Health Organization for Pudendal Education

Hi all

I'm writing this with a heavy heart as I'm sure you all understand. My story is a long one (16 years Vestibulitis - over 30 years IC) so I'll try to keep it as sensible as possible. (my post, that is) My pain is primarily on the left side at about 2 - 3 o'clock and is burning pain and, very rarely, an intense itch on that one spot. I have general pain when I sit in my buttocks and my left piriformis hurts and has been named as a possible culprit, but with no certainty (don't we all know that feeling)

I've tried numerous things over the years including pelvic floor PT with some really great PT's (intervaginal and interanal). They were able to help other aches and pains but not the 'burning' in the vulva area. I took a few years off (gave up really) trying to find answers as I couldn't handle it anymore but after a reduction in pain in 2011 due to, my best guess, Wellbutrin, I decided to jump in again and try again.

I was scheduled for Botox with Dr. Goldstein but when I arrived for the appointment he decided, instead, to re-examine me and then said he thought a nerve-block would be more useful and that Botox probably wouldn't help. Needless to say I was devastated because I had finally gotten someone to agree to a treatment and then he changed his mind (and didn't bother to call me and tell me that he changed his mind until I arrived). Anyhow, so now I'm scheduled for a bi-lateral Nerve Block with Dr. Chapman in NY. I came to this site solely to find out if I'd be on my back or my stomach and then started reading some very disturbing posts about Nerve Blocks making people worse, etc. I also have tailbone pain, so I'm starting to wonder if I should start with a Ganglion impar injection first. So I guess my questions are

Has anyone had a Pudendal Nerve Block without too many bad side-effects (making pain flare)?

Is the Ganglion Impar injection generally something that doesn't cause extra pain or side-effects as compared to a pudendal nerve block?

Does it make sense, as it seems to me, to start with the Ganglion as opposed to the Pudendal Nerve Block?


I had the Potter MRI which showed NO nerve entrapment, varices around the urethra and vagina (and near alcock's canal) mild scarring on the levator ani muscle and an anterior tapering tailbone. I was told once by a Dr. Cole that he thought my tailbone had been broken as a child but I have no memory of that and another Doc looked at the x-rays and disagreed with him. I have a misaligned sacrum joint (which the pt always works on) as well as arthritis in the sacrum joint.

I'm just having serious doubts about the pudendal nerve block. I've always wondered if I have PNE *but the MRI seems to say no* and was looking forward to the diagnostic aspect of finally getting a block but now I'm scared.

I did have a sacrum joint block? years ago which made my bladder feel nice but didn't touch the burning vulva at all. My appointment for the block is next week. I don't want to cancel on them last minute but I'm thinking I may have jumped the gun deciding to go with the P nerve block first. Any thoughts would be much appreciated. This whole thing is beyond words and no one could possibly understand what it's like but other sufferers.

Right now I only take 150 Wellbutrin and a small dose of Neurontin. I wanted to up my dose of Neurontin to see if it would help but I have to admit it makes me feel very out of sorts emotionally. I don't tolerate it well but am not ruling it out as a way to treat myself. In other words, I can suffer through titrating it up just to see if it helps my pain but was waiting to do that until after the nerve block.

Now I'm just confused.

Lily

p.s. forgot to ask if Potter's MRI would show the labrel? tears in the hips I keep hearing people mention. I had a regular MRI on my right hip because I recently herniated 4 discs in my back and the pain was going to the hip, but I never had a left hip mri, unless that's included in Potters?

Thanks

Welcome Lily,
We do understand your fears and know you need to get help as well. I am one of the lucky people that had no bad effects from nerve blocks. The doctor Marvel did unguided vaginally while I was on my back and those provided a bit of relief diagnostically very short term. Then he sent me for CT guided nlocks which provided full relief again diagnostically for a few hours but lead towards me being a candidate for Decompression surgery PNE confirmed nerve entrapped between SS and ST ligaments.
Janet

Hi Janet

Thanks for your reply and the welcome. It's good to hear there are some people who tolerate the blocks well. I'm a little behind the times on terminology. What are SS and ST ligaments? Are you going to get the surgery or have you had it already? You said 'one of the lucky ones' I guess that means most people don't tolerate the blocks well?

I see Botox seemed to help you and also coccyx injections? That's what I'm thinking I might try first just to see where it leads. It may only give partial relief but I may get lucky. I'm really afraid of the nerve blocks. Unfortunately, I think I made up my mind for now, not to have the nerve block, but if the other ideas fail I'll have to come back to it. Good to know not everyone flares afterwards. Did you have an MRI? I had the Potter one and it says no entrapment. Do you think a person could still have entrapment if the Potter MRI said no?

When you had the CT guided block you felt total relief (no pain at all) for a few hours? That's so wonderful. I can hardly imagine it. Today my rectum is firing on all cylinders and my herniated discs (which happened only very recently) are also saying hello cause I carried too many groceries at once.

Thanks again for your welcome. Lily

Sorry for all the questions. I can't imagine what I would have done with this condition without the internet.

Oh I just wanted to add I too have chronic foot pain (sensation) in the big toes. As I'm sitting here right now I feel them tingling. I've had that for over a decade. It hasn't reached the point of 'pain' yet and I hope it won't. It's only discomfort up to now

Sorry to keep adding but I too had bunions at like 14 years old. So odd how we're all so similar. No one else understands it the way we do.

Lily,
I am not sure if more people have flares or not from blocks but was happy I did ok. I cannot remember the ligaments exactly but SS ends with spinous and ST I think is sacrotuberous(you can try to search on this site in the right top search box)? Sorry I am on my nook (have not figureed how to cut paste) and almost bedtime so I can go to work in the morning. Not sure how much the botix worked but the coccyx helped. I did not have an MRI? My MRN was to rule out other things and it did not show entrapment. Unfortunately although the block gave full relief the surgery did not have the same results, but still I am better than I was. The block was amazing at the time. Hope the foot pain stays away for you we have enough! My bunions started giving me problems age 21 but must have started sooner and that surgery at 21 gave full relief for 5 years and then the pain came back. I got some good years then.
Edited to add:
I found SS and ST sacrospinous and sacrotuberous these are the two ligaments on either side of the pudendal nerve that in my case were compressing.
Janet

Hi Janet

That's interesting that the block gave full relief but not the surgery. I'm glad you are better than before though. Any little bit helps that's for sure. You had your surgery in 2011? And, at least, someone was able to say, hey, I can see an entrapment and I'm going to operate and try to make it better. That's gotta be comforting.

Thanks for the ligament info. I think my pt has mentioned those ligaments to me. I'll have to ask her. I know there is a funny feeling in my left leg, like something is going to snap in there... not sure if it's a tendon out of place or what.

I actually had my 'coccyx block' today but I swear I don't and never did feel numb so not sure what went on there. After it was over I told the Doc I don't feel numb and he said where I was touching shouldn't be numb but further down should be, but it really didn't feel numb. If anything I felt slightly irritated (and still do) from the moment I woke up. I thought I was getting a 'ganglion impar' block but I'm not sure what he did (if there is a coccyx block that is different than a ganglion impar). I'll have to see when my PT gets a copy of the report. He put steroid in too, but I have no idea what good any of it will do at this point since I never felt numb and am not sure he used fluoroscope or not. Funny how these places are so busy you can't get more than 2 mins to talk to the Doctors. I know I feel no relief whatsoever from any pain (what I call tailbone pain, the vulvodynia pain or the general sitting pain) but maybe the steroid will help.

My last Sacrum Block I felt like totally numb. It was distracting for about 24 hours. I was like dead on the whole left side of my butt, today I feel nothing.

Thanks for your response. Hope you had a good day at work. L

Hi Lilly,
Not a bad day at work and just grateful I can finish my career (1.5 years to retire). I think the ganglion would be different than cooccyx but I certainly know little of any anatomy. I was very lucky to have found all the right drs and sugery before seeing all the scary info about this condition. I fear I would have just been stuck in a no decision state. It did seem pretty clear and I was truly losing quality of life. I hope something kicks in for you. I had somne pain kick in a day or two after the coccyx then it got better (dr did warn me). Take care and let us know how you do.
Janet

Hi Janet
Yes, I've been in the no decision state many a time. I gave up for about 6 years. I was hopeless, now I'm back on track and it still feels rather hopeless when the place you get your block at spends more time asking you if you're pregnant (3 times) allergic to shellfish (2 times) asking each other what kind of salads they want for lunch (3 times) than actually listening to where you're saying your pain is. It's endlessly frustrating and fascinating (in a bad way). I was also given a trigger point injection today when the doctor never actually looked at the spot. He felt it while we were both facing each other and then when I was in the room I said keep me awake so I can show him the spot, they put me to sleep anyway. There's a bit of insanity in this whole situation but there's not much we, as patients, can do but give them a 2nd chance then move on if unsatisfied... but moving on gets tiring when almost every doc you see brings the word 'useless' to mind.

But, I digress. Just needed to get that off my chest. The staggering inefficiency and attention to only the details that will get them sued rather than the details that might actually help someone. They talk, you talk and there's some kind of lack of communication. I tried really hard today to be heard too... but I still walked out of there not knowing if I even got a guided block or not. LOL I'm laughing now cause it's so insane!!

I'm very glad you got the right doctors right away. As I'm sure you have read, it's a very rare gift indeed!!! If you didn't say it, I'd hardly think it possible so you inspire hope

Lily

Hi Lily,

Can't say for sure what kind of block you had but the ganglion impar block is given near the coccyx area so if that's what your doctor said you were getting, it seems likely that is what you got. I'm sorry it didn't provide any relief for you.

To answer your question about the Potter MRI, my understanding is that it would not necessarily confirm if there is a nerve entrapment. Based on what some of the PNE surgeons are saying, the MRI results aren't correlating perfectly with what they find during surgery as far as an entrapment. I think you would need to check with Dr. Potter on whether they assessed for labral tears and you would also want to know if they checked for tarlov cysts.

I had 3 nerve blocks and had temporary flare-ups afterward with only partial temporary relief for several hours after the blocks. I had some very similar symptoms as yours with worse pain on one side than the other and itching as well as burning. I also had SI joint problem. My thoughts on nerve blocks are that it may be worth it if you aren't sure of your diagnosis and your pain is bad enough that you would consider surgery. Before considering surgery you would definitely want to try nerve blocks first. I have only seen a few patients post of permanent worsening from nerve blocks but I've also only seen a few post of permanent improvement from nerve blocks.

There are people who have had reactions to Botox with long-term worsening of symptoms so it is not completely without risk either. With PN it's like many other illnesses. You have to weigh the risk of treatment against the benefits. Generally if your pain and symptoms are mild you probably want to continue with conservative treatments. If your pain is severely affecting your quality of life and you don't have much to lose than you are much more inclined to take some risks with treatment. But really the risks are fairly low with most of PN treatments including nerve blocks.

Good luck. I hope you can get this sorted out.

Violet

Thanks Violet

That information is very helpful. I can try to get in touch with Dr. Potter's people and ask about the labral tears and the tarlov cysts.

It's funny - for 13 years my pain was a 10 every day, every minute, every second (I don't know how I survived it). I tried to get pudendal blocks back then but it seemed a lot harder. Docs kept saying the chances of it being PNE are so rare, etc., and I had done a lot of PT and spent my time and energy (and money) down that route. I went bankrupt, lost my job... just a lot of things that stood between me and what I wanted and then I just fell apart and gave up. In 2011 my pain suddenly decreased (maybe from Wellbutrin and Valium) and I figured whatever was going on could be fixed and I took it all on again. Now, I'd say my pain is a 4 or 5. My quality of life is still affected cause I can't have sex (which, for me, is huge) but I can't say I'm not enjoying the 4 or 5 pain as opposed to what I've been through. So, it's like had I been offered this block when I was actively seeking it with a screaming 10 pain level I'd have done it w/out a 2nd thought, now, I'm wary.

I feel lucky for the decrease in pain but conflicted as well.

It's really interesting too that docs aren't finding a total correlation between the MRI's and what they find during surgery. I've always wondered if things inside can shift. I know when I wear any kind of heel my pain goes through the roof (so I don't) but that a simple posture change would cause such pain makes me wonder if something can move ever so slightly onto the nerve and then off again and when doing the MRI, maybe it's at a time when the nerve isn't compressed. This is pure speculation but I figured I'd throw the idea out there.

I probably will wind up getting the block, just need to work up to it. Right now I've worked up to about 300 Neurontin a day and my appetite is insane. I can't see the Neurontin working for me long term. I've always had cholesterol issues and heart disease and diabetes run in my family. I lost 20 pounds recently and in 2 weeks gained back 7 on the Neurontin...

It's all too much sometimes. I know you understand. Thanks for the information.

I'm going to have a report of the block faxed to my PT when it's ready and hopefully that will tell us both exactly what he did. I have an odd pain in what feels like my right ovary today, but nothing too crazy.

Lily

oops I forgot to ask. Where do USA patients get surgery?

I just checked my potter MRI and the only mention of hip is 'no synovitis of the hip joints'

I also was curious why it says my coccygeus muscles are symmetrically atrophied. How could those muscles atrophy??

Lily,
It is good to keep a sense of humor to get through the insanity. Ionlu had one really bad doctor and she was in a pain group that had too many patients and wanted me to sit for hour or more right after surgery. I was sent there for disability review but she said I could recover but really had no clue and ended up at least filling out my family medical leave act (surgeon/office could not seem to fill this out) paperwork and provide drugs until I found another doctor. I think I have surpressed that awful experience as everyone else was useful and for the most part listened. I wish you well.
Janet