What does allodynia mean?

[shouldnthavesaid]

I have ongoing severe pelvic pain of unknown cause - has been there since age 12 (so 15 years) but markedly worse since 2013 when had a mirena coil fitted.

When my pelvis is touched (anywhere below my belly button) the muscles tighten up, my legs straighten and I end up gasping as its excruciating. Even if something just brushes it. When doctor taps with two fingers its like the pain echoes off something inside. Have had letters saying I have guarding and rebound tenderness - but its never appendicits as they often worry!

Have had dozens of ultrasounds, examinations and an MRI. They found a 'functional cyst', retroverted uterus, and severe tenderness to left adnexa (GP said basically fallopian tube and ovary). Said pelvic floor is in spasm/dysfunctioning. Also found adhesions between ovary and bowel of unknown cause - GP said its a clear indicator of endo or a burst cyst (or coil perforated womb), gynae said means nothing and everyone has them. Have had no abdo surgery. CRP is always raised.

Have v long term bladder and vulval problems too (I self catheterise for retention and have up to 10 UTIs a year) so difficult to work out what's what sometimes.

I saw a pain specialist anaesthetist a while ago (August last year) who felt my pelvis, did some stuff with a needle (can't remember it v well, was all incredibly sore). Briefly saw her report a few weeks ago - it says I have allodynia across pelvis but especially suprapubic region, and said something about needle prick sensitivity too.

Googling suggests allodynia is something to do with nerves and usually found with fibromyalgia or anything internally inflammatory (ie endo)?

GP didn't mention it (they showed me report as said pain team suggested I start 50mg amitriptyline at night instead of opiates), but I'm just wondering what it means.

Report also mentioned adverse social circumstances and mental health diagnosis (OCD/anxiety and depression) so I'm worried they think it's all in my mind basically - whereas I'm quite sure it isnt, as happens whether I'm happy or not.

Allodynia is a term used to describe a phenomenon in neuropathic pain (pain coming from irritated nerves) where the skin is hypersensitive.

So just very light touch such as the gentlest dab with a finger or brushing it wish clothing is experienced as pain rather than normal sensation.

So your description of the doctor touching you with 2 fingers was classic allodynia. You can often map out the area that has allodynia and where it ends and you return to normal sensation.

Anyway, this is why he/she has recommended amitriptylline which is a nerve based pain killer rather than say, paracetamol or ibuprofen or morphine which work completely differently.

Any assessment of a complex pain like yours should involve an assessment of psychological factors, especially if the pain has been going on a long time. This does not mean at all that the pain is all in your mind, far from it. More that pain is a complex thing and how we experience it is influenced by physical and psychological factors and likely by this stage any approach will need to address both given it has been part of your life for so long.

Thank you

They've decided I can't have amitriptyline now, as to take wirh current ssri could cause long qt? So they've said to take 30/500 cocodamol with dihydrocodeine for breakthrough relief. Previously tried nortriptyline, gabapentin, and duloxetine, and lidocaine patches. Next step is physio and counselling.