Just need to vent and ask advice

[joeparz]

Hey guys

Hope everyone is feeling better. I just thought i would update my situation and get some advice.

Well after pudendal blocks, medications, physical therapy for months, piriformis injections, MRI's, and hundreds of appointments i have finally tapped out.

Over the 4 years this condition evolved i have done nothing but get worse even with trying all the therapies available, i am running out of ideas and willpower.


My physical therapist has told me my pelvic floor is totally relaxed according to a computer she hooked me up to. So she thinks the pelvic floor is not the problem, but i am still in excruciating pain so something is definitely wrong.

EMG showed delayed signals on the right near the alcocks canal which is exactly where most of my pain is. All on the right side right about an inch below the tailbone and an inch to the right.

My MRI also showed some scarring on the right pudendal branch, and edema near my pelvic ramus. I also have a history of heavy weightlifting which is what i think caused this.

My Pudendal block definitely made me totally numb in the genital and perineum area, but i was still having some pain in my tailbone.

Well now i am officially out of ideas and am leaning towards TG surgery with DR. CONWAY.

I am very scared because my own physical therapist is worried about me getting the surgery because she has seen patients of DR.CONWAY'S and they were not doing well after the surgery.

I am in excruciating pain just about all the time now. I can't really escape it like i used to be able to and live a somewhat normal life.

I can't sit AT ALL now. It hurts way too much. The numbness is getting worse everywhere and overall function is going down as well. Sex is almost not possible anymore.

I have 0 quality of life right now

I don't know what to do anymore i can't take this pain anymore and just want it to stop. Even if it means risky surgery..........

[janetm2]

Hi Joe,
Sorry to hear you have not has better luck and are back looking for ideas. Have you tried some of the latest non-invasive things such as restorative exercise and mind body? Also, did Dr Conway say you were a candidate for TG surgery? I know Dr Marvel said I had to be a candidate per whatever he used to determine that before he would do surgery. He also said that any improvement was success and fortunately I am better and able to sit some and get around some. I haven't tried sex because I think it would be too painful and although my other gynecologist (not Marvel) and my PT group said with 6 months PT and mostly work on my part it could be pain free I was out of work too much to take that on. I retire in March so that would free up my schedule. Hoping all in all retirement will allow me to do more fun stuff. I wish you the very best and hope you can make some forward progress and surgery if you do it helps or at least does not make anything worse.
Janet

[joeparz]

Thanks for the reply.

I believe he did say i would be a candidate, but i am assuming he is going to want me to get another block. I am hoping not.

I have tried everything even mind body.

The nerve block i had before definitely made everything numb (genitals,perineum, and gluteal area) but i still feel i could feel some discomfort from where the needle went in, it felt like a bruise. So i got confused of whether my block was positive or not so a repeat might be ncessary. But i was fairly certain i was pretty numb.


I am calling tomorrow to make an appointment/hopefully talk to Dr.Conway and ask his opinion of what to do.

I have been going to therapy for 3 months now and i am way worse again. My numbness is way worse and orgasm almost feels like nothing, not too mention i can't sit at all now. I am getting worse and worse and getting nervous, i want to stop this from getting any worse and if that means surgery i just want it done and over with ya know???

[stephanies]

I don't really have any advice, but I understand how you feel. I hope you are able to get relief from your pain.

Stephanies

[janetm2]

Joe,
I hear ya. I can relate as I was going downhill and needed to do something (way before I saw all the things posted on the forum, good or bad). I was helped but not cured by surgery and was able to work enough to be able to retire in the upcoming March. It is a tough decision and I wish you the best. Let us know how you get on, I know we all want to see folks get better at least enough to sit awhile and get out and about, if not even better! Keep your chin up!
Janet

[Violet M]

Joe, I know it's a really tough decision. Do you have the option of seeing Dr. Kirk Andrew in Canada before trying surgery? Konedog has had a very successful recovery after seeing him, although not everyone does. Just another option to consider.

I can't say what the right decision is for you but I can tell you my experience. My worst pain was on one side and my PN issues started as a result of weightlifting. PT made me worse. PN blocks gave partial relief from the pain but not complete relief. Pressing along the course of the nerve internally was painful. Has your PT or physician pressed at the ischial spine or alcock's canal when doing a rectal exam? Are those areas tender?

If you go for surgery the important thing is to have realistic expectations. Cure is an elusive word when it comes to PNE. I made the decision to have surgery because I had 0 quality of life and I was willing to risk getting worse because I didn't see how it could get much worse. I would not go for surgery unless you are willing to take that risk. Surgery was not easy to go through but for me it was well worth it and even though I am not cured, I can sit for hours, work again, and work out with light weights. I still have to be careful to avoid certain activities.

Is your PT very experienced in treating patients with PN? It appears her protocol has not been successful for you. Since she is not recommending surgery I wonder if she has any better suggestions or anything else to offer. It's easy to say "don't have surgery" but if there are no other options available, where does that leave you?

My heart goes out to you. I know how agonizing this decision is and I wish you all the best.

Violet

[joeparz]

Thanks guys, i appreciate the support.

Yeah i have 0 quality of life right now. I can't work, i can't really have sex, i can't sit, i can't drive, i can't do just about anything you all know how it is.

My day consists of laying down at my computer, standing at my computer, and sleeping. Thats about it. No life at all. I can't do any of my hobbies, even the indoor ones because i can't sit to do them.

AlSO, i don't know who else experiences this, but because i am in so much pain all the time, i find it hard to focus on just about anything .Even conversations. Video games used to be a favorite for me, but i can't even play those anymore..........

My PT supposably knows a lot about PN and works with Elizabeth Cole who is supposably one of the pioneers of PN in my area.

I know she wants to help, but at this point, she said my pelvic floor was totally relaxed and that i wouldn't even need botox, so i don't see what else she can really do for me. She told me to continue the internal therapy, but i have been way worse these past few weeks so i am worried to keep seeing her.

I can barely feel myself urinating now, sex feels almost like nothing, and i am in constant pain now rather than just when sitting.

I don't want surgery and i am terrified. But i am out of options :'(

I can't keep living like this..................i am just praying i can get the surgery done and i am one of the easy cases where they can clearly see what the problem is and how to fix it. Can only hope i guess.

Also according to Dr. Conway the surgery is much easier to recover from now that he windows the ligaments rather than sever them. That's what he told me at least.

I honestly can say, and please no one get offended, i would rather have cancer than PN. At least with cancer you know what avenues to take and no one thinks you're crazy. And at the worst, you don't make it, but you fight your hardest.

With PN, it's terrifying because there is NO END IN SIGHT. If i don't get rid of this i have to live with this until my life is over........That thought is horrifying........

[Patty]

Joe who is your PT? I have heard of Elizabeth Cole. Why would they tell you to continue PT if your pelvic muscles are not in spasms or did I miss something? Have you seen anybody at Boston Urogynecolgy in Cambridge? They have some male urogynecologist there. They see a lot of CPP there. There is also a women named dr Allison Baily. I have never seen her but have heard great things about her.
Believe me Joe you are not alone. My rectal pain is just horrid... I refuse to have any more blocks. I just grin and bear it. I've lost a lot also mostly all my activities that brought me joy.
Contact me any time.

[joeparz]

Her name is Tina Dicenso, she has been doing pelvic floor work for over 10 years now with Elizabeth Cole.

Wonderful woman. Very caring and thoughtful. But like every PT i hear of or have seen, she was not able to help. It's been over 3 months, and i don't feel improved at all but instead worse.

I stay away from urodynamics just because most doctors have no idea what PN even is, especially urologists and such. I had a urologist tell me this was all anxiety related. He gave me perscription for viagra and sent me on my way. Gotta love the healthcare system here. At least i didn't go through with that cystoscopy which would have been a huge waste.

I am hoping i don't need another block, but at the same time i kind of want one to reassure myself that the pain is from the PN, as my last block was kind of middle of the road. Was so excited to have it done, i kind of forgot to pay attntion to my pain levels and locations like i was supposed to.

I have an appointment with Conway 11/5 and am hoping for the best. Even if that means booking surgery.

I decided to try a rectal valium for the first time in 2 years and it actually managed to help a little. I think. So that was a positive.

[Patty]

Went to NH last night for a lecture by Dr Conway. He seems like a caring guy and clearly is an expert in the field. His statistics show that patients dont get worse following surgery. 50% get better. The remainder really no change. Keep us posted on your nex t appointment.