Sciatica and endometriosis? Also, what is that lump?!

[Tealandgold]

Hello everyone!

This is going to be a long post, so apologies for that! I'm after some information and advice re possible endometriosis and sciatica so I'll post that bit first and put the backstory below that 😊

My first question is: can endometriosis cause sciatica? Mine is pretty constant but gets worse when other symptoms flare up, and radiates from my sacrum all the way down my leg to my ankle. Look away now if you're not in the mood for an overshare: when I rotate my ankle, I can feel something bulging into the lower part of my vagina, towards the back. It's been that way for a few months now. My second question is: what is that and should I be worried?!

I'm 36, told I probably had polycystic ovaries after ultrasound about 15 years ago due to absent periods, but was mostly symptom free, if having slightly irregular periods, until 2018 (aged 32). I started having quite severe symptoms (dizzy spells, fatigue, pelvic pain, "stiffness" in my hips, blood clots). Ultrasound showed multiple growths including one that was twisting my right ovary. I was referred to a rather unpleasant gynaecologist who completely dismissed the pain I was in, told me that all periods were painful, and that she guaranteed that if she scanned again now the cyst would be gone. I got a bit emotional and teary, at which point she suddenly changed tactic and arranged for both an intravaginal and external scan to happen there and then. The scans clearly showed the same results as the first one as she referred me for a laparoscopy to have my ovaries drilled. As I was coming around from the anesthetic, she walked by and told me that they'd also removed some endometriomas from behind my womb. Once I healed from the surgery, I was blissfully symptom free until 2020, when the endo-like symptoms from 2018 started coming back with a vengeance, this time around including horrendous sciatica all down my right side. Periods are now more regular than ever before (avg. cycle 28--38 days), but v. clotty and painful. External ultrasound revealed really swollen ovaries and various other lumps and bumps and I'm now waiting for another laparoscopy (7 months in). Probably also worth mentioning that I've never conceived a child, despite having not used contraception since 2014. Whew! If you've read this far you are a 😇

I'm honestly a bit at my wit's end with the pain and the exhaustion so any advice, kind words or info would be very much appreciated. Much love! X

[Starry1977]

hi apparently it’s possible to get endo on the sciatic nerve but my gynea ( who is endo specialist) said it’s rare. What could be happening is all the other endo s pushing on nerves that are effecting your back. This happened with me. My ovaries had a large cyst and were all twisted up and I had awful pain in hip and down left leg. I also have endo in my Pouch of Douglas which couldn’t be removed in my lap due to the severity (it’s all stuck together) . When I have a period my back pain again is much worse on the left kind of opposite my ovary . Have you tried any type of contraception to help with pain?

[Tealandgold in reply to Starry1977]

Hey! Sounds very similar to my pain. I've not used any form of contraception since 2014. I battled infertility for years, and eventually decided to stop trying, but not to actively prevent pregnancy. That's what I've been doing for about five years now, hence the lack of contraception. I feel like going back onto contraception would be a final farewell to my chances of carrying a child.

[Louna24]

Hi,

I don’t have a lot of answers I am sorry, but I’ve been told it’s most likely the nerves ij your back.

In my case I have severe bowel endometriosis, my ovaries were stuck to my uterus but most of it is close to my bowel, I am in a middle a different appointments to figured it out if it is actually inside my bowel.

I had a laparoscopy in November but he remove nothing he just cut a little bit to help my ovaries which are healthy. Otherwise he said it was too deep and way more than expected around my bowel so he needed a colorectal surgeon if we were to go ahead and remove everything.

He did fit a Mirena IUD.

So far regarding my sciatica specifically the difference is: before the IUD I had no contraception with hormones so my pain was twice a month around ovulation and period. Very shrap pain inside my right butt cheek, burning sensation on my right thigh et tingling sensation inside my right thigh then numbness in my foot when i was walking for too long.

Since Novembre the IUD helped with my cramps but not so much with the sciatica the difference for me is that I only hurt around my period now like a couple of days before it starts and until my periods are finish and it’s like the first sign my periods are coming.

I can only guess that because everything is stuck in there in my situation it must be pulling on some nerves and hormones are not enough to relieve the tensions.

Hope you find some answers and ways to manage your pain

[Tealandgold in reply to Louna24]

Hmmm. It does sound like Mirena coil has helped a lot of people with their symptoms. Thank you for your response and I wish you all the best with your various appointments!

[Starry1977 in reply to Louna24]

your symptoms sound like mine. I have it in POd near recto sigmoid junction, all stuck together. Stage 4. I sometimes feel like there’s a golf ball in my left butt cheek pressing into my bum 🤦‍♀️

[Purple_Badgers in reply to Louna24]

Wow! Perfect description of the sciatica symptoms I got when my bowel endo flared up really badly… butt cheek, inside of thigh, numbness etc. I ended up limping and dragging my right leg round like a dead weight! I still have this, but much milder, after having surgery. Presuming nerves in my pelvis are being irritated/squished by the adhesions and endo in there… xxx

[Starfish123]

Hi, I just wanted to say I had both endo and sciatica and now looking into lupus as the reason for both and many many other issues.

[Louna24 in reply to Starfish123]

how is lupus linked to endo and sciatica? I know nothing about lupus

[Starfish123]

I’ve had multiple problems over the years including endo and sciatica and it now seems they all for me come under lupus, things I thought were normal are apparently not so it’s being looked into. I thoughts I had GERD and hypothyroidism but again all linked to lupus. Currently suffering from what I believe is pancreatitis and have been for 9 months again comes back to lupus, look it up, it’s known as the great mimicker.

[Heloo85]

ey! Like you, I have it down my left side! Nerves exit the spine, go through the pelvis, then down the legs! It doesn’t need to be on the nerve! Inflammation in the pelvis can squash nerves to cause pain to radiate, either up the body got down the legs!

Prior to my first surgery pain went up my ribs! Now it goes down my legs! So it’s not impossible! Lumps could be anything! Misplaced organs, cysts or lumps of Endo!

See how you feel after your next lap! Xx