Wrong end?: Hello to all the fighters out... - Endometriosis UK

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Wrong end?

meandendo profile image
3 Replies

Hello to all the fighters out there, just a quick question, I hope its not too confusing.

Does or has anyone had severe pain or sensitivity in their tail bone (coccyx)? Where its painful to sit on your bottom when its not numb. And random shooting like pains deep in the rectal area felt quite deep inside? And also past the vaginal end again higher up. As well as lower back pain, abdominal pain, heaviness and incontinence as well as radiating pain in legs?

I have recently (3wks ago) had a sigmoidoscopy and thankfully know that the endo has not penetrated through the colon. But this pain seems to be catching me off guard more frequently now.

Heat and pain relief is not helping much but im trying to behave as best as I can! Any advice or suggestions will be most welcomed :)

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meandendo
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jendx30 profile image
jendx30

Yes! This was the 1st symptom i started with. The pain in my coccyx got that bad i thought i would vomit at times. I'm a nurse and couldn't even sit down when it was my break. I did 13 hour shifts constantly on my feet, which didn't help my pelvic pain at all. I have had excision of the endometriosis and am on Prostap injections and the pain has pracically gone from my coccyx except for the odd twinge. I found before the surgery and injections nothing got rid of the pain.

I really feel for you x

meandendo profile image
meandendo in reply to jendx30

Hi thank you for replying, its good to know that its helped you, ive had zoladex injections but its not made much difference at all, also tried acupuncture which made the pain worse as well as the ceragem bed which helped slightly but my body became immune to it after a while, since then im trying to sail through as patiently as I can in hope of something that works. im currently in the process of finding out whats the exact procedure I need so I can find the right expert for the job, hopefully soon.

katyhill profile image
katyhill in reply to meandendo

Your not alone. I too suffer with pain in my tailbone and legs. Like you I can't sit down and if I do I'm permently sitting on my side. Apparently it is due to the endo being in your pouch of Douglas. I have ordered off amazon a cushion that gives you support if you have pain in your tailbone it helps for when I have to sit on my bottom lol. I'm afraid that's the only advice I can offer as like yourself I've tried everything. I'm currently waiting for a hysterectomy so hoping there is light at the end of the tunnel.

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