Health Organization for Pudendal Education

I've been following this forum for about a year now, but I'm posting for the first time because I had surgery with Dr. Dellon earlier this month, and I'm scared that it wasn't successful because I'm still in a lot of pain (more than I had prior to surgery).

He removed the damanged portion of the perineal branch and resected it into a muscle, and he decompressed the dorsal branch from the Alcock canal. He did this on both side.

For a day or so after surgery, I felt much better, besides the swelling and incision pain. But I started to feel much much worse about 10 days ago, and it's not getting better even though the swelling has gone down. (I've been keeping a pain journal to make sure I'm not being bias in my evaluation of my pain.)

I reached out to him, but he didn't give me much to go on. He said the pain should be getting better by now, but that was all he said. I asked if I could come in to talk to him, and he said I could come back in about a month. I'm really freaking out because 1) I'm about to go back to work and I'm scared that I won't be able to function, and 2) I'm so terrified that this didn't work and that I'm going to be in the same pain I've been in or worse. And right now, life doesn't feel worth living. I'm hurting all the time, and sometimes it's so bad that I have to hide myself from my family so they won't see how miserable I am. (I have a very young child who doesn't understand.) I can't wait another month not knowing if I wasted the effort on surgery or worse--made my condition worse.

When he came out from surgery, he told my husband that he saw the compressed nerve and that I had a lot of scar tissue around the damaged nerve, so I don't think he was on the wrong track. But based on others' accounts of their surgeries with him, and the fact that he said I "should be feeling better by now," I'm worried that my surgery failed.

Has anyone else had surgery with him and still felt pain three weeks out? Please let me know; I feel so terribly desperate for answers, and I don't have any.

Hi Erin,

I have not had surgery myself, but from what I've gathered reading about others' experiences, it can take a very long time to feel improvements. I think I've read that it can take many months or longer because nerves take such a long time to heal. In fact, given what I've read on here about recovery from surgery, I'm surprised he thought you'd be feeling better so soon. So, I think it is way too early to fret. Can you get an extension on your medical leave from work?

Here are a couple of pain management ideas. Violet has posted about alternating between very warm and cold water in a shallow tubs that she set up in her bathtub. She did this after her surgery and thought it helped her recover, so you could try that. I can't find her post right now, but if you do a little searching, you should be able to find it. I manage my pain by putting frozen condoms wrapped in a paper towel on a maxi pad in my underwear (I have one in now as always). That might be something to try when you want to be up and around your family or if you have to return to work. If you search for condoms, you'll find my detailed post. Keep us posted.

April

Thank you so much, April! Honestly, I've been a mess for the past two days, and this helped me hold onto hope more than you know.

It feels like I'm asking for something huge and selfish by hoping that my pain is reduced or eliminated, but it really shouldn't feel that way. I hate the idea of my life being effectively over due to debilitating pain. Until about six months ago, my pain was bad, but manageable, and I could even exercise within reason and have (very modified) sex with my husband. Since November, it's been so bad that I can barely leave my bed without a sharp increase in pain, jeans have become a thing of the past, and my husband and I live like monks (though he's so understanding and supportive about it). I just want a semblance of a life back. Even just a 50 percent reduction in pain would be enough to be the type of wife, mother, and person I want to be.

I'm so so sorry for everyone who's suffering with this. It's terrible, cruel, and unfair. Regardless of what happens with my recovery, you are all warriors for hanging in there with this every day.

Hi Erin,

Sorry you are going through this but please don't give up hope yet. I had worse pain for awhile after surgery too. For most people who post on the PN forums who had PNE surgery it takes months to see improvement because nerves heal so slowly. I took opioids for 9 months after surgery. Maybe some of Dr. Dellon's patients recover very quickly. It just isn't something we typically see happening with patients who post on this forum.

Maybe you can take some opioids temporarily until the pain calms down. The way I did it is I did not take the time released opioids -- I just took the 4-6 hour tablets and I took them just in the late afternoon and evening when the pain was worst so that I could be human for my family in the evening. That way I did not become addicted and I did not develop a tolerance to the drugs. I don't know where your pain is but you might want to try some salon pas over-the-counter patches part of the time too. Or you could try some other topical remedies like compounded cream of gabapentin, ketamine, and baclofen or some OTC creams with 20% benzocaine in them.

Violet

So, it's been five weeks now, and I am doing better. I'm not cured by any stretch yet, but I am much better than I was two weeks ago. I spoke with Dr. Marvel, who many of you know as one the PN experts in the country, and he said it'd be impossible to know for sure how successful everything would be for at least 1-2 months, and more likely 6-12 months. And he confirmed that it's normal to feel worse for a while before getting better. So that helped a lot. I just wish my expectations had been set better with Dr. Dellon before the surgery. I was expecting tangible relief within a couple weeks, and that sounds like it's not to be expected. (And Dr. Dellon told me later that he thinks I'm on a normal recovery track.)

Oh, good. It's so good to hear that you are doing better. And it's great that you were able to get Dr. Marvel's take on this. What he said matches what I've read on the forum. It's good, also, that at this point Dr. Dellon is confirming that you are on track. Thanks for updating us on it. Keep us posted.

Best,
April

I'm kind of despairing right now, tbh. I've been in increased pain for several days now, and Dr. Dellon hasn't really been responding well to my emails. (He's really not a great communicator, I've found. I wrote saying that though I'd been better for a couple weeks, my pain was worse and I was worried that it's not normal. He responded, "glad you're having some good days." I don't know what to make of answers like that.)

Because of my pain and fear that I'm not going to get better, I've been weepy and depressed and miserable for my family to be around. My husband is doing his best to insulate our son from my grief, which is good, but I feel so scared and isolated. I honestly don't know what to do, and I hate how unfeeling pretty much all the doctors I talk to are. I have, as a side effect, urine retention issues and I therefore get chronic UTIs. But no urologist I've spoken to knows anything about PN and just lectures me on after-sex hygiene (as if sex were possible), and prescribes antibiotics. And none of my pain doctors will give me more than a short-term store of Tramadol, which barely takes the edge off the pain. Why does is seem like such a fight to be taken seriously, even and especially with doctors)?

I'm so sorry, Erin. That sounds really difficult. I do think it takes many months to recover from this surgery, so I wouldn't worry about not getting better at this point. Based on what I've read on the forum, I think this is normal. So you have a pain doctor, but s/he is only prescribing you tramadol? That is surprising given what you're going through. I think the pain doctor or Dr. Dellon should be able to prescribe a stronger opioid than that, and they should also be able to prescribe non-opioid medications that reduce nerve pain. I'm on four medications (nortriptyline, gabapentin, tolterodine, and nucynta), and only one is an opioid (nucynta). The tolterodine reduces my bladder urgency. You can review the pain medications that are on the home page to get some other ideas. My pain doctor has also considered putting me on norco, which is a combination of hydrocodone and acetaminophen, but I've not tried it yet. You may be able to make some medication suggestions to your pain doctor. Is ice helping? I freeze condoms and wrap them in a wet paper towel and put them on a pad in my underwear. It helps me tremendously.

April

Erin,

I don't know what the original cause of your PN was but your history can have something to do with the recovery period. Do you know what triggered PNE for you?

I have talked to many, many post-op PN patients. No one I know of has gotten well in a few weeks. It takes months. So I think it is way too soon to fall into despair. You may want to ask your pain doc about buprenorphine. It is an opioid, but a partial agonist, so my understanding is that you are less likely to develop a tolerance to it. Have you tried anything to supplement the tramadol -- like lyrica? If your current doctor won't help you find a medication that helps you more, then you may want to consider looking for another pain doctor. If that doesn't work out then you will have to use a lot of home remedies like hot/cold sitz baths, topical creams, ice packs, etc. to get you through this first phase after surgery.

Violet

Thank you both. I think I was having a little breakdown on Saturday, and it's hard, as you all know. Dr. Dellon has a reputation for not being the best communicator, and that's really been my experience. He also told me that I can no longer lift my son up (he's 3), when I asked if I could once I hit the six-week recovery mark. He didn't tell me that pre-surgery, so I had no idea that that was the last time I'd be able to pick him up and hold him, and the realization hit hard. He didn't seem to understand why that would upset me. He suggested lifting small weights instead.

I don't know if it's the state I'm in or what, but I've been to four different pain doctors since moving back to MD, and none will prescribe pain meds, even the doctor who diagnosed me. I can't take Lyrica because of a pre-existing condition that puts me at heart attack risk, and gabapentin doesn't help at all. Ice helps a little, but when the pain feels like it's deep inside, which mine usually does, it doesn't offer much relief. The best thing is generally lying down and breathing deep, but that's not something I can do all the time.

I'm so glad you guys have experience with others who've had the surgery and have taken months to get better. That wasn't really the expectation I was given (I was told it'd take months to fully recover, but I didn't know it'd hurt more at first), so I've been scared that the surgery failed or worse--some me worse. It's so helpful to know there's still the chance that I'll feel better. Thank you so much for giving me that glimmer of hope.