I just don’t know what to do anymore

[SCords]

Hey everyone,

I just need to rant to people that get it…

I’ve been pretty much bed ridden since I had surgery in March, this was to remove part of my uterus(I had an extra bit that hadn’t developed correctly), a fallopian tube & endometriosis on my right side as well as a womb ablation but I feel worse than before. This was my second surgery, the first was November 2021 but that was just to explore the problem.

During my second surgery they found more Endo on my left side and it has spread to the uterosacral ligament, they even put in my results letter they believe this is the cause of the pain but left it in there (a consent issue apparently) and sent me on my way.

My pain right now is severe sciatica, I can’t walk more than 50metres without breaking down in tears, I can’t stand and cook myself food & sitting in a chair or any surface is unbearable. I spend my life lying on my side in bed because that’s all I can do and I’m just being brushed aside and given tramadol, naproxen and nerve blockers to mask the pain, none of which is really that effective. I started getting the sciatica around December last year and it’s progressively gotten worse. I have had sciatic pain before, I get it most months when I get my period but this has been constant and I feel like it’s getting more aggressive.

I have spent the last 2 months trying to push for someone to see me and discuss that the endometriosis has likely spread to my sciatic nerve, I have seen a chiropractor & physiotherapist both of which have agreed they can not help me because the Endo needs to be removed first and both are sure I don’t have any back/spine problems. I was already under the care of an Endo specialist centre but they have brushed me off straight after surgery. My GP has said there’s no link between sciatica & endometriosis and tried to send me for a MRI to prove (literally said to prove me wrong) i had a slipped disk, I was unable to lie down in the machine so couldn’t have it done and now all hospitals around are saying they can not help me with the MRI because I need medication to either knock me out or sedate me enough to lie down for 20 minutes. Swindon & Bath hospital even confirmed it’s because it’s too long a process to deal with as I’d have to be admitted to a ward and they need an anaesthetist. They suggested that i go 2 hours away to Cardiff or Cheltenham and that’s where I’m at, I’m stuck and no one will help.

I just don’t know what to do anymore, this is ruining my life. I can’t go out, I can’t do anything for myself and I’m terrified I’m going to lose my partner because I’m such an awful angry person right now and he’s had to pretty much become a carer for me and I know he wouldn’t do it if he didn’t want to but it’s just not fair on either of us. I don’t really have any family either, well not any I can rely on.

So has anyone got any advice on how to get just one doctor to listen to me or what I need to say to push it forward.

Or how to deal with how shit this all makes us feel? I’m so down at the moment but the last couple times I have spoken to a GP they just keep telling me I need to go on anti depressants but I’m not depressed, I’m in pain and I don’t know how to fix it.

Thanks xx

[Endolemon]

hi 🌷

Sorry for your pain. Have you tried another GP at your practice? Maybe ask them for a referral to Endo centre again xx

[SCords in reply to Endolemon]

hey 🙃 I have, I have seen/spoken to a few up there, the men say it’s impossible and the women sympathise but only enough to offer more anti depressants! I’m still waiting to hear back about my referral but apparently waiting list are up to 12 months! I don’t have it in me to do another full year of waiting and pain 🤷🏼‍♀️ x

[MMich15]

This sounds awful, I’m so sorry you’re struggling so much. I suspected I had sciatica endo because I couldn’t walk without my right hip aching - turns out my endo cyst was pressing against a nerve in my groin area and once that cyst was removed it alleviated the problem - however, when I flagged it to my specialist gynae she openly admitted even she was not qualified to operate on an endo - nerve situation, it’s so complex they risk doing more damage than good. I suspect that’s why all the doctors are fobbing you off, unlike my gynae, most doctors don’t want to admit they don’t know something / aren’t qualified so they’ll tell you it’s in your head - because there is such a thing as nerve / sciatica endometriosis.

I’m going to try and DM you an article about a gynaecologist who treated one of those rare sciatica endo cases (as we’re not allowed to make recommendations on here publicly) might be worth contacting him directly and just explaining what a dire situation you’re in, he might be able to find a way to see you even if you’re not in the same city. Wish you the best of luck and better health soon x

[Lindle]

Which side is the sciatica?

[SCords in reply to Lindle]

All down my left side, from bum cheek to ankle!

[Hooplove00]

my best advice would to to rely on finding an endometriosis specialist ☹️ I’m so sorry that you’re going through this and you’re not a lone. In fact, I’m going through the same exact thing💔 from absence of family to failed relationships. Things will get better, be strong! Continue to thank your partner for their help. You will get through this 💛🎗️

[poppy75]

Hi there. God I know this level of pain and misery and I’m so sorry you’re having to deal with it.

I don’t know if this is any use as you’ve said the dr was sending you for an mri to check if you have a slipped disc but you think it’s Endo but is there a hospital near you that can offer an upright mri? I know you can get them privately but not sure about nhs. Plus obviously it depends if you’re able to stand still in one position with less agony than lying on that rock hard bed with usual MRIs. I’m just throwing it out there as I’ve had severe Endo for 30 years, I was fortunate at least for many years for it to ‘just’ be during my period, then periods and pain became longer and more severe. I started with sciatica and a locked back. I totally thought it was sciatic Endo due to Endo pain increasing at the same time and the sciatica being worst during periods (and later every single day). My gynaecologist at the time sent me for an abdominal mri plus a lumbar mri. Things progressed really quickly for me as between the mri and getting the results I started experiencing utterly agonising sciatica, lower back pain and then a completely numb leg. As you say, couldn’t sit, couldn’t stand. Horrific. Mri results - 2 herniated discs, narrowing of the spinal canal and degenerative disc disease. I was gobsmacked as I totally thought it was all Endo related. So basically I’m saying it would be good to get a lumbar mri to exclude that kind of stuff as I left it too late thinking it was Endo. I’ve managed to damage my hip badly because it was compensating for my weak lower back for so long. IF you’re able to stand upright for a period of time I’d def look into an upright mri even if it’s just to exclude structural spine issues. I got desperate and looked at private as I had to leave during one nhs laid down mri as it was utter agony. Four people had to get me off that bed as my back went into total locked spasm on top of beyond comprehension sciatic pain. God knows why but when I gave it one more go on another day (loaded up on painkillers) I managed it with just about bearable pain. I’ve had to have 4 done re my back. Have a look and see if any Hospital will offer an upright one if that’s possible for you. It’s utterly horrendous and depressing just lying on your side all the time I know.

All above said, your gp is talking nonsense re no connection between the sciatic nerve and Endo and obviously it could be that (I just don’t want you to do what I was thinking re sciatica - I should have got the lumbar mri earlier and I would have if it hadn’t been damn Endo appearing to cause it). Do you know why the Endo consultant has discharged you after you’ve had so much done so recently? I don’t know if they think they’re magicians or what but it’s no surprise you’d need further care.

Xx