Why does laying down in bed on your back worsen symptoms?

[Violet M]

DG, I think for me the obturator internus(OI) was in spasm due to the pudendal nerve being irritated from PNE but the fact that the OI was in spasm was also a pain generator causing burning in the inner thighs. After my PNE surgery a tens unit targeting the obturator internus muscle was really helpful in stopping the burning and bruised feeling caused by the OI tightness. I didn't have FAI like you so I can't say what that would feel like.

You also have to consider the spinal issues as being a possible cause of your pain, especially the impingement on S2 since the pudendal nerve comes off of that nerve root. Has that been ruled out yet as the root cause of your pain? It can be really complicated to isolate what is the real pain generator. I hope you can get this sorted out.

Violet

[DakotaGirl]

Hi Violet

I guess I am not good at explaining my situation to doctors or on the forum!
So I tell my spine/pain mgmt dr that I believe my back is partly responsible for the genital/bladder pain and because the MRI shows no really obvious signs of nerve impingement, they say it's not becasue of the spine and just to be sure, see a uro-gyn about the bladder frequency. The cysts are incidental findings and are not impinging according to MRI. Let's say there were though for arguments sake: what would I do about them? I guess that's the real question. Surgery isn't an option, especially aT .8 mm. What could I do?
Also , where could I place electrodes for OI spasm? I know it's tight and tender but could you explain a little more about thigh burning? I don't think I have that, more of a tingling in the inside of the growing, right genital, and radiating down to the foot after moving a certain way or even after peeing.
Does that explain it any better ? It's so hard for me to summarize such a convoluted problem. Thanks again for any insight.

[Karyn]

Hi DG,

I think Violet's suggestion to further explore the perineural cysts (a/k/a Tarlov Cysts) as a cause of your symptoms is a sound one. Unfortunately, this is much easier said than done. I'm not sure where you're located, but the only surgeon I know of who will accept your imaging and medical history via mail is Dr. Frank Feigenbaum in Dallas, TX. Historically, it takes him 3 - 6 months to call you with the findings of his review. If you don't want to wait that long, you'd have to make an appointment at his Dallas or OK office. More info here:
http://frankfeigenbaum.com/

Surgery isn't an option, especially aT .8 mm. What could I do?

Not necessarily.

The cysts are incidental findings and are not impinging according to MRI.

Once again, not necessarily. They ALL say that.

Please let me know if there's anything I can do to help.

Kind regards,
Karyn

[DakotaGirl]

Hi Karyn,

Yes, it is a great idea to have someone evaluate them, but you are right it's not even a financial possibility to go to Dallas to see someone....

Are you saying he does it over the phone though?

Thanks,

DG

[Karyn]

Yes. Dr. Feigenbaum will review your case with you over the phone, after receiving your MRI and medical records. It takes MONTHS, but well worth it.
It's better than bouncing from one specialist to another being told "the cysts wouldn't cause your symptoms, but I don't know what are".

[DakotaGirl]

Karyn,

HOw much would the consultation costs? Any ideas?

DG

[Karyn]

Hi DG,

I don't know how much it would cost to see him. He accepts insurance, if your carrier will cover it. The phone consultation is free.

Best,
Karyn

[DakotaGirl]

It's something for me to look into. I have an HMO so they will not let me out of the network.
Karyn I see you had surgery with dr Conway. Was it a success? I also live in mass.

[Karyn]

DG,
I also have an HMO (BC/BS). They originally denied coverage for the surgery, but eventually authorized and covered it through appeal. Dr. F's staff is very helpful with appeals and providing letters of medical necessity.

Yes, I consider my surgery with Dr. Conway a success.

[Karyn]

BTW, DG -
In response to your original post - yes! My symptoms are severely aggravated from lying on my back. To answer your question as to why:

Very simply put, you're adding direct pressure/compression to the sacral nerves, which causes increased pain and dysfunction.