sciatic endometriosis

[Beige1994]

Hi! I just wanted to ask whether anybody has suffered or specifically been diagnosed with sciatic endometriosis. I have been getting sciatic like symptoms as soon as my period starts each month for almost a year now. The pain is debilitating and I’ve had to take time off work. I feel like I’m not being listened to by the professionals. I’m on a 6 month waiting list for a laparoscopy however I’ve read online that sciatic endometriosis needs to be looked at by a surgeon who’s trained specifically with surgery involving nerves as it can be damaging. I’ve also read if my endometriosis doesn’t get sorted (if it is sciatic endometriosis) it could cause permanent nerve damage and that scares me. I’m now considering going private and I don’t know what to do. Anyone experiencing the same or have any advice? Thank you!

[Bespp]

Hi there, I am sorry to hear that you are going through this and I know way to well what you are describing. I have been going through the same thing for 1.5 yrs now.

I had an injection done by my back doctor in november which helped a bit with the pain but is is very much still there.

I am going back next week for another review and being followed by both a gyno and back doctor to confirm is indeed this.

I am having it on my right leg and I was off work for 4 months last year and cannot exercise anymore like I used to. Even walking is a challenge most days.

There are a few things I have discovered and researched that is helping me and I want to share with you.

1) sleep with a knee pillow between your legs to let the nerve rest at night. Got one from amazon

2) i take magnesium glyconate type every night before bed to help settle the nerves

3) I have just ordered some R alpha lypocid which is supposed to help too. But only got it today so will report back.

4) sitting down with a lot of back support

I am having to learn to live with it do far and take more breaks and look after my body but my god, it is absolutly awful...no words for it.

I also been reading about GTPS nhslanarkshire.scot.nhs.uk/...

And it seems like it gives me more info as my type of pain match this 100% so have been doing the excersies here and they have helped a bit

I have been to every physio, accupanture, osteopath, chiro you name it.They all have helped but nothing has got me out of the pain completly.

Wishing you all the best of luck on your journey. Keep us posted if you find anything that works.

Biggggg hugggg

[Beige1994 in reply to Bespp]

Hi!

So sorry to hear that you’ve been going through similar pain! It’s so awful! Sounds awful to be off work for 4 months!

Thank you so much for all of this advice I will try some of them and see if it helps.

I hope you manage to get the help you need to get rid of the pain completely.

Thank you again!

[Tiakr]

hiya,

I would push as much as you can. Or the next time your in pain take yourself to A&E or they won’t listen to you. They have to take it seriously. And make sure you get a trained surgeon. I had a laparoscopy this year and my endometriosis wasn’t sciatic but they did something wrong and since my surgery I have had no feeling in my left thigh whatsoever. The feeling is trying to come back and it’s excruciating when the nerves are trying to recconnect. But it’s been a year and I still can’t feel my thigh. Please push for the surgery!

[Beige1994 in reply to Tiakr]

Hi!

I’m so sorry to hear you have had this experience! Sounds so awful! Thank you I will keep pushing and A&E might be a good idea to just been looked at Atleast.

I really hope you get your feeling back soon!

[Sabrinacolada]

Hi there,

I have had sciatic endo signs since last year but by janauary 2023 I had a very severe bout and seemed to also have left side involvement. Cauda equina was ruled out by the orthopedic team in a&E( both left and right side limb numbness, reduced sensation etc initially just right side). It thankfully went within a week again (seems to happen during menstruation however oddly I was in induced menopause which stumped them all). Ortho, nuero and gynae all deemed inconclusive via nhs. Told sciatic endo is very rare. However I suspect higher then studies imply since no specific nueropelvic surgery is undertaken to identify for all cases and mri is not always offered (will only show larger lesions not superficial).

Before induced menopause it seemed to flare up during my period. Any catemenial signs logically imply endo so be sure to keep a symptoms diary to show them a pattern.

I had read the same as you re progression so had a consult with a private nuero pelvic surgeon since this is a very specialist field I still don't know to this day if available under nhs.

He said it is endo but was unlikely within the sciatic nerve itself. He said during surgery he has done endo lesions can be as far a 2cm away from the nerve not in direct contact to cause signs. But there are cases with endo invading the nerve directly. The local inflammation is thought to aggravate the nerves. In my case I already had a private mri with comments on the nerves etc which he reviewed.

My advice would be for peace of mind rule out a spinal/ orthopedic issue ( maybe via gp orthopedic refferal). Also a case discussion with a nuero pelvic surgeon.. we can't say names but I can send links via email. Or do this first and ask what test should be done etc to guide your nhs path or pay private. He was a very kind person with infinite knowledge into this specific area unfortunately it doesn't seem to be part of the nhs MDT ( endo specialist, colorectal and urogenital ---- nuero/ nerve is never mentioned).

Getting ready for work but happy to send links, science papers I had found to you.

♥️ sabrina xx

[Sweetness2000 in reply to Sabrinacolada]

Hi Sabrina,

I read your post and was wondering how you find the induced menopause. Is it terrible? Do you find it helps your symptoms?

I have been offered this but read some very concerning issues others have had and it put me off.

Thanks

[Sabrinacolada in reply to Sweetness2000]

Hi,

I had about 4 injections with hrt/ tibilone. I would say the pelvic pain was reduced so I was able to be a bit more social but it did nothing for the gastrointestinal signs and it wasn't a magic wand I still got some flare ups ( but less frequent and less severe). Minimal hot flushes but I did get quite bad shooting pain in joints and felt really stiff.

I had to stop a few weeks ago as I was having bouts of severe dizziness, tingling and reduced sensation. The specialist, gp, were unsure if related to this so I stopped as a precaution. Not sure if this or another issue since I am still getting these signs ( under investigation by gp). Plus now I've had 3 days of severe abdominal cramping.

I was put on dienogest about 10 days ago. I'd had no luck with standard pop which is why I was offered induced menopause. When I stopped they said dienogest has a better efficacy then standard pop, but works in less women then induced menopause. However side effects are less then induced menopause. It sits somewhere between induced menopause and standard progesterone only pills supposedly.

What medications have you tried already? I'd say induced menopause did help me to some extent but side effects must be weighed against the symptoms you have. I was told can help about 9 of 10 women but feel like I had maybe a partial response. It was offered to help me while I wait a 1-2 year surgical list. Some women it seems to be amazing for and helps get their life back so it is always weighted against how severe your signs are to begin with and unfortunately a bit of trial and error.

❤ Sabrina x

[Sabrinacolada]

journals.sagepub.com/doi/pd...

This journal summarises sciatic endo well.not many papers / studies into it, this is a more recent one x

[Rewe]

Hi there, this sounds absolutely awful and I'm so sorry you're experiencing sciatica. I have endometriomas on both ovaries ... the right side larger, measured at 4.6cm in December. I often wake with tingling in my right foot. I have just had covid and been in bed for most of a week and I developed sciatica in my right leg/hip for a few days which was horrible. Couldn't get comfy or sleep at all. My suspicion is that it was the endometrioma on the right side pressing on the nerve due to being in one position for a while. I normally spend a lot of time stretching.. for endo and I also have a trapped nerve in my neck. And the kind of body that seizes up if I'm not careful. So 1-2 hours stretching every 2 or 3 days just helps keep things ticking over. If you've got endo on the actual nerve I guess this won't help but if you can try doing sone proper stretching for a few days it just might help if the endo is nearby and flaring up a nerve. It's the best thing I do for my endo, that and sauna and trying to eat more protein and other nutrients. Good luck with it and keep advocating for yourself even if you just pay for a private consultation with a surgeon you hand pick, for advice and to be listened to... xx

[JoJo-1972]

Thank you so much for posting this, I'm still under investigation so endo hasn't been confirmed but my history has been extremely painful periods all my life however I'm now on NO contraception for the first time in my adult life and postmenopausal. I had a debilitating flare up of something just after Christmas and was unable to lift my left leg, walk, drive or work the pain was excruciating, no-one has listened. THANK YOU for making me feel like I'm not going mad. I hope you get the help you need. ❤

[Duopuss]

hello, I don’t have quite the same but I have endo on my diaphragm which irritates the nerve connected to my right shoulder and is agony. Just wanted to say that taking amitriptyline for nerve pain each evening has completely saved me, I don’t know if you’ve tried this already or if it’s suitable for you? Good luck