Hi there, I will introduce myself, I am Cheryl, I don't often join in many groups of any kind, as I have high functioning Autism on top of all this, which just makes it a bit more 'interesting' to manage!.
I have had sciatic pain on and off in my right leg since around 2017, and it has gradually got worse. I bet you are wondering what has this got to do with endo?.
Well this sciatic pain got worse and worse, and around February this year, it began to completely disable me. As this pain has got gradually worse, I began to notice a pattern, it was happening at the same time as my periods.
As the sciatic pain in my right leg got worse, so has the abdominal pain I get on the right hand side and I have begun experiencing severe back pain and pelvic pain too.
Some of my other symptoms:
Bad low back pain
Pain in my coccyx which is like a burning rising heat deep inside my body that radiates down my thighs, this pain makes me feel really sick, all I can do is go to bed, get stoned and try and sleep through this pain, it's horrid, truly horrid. This pain comes on after doing ANYTHING movement related. I felt 'ok' the other day so I took my dog out, then I paid for it with 24 hours of severe coccyx pain.
Extremely heavy periods, I change a super tampon every 30 minutes most months
Side pain in my right flank
Nausea, mainly in the mornings (nope, not pregnant, I have never tried to conceive, so no idea if I am infertile or not).
Foot and toe pain in BOTH feet
Leg pain in both legs sometimes, but mainly on my right side.
Pain in the lower right side of my pelvis
Sharp, needle-like nerve pains that shoot up and down my back at random intervals, up and down either side of my spine.
Due to NHS delays, my mum paid for me to see a private gynae, and the minute I began describing my symptoms to her, she said endo, most certainly, and I need to be referred back into the NHS for a laparoscopy. It's over a year's wait for an NHS gynae
It's possible I have sciatic endo, the most rare form of the disease, which will make me one of 144 women known to modern medicine with endometriosis of the sciatic nerve. This really is what this is looking like though.
I landed up in A&E on Friday, where my back was ruled OUT, there is nothing mechanical wrong with my back, but I can't walk. I can't walk, I need crutches to walk even a few yards now and I have had a scary incident of temporary paralysis in my left, 'good' leg!.
I also have complex pain management needs as this pain got me addicted to over the counter codeine back in 2012, and that was managed by putting me on buprenorphine, which blocks other opiates from working, and also I do not want to become dependent on these drugs again.
My only form of pain relief I can use is I have a good source for 'phoenix tears' aka full spectrum cannabis oil, the illegal type with the THC in. I have always been a cannabis user, sorry if this is not allowed here but this is medical context only, I am not promoting anyone else to use it, it's just what worked for me.
I find this option still to be safer than me messing around with prescribed drugs. Opiates are a no go for me if I want to come out of this alive. I have had incidents of feeling suicidal and the lot because this thing has stripped me of my mobility.
I also collect 80s/90s 'vintage antique' toys and jewellery, which I then sell on eBay or locally. It's probably going to be called 'Cheryl's little shop of memories' lol, because that's what these items are to a lot of people, fond childhood memories. However, again, I cannot go out to the boot sales or flea markets where I find that kind of thing, some very rare and expensive items, I have made over £300 over the past three months. I need the additional income because I want to go for a bigger rental.
No can do any of this though, and to make it all worse, I have a 38kg mastiff/bully mix who needs two sizable walks a day. My mum is having to walk her at the moment, because I can't walk.
I am going to have to face a wheelchair soon, it is something I will have to accept. This disease is attacking the nerves in my pelvis, like my obturator and pudendal nerves which join onto the sciatic nerve, and my utero-sacral ligament. That is what is causing all my pain.
It doesn't seem I am going to get anything done about this anytime soon, I am going to have to consider something like Amitriptyline in a bit, but that is not going to give me back my mobility is it.
I am sorry this is so long, but I am so depressed I am having 'outbursts' a lot because I am so trapped.
I feel SO trapped. I am 100% reliant on my mum for everything now. Because of my Autism, I struggle to relate to other people, so getting 'help' in is really hard for me.
I don't form interpersonal relationships very well and this causes me extra stress on top of all this. We tried it when I first moved here, and that went terribly wrong because they just don't get the Autism factor.
My biggest question is what, if anything, would restore even SOME of my mobility? Keeping in mind my endo has not been 100% confirmed with a laparoscopy, because the NHS waiting list is over a year.
I cannot spend a year with restricted mobility like this it will finish me off. It already pretty much is finishing me, and my 74 year old mum, well and truly, OFF.
So many other things I NEED to and WANT to do that I cannot do. I can only sit inside my flat playing computer games, watching the world pass me by. I can drive, I just need to pass my test and get a car, haven't been able to because I can't walk, I can't do anything, I am desperate tbf, very, very down and very very desperate.
Would ANY painkiller, even opiates if the worst came to it, and they took me off the buprenorphine and put me on opiates, would they give me back my mobility? Even 50% mobility is better than none.
The cannabis oil does really help with the pain, but it's the type with THC in, and it does tend to make me a bit 'wappy', like I will laugh at non descript things or my imagination will run away with me and I will make up some fantastic fantasy story about castles and dragons and damsels and yeah, you get the picture XD
So I can only really use this at night, and it just helps me go to sleep. It takes all the pain away, and the areas where the pain is 'tingle'. It's really weird, it replaces the pain with a tingly sensation.
So I am not sure what I can use in the daytime that would give me back some mobility? I would welcome any suggestions at this point.
I've got MRI on my lumbar and sacral on Friday but I doubt, without contrast, that will show up soft tissue anomalies. I reckon I have an endo mass somewhere round my sacral bone. I hope it does spot something though, because if they spot a mass, they will have to move pretty fast to rule out cancer, which is when they will find the endo, fingers crossed for me on Friday.
Trying to 'suck it up' and be more tolerant and stoical about things because this will destroy my mental health as well as my physical health if I let it. I also have PMDD on top as well, which was roughly diagnosed the same time as my endo was suspected.
When this is fixed me and my dog are going up into the peaks for a hike!. I just have to keep pushing on, keep accepting, keep adapting, keep surviving, what other choice do I have?
I am with you on all your journeys too, none of you are alone x