My horrendous sciatica journey, facing being in a wheelchair due to endo. (Long, sorry)

[Chezombie]

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

[AllthatGlitters]

Hi Cheryl my name is Kate and I read all of your story. The NHS has such long waiting times but your GP can expedite your appointment, you can tell them how debilitating it is to change your sanitary ware every 30 minutes. Have you ever been checked for anaemia?

My story is endometriosis and adenomyosis. Labour like pains and bleeding through my clothes with clots. It’s horrific. The only thing that has helped me is the decepeptyl injection monthly which seems to help a lot, this isn’t a long term plan and it’s whilst I wait for a hysterectomy. Had 2 ablations and 1 laparoscopy. The ablations failed, didn’t stop the heavy bleeding. I would definitely say you need to be more firm with your GP and get a laparoscopy much sooner to find out exactly what is going on. Can you take support with you such as your mum so she can also say how bad this is making you feel and how it’s stopping you from living life.

You say about widespread pain, I also have this due to fibromyalgia and CFS. It can be agony and the fatigue that goes along with it is horrendous. I take nortryptaline which seems to help but doesn’t take all of the pain away. I think a lot of us endometriosis sufferers also have fibromyalgia, not sure if it is linked or not?

Please feel free to PM if you ever need a chat, lots of us ladies on here will understand how you feel, we go through it all daily and it’s hard work.

Sending you a hug.

X

[MMich15]

Hi Cheryl, even as someone with endometriosis I can’t imagine what you’re going through - it effects quality of life but in your case it’s the most extreme where it’s affecting your ability to walk too. I don’t know much about sciatica endometriosis but I know it often can lead to paralysis. In my experience (and limited knowledge) pain killers won’t help mobility. I had terrible hip pain because I had large endo cysts that were pushing against my nerves. No amount of pain killers or physio or exercise helped, it was until I had surgery to remove the cysts and a bowel dissection that the pain alleviated.

I wanted to share this article with you as the case sounds almost identical to yours: google.co.uk/amp/s/inews.co...

When pursuing surgery I would really encourage you to find some who has experience / specialises in your type - I know this will be quite hard with how rare yours is but it’s to avoid delays/complications/further surgeries. I’ve had 3 surgeries, only 1 with an endo specialist - and they often come out of surgery telling you they didn’t want to do much for risk of causing more harm - but that just tells you they don’t have the right experience. The amount of surgeons claiming to know endometriosis when they don’t is astounding. I’d ask whatever doctors / surgeons you see just how many cases they’ve seen of this and how many they’ve treated surgically and how many successfully regained 70-80% mobility etc. Ask as many questions as you need to to feel reassured.

It might be worth contacting the surgeon referenced in the article - he may even expedite your case as it’s so rare and causing such debilitating symptoms, or at least may provide some guidance / reassurance about chances of regaining part / full movement. I wish you the very best of luck and hope you get the treatment you deserve quickly.

[red_swim]

Hi Cheryl. I am so sorry to read your story and know that there are no easy, soothing words that can make this all better. I am one of the women with sciatic endo (we do exist!) and the microscopic levels on my nerve make it impossible to operate safely there, even though I've had numerous surgeries for cervical cancer, endo, adenomyosis and further tumours.

There is hope! Despite my slightly bonkers medical history I lead a full and active life. The thing that has helped me most significantly was getting my hormone levels checked at different points in my cycle, which showed a massive oestrogen dominance. I'm now on progesterone at a tailored dose to balance this out and switch off the endo, particularly on my sciatic nerve. Like you, my sciatic pain was debilitating (I had it in an unusual pattern during my follicular phase for two weeks out of every four) and now it's barely there.

I also saw a pelvic physio for a few months and now do daily internal release work and stretches, as well as eating a modified diet. The book 'Beating Endo' is fantastic for walking you through the whole-body aspect of endo.

Unfortunately painkillers are just treating the top-level symptoms and not addressing the disease, and it sounds like this is what you would really benefit from.

[Chezombie]

Thanks for your lovely replies.

I have just hinted at this to my GP, who of course wants the result of the MRI I had last night, which was AGONY laying on that table I tell you now. I cannot lay on my back for long at all, they very nearly couldn't finish it. They need this to rule out my spine and sacrum. Fine, I will jump through this hoop to prove it, that is not a problem at all, it needs to be done to rule this back problem out once and for all!.

I have so much mobility in my lower body, I can bend and touch my toes, I can even HOP on my effected right leg with NO pain, but heaven forbid if I walk, walking is the most agonizing thing ever right now. I had to use a lot of THC oil and a lot of willpower to even get out my flat for this scan last night. My poor mum had to drive me across town listening to me talk about dungeons and dragons and the latest graphics cards, lmao, that's what that stuff does to me side effect wise, over activates my already overactive imagination, so as far as side effects go, I am cool with that XD

I do not logically see how, if I can raise my leg well over 90 degrees, both legs even, how this could be spinal.

When this MRI comes back, it looks as if we will have to go back to the private consultant and get her to order another one with contrast, which I am NOT looking forward to.

Gotta be done though, had to call on my stoical side last night to get through the last bit of that ordeal, and I did it, I am so proud of myself. Old me would have chickened out at being shoved into a narrow tube and forced to lay in an agonizing position for 15 minutes, that was quite a feat for someone like me, with all the autism extras on top too!.

This will now rule out my back, which I have never suspected, I have NO spinal pain, no muscle pain, and I have lived with someone who had a cauda equina, it is NOT that.

I will keep you all updated, the GP poo pooed the sciatic endo for now, which is fine, he needs imaging to tell him what is going on, he is a man of science who needs pictures before he can do much else, I know this, and it is fine. I will work with them and educate them as I go, because if there is one good thing I want to come from this, if this is sciatic endo, I jolly well hope I get in front of some GP registrars one day, and tell them that when a woman presents in their surgery with sciatica, and seemingly no spinal related problems, can raise her leg and move like I can, then this needs to be considered as a differential diagnosis.

Isolated sciatic endometriosis is what is very rare, but endo effecting the complex pelvic nerve system, which supplies your bowel and bladder, uterus and all the organs in the pelvis, the pudendal nerve is a very important pelvic nerve which supplies the pelvic floor, and this is what I think is being effected in my case as well.