Possible sciatic endo, very strange symptoms.

[Chezombie]

I posted on here a few days ago with an intro, where I explained I may have sciatic endometriosis, which is extremely rare and there are only 144 reported cases known to modern medicine. However, I really think I am about to become woman number 145.

Along with excruciating right sided sciatic pain, I am and have been experiencing some very puzzling symptoms indeed.

I have:

Numbness on the right side of my abdomen, flank and lower back.

Numbness AND excruciating pain extending down my right leg, right into my right foot. Excruciating pain in my ankle when walking more than a few yards.

Severe low back pain, right on the top of my pelvis, sometimes it is so bad I cannot bend my back and stand up straight. I have no obvious sign of a back condition, and the pain moves around to different parts of my spine!. I can still raise my leg to 90 degrees, and have plenty of mobility in my back. I just can't walk due to sciatic pain.

Pain in my vagina, high up on the right side, smear test clear and nothing visible externally on my last pelvic exam.

Pain high up on the right hand side, right where my liver and gallbladder are. This is probably endo stuck to my colon/stomach, which is probably why I keep feeling sick at random intervals through the day, mainly in the mornings.

My right glute has wasted, it's gone flat. If I sit on a hard surface, it feels like I am tipping over to the right and sitting straight on the bones, as there is no muscle there!. My mum had a feel, and we compared it with my left glute, and there is certainly some muscle wasting going on in my effected right leg as well. The leg feels very weak too.

Shooting nerve pains around my rectum area. When I have a number 2 on the way, this pain can be really, really mind-blowingly severe. I have screamed on the loo like a woman giving birth!.

Bladder AND bowel issues, where I go to the loo, feel as if I have finished, then two minutes later I am dashing back to the loo with really bad urgency and 'finishing' my wee or poo!. SOOOO weird.

'Phantom poos' is where I get this great sense of urgency, like I am going to have a bowel accident, and I have to get to the loo fast, but when I get there, I do not need to go.

'Fluttering' bowel, where it feels as if my bowel is fluttering inside.

A TREMOR which has plagued me since 2016, when the sciatic stuff began. The tremor feels like sitting on a vibrating engine all the time, it is not visible on the outside, but it is really bad and it's focussed on my pelvis/groin area and down both my legs. Feels like when the endo is fixed, this tremor will be as well.

I am considering asking for some medication just to calm the tremor down now as I have utterly had enough of it.

All obviously neurological stuff, but which doctor is best to deal with this? Once my back MRI results come back, which should be clear, I obviously need a referral on to a consultant, as I am already on crutches, about to 'progress' to a wheelchair. Which consultant though? Gynae? Neuro? The term 'Neuropelveology' was used for that other lady who had sciatic endo in the UK.

[Bespp]

Hi, just wanted to say that I am sorry you are going through all this without much answers. I have endo stage 4 and a lot of sciatica issues too but has never heard of such a diagnosis like you describe it. Keep us posted on your progress. All the best

[Chezombie in reply to Bespp]

hcahealthcare.co.uk/for-pat...

Mine is very much the same as hers, I have all the symptoms she had, including glute muscle wastage in my right glute.

I really need a CT with contrast next, that is what she had which picked it up.

I am convinced this is what this is, I just need to get the right imaging done to find it. Then we will know for sure, and I won't be asking myself every day when I can walk for half the month, and the other half I need crutches, and I am about to ask to be assessed for a wheelchair and probably aids at home, home help etc because I also have a lovely big dog who needs two walks a day.

I had some of my godsend THC oil yesterday, which on a 'good' day, tends to keep the new pain in my coccyx quiet for a bit, so I can at least get OUT. That resulted in me and my wonderful dog getting 'lost' in the bramble jungle, lol. We got stalked by a jaguar, divebombed by a kamikaze pigeon and we had JUST about had enough nuts to bribe the super dangerous squirrel lol. At least the dog enjoyed the fun lol.

I have been confined to my home for weeks, I am getting very depressed. I have turned to reading Marcus Aurelius' Meditations, which is such a good book for anyone going through any hardship.

I am also battling PMDD at the same time, which has been further complicated by my Autism on top of all this. SO hard to manage it all, it is like a constant juggling act.

I know the THC is likely not that good for me either, but no doctor will prescribe me any pain relief that I don't need to keep taking, that won't build up in my system and cause other problems. I really do not want to go on Amitriptyline or Gabapentin thank you, I don't have pain all the time, so why do I want to take medication for pain, when I don't have any pain?!.

The 'lull week' is precious to me, this is the week which falls between my ovulation cycle and the start of my period, when all the symptoms go back to baseline, the pain and nerve stuff is still very much there, but at a MUCH more manageable level. For example I do not have sciatic pain so bad I cannot put any weight on my right leg, that only happens at period time.

I challenged the GPs to find me a back condition that allows you to keep FULL spinal mobility, yet you have sciatic pain so bad you need crutches and wheelchairs half way through every month!. No such thing as a cyclical spinal disorder, lol.

Last week's MRI scan will prove that once and for all, I do not have a back condition! lol x