PNE nerve blocks

[Kita]

My daughter was diagnosed by Dr. Antolak in MN with PNE, since then she has had 2 nerve blocks and neither one has done anything. He suggests two more shots but if the first two did nothing what can the next two accomplish.
I have read that if the nerve block shots help you have PNE but maybe she does not have this. She never had any pain sitting. She has IC, VV, PDF.
Can she stop at 2 shots and call it quits or does anyone have experience with these nerve blocks helping after all 4 shots.
Thank you for any replies.

[ulsmws]

Wow, I am anxious to see if anyone else reponds to your question. I am going to be getting a series of 3 Pudendal nerve blocks over the next several weeks. I have never had one before. I have not actually been diagnosed with PNE and ALL my pain is while sitting; I sound like the opposite of your daughter. I have heard that some people get better with these blocks, while some get worse! I hope others with experience will comment.
Michelle

[duchesstiger]

Hi Kita,

I just wanted to let you know that Dr. A does NOT have the best reputation in the PN/PNE community. He has been known to push the PNE diagnosis on people who do not have symptoms typical of PNE. In fact, I know of one case where he diagnosed a young woman with PNE even though she had NO vaginal, perineal OR rectal pain/burning what-so-ever. She had been suffering from undiagnosed lower abdominal pain which is NOT a symptom related to PN/PNE...he actually recommended surgery.

I would question heavily his reasoning for diagnosing your daughter with PNE especially when the nerve blocks have not even touched her pain. Some people have 1 block that does not take effect but usually that is not the case with *all* of the blocks administered. I would suggest that you get a second opinion which may mean you have to travel but I would honestly not recommend that you entirely trust his "opinion" especially if he recommends surgery after all the blocks have failed to take affect. Dr. Hibner in Phoenix and the Houston team are definitely the people to see in the USA for PN/PNE. I'm assuming your daughter has already tried physiotherapy with a physical therapist who specializes in pelvic pain syndromes (NOT physical therapy techniques used for women who suffer incontinence...ie. kegals...which can make pelvic pain worse)? If not, then that should be your first step as well as consider botox which has proven effective in helping to treat PFD specifically.

Anyway, I hope this is somewhat helpful.

[Kita]

Thank you for your replies. I want to reply to the lastest reply regarding Dr. A. My daughter has VV and a lot of vaginal pain but no sitting or rectal pain. She was hoping for some VV relief but as I said previously she has had no improvement with. My daughter has not tried PT but prehaps that is next, if she can find someone that can do it.

Your info is very interesting and I have been questioning Dr. A's diagnose. I don't know what my daughter will do next but thank you for the info.

[Kara29]

The 2nd two shots may have a different combination of medication in them as well as hitting different parts of the Pudendal Nerve. The Pudendal Nerve looks like a willow tree with respect to how it branches out and affects other parts of the nerve. It's worth a shot to try them if she doesn't get worse from them. Sure you can call it quits but that's a chance you'll have to take as those 2 shots may provide valuable information to your daughter's condition and may provide some answers with respect to how they treat her after.

You could always go for a 2nd Opinion if you think she may not have it.

Good Luck to you!

Kara:hi:

[kjlhs82]

I understand your reservations about the blocks with Dr. A. I was originally diagnosed by a dr. in Baltimore and since moving, am now under the care of Dr. A and feeling nervous about the blocks. I had two CT guided nerve blocks in Baltimore (plus one done vaginally) and did wonderfully with the first for about 4-5 weeks...as in no pain although still having "foreign object" sensations. But I'm anxious about Dr. A's shots b/c he doesn't use sedation and for other personality issues that I won't go into here. All this is to say that you're not alone in your reservations, and there may be other options to consider.

The pelvic pain PTs at Dr. A's clinic are good; maybe he can refer your daughter to them. You'll have to insist b/c he doesn't believe PN-ers need pelvic floor PT. I have a few names of other PN-aware pelvic floor PTs that a PT in Woodbury gave me if you're interested.

Another option would be to see the drs at Minnesota Gynecology and Surgery. They're literally right next to MAPS in Edina and work with alot of VV/pelvic pain patients. I'm seeing them as well; they're helping me with finding some alternatives to nerve blocks and different meds to try. I'll hopefully be getting Botox shots there shortly.

[CharlotteY]

Hi Kita,

I just wanted to let you know that Dr. A does NOT have the best reputation in the PN/PNE community. He has been known to push the PNE diagnosis on people who do not have symptoms typical of PNE. In fact, I know of one case where he diagnosed a young woman with PNE even though she had NO vaginal, perineal OR rectal pain/burning what-so-ever. She had been suffering from undiagnosed lower abdominal pain which is NOT a symptom related to PN/PNE...he actually recommended surgery.

I would question heavily his reasoning for diagnosing your daughter with PNE especially when the nerve blocks have not even touched her pain. Some people have 1 block that does not take effect but usually that is not the case with *all* of the blocks administered. I would suggest that you get a second opinion which may mean you have to travel but I would honestly not recommend that you entirely trust his "opinion" especially if he recommends surgery after all the blocks have failed to take affect. Dr. Hibner in Phoenix and the Houston team are definitely the people to see in the USA for PN/PNE. I'm assuming your daughter has already tried physiotherapy with a physical therapist who specializes in pelvic pain syndromes (NOT physical therapy techniques used for women who suffer incontinence...ie. kegals...which can make pelvic pain worse)? If not, then that should be your first step as well as consider botox which has proven effective in helping to treat PFD specifically.

Anyway, I hope this is somewhat helpful.

Actually, my pain is only lower pelvic pain (when sitting). I have no vaginal, perineal or rectal pain. I was also diagnosed with PN (and not by Dr. A.) There is no doubt in my mind that what I have is PN. The doctor (a PN specialist) told me that PN can manifest itself with only lower pelvic pain. He said the pain is probably coming from the vaginal area but I feel it in my lower pelvis.