Overwhelmed, Hurting so bad, What Next? Mind spinning!

[Len]

Hi all,

I am so lucky to have found this website! (Unfortunately I think I am going to become pretty active

I'll try to keep this short and ask my more specific questions in the relevant areas. Would really be grateful for any feedback.

Woke up one morning in April 2011 with bad nausea (pregnancy like), bad pain in the lower tainbone/coccyx and horrific pressure in rectum. Also had very 'raw/sensitive' feeling after unination. Thought I was maybe pregnant (unfortunately wrong). For about a week the pain was really bad, and when I sat it felt like sitting on knives. Then pain dulled, came about once every ten days and lasted 3,4 days and went away. Very annoying, but didn't stop my life.

May 31 was at the gym on elliptical machine, suddenly with each slide of the leg I had the sensation of a knife slicing rectum/vaginal area. Extremely painful. Thought I needed to streth a pulled muscle, so I kept myself going till I collapsed on machine from pain (embarrassing everyone running over to me!) Had a horribly painful week.

June - November same as before, pain dulled, came about once every ten days and lasted 3,4 days and went away. Very annoying, but didn't stop my life.

Mid-November - Now - pain never went, just got worse and worse. On November 26 pain exploded! Very low coccyx area had small circular area with the pain of labor (birth) along with the worst rectum pressure ever. Ran to the hospital begging for pain relief, unable to handle the pain (the first of many trips, never getting any relief, including with morphine IV). (Has anyone has that feeling of labor pains? This lasted about a month straight, and now comes and goes.. )

February 21 2012 - Oh no!! Pains moved to vaginal area - sudden 'lighting bolts' going through volva areas. Extremely uncomfortable sensation. Expanded to other areas of the vagina, along with a deep aching hard pain in mons pubis area.Pain in very low pelvis.

In short, I have been a prisoner to pain at home for the last 14 weeks. I am completely debilitated. Can't do the simplest of things.

Taking insane amounts of morphine - sometimes 30mg x 3, 4 times a day and lots liquid oxycodone (not even sure this is available everywhere abroad - it give the feeling of a shot of vodka when taken, and sometimes does take the edge off after about 20 minutes.) I have had instances when nothing at all can control the pain, and I feel as thought I am going in and out of consciousness from pain. Unable to sit or find comfortable position due to constant agonizing pain.

Main issues today (most since Nov 26):
***Near constant low coccyx pain (sometimes severe to level of labor pain)
***Inside 'walls' of rectum extremely sensitive/feel of raw nerve sensation
***Feeling of large foreign object in rectum giving extreme pressure (To be a bit graphic, large grapefruit/melon, but instead of peel, razor-blades spinning around)
***Deep aching pains in outside, lower buttocks area
***When attempting to sit, entire area feels extremely sensitive, sometimes knives, depending on hour/day.... (making it near impossible)
***Severe pain no longer just when sitting, but in all positions (standing/sitting - sometimes when standing lately, fell like my rectum is just going to fall out!)
***Upon waking, pain much less (this leaves me frozen in bed for hours to avoid pain starting)
***Bladder irritation after urination
***Rather uncomfortable sciatica pain from buttocks to leg - has happened less than ten times (but happening now)
***(Past couple of days pain has moved to vaginal area to my dismay!) Area sensitive, very uncomfortable 'lighting bolts' in volva area. Had one episode yesterday of deep ache in mons pubis area that turned into excruciating pain (similar to coccyx pain) - was horrific, in and out of consciousness from pains front and back all morning
***Low pelvis pain
***Recently uncomfortable (but not super painful) when passing stools
***Constipation, but I am taking crazy amounts of opids, so very logical. Taking laxatives, fiber, had to do enema the other day, a mess!

NOTE:As I am sure most of you know, each and everyone of these 'symptoms' in-itself is excruciatingly painful. When put all together, a mess...

Tests done - all normal:
***MRI: Spine, sacrum, detailed coccyx
***CT: Chest, abdomen, detailed coccyx
***US: abdomen, pelvis
***Xray: back
***Colonoscopy
***Numerous checks by neurologists, orthopedic/spine specialists, neurologists, gynecologists and urogynecologists, rheumatologist, surgeon, gastroenterologists, etc.
***Numerous blood tests

Medications tried:
***Every type of pain medication (patches too). Now at levels of morphine 30mg (MSIR) x 4 and large amounts of oxycodone liquid - sometimes helps take the edge off. At times makes me tired, which is good, but at times has no effect (not sure why this is.)
***Given numerous medications (some 'cocktails') intravenously at hospital including, morphine - this never touches pain.

Pain Clinic: Given ganglion impar area block under fluoroscopy with marcaine and diprospan on January 30.
Had 100% complete relief of everything rectum related. This lasted about 6 hours for the time of waking up in morning. (Had block done evening before). (Was so amazing, I didn't know what to do with myself , but then it came back....

Notes:
***At times there are especially difficult 'flare-ups' and no medication touches any pains - blood pressure rises to around 180 during these times.
***Pain does not wake me at night (thankfully)
***Have lost about 7.5 kilo (about 16 pounds) in past couple of months as no appetite (this is a good thing, but not for good reason)

There seems to be almost no one in my country familiar with this condition - finally found a neurologist who had studied PN after having a patient with all these crazy symptoms and having no idea what was going on, so reached out to greater medical world and has been educating himself, along with my gastroenterologist.

And that is where I am right now. I am so beyond overwhelmed I am hurting sooooo bad (in the mist an extra painful period as I write this, but really wanted to get posted to start getting some answers). My family is being destroyed - my husband is amazing (just took a couple of weeks leave from work to get us as far as possible in the process after learning of PN), but as you can imagine, it's hard. I am useless, sometimes crying in pain. I miss my kids (6 & 8), friends, fun, sun, life....

Still haven't done important test PNTML, but I have three 'positive' diagnoses, based on all of the above. One doctor said to me, "What are you doing here?? Get on the plane already!"

My question is... TO WHERE?!?!?

Where do I start? Is the next stop to have an image (as Dr. Potter does) to see exactly what is going on? France is closest to me, do I just jump to surgery? It's just so hard, I feel so alone (meaning no help from the medical community here- no one simply knows of this condition! How can that be??)

I do have family in America who are doctors (in Pittsburgh). They have been amazing, learning about this horrific condition with me. My wonderful aunt sent me an email yesterday with the Subject "Great News!!!!!" Some of what she writes is as follows:

"Just got off the phone with Dr. L at Magee. He indeed feels from the description that you do have Pudendal Neuralgia and there really is not a need for more testing. He said the cause is not always understood but it is ususally related to childbirth. It is really a vicious circle. The nerve gets entrapped in the pelvic floor muscles which causes a spasm and sometimes you get a spasm which then entraps the nerve. The good news is, is that there is help!!!

1. THE treatment for this is VERY specialized physical therapy for INTERNAL PELVIC MASSAGE. Do NOT go to anyone who does Kegel exercise..this will only make it much worse!!!! Dr. L said we are very lucky in Pgh to have the specialized PT people. It is a 6 week program of physical therapy. Dr. L said that if you are able to come to Pgh for 6 weeks (if this treatment is not available where I live) he would give us the name of whom to see for treatment.

Has anyone heard of such a treatment?? I can't be touched anywhere I hurt so much. My husband tried a couple of nights ago to very lightly rub my coccyx/buttocks area (outside), and couldn't take it. He said if he tries to massage me any lighter he won't be touching me! A six week program sounds like a magic pill sold on TV, but maybe I am wrong.

I know there is someone on this list from Pittsburgh as I saw a few posts, but now I can't find you (even via search). If you see this, please contact me. Tnks.

Other question for now, have other experienced such severe low tailbone/coccyx pain? I see how everything is connected, so it is a bit logical, but mine is sometimes so incredibly painful it's like a feeling of strong labor contractions, with constant, without a break. (I had home births, and I know this pain, and I usually have pretty strong pain tolerance....). What about low pelvis pain/discomfort? Having that right now.

So that is where I am right now. Crying as a write this, just a very bad pain day. Somehow not in depression - not sure how, but no room for anything else right now! I am trying to stay positive, but I just don't what I am trying to "stay". I just need to get moving fast. I did get a prescription for Lyrica, and will start that. (The knife rectum pain and the top are of the vagina pain (like someone is beating me with a knife) is all nerve related too?


Since I have to get treatment out of country, location really doesn't matter. Obviously somewhere in Europe is closer so easier flight, but I am more comfortable in America & have family there.


Thank you all soooo much for reading this. Any and all comments/suggestions/answers appreciated. I do need to jump on the plane tomorrow (and will have to fly business or first as I cannot sit (need to be able to lay on my side), (or even go on a stretcher - there is an organization here that does provides for free flights abroad for medical treatment and can fly you anyway possible!)


Am I wrong in thinking my case is pretty severe? I can't sit - lying on my side, or belly or standing is now almost equally uncomfortable (it did start out with sitting being the worst however).I am hurting! I am not living!


Thanks (really, from the bottom of my heart, thanks!),
Len


PS. When I asked my family dr (who has really been as helpful as possible) why she wrote for me to have a CT scan of the chest, she replied "I am trying to find cancer in your body. I have never treated anyone with such strong pain medications, even terminal patients on their last days of life, and there is nothing else that can cause this pain...." Crazy!

PPS. Went to (useless) pain dr the other day, he said it cannot be PN. When my husband asked why not, he said "because it's too rare".

[birdlife]

Went to (useless) pain dr the other day, he said it cannot be PN . . . . . "because it's too rare".

Well he's 3 sticks short of a bundle isn't he! What an idiot. I despair of some of these pain doctors.
First of all, tons of sympathy to you! Israel sounds as the UK was not so long ago, even now we only have 3 PN/E consultants dotted around the country! I'm sorry you are suffering so badly but it may become your role to educate first your own doctor, then the wider medical community you come into contact with via info from this site. You can print various information sheets from the Home page to put on their desks. People say this condition is 'rare' and I don't believe it is, it just goes undiagnosed or misdiagnosed. I think its unusual, not rare.

Internal pelvic floor therapy - your doctor/aunt is right, this is one treatment you can try. But you have to be aware that everyone is different and some have been helped and some have been made worse by internal pt. You can't afford to be made worse as things stand. You can check out personal stories on the Boards here, type in something like 'internal physio' in the Search box top right of the page and you should get a selection of threads. You'd need some real justification before you made such a drastic move as to fly from Israel for internal pelvic floor physio.

Yes, knife like vaginal and rectal pain is a known PN/E symptom. As also is a 'foreign object' feeling in vagina or rectum, or a feeling something is about to drop out. The pudendal nerve "innervates the external genitalia of both sexes and the sphincter of the bladder and rectum too", which is why your symptoms are so varied. Its a long nerve, branching 3 ways, and sufferers have varying symptoms depending on the site of the irritation or entrapment, so pudendal neuropathy IS hard for doctors to diagnose straight off. It can be caused by childbirth or other trauma such as weightlifting, by genetic predisposition (as in you might have narrow nerve tunnels such as with carpal tunnel syndrome), by the friction of cycling on a narrow hard seat, and by constant sitting.

There's been some comments recently on the Board about inguinial hernias causing some similar symptoms to PN, and as your symptoms seem to have developed after gym work it might be as well to get that checked out.

With PN/E a tight pelvic floor is usually the norm so again your aunt is right, avoid Kegels like the plague and any other therapy that worsens your symptoms, such as stretches. Avoid lifting too. It sounds as though your lumbar muscles are also tight, as are mine, and this could be the reason for the discomfort around the coccyx/sacrum. As you say, everything is connected, so tight lumbar or pelvic floor muscles will cause a knock on effect in surrounding muscles tendons and ligaments. Get the Lyrica going asap, you may find the dose will need to be increased - just have to find what's right for you, or even a combination of meds to get you out of the tight corner you're in. Am sure others will have some suggestions for you, hang on in there and glad you've found us. Hugs,

[janetm2]

Len,
You have my sympathy! Wow it seems all has gone ballistic for you but you found us and can start a plan for getting this fixed and lowering pain. I am with Birdlife on the pain dr. Anyway two things I can say is when I truly started the path to figuring out I had PNE after the muscle spasm pain restarted and was fixed but I still had pain it turnedout to also be coccyx pain. I got cortizone injection for that still had pain and went to PN-aware PT that told me PNE and sentme to surgeon (PNE surgery May 2011). Also I had shooting nerve pain earlier on in my feet 15-20 years ago and that was cleared up by amitriptylene (unfortunately I could not toleratemore of this for the pudendal nerve pain but wanted you to know the shooting pain is a nerve pain and incredibly painful -I have not forgotten that). Good luck
Janet

[White Falcon]

Len, sorry to hear of your bad situation.

I have found little relief in pain killers. Can't tolerate morphine or fentanyl at all (allergic). Hydromorphone (Dilaudid) helps a little. Demeral makes me sooo stoned. And the constipation and stomach cramps....

As an immediate solution, see if you can get a drug called sodium oxybate. It is the only thing that gives me any relief. It puts me to sleep, so at least I get a break from the pain for a few hours. The trade name for the drug in Canada and US is Xyrem. It is also known as GHB, the date rape drug. Don't know what the status is as a prescription in Israel. I know this drug has a bad reputation as a drug of abuse, but so do all the other pain killers. Sodium oxybate was originally developed as an anaesthetic for surgery, so it will put you out of your misery for a few hours for sure! It is extremely safe when taken as directed. It is metabolized through the Krebs cycle into water and carbon dioxide, so no liver damage, kidney damage, constipation, hangover, etc. It is not addictive, regardless of what the anti-drug people claim. Studies in people and animals have shown that it is not addictive, even after continual use for three years, patients stopped with no adverse effects. You also do not build up a tolerance like with other pain killers. I have been on the same dose for two years, no increase needed.

It's not a cure, just some relief during the night. Won't help during the day. But better than nothing! I don't know how I would cope if I didn't have this relief from constant pain. I hope you find something that works for you soon.

[Violet M]

Hi Len,

I'm sorry you are having such a rough time right now and that meds aren't helping much. I agree with the other gals that just because something is rare doesn't mean you can't have it. But I think you need more info before deciding on a PN diagnosis. There are other things that can cause similar symptoms and it sounds like you haven't had a PN block yet or a proper exam from someone experienced with the disease.

Internal physical therapy massage helps some people with pudendal neuralgia but I think the suggestion that a 6 week's program of PT would solve your problems seems very optimistic. With your history of exercise it's good to at least be evaluated by a PT for any musculoskeletal factors such as SIJD that could be contributing to pelvic pain. I think it's reasonable to try PT but you want to have a plan B in case it doesn't help or if it makes you worse. I was not able to tolerate internal pelvic floor massage and gave up after it caused a week-long flare-up. My PNE was a result of exercise including the elliptical and it sounds like your problems could possibly be related to exercise too.

Have you checked at University hospitals in Israel to see if there are any interventional radiologists who do pudendal nerve blocks? A nerve block can be important in determining your diagnosis. Also, most PNE surgeons want you to try a series of nerve blocks before going the surgery route. If you came to the US and tried the program in Pittsburgh would you be able to travel in the US to one of the PNE surgeons if you needed to? The US is a huge country so even if you came to Pittsburgh and then needed to see a US surgeon you would have to travel again within the US. You are in a very difficult position but you seem like a very proactive person and you have options so keep learning as much as you can and keep your courage up.

Take care,

Violet

[Lara]

There's been some comments recently on the Board about inguinial hernias causing some similar symptoms to PN, and as your symptoms seem to have developed after gym work it might be as well to get that checked out.

Birdlife,
Hi,how about umbilical hernias with fat in it? my recent CT Scan shows one .,and i was a heavy runner,any cardio existed i did it,and a lot of weghtlifting.
Ughh overwhelming,but curious

Lara.

[Anne smith]

Hi Len
I like the other really feel for you! All this advise and our own experiences I am sure although welcome! Can be I little overwhelming. I myself went many years experiencing many(not all) your symptoms and I will always remember my first consultation with a phisition at my local hospital! He ran routine tests , ultra sound, blood tests, then on his final consultation told my partner and myself that all the problem was ! Was "scar tissue" from previous surjury! Oh my god! That was twelvish years ago, and my partner was thrilled , looked at me and said" then it's back to work then" so I continued to suffer on silently for years!
Caution is needed with the in guineal hernia debate? Proseed with caution! I saw a bowel surgion on my journey, who after an m.r.i scan told me I had an inguianl hernia! And after two horrendous ops was no better for it!
All has to be explored, and the other girls are right to encourage you to check every avenue! But I know with my own life experiences would seek out p.n.e specialist first!
With hugs and encouragement
Anne smith

[Len]

First of all, tons of sympathy to you! Israel sounds as the UK was not so long ago, even now we only have 3 PN/E consultants dotted around the country! I'm sorry you are suffering so badly but it may become your role to educate first your own doctor, then the wider medical community you come into contact with via info from this site. You can print various information sheets from the Home page to put on their desks. People say this condition is 'rare' and I don't believe it is, it just goes undiagnosed or misdiagnosed. I think its unusual, not rare.

Thanks! And I agree, I can't believe it is sooooo rare, which makes me very sad as it must go misdiagnosised / undiagnosed a lot. Slowly slowly we are finding more and more people in the medical community here that know of this condition, but they just 'know of it'.

The neurosurgeon who diagnosed me (who has had another patient with this and has been educating himself & learning of this condition) said he is 100% certain this is my diagnosis, but I can do the EMG/PNTML if I want... ummmm, yes, I want! But I do think he is correct. The euro-gyne in Pgh who read my symptoms also said he indeed feels from the description that I do have PN and there really is not a need for more testing.

Are there so many people being diagnosed on symptoms alone? (We thought until today that there was no one in the entire country who even does the pudendal nerve blocks until this morning (see below).

This morning my husband met with this 'medical guru' man - not one of these crazy people who can cure people, but a man who has a huge (multi multi multi million$) organization helping others. He is supposed to know of every single medical condition in existence (without looking anything up) and meets with about 15 people per day. (It's a crazy process to get to see him, can takes months, year, thankfully we had a connection....people from all over the world come to meet with him.) I told my husband I would be surprised if he would know PNE, but he did know it right away. (He sees people for free, everything they do is for free... )

He agreed with the diagnosis, but said he has known of people being cured by a series of injections to the pudendal nerve, and I should try that first. I have never heard of this as a cure --- has anybody? He did say there is only one person who does this here, we called him, and he is not taking any new patients!!! (We are trying to see if we have any connections here.) However, this 'medical guru' man also said he would research different surgery options abroad and get back to us (who knows when...), so that does mean he doesn't believe that 100% of the time the a series of injections can cure.

Internal pelvic floor therapy - your doctor/aunt is right, this is one treatment you can try. But you have to be aware that everyone is different and some have been helped and some have been made worse by internal pt. You can't afford to be made worse as things stand. You can check out personal stories on the Boards here, type in something like 'internal physio' in the Search box top right of the page and you should get a selection of threads. You'd need some real justification before you made such a drastic move as to fly from Israel for internal pelvic floor physio.

Thanks, I did a search on the forum. Didn't read one positive result. I just can't even be touched right now, everywhere hurts and I am super sensitive, so I cannot imagine how this type of therapy could be done. There is a clinic here that does pelvic floor therapy, and I know there is one woman at the clinic who is familiar with PN, but I have not been able to get in touch with her. I know that the person I have the appointment with tomorrow doesn't know of PN (have been desperately trying to get in touch with the woman who does know of it to talk to her about it). Any suggestions on how to educate this therapist tomorrow? What she should/should not do? What do they do exactly? At least it will give me some sort of an idea if I can handle this type of therapy at all!

There's been some comments recently on the Board about inguinial hernias causing some similar symptoms to PN, and as your symptoms seem to have developed after gym work it might be as well to get that checked out.

Opps, I think I wasn't clear there. I sat for over 12 years working crazy in hi-tech (sometimes sitting 10 - 14 hours a day). I was taking a small break from work (ironically to spend more time with my kids) and this 'mess' started in April, when I had my first super-crazy 'flare-up' (that is what I have always called them, my name . After a week of this, I had mini-flare-ups every ten days or so, lasting 3 - 4 days. About 2 months later I got to the gym (was my birthday, going to start the near year off right) and got on the elliptical machine and felt the knife slicing away... So the symptoms didn't develop after a gym workout or anything, it just brought on another 'flare-up'.

It sounds as though your lumbar muscles are also tight, as are mine, and this could be the reason for the discomfort around the coccyx/sacrum.

Have you found something to help the tight lumbar muscles? Certain type of massage for example? It's so uncomfortable. I went to a pressure-point medical massage guy but felt like it was hurting more than it was helping.....

Thanks so much!

[Len]

Len,
You have my sympathy! Wow it seems all has gone ballistic for you but you found us and can start a plan for getting this fixed and lowering pain. I am with Birdlife on the pain dr. Anyway two things I can say is when I truly started the path to figuring out I had PNE after the muscle spasm pain restarted and was fixed but I still had pain it turnedout to also be coccyx pain. I got cortizone injection for that still had pain and went to PN-aware PT that told me PNE and sentme to surgeon (PNE surgery May 2011). Also I had shooting nerve pain earlier on in my feet 15-20 years ago and that was cleared up by amitriptylene (unfortunately I could not toleratemore of this for the pudendal nerve pain but wanted you to know the shooting pain is a nerve pain and incredibly painful -I have not forgotten that). Good luck
Janet

Hi Janet,

Can I ask what muscle spasm pain feels like? I am not sure I know exactly what this pain is (maybe a good thing), or maybe in my mind I call it something else. Was your surgery successful? Did it help with the coccyx pain too?

Thanks!

[birdlife]

This morning my husband met with this 'medical guru' man ...He agreed with the diagnosis, but said he has known of people being cured by a series of injections to the pudendal nerve

Presumably he's referring to the pudendal nerve blocks themselves, which are x-ray or ct-guided to within 5mm of the nerve. Heaven forbid anyone injects the nerve itself!! A cure from these blocks is rarer than hen's teeth, they're mostly diagnostic, so if you get any longstanding relief from the blocks that's certainly a huge bonus. Normal route to go is the PNMLT test to indicate if pudendal neuropathy is present, then - usually - 3 guided nerve blocks several months apart. At least a PNMLT test on its own might get you nearer a diagnosis so you can plan if you need to fly to the US or Europe to see one of the experienced PNE consultant. You have a variety of symptoms and not all may be pudendal-related, so its as well to narrow the search right down.

Tight lumbar muscles - yes, I self-treat with Triggerpoint massage (not pressurepoint). Both types of massage are painful when you have knots in your muscles but in TP massage its believed the more aggressive style of pressurepoint massage can set up yet another triggerpoint by its direct straight-down-and-sustained pressure. In TP massage you push the surface skin and underlying fascia forwards and down, then release, forwards and down then release, gradually going in deeper as the skin yields. You don't sledgehammer it straight down. I learned from the Triggerpoint Therapy Workbook by Clair Davies, which is just great for the layman to understand. Been a life-saver for me, but I have ongoing tight lumbar and pelvic muscles due to SIJD, so the triggerpoints in them always need sorting before they get too bad.

Internal pt - there are people on here who feel they've been helped by it, but they do seem to be in the minority. In your supersensitive state (do you have CPS?), maybe this physio isnt the right way to go at the moment. Think you need to get your pain levels down and get a proper diagnosis. Have a look with your doc at your present meds and see if you can be helped further.