scan as the imaging isn't quite there yet. Her reports do seem excellent however.
Some of your symptoms like groin and hip pain are a little more unusual as I'm sure a laberal hip tear has been ruled out through the imaging you have had? ? I wondered if you had any piriformis muscle involvement as many of us have. I feel that my tight piriformis which is a major problem with my pain, drags my groin and hips into the pain equation, although you haven't mentioned buttock pain, so maybe I am way off with that one. Might be worth checking if only to rule it out The P muscle is used in those actions you described like getting out of the car and over a fence however the obturator internus muscle does a similar thing too. The home pages are a wealth of anatomical info btw. Another muscle to be aware of is the obturator externus which laterally rotates the hip and is positioned in the areas where you have described some of your pain. I sound as if I know what I am talking about and that is far from the truth just thinking out loud really.
Whatever you decide to do I hope you get some answers and good treatment soon. I know there will be others who will advise you, glad you have found us.
Take care,
Helen

Madjugar,

Sorry to hear about your pain. It does sound very familiar. Many of us, including me, have a lot of groin pain, when walking and when sitting down. The key marker of pudendal neuralgia is pain when sitting, and it certainly sounds like you have that.

It is unfortunate that you got that wrong advice about doing kegels. They are a definite no-no for pn pain.

My advice to you is to read as much as you can on this website about PN, its specialists, and treatment options. It does sound like you need some expert guidance and I'm sorry that you may have to travel some distance to get it.

Just remember, you are not alone in this journey and we are here to help you in whatever way we can. Here's my small contribution: if you're having trouble peeing, try (1) sitting in a warm sitz bath; (2) standing in a hot shower; or (3) filling a perineum bottle with warm water and spraying it on your vulva while sitting on the toilet. (These bottles, made of soft plastic, are available on maternity wards; I have kept mine for years after having my last baby.)

Take care, and keep it touch!

Hi there,
I just wanted to let you know that many of the symptoms you are describing are almost exactly the same as mine were when I first started with PN about 3 yrs ago. My pain is on my left side and affects the left side of my vagina, buttock, sit bone area, hip, and down my left leg. Not always the exact same spot on any given day. I underwent the decompression surgery almost 2 yrs ago in NH. It was so bad, I was in so much pain just driving 3 miles to work. Since the surgery I am doing much better, but I really don't know if it is due to the surgery or the lifestyle changes I have made. My work got me a stand up work station so now I stand most of the day. I think it is probably a combination of both the surgery and the changes I have made. I do think that you should look into medication options. I live a pretty normal life on the meds I take (gabapentin and amytriptiline). I do notice more pain if I happen to forget a dose. I don't really love the idea of being on meds forever, but right now I just want to live as normal as possible and the meds help. I saw many doctors in my local area that didn't have a clue. Nothing really changed until I saw Dr. Conway. I agree that you should check out the list of doctors and see who is close to you.
This site has so many people that truly understand how you feel. You should always feel that you can ask anyone anything on this site. It helped me alot when I was going thru my worst time.
Wishing you well,
Gracie

gracie wrote: My pain is on my left side and affects the left side of my vagina, buttock, sit bone area, hip, and down my left leg. Not always the exact same spot on any given day.

Same. I'm glad you're feeling somewhat better now, Gracie.

Madjugar,

I have been living with PN for 4 months now but have become an "expert" with my own body. Being in tune with your body enables you to live a "new normal". Agree with the ladies number 1 get your pain under control. Find a doctor with whom you can give the info from the home page and tick off the symptoms that match up with PN.

I would recommend Valium to help with the peeing situation. In response to the irritated PN nerve, the pelvic floor goes into spasm, therby inhibiting normal bladder function and emptying.

Let us know any questions you have. We talk about ANYTHING without judgement whatsoever.

cari

Hi there

I agree with Calluna, you need to get your pain under control as it can drag you down and you are less able to cope and be strong.

Here you will be amongst friends, so you can be as candid as you like.

BTW I find that standing up to pee does help a lot to start the flow going.

Cheers
Peaches

Thank you everyone for your thoughts and advice. A couple of days later now, much ice, a good rolffing massage, my pain is decreased enough I can sit some. And when standing and walking it is comfortable. How much do other folk's pain scale range?

I am so glad you are better!