Lower back/hip/tailbone/appendix pain

[CitizenErased]

Hi everyone. Hope you've all had lovely and hopefully pain-free holidays!

I'm still waiting for my follow-up appointment after an MRI back in August that showed endo on my uterosacral ligaments and in the pouch of douglas. (My app has been cancelled four times so far and I've reached out to PALS but even they haven't been able to help yet.)

Anyway, I'm on the progestogen-only pill. It has basically stopped my periods so it has helped the worst of my pain. But I still get this almost constant lower back pain that radiates down to my tailbone and often into my hips as well (mostly left for some reason). It doesn't seem to matter whether I'm in bed, sat upright on the sofa, sat at my desk or out and about. It's just there almost all the time. It's not the most painful thing, but the fact that it is constant is really tiring me out. I'm so sick of it. I try stretches, hot water bottles, heat pads, painkillers, TENS, etc. All the usual stuff. I was just wondering whether anyone has found something different that helps? Is there anything I haven't tried? Or do I just need to learn to put up with it?

Also, I've been getting this new shooting pain around the area where my appendix is. Again, not mega painful, but enough to distract me. I haven't had a temperature or any sickness or anything with it, and it's been going on and off for the last two or three months, so it's not appendicitis. But I'm worried it could turn into that. Has anyone else had this?

[East_end]

Good morning, I too was put on the progesterone only pill, which helped massively to start with. Also a year later, I have been getting all sorts of lower abdominal pains, ( started off worse on my left side but now worse on the right side) with persistent lower back pain.

I reached out to my endo specialist nurse who still has not gotten back to me about whether what to do since I am now getting symptoms almost matching was it was before being placed on the pill.

I had a recent MRI scan less than 1 month ago, showing several uterine fibroids, which I don’t think I had before starting that pill, but I can’t be sure as I have only ever had 5 ultrasound scans, with the most recent picking up Adenomyosis, and MRI are supposed to be more sensitive.

My official gynaecologist appointment is not till April 25. So I have had to make a decision to stop taking the medication regularly, I am sure this is not the best decision, it would probably be better to go on a different pill, but I am stuck in limbo, with increasing pain, passing dry clots, with no professional assistance.

Really thinking of reaching out to a private specialist in London, but also worried about financial implications.

[CathyEarnshaw]

Hi there, I also get lower backache that causes shooting pains into my hip - I know what you mean about it not being the worst thing but being constantly annoying. The biggest thing I ‘ve found helps me is regular yoga, building it up slowly to start with. It’s improved my posture, reducing pressure across my abdomen and lower back. It also helps to calm things. I hope you find something that works for you. x

[RedCat24]

Hi i get the same pain symptoms. My endo nurse said its because endo is on uterosacral ligaments. Iv not found anything to help pain unfortunately

[thebird1]

Hi,Yes I had all of those symptoms before starting Decapeptyl. My endo is in exactly the same place on MRI. I had all endo removed 2016 and it was wrapped around my appendix. It felt like my left ovary was coming out each time I had a wee!

I'm currently awaiting hysterectomy now as it's come back.....although easier to manage with Mirena coil and Decapeptyl x

[thebird1]

Also agree with Cathy. Regular yoga helps x