Where to go from here

[Violet M]

Shana, Dr. Andrew is a chiropractor who had PN himself and developed a way of treating PN patients. I don't know of anyone in the US who does this. It's not a proven method but there are several patients who have gotten better after seeing him including konedog who posted recently. If you use the search bar on the top left you can search for more posts about him.

Best,

Violet

[shljk]

Shana,

Did you go back to Dr. Coleman post hip surgery to try to figure out why you continue to have hip pain? Did you have more xrays and MRIs? Did he offer a cortisone shot(s)? Were you thoroughly checked out for hip dysplasia? Did you get more than one opinion before the hip surgery? Is there anything going on with your left hip?

I just wonder, if your hip is still giving you problems, maybe there's a connection there. It's possible that you retore your labrum, scar tissue has formed inside the joint and/or there's some resulting muscle dysfunction/bursitis. Any of those issues could cause some serious pelvic floor dysfunction.

It sounds like you're in the NYC area. Could you ask one of your drs to put in an order for you to have a 3T MRI of the pudendal nerve at HSS by Dr. Potter? That might help shed some light on what's going. And if I were you, I'd have them to do both hips at the same appointment (that's what I did - they scanned the pelvis first, then immediately did each hip -- all at the same appointment).

I completely understand how you feel about oral meds. I've had the same feelings over the last 4 yrs of PN pain (and I had bladder pain for yrs before the PN pain started). But recently, a situation came up at work where I was going to have to sit for a while every day, and I started taking narcotic pain meds regularly in order to make it through (I've been on and off meds for a long time much to my pain management PA's frustration!). All the side effects that I hated and which were the reasons I gave for not wanting to take them went away after a few days. And I realized the real reason I haven't wanted to take meds is because taking meds meant this was real and it wasn't going away -- and I haven't wanted to face that or admit it. Now, I'm not suggesting that's what is going on with you at all; I just want to reassure you that even if you think you may not be able to tolerate meds, you probably can.

[shana]

Shlijk,
I was back at Dr. Coleman yesterday he's not sure what's going on as my right hip and left hip are driving me crazy. I was able to get an immediate MRI at HSS for both hips done yesterday so Dr. C should hv results within 2 business days. This is the 2nd post-surgery MRI the 1st one showed everything was fine so I went to Dr. Richman, pain management and he did some sort of injection, don't remember what exactly, which did help but relief only last about 2 months. Like I told Dr. C, I don't want to go for injections every 2 months if I'm having so much pain there's a reason and I want it fixed for good. The left hip MRI that I had done in the past did show a tear but it was so slight and at that point, it was a year ago, I wasn't having enough pain and discomfort that Dr. C didn't think it warranted surgery.
2+ years ago when I had my hip surgery I was very trusting and believing with what my medical providers told me (I was 25 at the time of the hip surgery) and just did as told, the MRI showed labral tear, Dr. C is top he must know what he's talking about, 4 days after my initial consultation I had the labral repair surgery. I've since learned, through much heartache and no answers, that I have to be my own advocate and do research and ask lots of questions, etc., etc.,
When I speak to Dr. C next I will ask if he will order the 3T MRI otherwise I have an appointment with a uroynecologist the first wk in May and I'll ask him.
With regard to oral meds, I wish I had the same as you. I've had medical issues since elementary school, I've been on many many diff meds, probably over 100 in m guess, most of them I had to go over because of an allergic reaction, ER visit or side effects that were not bearable i.e. couldn't go to work. or simply didn't help. After my surgeries the pain meds made me so sick I just opted to bear with it, I'm more functional with the pain then with the meds as I do have a very high pain tolerance.
Case in point, I was put on meds on 2-15-13 and a wk later had to go off because the side effect was just unbearable (extreme head pain reducing me to tears) it's now 3 wks that I'm off the meds and I'm still miserable. I had a nerve block done last wk with anesthesia, I didn't want the anesthesia but the dr pushed me into it which I now regret big time, since then I've been miserable. They gv a tiny bit of anesthesia for 5-10 min and yet it effects me for days if not weeks. So pain meds are just not worth it for me