Whats causing my painful pins and needles... - Endometriosis UK

Endometriosis UK

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Whats causing my painful pins and needles down my legs and feet?

Starry profile image
6 Replies

I'm 7 weeks post bowel shave, excision and vaginal repair. I've been having coxxyx pain a while, but now I am getting these awful shooting tingling pains in my buttocks, running adown the back of my legs into my feet .

Whatever is causing it and why does it seem to be getting worse?

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Starry profile image
Starry
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6 Replies
Stopendo profile image
Stopendo

I am so sorry to hear someone else with similar symptoms as me. I had my last operation 10 months ago and the rectal/ vaginal burning with spread down my legs to my feet has been intermittently awful now for several months. I think it came from a bout of severe constipation and pressure on nerves from the inside along with scar on my pelvic floor. It could be endo still too returning from hrt. I have been very desperate for answers. I don't think mine is simple pudendal neuralgia but check that at the pudendalhope website. In my case, I have some relief from time, avoiding sitting, avoiding straining, trying diaphragmatic breathing, and lidocaine peri-rectally. I am still desperate though and have decided yesterday to stop my hormone replacement and hope this goes away. I hope you find relief and share your good news.

Starry profile image
Starry in reply to Stopendo

Thank you so much for replying. Xxx

The symptoms stack up. Did you have a bowel shave surgery?

Do you get a hook feeling at the top of your breast plate, a bit like indigestion with it?

Reading the pudendal page I'd had mild warning signs, tingling if I sleep on my back with cushions , coxxyx pain but it started to worsen a couple days ago when I did physio.

Today kicked off majorly and I've been up literally all night. Its coincided with start of period and a severe attack of flatulance which I had to hold in initially to get to bathroom thinking was a BM. (Apologies for the tmi)

missymo profile image
missymo in reply to Stopendo

Is lidocane good for vaginal nerve pain??

Starry profile image
Starry in reply to missymo

No idea, dihydrocodeine didn't work well for me.

I went back to physio she assessed me and said it's likely inflammatory and not compression damage, phew. She also suggested sleeping with a towel folded in four placed between my hips and bum to lift up my coccyx and remove the pressure. That has helped somewhat with sleeping.

My u cushion is helping significantly too and the end of my period means my inflammation is reducing and not pressing on the nerve as much.

Stopendo profile image
Stopendo

Starry, Are you feeling better? I hope so. I am sorry I did not respond quickly. I have been trying different things. Slowly, I have improved in regard to the burning. I think preventing constipation/ any straining by keeping stool liquid with stool softeners, avoiding sitting/ pushing on the coccyx/sacrum, moving around more, and a patch of anti-inflammatory diclofenac on the low back helped a lot. I am also on progesterone in addition to estrogen hormone replacement now. I am far from normal and pray tonight I will be able to sleep instead of being in pain and/or waking with strange pain to pee every 2 hrs.

I really hope you are better. I had a hyst and endo in rectovag septum plus on my diaphram, multiple areas of peritoneum almost 3 yrs ago and last year adhesions taken. It has been ridiculously hard to recover from 3 surgeries in 3 years. I do get a hook feeling under the ribs and one of my PTs noted other women complain of similar feelings. It sounds crazy but there are these little knots, trigger points, which form in my muscles, including those attaching to the ribs. Gentle pressure can help release them and stop some of the pains. It took me a solid year to get these knots out and muscles in the abd/pelvis working again after the hysterectomy.

Starry profile image
Starry

Big hugs, glad you've got a strategy that is helping.

My Nerve pain is improving alot. Unfortunately though I have developed a severe problem with my oesophagus flap and acid reflux and heartburn so am now in near permanent pain with that. Sleeping diagonally aggravates my back, I can hardly eat, am losing weight, barely sleeping and at my wit's end. Taking lansaprazole but it's not really helping.

Sorry to hear you've been so affected by your 3 surgeries. I can really relate to how difficult it is to recover. I've only had two surgeries but am utterly battered mentally and physically and at the end of my rope . Right now i feel like i don't know if I will ever get back to normal health.

Started pro biotics yesterday, Seeing GP again today and nutritionist Wednesday. Just pray I can come up with a plan that works.

Big hugs for you. Here's hoping that you continue to recover and improve. Xxxx

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