Adeno, endo & back pain.

[Kayjade88]

Hi all, in September I had a lap during which 'old' endo and adeno was found. I was given the mirena coil with a follow up appointment for in the new year.

As a result from having the mirena fitted, I havnt really had much bleeding which wasn't a huge issue anyway it was more the pain, well, the pain has really upped its game.

I have been getting a terrible pain in my lower back/left hip area, aswell as the pelvic pain, which radiates into the groin and under my left bum cheek. I have a feeling it may be irritating my sciatic nerve or atleast that's what it feels like, does anyone else experience this? Do you have any advice on tips to help relieve some of the pain, it is so intense like that sharp winded achey feeling. ( it's so bad I don't think I can decide how it feels lol)

Thankyou for reading

Kay xxx

[SallyE1978]

My pain always seem to centralise around my lower back, hip and groin . Almost labour like pain in my abdomen, I had surgery back in July. And even though I've now had the mirena removed the pain remains as strong as ever.

I sympathise as mine seems very sciatic too but I've also heard that you can have some nerve damage depending on the location of your endo. I've had my pain relief upped and use heat which really helps, but I describe it as a sensation that my insides are trying to escape when I get up and walk around!

I hope you feel better soon x

[Geordie-Girl78 in reply to SallyE1978]

During my last period the pain in my lower back was absolutely agonising and I've been getting bad shooting pains more frequently in my lower back it is painful to walk when the pains at it's worst !! I just wondered when you had surgery where was the Endo found ? Is it possible for Endo to spread to cause pain in your back ?? I do have abdominal pain and lots of various other symptoms but just wondered why the back pain seems to have got worse ??

[mylady77]

I have pain in the areas you mentioned and this is due to the adenomyosis plus endo on my left utero sacral ligament.

Heat has been the most effective thing I've found to help. There is a website intended for sufferers of Raynauds (a circulatory disorder my dad suffers from) raynaudsdisease.com/back-wa... which I was browsing yesterday and I've placed an order for one of their backwarmers. I can't review it yet, hasn't arrived, but it sounds and looks promising.

I also invested in an electric blanket for my bed. When I wake up in pain I switch it to the highest setting and it gives some relief.

Hope you find something that works for you!

[soph86]

Sounds so similar to what i had. I had this for about 4years woth 4ops during that time to try and stop the pain. In the end i made the decision to have a hysterectomy. It was a very big decision and not one many people would want ro do. I must say i havent had any pain since which has been a god send as iv pretty much been to hell with pain .

I did however take a medication given m my gynaecologist called Esmya ulipristal acetate. This actually got rid of much of my endo and the pain but cant be used for prolonged periods of time. My be worth asking about this as i was a guinea pig for him lol. Xxx

[Hope264 in reply to soph86]

Thankyou for sharing

[SandraMTL]

I have a very similar story to yours, other than the bleeding (mine was fitted in August for adeno and I've yet to have 1 day w/o bleeding) but the sciatic pain is the worse. I do stretches to try and 'jiggle it out' it does help some. I'm going to sound quite ridiculous but when it really hits and I have the luxury of being home; I go for arnica cream on my back and do the ' I love you massage' on my pelvic area. It's a massage technique my pelvic floor therapist taught me but they have video online it's supposed get things moving and get rid of wind. Then I grab the magic bag, heat it until it's almost too hot, lay down with my tummy on a memory foam pillow and my back with the heating bag. I look and sound like a complete idiot...but it gets me through most evenings. I hope you find some relief, please share if you find anything that helps.

Good luck x

[Hope264]

Hi, Thanks for your post. I live with endo, suspected 'adeyno' & spinal issues. Have you also been to a physio or had any imagry to check your spine?

I use tens machine (small one so I can walk about), electric heat pad. I am trying learning mindfullness (slowly) to have strategies get through momments that are really bad when I am out and about... Like today which was a bad pain day.

Maybe Have a read of Lindle's old post on the deep infiltrating endo on uterosacral ligaments. Just search utero sacral. That one made alot of sense of thing to me from the nerve / back pain / pelvic pain with inflammatory pain cycle even though I live with things that already explain both types seperately.

I was not sure how endo can be called 'old' in your comment? I am sad to hear the mirena not help and the way your post is written sounds like it may have been worse since fitting. I have been offered one, it doesnt sound the best.

Best of luck