Surgery with Dr. Dellon three weeks ago

[Violet M]

I remember when nothing would touch that deep down inside pain although I did get some relief if I pushed an ice balloon up inside vaginally right against the nerve at the ischial spine for a little while.

So my guess is that Dr. Dellon is saying not to lift your son because of the pressure it puts on the pelvic floor. That would be devastating to be told that. I'm wondering if it would be OK for you to sit down and have him crawl into your lap -- or if that is not possible, to lie down and have him snuggle beside you. Children are very resilient and they can tell if you love them, even if you can't pick them up exactly like you used to. It's tough not being able to live a normal life though.

Violet

[Erinw1]

Violet, I don't know for certain, but the best guess is that I fractured my tailbone 8 years ago. (My symptoms began about 2.5 years after that.) I was also always active, and I did lots of running, cycling, and hiking. My symptoms were very bad when they started, and I was able to get an ongoing prescription for hydrocodone while I tried physical therapy (made it worse), nerve blocks (helped, but didn't last), and medication (Cymbalta). This was when I lived in Texas. When I moved back to Maryland, I was unable to find any pain doctors who'd renew my prescription because of opiate laws, but I was doing better by this point and didn't have constant flares, so I coped. Since this past November, my symptoms got worse and worse until I was not functional, which is why I decided to move forward with the surgery. I consulted a few doctors (Dr. Marvel and Dr. Howard) before doing the surgery, and though they said they'd prefer I not end up on the operating table, they wouldn't really say why. I asked them point blank what the risks were, and the worst they said was that it might not get better at all. But getting worse wasn't presented as an option, nor was it presented with Dr. Dellon. Since looking at the messages here, it seems like it's common for people to feel worse after surgery, but he didn't really say that, and at times seemed to suggest that I'd feel better when I woke up. So I'm stressed and scared because it's very hard to get clear answers from him about where I am with my progress.

[Violet M]

According to the literature, only 1% of people get worse permanently after surgery http://www.pudendalhope.info/sites/defa ... Hibner.pdf
so I think your chances for improvement are high. I was worse temporarily but eventually the pain subsided.

I do wish doctors would at least let people know of that slim chance for getting worse but I think with such low statistics for permanent worsening of symptoms, I doubt it would make much of a difference in the choice people make. I was aware of the risk when I went into surgery but I decided to go ahead with it anyway. So, I think it's important to stay positive and do everything you can to raise your chances of getting better by being careful not to over-do and to try to keep your pain levels low with whatever means possible. I know that's tough with the new opioid laws.

Violet

[April]

I'm so sorry, Erin. It's terrible that you can't get pain medications. Can Dr. Dellon direct you to a pain clinic that would be able to help? Have you tried nortriptyline? I think that is better than gabapentin (I'm on both), and it really helps you stay asleep if that is an issue with you. Keep us posted.

April

[Erinw1]

Thank you both. I asked the doctor if he could refer me to a pain clinic, and he said he couldn't. He suggested meditation.

I've been able to have my son crawl up next me in chairs and sofas to cuddle, which is nice, but it's so hard to say, "I can't" when he asks me to pick him up. I wish the doctor would have told me that before the surgery so I could have appreciated picking him up then and also not have told him that it'd only be a "little while" before I could pick him up again.

I have had some relief from Tramadol; it keeps me from going completely over the edge. But I'm trying to stockpile it and only take it when I really need it because I don't have much. I've tried asking Dr. Marvel to refer me to a pain doctor too, and he wouldn't. I get the opioid crisis puts doctors in a bad position, but I wish people who need relief weren't being punished by this.

Violet, about how long did it take for you to start feeling better?

[Violet M]

Erin, you could check your insurance to see if a referral to pain management is required in order to go to a specialist. Even if it does not, the pain management doctor might require a referral. If so, maybe your primary care doctor would make the referral. I was on opioids for about 9 months after surgery but I didn't take them around the clock. I toughed it out during the day and just took them in the afternoon/evening. It's hard to put an exact date on when I started getting better because some things were better but some things were worse until about 9 months post-op. I wasn't able to sit much until 18 months post-op.

Violet

[FinalCountdown]

I wouldn't trust anything Dr. Dellon says. As a doctor, he's a surgeon of final resort - I'll give more details and specifics later if I can get my pain level down.

[JEV]

How are you doing. Any better

[Erinw1]

I'm sorry I haven't responded for a while. With things being up and down for so long, I found my mental health was really deteriorating when I fixated on this condition and these forums, so had to take a break. I do appreciate everyone's support and concern.

For probably a month or so, I had been doing much better. The pain levels were down, I could even tolerate sex for short periods of time, and I was able to be more physically active. I started taking Effexor both for my mood and the pain, and it seemed to make a lot of difference.

I've been in heightened levels of pain since Friday (so four days now), and that has me a bit concerned. My husband says that I'm sure to have upswings and downswings, but of course the stakes are high and every negative sign feels like a death sentence. But I'm only 3 1/2 months post surgery, and I'm trying to remind myself that the doctor said it'd be 4-6 months before I'd have any certainty about how the surgery actually went. I'm scared, but I'm trying to be hopeful. This condition has taken me to the darkest parts of my mind, and I know I can't stay there for the sake of my son or husband. So I'm trying to be optimistic. Of I disappear for a while, it's simply because I can't take the horror stories of failure right now; my emotional state is too fragile. I had a suicidal episode earlier this summer, and I think I would not be here right now if I hadn't gotten immediate professional help. So, yeah. I'm trying to stay positive. Thank you everyone, especially Violet, who have given me reason to hope that this isn't the end.

And for what it's worth, prior to four days ago, I would have said I was doing tremendously better.

[Patty]

I admire your honesty. In the height of my PN pain if it wasn't for my two dogs I would have attempted suicide. The pain brought me to a dark place like you described that I hope never to experience again. It's good you have had some lower pain days hopefully more to come.