Frankenhauser's/Pudendal Block

[CarolinTexas]

Hey everone. I think I have good news to share because I feel great right now!

Although acupuncture and other things helped control my pain (severe nocturia, deep pelvic pain, clitoral pain, low back pain, 50-100% retention, painful bm's, etc) as well as getting rid of it for long periods of time, it didn't heal my IC/PFD. UTI's, sitting and life kept it coming back.

My ob/gyn did a pudendal nerve block yesterday. It was done in her office with me being wide awake. I couldn't feel any of the shots until she hit something called Frankerhauser's plexus (not sure if plexus is the right word). Then I just about jumped off the table in agony. She said that shouldn't have happened.

I was in a bad flare with low deep pelvic pain but high pain everywhere else. It only took about 4-6 hours for the marcaine (only med given) to wear off, but boy did it reproduce the pelvic pain and cause cramping from hell. That's the first time the deep pelvic pain was ever reproduced in that way. I took a whopping dose of narcs and am in NO PAIN (now 20 hours later).

I'm so glad my pain doc didn't knock me out for this procedure as he offered. He would have done it through the Alcock canal. If he had, I would have never known exactly where the pudendal problem was. Also, I sometimes get a lot of benefit from the drugs they knock you out with which makes it hard to tell if the procedure or the knock-out drugs were what helped. This may or may not be my big solution, but I am actually doing yard work today for the first time in months!

Here's hoping someone finally found the root of the problem! She's my fourth ob/gyn since this started. I've also had 2 urologists, 1 neuro-urologist, 1 neurologist, 2 pain docs, 1 allergist, 1 GI doc and a neuro-micro surgery guy, etc. Why on earth didn't someone try this simple block before? I've had 3 surgeries and about 50 procedures in the last five years. This block took all of 30 minutes including rest time. I was also able to drive myself.

Has anyone else had a similar experience?

[carried_cub]

This sounds promising for you :-> Maybe if you repost in the pudendal nerve section, you'll get other answers back? Also, if you get any info on the ol' Frankenhauser's whatchamacallit, I bet if you share somebody else might have an aha moment.

Best of luck to you!

[ulsmws]

Caroline/Texas:
Hi I am curious how you are feeling by now? You have been thru quite an ordeal and my heart goes out to you. I do not have Cystitis or bladder issues. I have horrible pain when I sit...all on left side..labia and down below. Finally found a PT to work with me after going thru many doctors and many meds...nothing helped. So my PT says I have pelvic floor dysfunction...muscle group that stays contracted and will not stay relaxed. She says it feels like a rock to her and she can get it down to a "pebble" but it comes right back as soon as I sit. She is referring me to an OBGYN (4th one this year) and hoping he will do some kind of injections to break this cycle of pain. I am really scared to do it but yet nothing has helped me and I am desparate to get my life back. So I am just curious to hear more of your story and how you are progressing....
Michelle

[crkshnks79]

I used to get these 2 ! , I would get them weekly along with 2 of the same shots just in my left and right sided pelvic regions . I was getting them for severe nerve damage , except they used lidocaine in my shots . Honestly the only shot that really worked for me and lessened my pain long term is the PUDENDAL NERVE BLOCK , which I believe is what you are referring to . And just like you , I felt the needle " pop" in but that didnt hurt so bad ( altho you really think it would ? ) but once they started to move the huge needle around and started the push on the meds HOLY MOLY !!!! I damn near jumped off the table most of the time ! This one time it hurt so bad I had burst out in tears and literally slammed my legs closed on the doctor ! which then caused the needle to quickly shift , which hurt worse and then it caused bleeding ! So I dont suggest that you retract yourself from the shots ! Good luck and I hope they continue to give you relief !!! Take care :angel:

Lauren

[CarolinTexas]

Whoa Lauren, I'll bet you had a heck of a hematoma from slamming your legs together. I definitely will be mentally prepared next time and will not move.

Yes, I did have a Pudendal Nerve Block, but only felt pain in the Frankenhauser's area. (Moderator, feel free to move thread but keep in mind I do not have entrapment). My doc went behind the nerve as much as she could. I'm just thrilled to have a definitive diagnosis for the first time in about 5 years.

There's another PN site that suggests short acting procaine instead of marcaine. Apparently it is the same thing as novacaine but is not as irritating. I wonder if that would help people with failed injections. Also, I'm allergic to steroids and have read research on how detrimental it can be to inject steroids into trigger points. Still wondering why this helped when epidurals and countless related nerve blocks did nothing.

Michelle, my opinion is that all PFD should be treated by working on the pudendal nerve first. I can't believe nobody tried this sooner and am fast losing respect for those docs that just want to get rid of us.

Have you tried trigger point massages or acupuncture? You can self-administer TP's. I've done so with extra strength Vagisil (benzocaine). What about vaginal Valium? You are wise to try a different ob/gyn's. Good luck with the PT's. I've had five PT's and none of them helped I- in fact they hurt and claimed the extra pain was a good sign. Sometimes I wanted to slug them as they ignore the lack of any pain reduction while patting themselves on the back! (Yes, I'm sure some good ones exist somewhere.)

All my docs disagreed with each other on whether it is IC, PFD, or the ultimate, vague cop-out diagnosis, "nerve damage". Probably because I don't bleed and my bladder is still pretty large. My deep pelvic and inner and outer genital pain actually caused my chest muscles to freak out as well as the pelvic area making it hard to even sit up. The secondary conditions are often as bad as the original problem.

I couldn't feel a trigger point lump because of the location. However, I have a history of abdominal TP's and think a TP is the only thing that could have caused that reaction/relief with all the other treatments. The doc did say that area hurt during the last annual pelvic exam. She tried to treat it w/o success which is why I'm not impressed with PT internal therapy.

I'm still feeling great and am making up lost time with my little girls (the guilt!). Last night (at doc suggestion) I put some KY jelly on a Valium pill and inserted vaginally. I slept like a baby and had no pain or twinges whatsoever during a morning bm (sorry to be gross). Also, my urine stream seemed stronger w/o retention. It's unreal to be able to go 4 or more HOURS without running to the bathroom. The insanity causing exterior/interior pain in the clitoral area is still GONE. Will even be trying martial arts again in a few weeks (had to quit due to chest muscle problems). Wish I had tried the Valium this way before.

Michelle, If you'd like to give me a call or email, I'll be happy to share any info you like. PM me for details.

Sorry to go on and on,

Carol

[amandarr]

Hello everyone
I just had my first nerve block out of a series of three two weeks ago. Luckily they put me under for the procedure. When The rest of that night into the following day I couldn't walk because of the fact that my entire left leg was numb! I will have to get my next one sometime in November and then again in December. There were parts of my pelvic area that were numb for an entire week! When the feeling did come back it was very uncomfortable but as right now things are going very well! At my follow up appointment my dr. said that he is seeing slight improvement. He suggested that I see a physical therapist to talk about internal stretching...has anyone ever gone through this?

[leelee88]

Carolin, So glad you are getting some relief...

[CarolinTexas]

Hello everyone
I just had my first nerve block out of a series of three two weeks ago. Luckily they put me under for the procedure. When The rest of that night into the following day I couldn't walk because of the fact that my entire left leg was numb! I will have to get my next one sometime in November and then again in December. There were parts of my pelvic area that were numb for an entire week! When the feeling did come back it was very uncomfortable but as right now things are going very well! At my follow up appointment my dr. said that he is seeing slight improvement. He suggested that I see a physical therapist to talk about internal stretching...has anyone ever gone through this?


Yes, PT's can do it a variety of ways with electrodes and looking for trigger points. I haven't had lasting relief with internal stretching. From the other reactions I read, it can cause more discomfort and flares. Guess it just depends on the PT and the person. That's just my impression.

I heard some IC'ers do it themselves with a tool called a Crystal Wand.

Leelee88, thanks! It's so good to finally get some answers, relief, and finally narrow down the exact cause of my symptoms. Wish I had consulted more with ob/gyns than the urologists and pain docs.

[klassdg]

My Urologist started doing "Nerve Block" on me - 1 year ago or more.
I was the 2nd patient he did it on - and he never informed me of what he was doing (I had just had Bladder instill, and thought he was giving me shot of Gentamicin.
Being only 99/100 lbs - the dose made me almost loose consciousness,
they administered oxygen, tried to get my blood sugar up.

The reason you can't "walk" is that the lidocaine, or steroids have no place to go - and they go into the thigh area - the femoral artery - so you can't walk at all.

Since that awful thing he did -
I decided I wanted to try the Pudendal Nerve Block - but tailored to my weight and reaction to the dose he gives everyone else.

So I do one 3 weeks in a row.
He uses Solu Cortef 3cc, Lidocaine 3cc and Gentamicin on 1st and 3rd one.
2nd one he used Flexeril 3cc and Marcaine 3cc - but the Flexeril irritated me, and Marcaine is not as fast acting as the Lidocaine.

We now do the 2nd Block with 3cc Solu Cortef, and a combo of Lidocaine and Marcaine (3ccs)

Last year, the block lasted 3 months,
Then had huge Flare, did a 2nd Block - lasted 5 months.

But then this past Dec 2010, and end of Jan 2011 - both Nerve blocks lasted
4 weeks only.
He never hit the right spot.
I did a home instill, did pyridium - ended up with a bad case of UTI,
and on
antibiotics for 2 weeks.

I am now on another Block - we increased dose to 4.5 cc's, and he is now hitting my Urethra.
He is getting a new piece of equipment this week, which will guide him to the exact inflamed nerves.

Before he put the long needles down by Pubic bone - but by eyesight.
Hopefully, next week, he will have the machine to guide him visually.

But I am discouraged - if this doesn't last as long as last year's.
So I am going to Johns Hopkins head of Radiology - to ask for Sacral Nerve Block...........
which it sounds like it doesn't work for anyone so that is upsetting.

I have severe Gastroparesis, so I am in incredible pain from that too, and can barely eat anything at all - if I eat even broth, I am in incredible pain.

I am in touch with a Johns Hopkins NeuroRadiologist who does Celiac
Plexus blocks - which are used a lot for pancreatic cancer, but they do them with Steroids for GP patients with extreme Abdominal pain.

I was diagnosed last June/July 2010 with Trigelmenia Neuralgia - I called Dr. Ben Carson at Johns Hopkins who is one of the top surgeons for this.
- you can't swallow, you have no saliva, your teeth feel like you need root canals - it is an inflammation of
a Cranial Nerve. No medicine helps it - eventually you have to have brain surgery if it stays severe.
I was crawled up in a ball last August/September - only got out of bed to go
to Neurologist, Internist, MRI, tests.

With all this pain, it is very hard for me to live or function.
Luckily, the Trigelmenia Neuralgia calmed down somewhat, but I still have it along with Burning Mouth syndrome.
So,along with my Gastroparesis (frozen stomach) I can barely get any food in me. I need a feeding tube but refuse to do it since so many people get septicemia from these tubes.

Never thought I could have something worse than IC or at same level of
pain.

Anyone who wants to write me offline - ddgh88@aol.com
Thanks for this site, and all of you.

Diane Goren in Baltimore Maryland

[Snowden1]

Diane,
Oh my gosh, I am so sorry, my heart breaks for the pain I know you are in. How are you handling this? You have truly been through it and deserve a break. I wish there was more help out there.

[klassdg]

Teresa - thanks for the support.

I just got out of the Hospital - after 5 whole days. My IC symptoms started
March 5, 2011.

By the time it was March 21st - I knew it was something else.
Went to my Internist - I had UTI.
Sent it to Lab for culture.

Put me on Augmentin for ONE week till culture came back.
The Augmentin didn't work for the E coli I had.

So he put me on CEFTIN 250 mg for one week.
That 3rd week (finished all anti-biotics) - in severe pain.

found out from my GYN that I should have been on
CEFTIN 500 mg for a month!

Went back to Internist 4th week - I still had the UTI!
He put me on something that didn't work.

I called my GYN right away.
He started me on Macrobid for 40 days.

I only took 4 doses - by Thursday last week, I was so much worse, fever,
Terrible urethral pain, chills, etc.

both my Internist and GYN sent me to Hospital ASAP.
Put on Gentimicin drip, and morphine, and Saline drip.

I was treated medically so poorly that my GYN came on Saturday to see why this horrible Dr. change me from Gentamicin to another anti-biotic.
I had Ultra sound Kidneys, Blood creatins every day.
He wanted to know why the Dr. changed it.

Found no reason when he looked at my records.

Called my Internist - had him call Dr on call - got back on Gentamicin.
By Monday/Tuesday could not take all the medical mistakes anymore,
and left Hospital.

On ceftin for next 10 days.

But in pain again so afraid I still have the UTI.
Haven't had a UTI for a very long time - 4 or 5 years.

Thanks for your support. :pray:
Regards,
Diane Goren
Baltimore

[Snowden1]

You know you are so right about medical mistakes. I know the improper handwashing caused my first infection at the hospital. Then ignoring my pelivic infection caused IC (I believe). Then my recent visit was "only" going to be a trial for a pain pump. Now I can't walk because I have so much pain after they did a bloodpatch - no one will even call me back or take responsibility or even help my. I have to have an MRI because my legs and back are in such bad pain.

I am really sorry you are hurting so much. I really wish we all didn't have to go through all this pain and suffering. I hope you find help soon.