Sciatic Endometriosis?

[Cat247]

Hi I’m wondering if there is anybody on here who has had or has Endometriosis on the sciatic nerve or if anyone knows much about it. I know it’s quite rare.

I’ll try and be brief with my history (not easy! Lol). I was diagnosed with frozen pelvis the most severe form of Endometriosis back in 2013. I had a big op in 2014 to remove the Endometriosis by excision. Everything with the pelvis was completely stuck! After I recovered I prob had about 6 months pain free before pain and symptoms started to return. My surgeon had retired so I was sent to a different hospital last year and in the March I had another lap. They just said both ovaries were very stuck to the pelvic sidewall. They were supposed to remove any adhesions but didn’t so nothing changed after that op and my pain continued to get worse.

Back at my hospital they felt it was worth trying to Remove the adhesions due to the amount of pain I suffer. Because my pain is right sided they also decided to remove my right ovary and tube so it wouldn’t get stuck again. I had this op in November just gone.

Since this op I’m no better and feel my pain is still getting worse. The pain is always in the right side at the back of my pelvis it radiates into my hip, round the front of my pelvis and down the leg, even to the foot. It’s such an awful deep pain and so debilitating. Over the years I’ve been told I had sciatica due to where the pain is, but back MRIs prove I haven’t got sciatica.

I recently read a case study online about sciatic Endometriosis and felt like I was reading about myself. I’ve been pushing for a pelvic MRI over the years. I understand if I have nodules of endo on the nerve this could show up. Currently my fight goes on for this scan. My pain consultant feels I don’t need one as my back MRI was ok?! 🤦🏼‍♀️

I also understand if I had Endometriosis on the sciatic nerve it wouldn’t have been seen in the laps I’ve had done as they need to go deeper.

I was recently discussed in an MDT meeting at the hospital (where consultants from all different departments get together to discuss your case). I’ve not yet had the letter with the full outcome and I did send in a document to be read out in the meeting about my history, my pain and how it effects my life etc... I mentioned the possibility of sciatic Endometriosis so will see what their response is to that.

I’m thinking they’re already dis-agreeing with me as I’ve had a letter saying I’m being admitted for the day in April to have a Sacroiliac Joint injection! My pain is so bad I will give this a try but I’m not convinced my pain and problems come from this joint. I guess I have to have it to rule it out though.

Any response or advice would be greatly appreciated.xxx

[Netti451]

Hi. I am wierdly relieved to read this post as its reassuring to find that im not going nuts. The sciatic pain you are describing is exactly what i feel. Its hard to describe other than saying that its a deep pain drawing down from my pelvis into my legs. Even in my feet at times also. I have twitching muscles in my legs often and in my pelvis like a popping sensation- as if someone is popping bubble wrap. This pain is on a cycle guaranteed around my period. Ovulation is also very painful. At least 2 weeks of every month is bad. Often more.

I have been trying for a baby for 3 years and had 1 pregnancy and miscarraige 2 years ago. The consultant at london womens clinic was very good and said it sounds like endometriosis when i showed her pain diary i kept. I was already under gyny consultant on nhs and when this pain started out of the blue after my first appointment with her she made me feel like a naught child at the next appointment for not telling her before! I had to defend myself and reitterate that i hadnt experienced it before. But with gaps in nhs consultations i had been in pain about 5 months at that point. I also get bladder symptoms that mimic severe uti. Nhs listed me as urgent for laperoscopy cystoscopy and hysteroscopy in oct. She urged me not to go private (covered in work) as she knew my case and said it "wouldnt be long" told me i would be seen in jan, feb at latest. Its now april. I have somehow moved from 4b to 5h to 7th on urgent list. Yesterday was told end of may. Gave up and had a private consultation. My expectations of care and timescales obviously too high. He made me feel like an idiot and told me he had never heard of such symptoms with endometriosis. Told me it was msk in his view which i have already had ruled out by a physiotherapist. But he said he would "have a look if i wanted". Great. You just filled me with confidence mate. And a 2 month wait! At the end of my rope. Just had mini meltdown and had to take rest of week off to try to get my shit together. Cant try ivf until i get it resolved or diagnosed. On top of the pain being debilitating and really getting to me i feel like the clock is ticking....already been told by london womens that i have a very low egg reserve for my age and that i havent got time to waste. This was the only opinion yesterdays consultant agreed with. Epic.

Sorry for long reply. Just so relieved to hear of someone with similar symptoms. Would be interested to hear how you get on.

[Chezzerl]

Hi Cat just found your post on here and can relate to exactly your symptoms I’m sorry to say , did you get any answers after they had the meeting about you and did the sacroiliac joint injection help at all ? As this is something I’m considering next , hope your doing ok xx