Endo question

[Romano1234]

Does anyone with endo have pain around the coccyx and lower back all month? And a feeling like sciatica? Xx

[riddo11]

Hi yes I get pain around my coccyx, it's awful. I was found to have endo on my rectum and "pouch of Douglas" - might be the same for you. I get the pain from my period until ovulation and then it stops x

[Bubble_by in reply to riddo11]

I had the same thing. It was awful, like someone had bent my coccyx.

[Romano1234 in reply to Bubble_by]

Mine is all month long...feel like my lower back is stiff like I’ve been lifting heavy weights or something. If I try to exercise the pain is worse like an ache with sudden stabbing pain and a feeling like my back will give way. Is this the same as you guys then? I go in for laparoscopy next month xx

[Romano1234 in reply to Romano1234]

Also if it is that then other than burning/incision surgery (which it might grow back) what can they do? Induced menopause? Xx

[Bubble_by in reply to Romano1234]

I couldn't bend over with mine as it was agony, so yours could well be the same thing. They can, or refer you for physio if it's nerve damage or something.

Hope your surgery goes well.

[Romano1234 in reply to Bubble_by]

Yes I’m the same. Gets worse through the day. Feels like I’ve banged my coccyx. Surgery will only help for a while though right? Then the pain comes back? Xx

[Bubble_by in reply to Romano1234]

It's awful isn't it? Well everyone is different so some people may not have any pain afterwards. I still do but I'm unsure if I have nerve damage after surgery now. Xx

[Jane781]

Oh my goodness yes I do!! I always thought it wasn’t connected but it must be. It’s like and ache - like you need a deep tissue massage at the central end of your spine?! It’s really irritating. I put a head patch on it, but sadly I live off the heat patches for Endo! Xx

[Romano1234 in reply to Jane781]

Could be Adenomyosis also, see what the lap shows xx

[Cactus80]

Hello. Yes me too all month, every day. Sciatic pain down both legs and aching back like tight glutes. I have rectovaginal endo, rectum stuck to uterus and pod. Currently awaiting surgery but starting Decapeptyl soon before surgery. Hoping for some relief. Sounds like we are in the same boat here ladies xx

[Romano1234 in reply to Cactus80]

Did a laparoscopy diagnose yours? Xx

[Cactus80 in reply to Romano1234]

Yes, I had a laparoscopy April 2019. The MRI prior to that suggested it. Not had any treatment yet as they couldn't do anything during the laparoscopy due to the severity Hope you get all the answers soon x

[Romano1234 in reply to Cactus80]

Will you opt for the pill that puts you into menopause to see if that gets rid or eases the symptoms? As that’s what my consultant has suggested firstly and if it does then she’ll do a hysterectomy xx

[Cactus80 in reply to Romano1234]

Yeah, Decapeptyl injections until my surgery. They have sent me lots of info to read and to have any questions ready for when they phone me next week. I am currently waiting on a bowel shaving but they suggest a hysterectomy which think I will decide to get. Im 40 now and never managed to conceive x

[Romano1234 in reply to Cactus80]

I’m sorry about that...it’s difficult to accept that a hysterectomy is necessary. Let me know how you get on with those injections please. Did they suggest adenomyosis to you also? Or is yours endo only? (Not that that’s better, just wondering that’s all) xx

[Cactus80 in reply to Romano1234]

Endo only but getting a few scans on Monday including Internal ultrasound so might show more. I certainly will let you know how the injections go xx

[millieo12]

Yes!! I have coccyx pain all the time. It’s so bad, it feels like someone is stabbing me every time I sit. I thought I was crazy because doctors tried to convince me that it wasn’t endo related, but it must be xx

[Romano1234 in reply to millieo12]

Yes can’t get comfy feels like you’ve broke your coccyx. I’ve got suspected adenomyosis they think from an ultrasound scan xx

[millieo12 in reply to Romano1234]

Wow, hopefully you get some answers soon x

[Fionac1981]

Yes all the time. It's get worse for me as day goes on. I have stage 4 recto vaginal, had surgery last year , but they found endo on lower spine! Don't want back surgery, but they did give me 6 injections into lower spine.... Which helped so much!!!!! Heat!!!! I sit on a hot water bottle everyday, and do back stretches the hospital gave me.

[Romano1234 in reply to Fionac1981]

Really, So if they find that on me to then there’s not much they can do? Even if you had a full hysterectomy would the symptoms still persist? Xx did you have to be put to sleep for your back injection? How long before you need another injection? Do you know? Xx

[Penguins_81]

Hi yes, I have it in my bowels, pouch of Douglas and well you name it- it’s there. I’m awaiting surgery at the mo. The only thing that works for me is heat and massage. I have an infra red heat pack and that is my magic wand- the only problem is it’s wired so I can’t all about with it. Epsom salt baths also help me. I hope you find something that works for you. Good luck xx

[Gingernut74]

Yes I do, pain there more than anywhere else, always thought I had a weak dodgy lower back since I was a teenager but can now put it down to that.

[Fionac1981]

Are you being seen at a BSGE centre? I was being seen just by general gyne, then when they wouldn't do surgery, I requested to be transferred to a centre. All my notes where sent to them.

They then did there own MRI, and since I've had 2 surgery's, one being bowel, and am waiting for hysterectomy. I could have had this done with last surgery, bit took it up to 9 hrs in theatre, and I felt the bowel work was.most important.

I haven't needed another injection, I feel it's coming soon, but whilst I can manage, don't really want another one. Your only sedated for it, so awake, but don't feel anything. It's basically epidural onto spine. Except I had 6. !!!! Not keen to keep doing that. I see my consultant in November to go from there.

I'm hoping with hysterectomy things will ease. It will still be on spine, but hopefully dormant. When I was on depecatly injections (which for me we're fab) all my sysptom pretty much stopped. I felt like a new person. Hot flushes were awful but prefer that to the pain.

[Romano1234 in reply to Fionac1981]

Crikey! The only symptoms I’ve got was heavy period (which I’m not on progesterone pill so don’t get a period now) and this coccyx pain and a sciatica pain. It’s all month the pain however is better on certain days than others. They saw adenomyosis on scan but not had lap yet, that’s next month so they may see endo all over? I’m worried that I’ll have this pain forever! It’s got worse also in the last year...xx

[Romano1234 in reply to Fionac1981]

I’m having lap done by nhs then I don’t know? She specialises in gyno and c sections etc but I’m unsure what they’ll do..depends maybe what they’ll find.

[Fionac1981 in reply to Romano1234]

Depending on the level it is, I would 100% recommend a BSGE centre. Best thing I did.

Here's a link.

bsge.org.uk/centre/

[Romano1234 in reply to Fionac1981]

Thanks x