Health Organization for Pudendal Education

Hi I'm Lanny C I'm 19 and I've been struggling with what I now know or am in the process of finding out is Pudendal nerve pinching, Pelvic floor dysfunction as well as obturator internus pain and trigger points. I have had this pain for going on 5 years but only diagnosed last year under the care of Dr. Andrew Baranowski (who I found through this site) and his team at UCL.
Last year I had a talk about my history and so on had an exam where I was told what they thought which then lead to a cycle of 2 steroid injections 1 month apart into the obturator internus on both sides which worked really well but I still had what I know the to be as flare-ups which have gotten much more recently I haven't heard any more from them so I'm going to contact them after I've seen my pain team or is that a mistake? (really would like to talk to someone who knows) Also and this is related I have other chronic pain in my pirafomis left and right, knees and back (unrelated neauropathic pain) but I sense the piraformis pain is related which I get 6 monthly botox and steroid injections that do not help. but what I am hoping will help is a Spinal Cord Stimulator to help with the immense pain in both piraformis and pelvic/genitals as well as my other sites.

So if anyone has any thoughts to help me I'd really like to hear from you all.

Thank you.

Because you are still so young, have you considered surgery? You have age on your side for healing. Have you had pudendal nerve blocks? It sounds like you have had some botox but have you had it done to the pelvic floor muscles or only the piriformis? Many of us have secondary problems from PN which is probably what all these other problems you have might be due to. Has a pelvic floor PT evaluated your pelvis/hips to check for alignment issues and leg length discrepancies? The muscle spasms will through you out of alignment which then helps continues to the cycle. Do you have the money to travel and have the Potter MRI in NYC or maybe to Phoenix, AZ for Kalinkin's MRI?

Hi nyt thank you for getting back to me I really appreciate it. I have had a specialist physio look after me checking all the things you mentioned as well as getting the resting tone of my pelvic floor lower but I'm due to finish this August because there is nothing more they can do. Something I should have mentioned that I have cerebral palsy and am used to lots of spasms throughout my body, but I had a big surgery in 2006 to correct my walking which we think is what caused the pain or because of my abnormal walking it could have trapped the nerve. I am going to get back in contact with my team in London to think about a nerve block but I havent read much good things about it. but by looking at your history we have similar issues. I dont have the funds but if it proves necessary I will find a way. How did you develop your pain?

Sorry to be invasive I just dont have anything other then this.

Lanny C

Lanny C,
Although the nerve block may not help with the pain they are used to help diagnose if the pudendal nerve is the problem. It was a factor in determining that I had PNE and was a candidate for surgery. I got full relief from the block but it only lasted a few hours. Sorry this struck you so young but as Nyt said that is something on your side for recovery, etc. Best of luck to you and feel free to ask questions this is an invasive condition so that is just part of the territory.
Janet

My problem started from a hysterectomy and bladder sling.

It sounds like you are doing all the right things to get this figured out. Keep it up!

Hi Nyt and Janet

Thank you for your support and words of wisdom. I'm so sorry to read about your sufferings with PNE and PN like you said Janet it is very invasive but if it means getting fixed or a reduction of the pain its okay with me. from when you first felt the pain how is it now compared to then after having all the surgeries? I just want to have a realistic expectation as to what I could be like. Because the thing is I'm the only person I know with this so I dont know how bad I am or how good I can be after the nerve block or release and so on.

Thank you for all your support.

Lanny C x

We all have different outcomes and timeframes and I am not sure if I am done with recovery. For me the pain has reduced significantly but I have limitations that may still lower as time goes by. I am 2 years 3 months from release sugery and they say 3 years may be a better timeframe for determining your most likely outcome. The easiest before and after is that before surgery I was rapidly going downhill and could only work 4 days 5 hours each with Weds off as an extra break. I now work 5 days although I decided 7 hours was enough and other days are 5 or 6 hours due to treatments. My pain overall is probably 2-3 most days but can be both lower or higher at times before surgery it was constantly a 6 or more. I am off constant medicine and just take tramadol or oxycodone as needed ( note I also have bunion toe pain and oxy is mostly for that). Given the toe pain on both feet I felt my quality of life was too degraded to handle the PNE and inabilty to sit and I felt I would lose my job if I did not have surgery. I should be able to finish my career and retire in 2.5 years and avoid attempting to get disability ( highly unlikely with a condition most medical let alone other people have heard about). PNE specifically seems to require surgery for some chance at lowering the pain decently however this is not guaranteed. From what I have seen here there is hope of getting better and like I said I still have time to see. I am getting PT, Aqua therapy to strengthen my core due to SIJD post surgery, psychology help and trying meditation, and acupuncture which was a recent extra help to stop the constant 3-4 pain. FYI my pain started with levator ani muscle spasms in the pelvic floor and the pain was and is rectal area for the most part. Hang in there and read all you can here to help you determine a way forward and try to focus on that. Things can get better.
Janet

Hi Janet,

Thank you so much for sharing your story with me I am so sorry for everything you have gone through. Since you were so honest with me I'd like to be honest with you and anyone else who reads this blog. My pain isnt constant but I can have up to 10+ flare-ups a day which last seconds to 20 minutes, and they range from clitoral, deep perennial and rectal; rectal is normally with bowel movement and they hit the 10 out of 10 on the pain scale and I hate to sounds like I cant handle pain but these flare-ups are some of the worse pains I have experienced and I had both my femurs broken so...I feel able to say they are a 10 and they happen with just sitting down for too long or standing and like you for my other chronic conditions that I have I need to sit down a lot so it is very difficult to stop one pain from impacting on another. They think what caused this was my severe walking condition from birth until 12 years (which has been corrected) and my CP which I technically still have in terms of muscle tightness and spasms. apart from the steroid injections I've had and botox I've tried acupuncture which did help and I am on (not just for the PN) nortriptyline and pregabalin for the nerve pain but it doesnt stop the flare-ups but I'm sure it helps, the biggest attempt I've made is via physio.

umm...that about it. if you want to know any more about me then I'll happily answer them. But I'd like to know how long did any of you suffer before finding help. I sometimes get mad at myself for not voicing it sooner.

I am not entirely certain of when it started but I will explain. I think some year or more before 2007 ( or it could have been during or closer to the 2007) I had some sitting pain start. This vague because I only remember standing up towards the end of a meeting and afterwards the one co-worker asked if I was okay. He knew I had foot pain and avoided standing so if I decided to stand that was an issue. In summer 2007 & again 2008 I had levitor ani pelvic muscle spasms which I think was a precurser to PNE and went around thinking at first it was hemmorhoids and had colonoscopy before getting the spasm diagnosis and treatments that cleared it after 3 sessions. Then in 2010 I sat on a hard chair had pain and did not get up in time. In pain ever since and had surgery May 2011 after going around to get the PNE diagnosis, which I did not have to dig as much as others I kinda fell into the right people that led my around until I hit those in the know. Do not beat yourself up you may not have found anything earlier on given the lack of info and the stress works against you. Please focus on figuring this out and getting treatment. As background and a contributing factor is constipation problems my whole life and only since 2007 has it lowered but of ourse a battlle with the drugs. The 10's are less but had that just the other night and I do understand. Also I think the sitting constantly to avoid standing was another contrbutor. Who knew there was a dreadful sitting condition? Since I started amitriptylene I got rid of the shootong pain in my toes that was level 10 and so I do agreethe drugs are probably helping just not as small or easy a nerve to calm as my toes?
Janet

Hi Janet,

Sounds like we are very alike as in what caused the pains, I too have had terrible constipation issues which instantly makes the pain worse but because I am Oxycodon and Morphine I do my best to keep regular but its not easy as I'm sure you know. I am going to meet with my pain teams that isnt at UCL but at my local hospital to talk about my next step in regards of contacting UCL to figure out what to do be it nerve block or something else. I need to research here what other options I have but I dont know what to search. All I know is that I want to get better because with this and my other chronic conditions I cant work very easily or go to Uni or have children naturally because sex is a big no no pain wise. So its just frustrating and I do consider myself a very positive happy person but today has been rough, maybe thats why.

Thank you for being here Janet.

Lanny C. x