Endo and leg/sciatic pain

[SuzieK]

Does anyone know if it is possible to get endo on your sciatica? I have been experiencing pain in my right leg (top at the back) and in the bottom on my bottom just on one side (right) for over 18 months. I had put it down to lack of movement during the pandemic, but want to explore non-obvious causes, and wondered if endo can bring on leg pain in this way. The pain is different to leg pain I get during my periods.

[Laurak26]

Hello

I’m at the start of my journey but my pain is primarily on my left side - Tummy, hip, back, buttock, leg, right down to my ankle…Also shooting pains in my rectum. I’ve often had “achy legs” over the years too. My understanding is that endo can effect your sciatic nerve, yes.

Laura x

[Dani85C in reply to Laurak26]

I’m Honestly so glad I’ve found this forum! I too am suffering with this I thought I was going insane. So much pain. my hip is agony actually wakes me up, my bum & leg too.

[Gothchic]

Hiya, I feel your pain, have right sided sciatic pain which is caused by nodules on my right us ligament, so although the endo is not directly on my sciatic nerve the pain is very similar as it affects the nerves around the us ligaments. I don’t fully understand it to honest, I know it’s bloody painful thought. Xx

[E-ZEE]

Hi ,yes it is very much possible that endo presist in sciatic nerve, I am suffering with the same but my doc said he did not find endo in my scatic nerve but I am quite sure that this terrible pain is becoz of endo as far as other symptos got worst this sciatic pain got worst as well.Wish you speedy recovery

[Bespp]

Hiya, been having the same problem for a couple of years too until recently it has got a lot worse that was not able to walk for more than 20 min at a time. The only thing that has helped me is getting a pair of orthodics to help me with my pelvic posture and now I am back at walking and exercing again. Horrible pain and very depressing. Hope you get sorted

[Avourneen]

Yes, the endo can grow along the length of the sciatic nerve. I'm not sure many doctors know how to fix it though. There is one specialist in Switzerland called Dr Possover who is a world leader in treating this, it's worth looking at his website to find out more about the condition and how it can be treated. I don't think there is anyone in the UK who is able to do these types of operation, top UK endo specialists refer patients to this guy.

[Jen82]

I am under Mr Khazali who trained under Possover. He had asked for Possover to see me but Possover would only do so if he then treated me. endometriosisconsultant.co....

Khazali sent me to uclh who i was also under their care back in 2008 to 2012. Khazali at the time didn't have the funding to operate for sciatica endometriosis on nhs, so I restarted nerve blocks to help with the right sciatica pain and vulvodynia and endometriosis. And this year i had a trial week of a neuromodulation device, i am now waiting to have a sacral neomodulation device permanently inserted with Prof Baranowski who had originally done my nerve blocks in 2011. uclh.nhs.uk/our-services/fi...

Although since 2017 Mr Tavakkoli has been doing my nerve blocks at uclh thelondonclinic.co.uk/exper...

The nerve blocks help a lot although I am having less relief earlier than a year or 6 months. Usually now by 4 or 5 months need another, but I have been on them for a while.

Hope this helps

[Endo_Jaded]

I’m currently in agony with this and have been for 4 years. Yesterday I visited a private GP and have immediately been referred to a back specialist (orthopaedics) and for an MRI. We believe the Endo is the culprit but we need to rule out other aspects.

I have stage 4 with Deep Infiltrating endometriosis on the bowel 10mm in now, triple size fallopian tube, and enlarged left ovary – with adhesions, fibroids and completely obliterated POD sand totally frozen pelvis. Just for context.

I’m on Gabapetin now for nerve pain, morphine patch and cocodamol too.

Have you spoken too a specialist yet?

[Avourneen in reply to Endo_Jaded]

i'd suggest getting a referel to a specialist gynae. The back specialist won't know what to look for I saw 9 different spine specialists and neurological surgeons and then went to a gyane who was able to recognise the problem. Best back specialist was Dr Jackowski in Bham but even he didn't see it but there was a not of big cysts on ovaries after a bone scan on my back. MRI for spine uses different protocol and won't show endo at all, you will need MRI on abdomen.

[Auntyhay]

I had the same was sent for an urgent MRI which showed I have a bulging disc irritating the nerve I was sent for physio which never helped..I kept getting a flare up every month and could not move without bad pain for days shooting down my right leg and bum ...I started zoladex 3 months ago and funnily enough I've had no pain since it kicked in so I think it's all related to endo..but they never want to believe it ...I took gabapentin for years and didn't do anything..I used heat pad or Ice pack and tens machine and co-codamol as and when needed.. for last 2 months hardly had anything..I'm awaiting a Hysterectomy and have to decide if I want to keep my ovaries or not...endo sucks... hope you get sorted soon x

[Ronsk]

Hi , I've suffered from this pain the last 2.5 years. I did have sciatica prior but only had flare up maybe 3 times a year lasting 1 week to 3 weeks at a time. I've not had a break from it for 2.5 years now. My Dr and consultant said its highly likely due to where my endo is ,that it is on the sciatic nerve. It's horrific, more so at night. I'm unable to lie on my side for periods of time.

[lauraca1]

Hi Suzie,I have Endo and also had the sciatica leg pain on my left side. I had an MRI done because the pain was so awful. It turned out to be a herniated/ruptured disc. I tried PT, injections and nothing worked so just had a Microdiscectemy to alleviate the pain. It’s been a journey but it instantly stopped the leg pain, now just healing the incision area. I’m not sure this is what you’re dealing with but it was unrelated to my Endo. I hope you find some answers and get some relief soon!

[BloomingMarvellous]

It’s a thing ! I’ve always had the “heavy leg” pre period and then sciatic pain at other times. It just got more and more an issue. It doesn’t have to be around the nerve though to cause the sciatic pain. The adhesions on my left side bowel to side muscle wall and the endo in the left lower pelvis were enough to alter blood supply and skew the muscles to cause pelvic tension and misalignment. Of course it just worsened. Once the endo tissue was removed on left and the adhesions cut then have more freedom. It caused weakness right across the pelvic floor which wasn’t resolved with surgery. However have been doing specialist hyperpressive physio with an experienced endo Dr for a few weeks and it’s been transforming. It’s a long road but it can be done. 😃💗

[Roobs33]

Heya, I’ve been experiencing this pain for about 2 years. I recently had a miscarriage after a frozen IVF transfer and the pain has become so awful. It’s all on my right thigh, hip and lower back/buttock. I called the GP the other day and was seen by a physio who told me it’s no sciatica even though my endo consultant told me last April that it’s very common in endo patients! It really does suck a lot I feel like I was fobbed off. I had to request stronger painkillers so was prescribed co codamol. Although I’ve just read that bit good if trying to conceive and I’m just about to start another IVF cycle. Also my pain only started after my first surgery, so I think it must be because of scarring and adhesions in the pelvis. I hope you get some help! I’m going to see my acupuncturist next week to see if that does anything and am going to speak with a GP on the 19th. It’s so frustrating trying to get help as it seems that it’s only endo specialists that can offer the right advice xx wishing you loads of luck that you get some help with it xxx

[Anotherdayinsunshine]

Yes definitely, when I have my removal surgery the hideous pain down my leg went away. Now a few years later it happens a little when I’m about to get my period

[MalachiteAli]

Yes. I get sciatic type pain that travels into my leg. Originally I had it on the right side and that is where an endometrioma was found on my ovary during lap. For the last 6 months or so I've been having it down my left side, often excruciating pain in my left hip and terrible ache down left leg. Not the same as herniated disc pain which I think I had previously and had physio for, though it was never properly diagnosed. That was more like fire/lightning down from back through leg into foot. However, since getting endo diagnosis and pain getting worse and more frequent, I'm reassessing many things in my memory, wondering how much of things I passed off as not important or some other complaint may have actually been endo.

[Currerlinnin]

I think even if no endo actually on sciatic nerve, the general inflamation around that area will likely cause sciatic pain. I have always had bouts of it - especially bad around periods. Hope you get relief soon. I try to move about gently as much as poss - seems to keep it calmer at least. Take care.