Anyone else experienced nerve damage?

[Chillier]

Hi Ladies, just wondering if anyone else has suffered with endometriosis damaging their nerves? I have been struggling with urinary retention and have a long term catheter due to this and now they think the nerves in my back are damaged. Just wondering if anyone had experienced this nerve damage and if it heals? Just want rid of this catheter.

[luthien]

Hi,

I am looking into endo on the sciatic nerve, so yes you can get endo on nerves.

It may be more likely that you have something pressing on your nerves going to your bladder, or simply muscle irritation around those nerves. It's difficult to say as I'm not a doc obvs! It may be an idea to be referred to a bladder specialist - possibly one that deals with nerves and bladder control - not sure what they're called though sorry.

I have a tight back which means all my muscles are inflamed and presses on my spine so sometimes the nerves coming out and going to my legs get compressed; I get shooting leg pains, shoulder pains, back pain, and coccyx pin, so am having physio for it which is helping . Mine is to do with my core (abs) being weak because of endo and surgery so the back compensates but isn't strong - it gets inflammed with exercise and puts pressure on all the nerves round there. I know it's not like yours but just an idea of sometimes the nerves themselves aren't damaged, quite often it's something near the nerve causing irritation or compressing it which; this can be fixed or treated. With actual nerve damage it cannot be fixed as nerves do not grow back.

Definitely look at referral to a specialist dealing with bladder issues, as it could be independent of your endo and you don't want it getting worse. Perhaps look into a physio specialising in surgery recovery / long term conditions and see what they think at your initial assessment.

Hope that helps xx

[Chillier in reply to luthien]

Hi that's really helpful. I see a urologist who deals with my catheter. He doesn't think I need to see anyone else other than him and gynaecologist. Hopefully the nerves are just being irritated like you say and may get better. I had a lap 3 weeks ago and had loads removed but they couldn't get at everything. Will definitely take your advice on the physio I'm also getting back and hip pain since the op and sounds like it may help. I really hope your physio helps and your pain is better soon. Can I ask what pain killers you are on (DM if you like) I'm on gabapentin as well as others which has helped a lot. Thanks for reply.

[luthien in reply to Chillier]

Ah it's only been three weeks!

Yeah it'll bee horrible for a few months just because you've had lots done and recovery takes a while, but the urine side should improve soon, you should see some improvement. Sometimes if the nerves to the bladder have been moved around lots during the lap it can make them a bit numb which is hopefully all yours is.

Physio works amazingly

After my lap I was on codeine, paracetamol and ibuprofen, with omazeprole to settle my stomach (goes with the ibuprofen). I'm about 8 months post lap and now only need ibuprofen pre dosed before and during my period for a week, all other symptoms are much more manageable. So you'll get better! I took about 5 months to really see the effects of my excision.

I'm looking into massage and acupuncture to manage my endo period pains as I don't like medication,.

Keep us updated on how things go xx

[Chillier in reply to luthien]

I'm so inpatient haha. Yeh I guess my body needs to rest, been a hell of a time before the lap. Just want my life back (I guess that's what we all want). Thanks for advice.