Complex hip/pelvis injury (structural damage, tendons, PN...): seeking advice

[CR31]

I’m an otherwise healthy 29 year old male. Nearly 2 years ago, I suffered a traumatic injury whilst playing football, whereby I heavily impacted another player while shooting the ball. Over the next months, the injury turned into a total nightmare which has made my life miserable. Initially it was diagnosed as bursitis (GTPS) and tendinopathy in several gluteal tendons. I began PT with a trusted clinician. Despite progress, the pain kept transferring to other places and I basically ended up with some form of tendinopathy in pretty much all of my tendons in that region, incl. pain in lower back and around my pelvic area. This was made worse by sitting for long hours (writing PhD thesis). The general consequence of this injury has been near-constant discomfort, stiffness, pain when mobilising my hip, an inability to sit without my trusted cushion, and an inability to do sport (running, cycling…etc). It's significantly impacted all aspects of my life, which used to be very active...

Eventually, we agreed there may be an underlying issue and I began getting scans, tests, and seeing various experts. This led to me finding out that the initial injury caused one of my distal hip tendons to tear badly, and which then ossified. As well as that, I discovered I had pretty severe hip dysplasia. I was explained that together, these explain most of my hip pain. I’m currently booked in for major hip surgery next month (PAO surgery + removal of ossified fragment causing impingement). I’m certain the surgery is something I need to go through to get my hip in order (+ to avoid future damage, replacements and arthritis) because I have tried EVERYTHING else, but my greatest concern is that it doesn’t result in improvement of the pain near my ischial tuberosity, which is kinda separate from the rest of the pain.

This ischial tuberosity pain has been with me for about a year, and it is by far the most inconvenient and debilitating pain of them all. It has been at it’s worst for the past three months: I have been unable to lift even light weights, especially bending down, and have re-injured it countless times doing the most innocent activities or movements (i.e. picking up shopping, carrying a 15kg bag down 5 stairs - FYI I am 95 kgs and 6ft4). My physios and osteopaths have given me contradicting diagnoses, and the surgeon’s opinion on whether my structural hip issues are responsible for the pain is a very unsatisfying “maybe?”. In my mind, it is probably one of two things: proximal hamstring tendinopathy (PHT), or Pudendal Neuralgia (PN). I have symptoms which lean both ways.

Arguments leaning towards PHT diagnosis (put forward by physio):

1. Pain lifting things, bending down forward.

2. After re injury, the pain profile reminds me of tendon pain i.e. builds especially 24 hrs after the effort

3. Physical swelling in the entire area

Arguments leaning towards PN diagnosis (put forward by osteopath):

1. After re-injury, I usually go through 2 weeks where any contact with the perineal area is painful (eg even wearing underwear is too much)

2. I have had some bladder issues which often (but not always) align with re injury: feeling like I need to pass urine all the time. I have had STI tests, ultrasound and cystoscopy ruling out any bladder damage or infection, so the pain is so far unexplained.

3. Often when it’s at its worst, swimming breast stroke has provided some of the best pain relief.

4. MRIs have shown my hamstrings to be fine, confusing the hell out of me.

Is it possible I have both? eg maybe I keep re-injuring my tendon, and the near-chronic swelling causes pressure on my nerve, resulting in an all-star team-up?!

I have so far been focusing on PHT rehab, progressing very gently with simple exercises, but unfortunately I can’t manage to last more than 4 weeks without re-injury, which returns me back to square one via 2 weeks of constant pain. In April/May, I also spent two months trying my osteopath’s management plan (focusing on remobilisation and stretching), but this didn’t result in any improvements. I don’t know what else to do, and the experts I’ve seen have never given me any successful advice; they rarely seem keen to focus on my pain in this area because my overall hip injury is/was so complex. I have resorted to seek management tips online, but they seem to contradict each other for PHT vs PN: PHT tips include strengthening exercises with e.g bridging or kegel exercises whilst avoiding stretching. Meanwhile, PN tips focus on stretching and relaxing the muscles whilst avoiding kegel exercises!

Therefore, I am completely lost, and am desperate to find some answers so that I can manage my pain, especially with this surgery coming up.

Looking for any advice from people who have suffered from structural hip injuries, PHT, PN, or have struggled with overlapping symptoms such as mine. How have you gotten out of the cycle?

[Konagirl60]

Hello. Your situation is complex because you have various issues.

I had PNE and kegel exercises made me worsen. Don’t irritate your nerve doing them.

Have you been seen by a Pain Management specialist yet? You do have symptoms of pudendal neuralgia. You might need Amytriptyline.

Where do you live. I might be able to give you names of doctors who diagnose and treat pudendal issues.

[CR31 in reply to Konagirl60]

Hi, thank you so much for your reply. Yeah I've stopped doing kegel exercises, it's semi-stabilised since but it never feels like it's gone completely, I'm always one movement away from pain! I've not seen a pain specialist yet because I'm really hoping this surgery solves all my problems, but dread the idea that it won't make this pain go away. Currently I live near Basel, on the French/Swiss border. I looked for specialists in the area but struggled to find any that I thought might do the trick.

[Konagirl60 in reply to CR31]

I know doctors in Europe. What’s your email? I’ll send you the data. Thank you,

[Konagirl60 in reply to Konagirl60]

I sent you the list of European pudendal nerve experts. Please, let me know you received it. Thank you.

[Jobie18]

Hi

I have PN (4 years). I wish I could offer you some useful advise but this has been a challenging journey and like you I feel I have tried just about everything with little improvement.

If you live in the UK and get a pain management team through the doctor they may offer you a PRF procedure. You may have tried that already I'm not sure but it made mine worse although may work for some.

Tried pregabalin which worked a treat for about 2 months then I had to keep upping the dose until It started to effect my lungs and then it stopped helping nerve pain altogether so I've started to come off that slowly.

I have PN and Peripheral Nerve Disease and the only thing I have found to help is following a super strict ketogenic diet. This settles the pain down all lot. Definately look into that if you haven't already, it will help you maintain muscle mass too if you are struggling to exercise.

If I had the money I would definately try some biological injections, ie Plasma Rich Injections or Bone Marrow Injections.

Wishing you all the best for your operation. Keep trying new things and don't give up x

Jodie