Health Organization for Pudendal Education

Janet

Oh yes, getting them to fill out paperwork that states 'disabled' is quite difficult. I've been on it for a while but I remember the process was hellish. One doc wanted $600 to just fill it out once and he said he'd have to do it every 3 months for $600 again and again.

It's funny you say suppressed because at times I really feel like this is not my life, that I'm in a dream or a nightmare. I cannot fully come to terms with this burning pain and it's been 16 years. I manage to live with it and I do have laughs and good times here and there but the surreal feeling never leaves. Surely I can't have constant burning for 16 years, go bankrupt, lose my job and almost my mind and no one can figure out why?

Again, I'm really glad you had good docs. I'm glad to know some people do. I can't say all mine have been bad but a lot are clueless or flat out mean or they just don't have time for patients with a long story (which is crazy when that's their job) My PT is FANTASTIC. PT's usually are nice and they work so hard; they put their actual hands and back into the work and they also serve as a psycho-therapist when we talk about our feelings and pain.
L

Lily,
I am so sorry you have had such a long tough journey, with all the loss. It breaks my heart to know how many go through such difficulties. This condition and lack of informed medical staff just makes is harder. I only hope it gets better for those in the future. Keep perservering! Actually I did not go with diasabilty but the family medical leave act gave my the chance to work shorter days taking leave without pay so I could keep my job. I have two docctors that fill it out one for feet and one for the pelvic nerve pain. I will be able to collect a pension and am eternally grateful and extremely lucky. PT was the one to figure what was wrong and they gave me the gyne I see that does my paperwork and although not a surgeon for PNE knows all about it and very supportive. My sister in law is also a PT and works with children and very supportive. There are those that shine and keep us going! I will say I have not had sex for years even pre surgery. The gyne said I could get PT to possibly not have incredible pain but I have not worked up the nerve to try. Not sure also how tough this would be for hubby and have not even mentioned it to him yet.
Janet

Lily, it is incredible that you have gotten through this for 16 years and still have some spunk left. It seems you still have the will left to fight and I hope you will be successful this time around.

rainyday wrote: Where do USA patients get surgery?

I also was curious why it says my coccygeus muscles are symmetrically atrophied. How could those muscles atrophy??

The docs I know of in the US who are performing PNE surgery are Dr. Hibner, Dr. Castellanos, Dr. Conway, Dr. Dellon, and Dr. Filler. I highly recommend you use the search feature of the forum to read what patients have to say about each of these doctors.

Can't say for sure how the coccygeus muscles atrophied. Typically atrophy occurs if a muscle isn't used but most people don't think much about whether they are using their pelvic floor muscles. Muscles would also atrophy if blood supply to the muscles is reduced, and since nerves control vasoconstriction/vasodilation of blood vessels, neuropathy of a nerve could affect the health of a muscle. Also, impingement on a nerve or blood vessel could affect blood supply to a muscle. Just brainstorming ideas here.

Violet

Funny you should say that Violet... tonight I was listening to Willie Nelson and living in the promise land came on and when he sang 'the prayer of every man is to know how freedom feels' I just burst into tears. It's always just below the surface. I want to live long enough to be free of this condition. Since I got the coccyx block Tuesday I've developed a weird feeling down by my ankle - water feels hotter, air feels hot when the a/c hits it and it's tingling weirdly.

I can already see the Doc's face and hear him saying it makes no sense.

I'm actually not very strong at all when it comes to all this... I try something and when it fails again I fall apart for 2 years LOL

I can only take solace in the fact that my pain is far less than it used to be.

Thanks Janet for your support. That's really great you got to work less hours and keep the job. I was trying to tell everyone (docs, disability, etc.) that if I could have a few alterations in my work situation I could probably still hold the job... but there was no room for compromise where I worked... so I lost the job... which was hard. I'm happy now to be on the disability but it has it's disadvantages too. And getting your pension is amazing.

I can totally understand why you wouldn't want to have sex. The idea that it could flare things and bring back pain is a definite barrier to relaxing and enjoying. I know some people say just being intimate is nice, cuddling and touching... but if that leads to being very aroused I know I might go ahead and try something I might regret... so anything intimate could get out of hand... or it could go the other way and the fear would stop any 'turned on' feelings. I'm single so it's not an issue for me to have to decide... not sure what I would do if I had a partner. Very important to have a caring and understanding partner. I think the partners who are involved in this condition via their loved ones deserve a lot of support and respect too.

Now I have to decide what my next move will be. My piriformis always hurts... so I'm thinking I may go that way... though the PT doesn't seem to think my piriformis is a problem. It aches constantly. Was wondering... when people address their piriformis, do they generally go with botox to calm it down or a steroid to try to heal it? My favorite fantasy is having someone to rub my piriformis constantly. LOL not to win Lotto or marry a movie star... no, I want a PT walking behind me rubbing it cause it always hurts!

That sounds like a sound theory on the atrophy. I was wondering if having it tapered forward somehow presses on the muscles and stops free blood flow? I wish we had the answers.
Lily

Lily,
I am with you for a having my own personal PT! Maybe if you search on piriformis you can see what others had for treatment and of course any relief would be grand. I am sorry you job could not accommodate you. I was very lucky to have the option and support from my managers. Especially as I was moved into a new office right before surgery. I did try to get back to full time but realized it really was too risky and with the doctor saying I should work less if I could and filling out the paperwork, I am just doing my best. My hubby has been super terrific through all this and although I am sure he would love to have sex he does not want to hurt me. He is happy I am still around and worries as my Mom died age 54 and brother at 55, and I am 53 now. They had cancer and brother also had heart issues and strokes, my ailments are not deadly but certainly chronic pain can be depressing. Okay so my song lately was Jon Bon Jovi's "livin' on a prayer" with chorus of half way there, not sure how I get the other half! Hang in there!
Janet

Hi Janet

It's funny you should say that. I too have a lot of cancer in my family and heart disease.

If you are experiencing a decently pain-free life from this condition NOTHING should get in the way of keeping it that way. Work, sex, none of it. To be out of pain is worth anything and everything. Keep doing what you're doing! If something is meant to change you'll know it and you'll know when the feeling hits you. Recovery and staying that way is the most important thing. I know my body feels fragile, if I sit wrong or move wrong I pay for it... so better to err on the side of caution. I am single and would love a partner to share things with, sex or no, so I'm sure your hubby is happy to have you. You seem like a really sweet person too

Even though I lost the job, my friends who are not well consider me lucky (and I am) to be able to live with an illness/condition without the pressures of work. So many deserve disability and don't get it. I feel lucky in that regard.

Actually, I realized that I'm not sure what your pain level is now Janet. You sound cheerful so I assumed your pain was moderate. Forgive me if I was wrong. I'd say my pain is a 4 now... how does yours feel? Only if you want to talk about if of course.

L

Lily,
You are so right to do what we can and keep moving forward. My pain still varies a ggod portion can be 2 but but can still be 5-6 or higher at times. When they both kick up as rarely those are certainly the stay home do absolutely nothing times. The hard part is sometimes not realizing you are overdoing, this condition can sneak on you. Mostly I am well but it is ever present. Have to focus on my Aunt who just broke her hip at age 86. The mentioned sending her a nursing home for rehab but my uncle convinced them to go with the hospital rehab. Medicare is trying to save money and the nursing home could have been over 50 miles away! I am too far to visit but will be up her way soon.
Janet

Lily, have you ever tried a TENS unit for the piriformis muscle? I used one for 2 hours a day for quite awhile after PN surgery and it was great. Some people have tried Botox into that muscle. It might be a good idea to try a trigger point injection with something like bupivocaine as a trial to see if Botox is likely to work. Some physicians have suggested that the piriformis muscle can impinge on the pudendal nerve. Also the sciatic nerve runs under the piriformis so if it's in spasm it can affect your sciatic nerve. I used to get numbness and tingling down my leg and into my foot from the piriformis being in spasm. Often the nerves and blood vessels run alongside each other so if one is affected, the other may be too.

Violet

Violet

I know you have been here more than. 10 year. Yould know every expertise,personality and kindness and know who woulk like to answer patient question through.
I have many questions to ask physician. If necessary, I would like to redo because my surgery performed for left side, however, I stll have right PN pain. Can you introduce one physician who would like to answer my questions through Email ,I do not live in US , E mail tends to be only way to contact with PNE physician.

Hopeman

Hello

I had a few with Dr. Echenberg in PA. Small needle totally numbed the area.

Redz