Health Organization for Pudendal Education

I am undergoing this currently, as I have developed extremely bad anxiety over my symptoms, which unfortunately has lead to insomnia. I have tried a few medications but none have seemed to have worked so far. I am on a waiting list for CBT now also.

Hi Jessica,
Welcome from me too. I'm also in the UK. Glad you have managed to find Dr De Mello he is one of the very few people who can help with this condition so well done for that.
Just reading back on the posts here I agree that knowledgeable phyio is a good way to progress. A PN aware physio will be able to evaluate your pelvic floor muscles to see if there is any problem there with spasm or tightness. Sometimes people can simply hold tension in that area without being aware of it . . . .until. . . If that is the case it can be resolved by learning to relax those muscles. I would also get the physio to see if your piriformis muscle is tight too. This one is further up in the buttock, running from the sacroiliac area to the hip. Again if there is a problem there relaxing techniques including very easy piriformis stretches will help.
I would doubt that the L5 bulge will be instrumental in the problem unless it is impinging a nerve, and they would definitely mention this on the report if it was. If you do have back pain in that S1/L5 area, that pain could cause a tension tho' I suppose, that may cause muscle tension in the pelvis of course so get the physio to check that for any pain too.
He or she will be able to find any muscle tension although the pelvis is such a complicated and interconnected area don't expect clear answers from the start. As Calluna mentioned your own feedback on where it hurts and how any treatment worked or didn't will help a lot.
Have you got any antidepressant medication in place? Try something like cymbalta with the gabapentine perhaps? I would also suggest ordinary paracetamol for the ache. You could even top it up with the odd tramadol if required BUT beware of the constipating side effect with these meds (not the cymbalta) If you do introduce them try and get your constipation problems sorted first using Movicol or whatever. Then you will be able to readjust the movicol etc if needed. A lovely physio (not PN ) suggested eating apricots and prunes as I take tramadol and get 'in a state' with it sometimes. . . . WOW! it was more like RUN. . . . NOW!!! In other words I only eat half the amount now and YES to plenty water.
Anyway glad you have found us.
Take care,
Helen

Jessicac wrote:
Have you had any experience with physio and how long do you usually notice if it is working? My first appointment is on Monday. Is this right, can it be that my muscles are to tight and are causing nerve irritation? But if physio doesn't work does that suggest entrapment? I try to be hopeful that one day I will be pain free but with PN I worry that it's to optimistic, as am i right in saying that pain develops over time? It was also mentioned that I could have developed a stretch injury because of chronic constipation, I am not sure what form of PN that is and whether it can be cured? Violet you have had surgery, how are you getting on now? Also you said you knew of people my age getting successfully treated, do you know if they are completely cured?

Thank you

Jess

Jess, I tried physio before surgery but it didn't help much because the nerves were entrapped with continual irritation. Actually, the internal physio sent me into a huge flare-up. If your problems are primarily due to muscle tension, PT should help fairly soon. Stretch injury occurs when the nerve is entrapped in fascia or compressed between ligaments so that it cannot glide easily. Bearing down on the pelvic floor due to constipation can cause the nerve to get stretched.

Yes, I know of young people and older people who have been treated successfully. I don't like to use the word "cure" much because I think people with PN, especially if it's related to some type of musculoskeletal issue which it often is, have to be careful the rest of their lives to avoid activities that cause flare-ups. That said, I am doing great and have gone back to work where I sit quite a bit and I also engage in light exercise including "The Firm" workouts with light weights. I know another gal who says she is 95% cured and has gone back to school. Other young women have posted that they were able to have successful pregnancies.

Best,

Violet

Hey, I have the same issue. I'm seeing a neurosurgeon on Feb 14 but I don't think much will come of it. I also thought it was cauda equina or disc based on the morphology but looking at my own MRI it doesn't appear like any nerve roots are compressed. For me, relaxing, foam rolling, stretching helped out. My friend who is also a bodybuilder told me about that but I didn't believe him. While I can't sit down, I'm immeasurably better than I was a month or two ago. If it is a muscular problem then physio will help improve symptoms over time. But stressing out, being anxious will only worsen the problem as the muscles in the pelvis tense up making it an inhospitable environment for your nerves. I also have sciatic pain. I was diagnosed with L5S1 left, and central bulge. It's a very complicated area, the muscles tend to have a mind of their own. BTW I work in an office, I basically lie on the floor or stand, can't sit. But I'm no longer in constant pain from exercising. I had a much worse flare up last year but physio helped it out (I was able to sit)...seems to be a different story every year, but I have been lazy with exercises. Oh yeah, before this episode I was under a lot of stress and doing Kegels for core workout (big no no).

There's a book called 'Headache in the Pelvis' you may want to check out. I just bought it on Kindle, most of the solutions are in the middle of the book where you'll see diagrams. A lot of the book is like ad space for themselves lol, but they did have the most comprehensive information on the topic I've found so far. But that's assuming its muscular and not a true entrapment. Nature designed our pelvis in a vey stupid way with lots of nooks and crannies for nerves to get trapped.

Hey,

Sunil
Thank you for suggesting the CBT site my appointment has come through for a first session of CBT next week, I am optimistic about it helping but I feel I need to take control of the condition, instead of it controlling me. So I will try anything! I hope to that in time it will be okay, was that the case for you?

Helen,

Nice to know your from the uk also. Your right that cymbalta is a good drug, I was prescribed it was the gaba 2 weeks ago but I had horrendous side effects of vertigo and sickness along with urine retention, not good! But apparently those side effects settle after a week. I had to stop them as I needed to prepare for m pgce primary interview, I would be willing to give them another go though. What do you find gives you most relief to manage. Thanks for the tips on constipation, the apricots sound like they work for you lol I am on the movicol due to the effects of tramadol!


Violet,

Thank you making me knowledge about the stretch injury, so entrapment would be the case maybe for me I am so glad to hear about the successful pregnancies, as I myself want to myself try soon but will obviously have to be off my drugs which isn't realistic at the moment. I am realistic about the cure but I'd take 95% any day! I noticed your 80% better after surgery thats amazing!

Jason

I think our symptoms sound very similar! May I ask you what type of pain you get? Mine is deep aching within my pelvis, which randomly comes on, and strangely enough when's it mild it is relieved by sex, which makes me think its muscle?!
I agree about muscles being a complicated area especially in the pelvis, nightmare! Stress definitely makes mine 100% times worse to the point where I am bedridden. I hope something does work out for you on the 14th, let me know how it goes the book sounds interesting might give that one a look. I have physio tomorrow, hoping it doesn't send me into a flare and does some good.

Hoping we all find relief from this pain soon!

Best

Jess

Jessicac wrote:

Violet,
I noticed your 80% better after surgery thats amazing!

Actually some of my symptoms are essentially cured and I can go for hours without thinking about PNE so that's a very conservative number. I still have to be careful not to sit for hours on end day after day -- need to get up and walk around a bit every now and then.

Violet

Yeah so my symptoms have palpating rectum (feels like a heartbeat). The skin on my butt can go numb'ish - I can still poke and feel pain but it feels as if it's asleep. I would get this orgasmic type numbing in a localized spot in the perineum (orgasms generally flushed this out like your situation). In fact I would ration orgasms last year to make sure I still had enough left if I got one of those weird 'cramps'. Burning while peeing, also urine feeling like its still stuck in the urethra. There's erectile dysfunction but I don't date so I don't really care. Sciatica is just plain vanilla, nothing debilitating, gets annoying at worse. Constipation. When you injure your back or feel pain muscles can inactivate around the area so certain muscles work to hard and knot up. I think that's what happened to me because this was a slow progression, I didn't suddenly get sciatica or pudendal neuralgia from a lifting accident, it crept on me and got worse if I went back to the gym or sat for too long. Good luck! Don't freak out though, you won't lose function or control, that's what scared me most. Last year, after my MRI confirmed no cauda equina I got better. So stress has a major component to play. But either way, relaxing and destressing whether you're injured or not (But still taking appropriate action in seeing therapists and doctors) is probably best. I'll get back into meditation once my Interstitial Cystitis cushion comes in. Just remember, if nerves were being compressed or crushed, the pain would be constant and progressively worse. If it waxes and wanes its irritation vs. compression. Nerves can't survive long under true blue cauda equina type compression. So if you had it for awhile chances are its just irritation (which can come from light compression - but where?). I'm more convinced that my problem is muscular though I'm sure the disc is 'touching' the S1 nerve root which just controls my legs not my groin/butt. The entire area interacts in an odd way though, so you'll find many people on this site will have L5S1 issues. When I looked at my MRI, it appeared that the axial slice of the disc changed (from extreme left into center). The fact that it jammed center and I had symptoms in the groin led me to think its disc but not exclusively. I'm tired so sorry if I'm being repetitive. You can also check out my physios site: http://www.pelvichealthsolutions.ca/ under the 'For Patients' drop-down. Might put your mind at ease in the meantime until you can get your assessments done, or that Headache in Pelvis book. I think that helped my morale immeasurably because I know this can improve (and as a result of lower stress I'm no longer in constant pain - I tense my pelvis under stress).

Of course this is just my experience, you may have different pathology or reasons to feel the way you feel so the solutions will vary accordingly. Heh and when you read the Headache in the Pelvis, just be weary of the program they're pushing - I just looked it up on this site and it seems to have dubious repute.

I would say that the best thing for me is pacing activity, but then 'activity' now involves sitting
I have very little PN on the left, so I do tend to favour that side in a contrived 'sitting' position but I have sciatica too (both sides, tho' right side much worse) so standing and walking are affected as well.
I don't spend most of my day lying around however (although the odd duvet day is most acceptable ) but many activities have a 'payback' in pain later on so I find pacing definitely helps.
Then again some things are worth doing anyway, as I know I will always return to base line pain after a while.
Everyone is different tbh. But with me I feel as if the damage is done from a fall I had 5 years ago and I don't have real worries that things will get a lot worse now if I am sensible.
Helen

Hey guys,

Sorry I haven't replied in a while, it's been up and down. I have seen the physiotherapist, and she says that she is not focusing on a diagnosis but just carrying on treating my symptoms. She also said how I need to accept my pain as it is for now, as she believes my nerves are just irritated in my pelvic area and in time will settle down to a point where I don't think about it for weeks and have the odd flare up (wouldn't we all just love that). I am not very convinced with what she is saying and feel that a cause of the pain needs to be established.

With regards to seeing the spinal surgeon he now has another theory and it could be my l5 disc causing the problem, as the disc is damaged and the suggestion was that it could be compressing nerves and leaking spinal fluid. A discogram was mentioned as a diagnostic tool, but not sure i will be having this.

My PN specialist says how he is taking treatment slow for safety reasons, so I need to exhaust the physiotherapy and up my dose of gabapentin. I just don't know how long I can wait and which road to turn down, I have my university course starting in sep and need some relief by then

I am currently organising an appointment at the London nerve scan institute for an MRN, as I need answers.

Thank you all for kind words and advice

Jess