Nerve damage during C-section, life long pain:(

[Frazzledd]

I had an EMCS 2 years ago and have suffered with pain on my left side (stabbing, electric shock type through my stomach) ever since, sometimes severe and can come out of the blue. I have 2 & 3 year old Dds, am constantly on the go, I can't rest (as suggested )....

I managed to see a specialist on Wednesday (after a long wait, covid cancelled last year) and been told that as they extended my cut during surgery and they've cut through a clump of nerves, apparently there is no fix. I got really upset at hearing that this was now about 'quality of life'. Not something I was expecting to hear at 41....

Back story, I had a grade 4 placenta previa with dd2, In hospital for 5 weeks trying to get us to a planned csection at 37. At 36 weeks I started to bleed heavily. As there needed to be so many specialists present during surgery I had to wait until the morning for EMCS and was monitored through the night. I told them I had felt her change position (caused the pressure bleed which was coming from me?) and asked for a scan numerous times, but as I was scanned the day before (and the nurse felt my stomach) they said she was still head down, couldn't have moved, so didn't scan me.

She was breach(!!), so 'suprise' emergency extension which they cut through these nerves. We were in surgery for 2 hours, there were complications with me and a frightening stay in NICU for my DD ( I have more issues there but its long to explain).

I had to have emergency surgery for some bleeding complications at the end of last year, they found adhesions which they removed, plus pelvic fluid & other things (again, another long story) but these were from c-section. I'm now on a waiting list for an ablation to control persistent bleeding.

I don't really know what I'm expecting or hoping to hear from posting this, but I haven't talked alot about this. The consultant I saw this week was so lovely and just asked me to talk about what happened and I couldn't stop crying. Tbh my eyes are pouring writing this. I kept apologising, he told me to stop beating myself up, I could have died and he was so understanding-

I think I'm reaching out on here now, I seem to have opened some sort of flood gate and feel like my throat is tightening writing all this.

Thank you for reading (if you've made it this far!!) I'd really appreciate just any advice.

You poor thing, my heart goes out to you

The specialist is right, it's good to talk about what happened, it was a huge thing you went through and still are. Have you been offered medication to help stop your nerves firing? There's a support thread on here somewhere for mummys who have been left with severe damage and injuries. I followed quietly for a while after I had my dd and the support was lovely. I'll try and find the thread for you.

I had an emergency c-section nearly 2 years ago that went wrong. I had a bad reaction to the epidural, felt like my blood was on fire and dd got stuck. They tugged and pulled on her for over an hour before having to phone for help. After finally getting her out then they couldnt stop the bleeding. The whole thing took over 3 hours and I spent time in high dependency after with sepsis. The pain still haunts me, I took a long time to heal. Me and DP still talk about it and look at the photos before and after the surgery. He says it helps him to talk about it too.

@Ispywithmycynicaleye thank you, I'm sorry to hear about your experience too.

He's given me Amitriptyline (for neuropathic pain apparently it works?) & codeine- I'm a little skeptical of the Amitriptyline- 3 tablets a day forever?

I've got another appointment in 3 months for a better scan of the nerve area, he also said after a painful internal that I'm also suffering from 'Deep pain' but said he wants to talk to me about that again and thus is going to be an ongoing process.

I think I'm just feeling deflated that there wasn't a 'fix it' option- I've felt this pain for so long and thought they'd offer some sort of op, just can't seem to get my head around feeling like this or taking these tablets forever.

('This' not 'thus' - that made me sound like my nan )

Also Utovlan & Tranexemic (?) Acid to control the bleeding until I have the ablation op.

I've had 2 C sections. I also have nerve damage and scar tissue wrapped around my lower abdomen that likes to make its presence felt, daily. It's gotten better over time (23 years) but I still have days where I take painkillers. A mirena coil has been a lifesaver because it stops the lining of your uterus building up that seemed to be a big cause of my pain.

I have to stay off the threads on here where people recommend sections over natural birth. I had no choice in mine, and am so very grateful for 2 healthy DC that were born alive following a stillbirth, and I understand why the Drs acted with caution but jesus wept, it came at a price. I'm so sorry you're struggling, it really grinds you down but keeping pushing for help

@missbridgerton he did offer the mirena coil as an option aswell as the ablation (got the leaflet in my bag), I might have a good read of that now, thank you!

I'm the same thinking as you re c-sections, I didn't have a choice either (I'm so sorry for your loss ), why would anyone would choose this!??

Thank you @Frazzledd.

I found the Mirena an enormous help, and it was really the only option I was given as they wouldn't consider a hysterectomy in my late 20s. It takes around 4 to 6 months to get the full effect from it, and they're not that bad to have fitted.

It's not everyones cup of tea but I found that acupuncture really helped me too. I found one that specialised in post operative surgical pain and they were so calming. It's all too easy to feel tense all the time when you're in pain.

Do you take painkillers still? Does it still flaw you or has it got better over time?

When I asked this he said it wouldn't but could be managed through medications- I've read a little online now about neuropathic pain/ nerve damage (I am looking at alternative meds, it's good to hear acupuncture helped you!) There's some suggestions about your mind readjusting to the pain?

I'm really reluctant to start the amitriptyline because of the side effects. I know these sort of tablets suit people for many reasons but I just don't think they're right for me.

I find if I feel a bit run down, tired or unwell then I really notice it and will reach for the Naproxen (like Ibuprofen but stronger) which I take for a week or so until it's worn off again. And getting a cough/cold can be misery so I'm very careful to try and avoid them.

But most of the time it's fine, and I think that was just a gradual process over time. I'm pretty sure that your brain just learns to ignore the signals, if that makes sense. I don't like taking medication unless I have to, as it usually comes with unwanted side effects.

If you've never taken amitriptyline before I recommend your 1st time when you dont have to worry about looking after your DC (if you can do that). I get the nerve pain you describe and 1 tablet before bed knocked me out until 4pm the next day, I was like a zombie and couldnt get off the couch!

It might work great with you though, like all medicines it'll work better with some than others. I was prescribed nortriptyline, they worked much better for me and I never felt drowsy on them. I'm now currently taking pregabalin for nerve pain in my arms and hands which are also working quite well.

I'm really sorry, I wasn't able to find that support thread, it was a while ago but I was hoping it was still around.

@Ispywithmycynicaleye thank you! I'm really reluctant to start taking the amitriptyline, for the reasons you said and all the other side effects. There's never a time when I'm not with my 2 dds (dd1s at nursery 3 afternoons a week, but that's it).

I'm always on the go. The consultant asked me about 'triggers' that make it worse and I explained my days/nights- they're 2 and 3, and very active!

I have been taking regular co-codamol (low dose) for quite a while and I can control the pain to some extent, when that stab pain comes it does floor me, the codeine they've prescribed seems to work so much better in controlling that, I'm starting to notice a 'tingling/electric shock' sort of feeling that shoots through my stomach just before that happens so have been taking as soon as I feel it, although sometimes no warning.

I'm pretty sure I'm not going to start the amitriptyline, not sure what to do about that though as my next appointment is in 3 months, If I turn up and say I haven't taken what he prescribed???

I was thinking if it was possible to phone the hospital and ask to speak to him next week, I know they're so busy so don't know if that's possible??

I don't want to speak to my GP about it, in all honesty they've not been the best, this is the first time I've spoken to a doctor who knew exactly what the problem was (and was interested in listening to me!)

Thank you for all this advice, I can't tell you how much its helping me get my head around things and finding a positive way forward, I'm so grateful

Have you considered asking to be referred to a pain clinic? Since you now know it's going to be long term chronic pain, they specialise is pain medication that will suite you and your circumstances. I've been twice and found them to be brilliant. We talked at length about the different types of pain, where, my lifestyle etc. Sometimrs they can also prescribe pain relief that's not available through the gp. It was them who switched the amitriptyline to nortriptyline which I found never had any side effects (for me). I'm now on pregabalin and tramadol.

I get those shock like nerve pains in my feet and my knee cap area, although that one is usually after steroid injections! It's a case of grab hold of something and bite down hard until it's over 🙈 I cant imagine how awful it feels getting that pain in your stomach!!

I'm just wondering what I say I suffer from now? If asked about health conditions (I had to have a think when filling out the census!)

Nerve damage, chronic pain? Is there a name to put to it?

It's a weird feeling- realistically I don't physically feel any different to this time last week, but being told this is not something that can be fixed and talking about 'quality of life' has made me feel different- not as in depressed but more sort of shock? If that makes any sense?

I thought it was the adhesions they removed last year that was causing it, so possibly more surgery, but something they could fix- not medications and management - does how I'm feeling make sense?