Health Organization for Pudendal Education

Hi Everyone!!

Wanted to give an update about my first appt with Dr. Sheldon Jordan in Santa Monica today. My 1st real interaction with a doctor who is PN-aware. And I would love to get people's input on his diagnosis and treatment plan.

Just to recap, I had a very traumatic delivery with vacuum assist and 2 lacerations on my left vaginal wall completely separate from my 3rd deg episiotomy. B/c I was on prednisone (Rx'd by my rheumatologist), the delivering doctor was unable to suture the lacerations so he used an interuterine balloon to stop the hemorrhaging (ballon left in for 24 hrs - way longer than it should have). Doctor did not attempt to resuture the lacerations (not sure why). I'm about 14 wks postpartum with no real change in pain levels. Different doctors have postulated 1) the nerve is entrapped within scar tissue as my vaginal lacerations healed or 2) the nerve is damaged/bruised from compression by the interuterine balloon.

At first, Dr. J thought my nerve was entrapped at the pudendal canal since my vaginal pain didn't begin until 3-4 weeks after my delivery. He said if the pain was from compression, I would have felt it right away or a least 1-2 days after they inserted the interuterine balloon. But after doing a physical exam where he pressed hard on the pudendal canal, I only had mild/moderate tenderness on my left side compared to my right side. He did a quick vaginal exam just to check out the scar and when he touched it with a cotton swab, I let him know that's where my pain was. He now thinks that the nerve endings of the pudendal nerve are entrapped in scar tissue from the lacerations similar to chronic incisional pain that people get from surgeries. Although I didn't scream out in pain when he pressed my left pudendal canal area, it was more tender than my right side - any answers as to why?

Dr. J is suggesting a sympathetic nerve block and botox injections (with Myoblock - the type "B" of botox which he said is better as it would diffuse into more areas than just the injection site). When I asked where the injection site would be for the nerve block (CT guided I believe he said), he pointed at my back/left side just below my rib cage. The injection would include anesthetic and a water soluble steroid (Merrie has told me this gets around the crystalization problem). For botox, I forget which muscles he wanted to inject but said it would be a 500 unit(?) vial and he would also inject directly into my scar tissue on the vaginal wall. He would also inlcude some wydase in this injection to help soften the scar tissue. I would be under sedation as he said it would be crazy to do it without.

Dr. J does not take insurance so the cost of today's initial consult was $618 (yikes!) and to do the sympathetic nerve block and botox would be $1848 (double yikes!) not including the cost of the botox. However, with a 20% discount that members have told me about, it would come to just under $1500 (no discounts allowed on initial consult). Botox we're trying to order ourselves from RiteAid so we can use our insurance to cover but we need to get prior authorization first so I don't know if our insurance will allow it - if not Dr. J said probably around another $600 for the botox vial. I guess I'm leaning towards going ahead and doing all the injections since I don't really have any other options right now. The pain meds I'm on haven't been helping much and acupuncture hasn't made any difference (actually gave me more pain in my tailbone area but I'll post about that in the acupuncture section). I restart PT tomorrow but with Julie Sarton this time who seems so much more PN knowledgeable. Dr. J believes that with botox, PT with Julie will be more beneficial. Both Julie and Dr. J said my muscles are spasmed on my left side. I have my next appt with Julie tomorrow and Dr. J asked that Julie fax him over all the muscles that are spasmed so he knows which ones to inject with botox.

Dr. J sounded hopeful that because I'm still early from the onset of my PN, that he can "cure" me of the pain with the nerve block and botox injections. He said if I just continue with only the pain meds and PT, most likely my pain will get worse and become more of a complex regional pain syndrome. If the injections don't work, I'm not sure what the next steps are (I forgot to ask). He also added that I should stop the Lyrica that I'm on and just take gabapentin - he said there wasn't really a difference between the two. He also suggested I try the sustained release tramadol (I guess I was only on the regular tramadol which didn't help me much) instead of the Nucynta I'm taking. He also gave me an Rx for gabapentin/lidocain suppositories.

I'm just so worried about money right now since I'm only 2 years out of (expensive) grad school and I had to quit my job due to all the pain from PN. But I guess I have to do whatever it takes since I can't spend the rest of my life in bed and need to get back to earning an income. Okay, I think I've included all the info from my appt today and I look forward to people's responses. Thank you so much everyone - this forum has been such a wonderful source of support and information. <3

Hey NewMom

I was beginning to worry about you! Glad to hear you from you again, and that you have been working on your treatment plan. I'm afraid I don't have any advice to give since I am too chicken to try any aggressive interventions such as nerve blocks. Have had too many pelvic surgeries and just want to give it all a rest. Hoping that time will heal.

How's the baby doing? Sleeping through the night yet?

Best of luck to you.

Aw, thanks Lernica! I've been here! - on the forum everyday reading old posts and trying to learn as much as I can about PN and my options. Just haven't been posting since I feel like I'm in a holding pattern. Although I did try acupuncture and am restarting PT so I'll post about those soon. Been talking to Merrie and Celeste a lot and they've been a HUGE help.

The baby is doing well - not sleeping through the night yet. Longest he's gone is 6 hours, but typically he sleeps 3-4 hours. Any tips? Should he be sleeping longer by now? He's just over 3 months old.

NewMom-

We can catch up more tonight, but my opinion is this sounds like an excellent plan given what you have told me. The sypathetic blocks that I have had with Dr Jordan (and I have had many with him) are very easily tolerated and NOTHING like a PN block. While it may seem to you at first that this treatment plan seems agressive - I have to tell you that I am one of those who ended up with the complex regional pain syndrome he describes and I wish I had done the botox and sympathetic blocks earlier than I did in the course of my journey.

I am glad he is not recommending the PN block but instead the sympathetic block. As I said the sympathetic block is easily tolerated in my experience whereas one of my PN blocks caused me a hellacious flare that lasted months.

As fas as the botox - 500 units sounds high as I think each vial in 100 units - but more important than the # the units is what muscles he plans to inject. I think you should ask him and understand that and then discuss with Julie. Make sure he is targeting muscles that Julie agrees are tight and need the botox. I agree that the botox makes the PT more effective and better tolerated. That has consistently been my experience.

Also - I hate to scare you more about costs - but the costs you are quoting below do not include the cost of the surgical facility which is called CAST. You need to call them and talk to them about if they will take your insurance and what your co-pays may be with them. What type of insurance do you have? Even though Dr Jordan does not take insurance, if your plan has an out of network component, he will provide you will detailed reports and billing statements that you can submit. I generally get reimbursed from 60-90% of his fees from my insurance since he writes thorough reports and has helped me with documentation for appeals.

I am personally not of the opinion that you should wait and do nothing. You have been taking a lot of meds and you are still in agnoizing pain and you have waitied several weeks. The main thing on your side is trying to nip this in the bud before it becomes a long term chronic pain condition.

Merrie

Ok, what is a "sympathetic" nerve block? This is the first I've heard of it. Couldn't find alot on this forum, either. What is it and what are peoples' experiences with it?

Sorry to hear about all your troubles, Merrie. Just curious, how does RSD manifest itself in the pelvis? I have heard about it in the extremities but not in the pelvis. According to your signature you started botox treatments within three months of having PN symptoms. That wasn't soon enough to arrest your RSD?

NewMom, wasn't 6 hours of sleep heavenly??? Too bad it didn't last! Each baby has their own maturation schedules and unfortunately there's no way to speed them up!

I had Botox with Dr.Jordan and I paid dearly for several weeks with intractable pain. It was 200 units, not 500. Be aware that there is a risk associated with Botox and I am not the only one.
I don't mean to discourage you but I certainly wish somebody would have warned me back then. At the time it was sold as a cure-all.

Hi There,
Congrats on the new little one....Sounds like you had a rough birth though. I have not had a sympathetic block but would try one in a heartbeat as I have sympathetic pain for sure. I have to say be careful with the botox. I had 2 rounds of 2 bottles each and while it did help a lot with the pain it traveled distantly in my body causing weakness. It has a lot of side effects.I am very sensitive to drugs and I had a lot injected, your reaction might be tolerable but my suggestion is do a lot of research. Pub med ( the NIH website ) has articles about it and also some of the side effects. I agree though that you must not fool around...try hard not to let your pain go regional it is HELL on earth.
Good Luck,
Roxy

I never had this kind of block and don't know anything about how it's given or what to expect. I guess it's worth a try, as is changing your medication mix. He's saying the opposite of what everyone else does about Neurontin vs Lyrica, though.

I'm of the opinion that if you try the treatment, whatever happens will be valuable information either way it ends up. I think the hardest thing is to keep wondering if something is the right way to go. You've already taken a lot of other things off the list. Unfortunately, trial and error is usually all we have.

My only remark about Botox is that Dr. Popeney says they will no longer do it on patients pudendal pain patients who haven't had decompression surgery, because it doesn't give results. They think it's useful in residual pain for some who are post op, but that's it.

What I don't understand is how many attempts would Dr. Jordan want to take with it before declaring it not an answer? I always found that a helpful part of the experience, because I don't do well with open-ended stuff. I need a plan. Thanks for the update!

Roxy, do you have RSD in the pelvis? What is it and how did it start?

Thank you so much everyone - this is why I love this forum so much!! My doctor suggested finding a postpartum support group, but you guys are my support group! Even though I've only been a member for such a short while, I feel so close to many of you. You guys have been my PN family! Especially at a time where I've been unable to share even with my closests friends. Everyone is always a wealth of information and experience and for that I am so grateful. <HUGS>

I am glad to hear of the bad and the good from the botox injections. It's better to be well informed so I don't feel too blindsided if things don't go exactly as planned (although I pray they will). My guess is that I'll probably go ahead and do the injections since at this point I don't have too many other options. After all your suggestions, I know I need to find out which muscles Dr. J wants to inject and with how much. And I'd like to get my PT's opinion also (although she mentioned to me in passing that she's heard bad things about Dr. J from other patients). As I'm finding with everything PN related, there's never a clear cut answer and decisions seem to be wraught with just as many cons as pros and pain reduction is never a guarantee. Sigh...almost feels like playing roulette guessing how how bodies will react to each treatment plan.

Oh and I double checked the Rx that Dr. J wrote for the botox (actual drug name was Myobloc) and he wrote it as 5000 units. Is that an error? B/c during my exam he said one vial should be enough for my injections.

And thanks for the tip Merrie - I'll definitely give CAST a call tomorrow to ask about billing. I have Blue Cross insurance and I believe Greg said they do take that insurance, however in regards to Dr. J's fees they typically only reimbursed him about 25% of it. So you must have a great insurance plan to get 60-90% back! And I'm kind of curious too - did Dr. J have an answer as to why you developed complex regional pain syndrome even though you started botox within 3 months of having PN symptoms? I guess that fact kind of scares me - I'm at 14 wks postpartum.

Lernica, I'm not sure how a sympathetic nerve block is different from a PN block. I feel like there are so many more questions I want to ask Dr. J! All I know is that the injection site is at a different location. Do they normally sedate you for a PN block too?

Roxy, what kind of side effects did you have from the botox? What kind of body weakness did you have and did the side effects eventually resolve themselves? Did your pain levels end up decreasing permanently at all? Did you end up with complex regional pain syndrome also? My gosh, how everyone has suffered so much - it breaks my heart so!

Celeste, thank you as always for the valuable info and advice. I guess I was so excited that this may possibly be a "cure" I didn't think to ask what next steps would be if it didn't work or if he would try more botox. It's just been such a roller coaster ride (and I'm just beginning!) and I'm scared of having false hope.