Please help - any ideas about my problem?

[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

[nyt]

Question, welcome to our forum. You have given a wonderful detailed history. It seems you have narrowed down your diagnosis to some very reasonable possibilities. The vitamin deficiencies should be easy enough to diagnose with labwork but I highly doubt it.

Have you been able to find a pelvic floor PT to work with? Has anyone noticed if your pelvis is out of alignment or if you have a leg length discrepancy? Have you tried doing some self massage on the piriformis muscle several times a day? To me it certainly sounds like you have issues with your piriformis muscle on the right side. In my humble opinion I think we end up with problems with the other side because we compensate for the side that is bothering us or if your pelvis is out of alignment the other side will eventually become painful.

An MRI with Dr. Potter in NYC would be great but might be out of the question for you because of travel and cost. You might try contacting her office, you can find this information if you search through older threads, and see if she would work with a radiologist where you live to do an MRI to look at the pudendal nerve. The way she does her MRI will be different than the MRI's you have had for the pelvis. Most of us had MRI's done by other facilities and they were normal but then went to NYC, had her special one done, and now low and behold there are the answers. Some of us have had her MRI results confirmed by pudendal decompression surgery.

[Question]

Thanks NYT - I am off to New York next week for scans so hopefully will shed some light.

[Gusselsprouts]

Hi Question,
I think that if you post your message in the "Welcome Center" section of the forum you are more likely to get more responses to your questions. Just a friendly suggestion. I think more people will see it.
Lois

[sweetmeringue]

hi I have tarlov cysts diagnosed which wondered if you check that out. It may need a high resolution MRI . As it does not show in my first scan and has taken me one year to find this out. Hope this could be an avenue to check out. Good luck..(.Definately feels like I am sat on wood when I try to sit down.)