Please help - all ideas welcome

[Question]

I would welcome any suggestions on identifying my problem from members on the forum. I realise my problem may not be as bad some others in this forum so please excuse me if my enquiry comes across as insensitive.

History:

My back/buttock pain first began when I was driving to the South Coast in August 2010. Initially, I blamed the injury on a particularly strenuous work out with a young personal trainer 48 hours before. While carrying out several exercises, such as rowing and “core” work, I could feel my buttock muscles being stretched. I felt pain in my buttock muscles during the exercises but just put it down to the stretch. Afterwards, I didn’t feel much apart from a slight tweak in back.

It is, though, worth bearing in my mind that in the run up to that work out I had been doing more exercise than I had previously being doing over the last five years. In part, this is because between August 2009 and March 2010 I developed a “mystery” illness that was eventually diagnosed as “reactive hypoglycemea”. Upon discovering that I had this condition, I read that exercise is good way of managing the illness. So, I decided to do more running and working out at the gym. Then in April 2010, I picked up a knee injury that was initially diagnosed as ITB friction sydrome. I started doing physiotherapy, strengthening the muscles around the knee. Because I could no longer run to and back from work, I decided to cycle to and from work, and also started working out with a personal trainer to build up my upper body strength. The personal trainer would push me very hard and cycle seat was always quite uncomfortable. With hindsight, I realise that perhaps this increase in cycling, and the lower and upper body work strengthening contributed to the injury that is now causing my pain.

The Pain, Treatment and Exercise.

Initially, the pain was a deep ache focussed on the lower right side of back and in my right buttock. I would only really get the pain when I sat down. The pain would start gradually and build during the day. I would get instant relief standing up, sometimes to the point where I could not feel any pain. This carried on for a couple of months. The physiotherapist at work thought I may have had a bulging disc and encouraged me to do core muscle strengthening work. I went to see an osteopath, who disagreed with the work physiotherapist. She argued I had some muscular condition and carried out some mild manipulation. After a couple of sessions, I felt the pain sitting down get worse in the sense that I developed a sharp tingly feeling at the top of my right hamstring. The left side would also feel painful, with some tingling at the top of the hamstring, but not as bad as the right. As the pain had got worse, I decided to consult a neurosurgeon. He ordered an MRI. The result was fairly neutral. The radiologist said he could not see any abnormalities while the neurosurgeon noticed “borderline” foraminal narrowing on the right side at L5/S1. He asked me to carry out hydrotherapy and acupuncture and said I should stop all exercise. After a couple of months of hydrotherapy and acupuncture, the pain had not really subsided. I noticed I no longer had the tingling/crawling sensations at the top of my hamstrings on the right and left side and no pain in back on the right side. However, the pain in my buttock while sitting remained constant, building up throughout the day of sitting at my desk. It was particularly bad if I had to drive somewhere for longer than 15 minutes. The neurosurgeon ordered another MRI, this time with me sitting down and standing. Once again the MRI did not show much. Another month passed and the pain remained, mainly focussed on by right buttock and occasionally going round to my hip. I began swimming again now and then again, which if anything after a long day at work would make the pain feel better. The neurosugeon said it might be worthwhile seeing an Osteopath and a pain management specialist who works in the London Spine Clinic. In the New Year, I visited the Osteopath several times, he was also slightly puzzled by pain. In the end, he concluded I may have a Bursitis in my right buttock. I went back to the pain management doctor. He prescribed some Arthrotec, which I took on holiday in Australia. I susbsequently developed some bizarre symptoms, including blurred and double vision. I put this down to a side effect from the Arthrotec. As the Osteopath thought I had a Bursitis, I asked the pain management doctor to carry out a Pelvic MRI. Surprise, surprise it came back fairly neutral. As the pain was restricted to my right buttock but only while sitting, I decided to go skiing with a friend who is a doctor. In terms of “the pain”, it was probably the best I had felt since the injury occurred i.e. I could not feel any pain in my buttock while skiing and even sitting on ski lifts and at restaurants was not too bad. The worst the pain got was travelling to and from the ski resort, which involved a lot of sitting! For a couple of weeks after, it really felt like the pain was subsiding i.e. a lot less intense than before and primarily restricted to my right buttock. As this was the case, I decided to go the driving range to hit a few golf balls. A pleasant surprise was that there was no pain while hitting golf balls – only a tiny bit of stiffness in back. With things looking better, I then decided to consult my orthopaedic surgeon about my knee injury as I was keen to sort it out. He sent me to see a podiatrist and physios at Six Physio. The physios at Six Physio also decided to look at my buttock pain. They did some things that made it worse i.e acupuncture straight into the Piriformis and some things that would make it better, such as neuromuscular massage straight on the Piriformis and glutes (although this could be quite painful while the physio was carrying it out). The physios also encouraged me to strengthen my glutes as they seemed quite weak and this might be having an impact on my running style and knee. With the pain at a tolerable level sitting down, I decided to go cycling. I could feel the pain increase while cycling. However, I was so frustrated by the lack of opportunities to carry out exercise that I continued to cycle for a few days here and there. That, however, was clearly a big mistake because since the then I my pain has taken on a new perspective – namely a tingly/itchy/burning/crawling feeling in my groin/perineum area including my testicles/scrotum. The pain in my buttock has also become more bilateral. Although the achy pain in my bottocks sitting down has subsided by between 10pc and 25pc (varying day-to-day from three weeks ago) I can now sometimes sharp nervy tweaks at the top of my hamstrings down to my just above my knee. Since then I have a caudal epidural at the base of my spine and a pudendal nerve block. Neither has made the problem better bar a bit of numbness immediately after the injections.

To conclude:

1. I have a deep pain in my right buttock and also sharp pain at the top of my right hamstring while sitting down. When I sit on a hard surface sometimes it feels as if I have no muscles in my bottocks and I am sitting on my bone or sometimes it feels as I have hard lump in my right bottock. I get instant relief standing up or lying down.
2. The pain has also recently shifted to my left buttock and top of my left hamstring. I get instant relief standing up or lying down.
3. Three months ago I began to have a tingling/burning/itching sensation in my testicles/scrotum and perineum area after a short period of cycling. I get this sitting down and get instant relief standing up. I also get this lying down on my side or if I cross my legs lying down. I also have some pain in penis with ejaculation and mild discomfort urinating. When I am sitting down and I break wind, I immediately get the tingling/crawling sensation around my scrotum and perineum area.
4. I have extremely tight pelvic muscles and hamstrings. No amount of stretching or manual therapy seems to loosen them up.
5. I have no pain while swimming.
6. I have no pain while hitting golf balls.
7. I had no pain while skiing apart from when I had to sit down.
8. Nobody can “reproduce” my pain unless I sit down. Sometimes I get the tingling feeling when I lie down but no bottock pain.

Potential diagnoses:

1. Piriformis Syndrome / possibly with some pudendal nerve entrapment
2. Pudendal Nerve Entrapment/Alcock Syndrome
3. Nerve impingement from L5/S1 foraminal narrowing
4. Vitamin D deficiency
5. Vitamin B12 deficiency
6. Sacroilliac disfunction/nerve impingement
7. Piriformis/Nerve root/Sacrailliac issue + Prostate problem

[donstore]

Sitting and even worse cycling are highly diagnostic for PN. When you have to sit use an IC Cushion or Airgo cushion (Amazon) and try some medications (Lyrica, Elavil, Valium , opiates if necessary). Cycling with PN is like jogging with a broken ankle. Core work tends to make it worse. Swimming with no frog kicks is the way to go. Unfortunately, you can't exercise your way out of this problem. When the nerve is entrapped it keeps sending out those signals to the muscles that keeps them in spasm. Try to find A PT familiar with PN. Get evaluated with a PN specialist. If you can swing the expense a trip to NYC and a 3T MRI with Dr. Hollis Potter at the Hospital for Special Surgery can help in evaluating your situation. She has special software that allows her to evaluate nerve issues. Good luck.

Don

[calluna]

Hi Question, and welcome to the forum!

Don has said it all in a nutshell. Pain when sitting is very indicative of PN. But whether it turns out to be PN or not - don't cycle - really, don't. And avoid sitting except on an appropriate cushion.

I can recommend the Airgo cushion mentioned, I got mine from Amazon UK, it is expensive but worth every penny. Just looking now, I notice they have a price cut. You want any of the ones that are like two pads connected together.

You'll have problems finding a physiotherapist here in the UK who knows about PN. Be careful if anyone suggests exercise along the line of Kegels, this is contra-indicated with PN as it makes things worse.

I think it is sensible for you get an evaluation of your problem from a PN specialist. Here in the UK there are just two teams specialising in PN - at least, we haven't discovered any others yet - they are led by Dr Andrew Baranowski in London and Dr Gareth Greenslade in Bristol. It is entirely possible to go through the NHS for this - as I am - but both these doctors do take private patients also, I am told.

Your GP can help you with pain meds. You might find this link useful - information from my local pain clinic. And there is a whole lot of useful information on the main website of HOPE here.

I hope you find some improvement soon.

[Violet M]

Neither has made the problem better bar a bit of numbness immediately after the injections.

Hi Question. When you had the pudendal nerve block you say you had a bit of numbness after. Did it take away the pain at all -- even for a few minutes/hours? If so, this can be diagnostic of pudendal neuralgia. We rarely hear of permanent improvement from nerve blocks and occasionally hear of people getting worse from them. So my thoughts on nerve blocks is that they can be helpful for diagnosis but I personally would not go through more than one unless I was on the road to surgery and the surgeon was requiring it.

I remember so well the quest for some kind of exercise that didn't increase pain, and like you I had very tight hamstrings. I tried all the stretches the PT's were recommending and that just pushed me over the edge into serious PN pain because the nerve was entrapped and stretching was damaging the nerve. Swimming without doing the frog kick is considered OK for people with pudendal neuralgia but please stay off the bike!