Lower back and coccyx pain

[Lily1986]

Hello.

I suffer with stage 4 endometriosis and whenever I’m bent down or mopping the floor or hoovering I’m getting this bad pain that feels like it is about to go into a spasm in my lower back and around my coccyx.

Does anyone else get this?

[plotments]

I have constant pain in this area which gets worse when I'm active

Recent lap revealed bowel endo so I think its got something to do with that

Have you mentioned your symptoms to gynae?

[Lily1986 in reply to plotments]

I’ve had extensive bowel endometriosis which keeps returning so I’m guessing it is that too.

So annoyed with myself for not putting the two together and mentioning it during my last appointment.

I had an mri just over a week ago so hoping I will get another appointment with gynae soon to discuss results where I will mention it.

Don’t know what can be done though as he’s already said further surgery would involve full hysterectomy and remove remaining ovary and likely cause increase pain and damage to nerves and bladder.

Been referred recently to pain management so will see what happens there.

Bit of a nightmare!

Best wishes to you xxx

[plotments in reply to Lily1986]

A living nightmare......I hope pain management can come up with something to help.

Think I'll be looking at hysterectomy when they do bowel op.....its so frightening when you think we either live with the endo or have extremely invasive surgery which can cause a whole load of other problems!!

Take care xx

[Period13 in reply to plotments]

Have you ever tried acupuncture to help relieve the pain?

[plotments in reply to Period13]

Tried that a few years back it didn't make any difference.....had ago with a tens machine as well but that made things feel worse. Used to get some mild relief with a hot bath but I can't get in or out of it now and the heat seems to make pain worse ....I've been using ice packs the last few days.

[Period13 in reply to plotments]

Oh wow that's interesting, sorry it didn't work for you. I haven't heard of ice packs working for this kind of pain, heat packs are working for me atm. I haven't tried the tens machine yet, only heard about it this week.

[Lily1986 in reply to Period13]

I haven’t tried acupuncture but it is definitely something I’m willing to give a go. Has it helped you?

As the other lady mentioned, hot baths help a bit and I wish I could live in the bath lol but I do struggle getting in and out of it now too. Xx

[Period13 in reply to Lily1986]

Well I've actually ben having acupuncture in my lower back which I was having problems with during lockdown (not endo related but a recurring back prob). My chiro suggested it and it definitely helped with my back injury. I was also having lower back pain (different kind of pain), particularly on my left side (which is where my cyst is), also have constant shar pain in my lower abdomen on the left side.

Anyway, the chiro was giving me some acupuncture for my back right across the lower section of it and it really did help alleviate my endo pain too. It was a happy coincidence but she has mentioned someone who specialises in acupuncture who she could send me to now my back injury is almost sorted for when the endo pain is really bad.

Also, do you use a microwaveable heat pad for when getting in the bath isn't practical, mine really helps! x

[PaoPetite]

Hi Lily,

Let me tell you i am feeling exactly like that actually I was about to post something related to your question, but apart from all that pain i now feel really bad pain in my leg and every nigh i am having spasms all over my body plus pin and niddles, i just had another laparoscopy 2 months ago and my left falopian tube was removed with a 4.5 cm endometrioma on my left ovary, now i have another cyst\endometrioma on my right ovary 5.5cm and i am coming to a conclusion that this symptoms have to do with the cyst growing .... i fell desperate, i have been referred to the emergency department for another op but i just dont thin i have the strength to go under another laparoscopy ..... so i am hoping the cyst has reduced a little bit with the pill.

All the best xxx

[Lily1986 in reply to PaoPetite]

Thank you for your message.

I am so sorry you are having the same problems. It’s so horrible.

I had my left ovary and both tubes removed about 2 years ago but been left with a persistent pain in my left it makes me feel I’m going to throw up at times. My legs and tummy go numb too followed by pins and needles.

Each time they’ve operated my bowel has been smothered in disease.

And now these back spasms too. Looks like my future will involve lying down flat for most of it- great!

I’m frustrated and worried that I haven’t mentioned the back issue to my consultant yet, hoping I will get a chance when i discuss the mri results.

Best wishes to you xxx

[Gingernut74]

Hi,

Yes I was only mopping the floor the other day & have always had issues with my lower back but have again always put it down to a weak dodgy back - but wondering if it’s always been connected to endo? But after doing that I was left in agony at sacral area - was so sore even to our heat cream on it, luckily had a massage booked so was able to work on that.

Watch the webinar the other day on endometriosis uk.org with Hannah & a few other speaks from The Royal Free - was very informative, relatable & useful for us ladies, some things you may never have connected again to this awful debilitating chronic condition.

[Lily1986 in reply to Gingernut74]

Aw thank you that is really interesting and helpful. I will have a look on the Endo uk site and see if I can rewatch the talk.

Do you find massage really helps? I think I might have to make having massages part of my routine xx

[Gingernut74 in reply to Lily1986]

Hi, yes I really do - but the reflexology & reiki helped immensely, so much so I nearly didn’t have another Lap Diagnosis but then professor said it was def worth having done, but think my 2 x c-sections & a full tah hasn’t helped as they then leave scar tissue/adhesions, thankfully can now go back to treatments- it works for me but then I hold a lot of tension & stress which I know heightens pain, so will do anything to help me live a more manageable enjoyable life!

Should be prescribed it on the NHS 😂.

Good luck 😉 & im happy to help with any questions or queries x

[luthien]

Yes, I had it a while ago and thought I was going crazy! It's actually really common not just for women with endo but us generally as our core muscles are weak, this makes our lower back compensate which changes our posture by milimeters which can make all the difference.

My lower back pain was always present but the coccyx pain only showed after my laps and during my flare up days.

I replied to a lovely lady a while back querying back pain too; my physio says it's all related, explanation in the post!

healthunlocked.com/endometr...

I'm having regular monthly "maintenance" physio to help with my lower back and coccyx, which is going well, I now only have a slight ache during the first day of my flare ups.

It's not a quick solution; it'll take a bit of time with physio, core exercises and strengthening your back which may mean some at home exercises (google core strenthening). I started to notice improvement after two months. Physio works on the lower back, sacrum, hips and coccyx mobility, as often that whole area can be tight.

My GP just said try steroid injections or have coccyx surgically removed, didn't mention physio so I had to look up ones locally myself, but it has helped so much.

x

[Lily1986 in reply to luthien]

Aw thank you very much that is so helpful! Xxx

[Whoisthis]

Such an interesting thread, I’ve just booked physio as I’m 12 weeks out of surgery and suffering with muscle cramps and back pain. I thought it would be related to my core being so tense with pain for what feels like months.

[Lily1986 in reply to Whoisthis]

Oh no. That’s awful, as if recovering from surgery isn’t enough?!

Do you book the physio privately? Xx

[Whoisthis in reply to Lily1986]

I did as prior to surgery I was weightlifting and training so he’s known to me and amazing, so he’s fixed me many times over, I’ve booked some recovery sessions to ask him to look at my hip flexors, ql muscles and try and loosen up!!

[Realtiger]

Another vote for physio and focusing on pelvic stability and core strength from me. Have been dealing with pelvic and musculoskeletal pain for years despite only recently finding out I have endometriosis. As a now ex fitness instructor I’ve been baffled by why I should have developed lower limb weakness on my right side but I’ve been working with a physio for 5 years (I couldn’t walk or do the housework back then) and, whilst not the whole explanation, endo makes sense to him too. Also find Bowen therapy helpful - my practitioner often picks up on the tenderness around my coccyx and comments that it’s shifted to one side - always leave feeling much better 🙂

[angiebabes88]

I am experiencing this pain, and have been for about a month now. I had the exact same pain when I had the coil inserted, after 4 weeks I couldn’t cope with the pain any longer and they removed it, almost immediately the pain was gone. Now the pain is back and I don’t have the coil I’m wondering what it could be, it’s so painful and nothing is helping to ease it. It’s just constant burning. Does any exercises help relieve it a little?

[Lily1986 in reply to angiebabes88]

Im so sorry you are struggling with this too. Interesting about the coil though, I have the mirena and though my all it’s done is reduced my bleeding as still in a lot of pain most days.

Only exercise I’m able to do is short walks and even then I can feel it starting to tense up.

A lot of people have said it’s common with stage 4 endometriosis involving bowel which I’ve had surgeries for in past so I’m assuming it’s to do with that.

Spoke to gp last week and she just said it probably is endometriosis or adhesions but waiting mri results to see if that shows anything.

Best wishes to you xxx

[angiebabes88 in reply to Lily1986]

I don’t know what stage I am. I’ve had 2 surgeries and both times, endo found on both ovaries, my ascending colon and my womb and bladder were stuck together in the second surgery, I have phoned my endo nurse today, waiting for a call back, really hoping it’s not the issue but it would explain a lot!

Hope you can get your results back soon to get some answers

[Lily1986 in reply to angiebabes88]

Aw thank you. I hope you get some answers too. Bl**dy horrible disease, even when it’s removed it leaves a load of other problems to deal with!

That’s good you’ve got a number for endo nurse. How do you get that? I wonder if i can find a number for someone I can ring other than the consultants secretaries(s)

Xxx

[angiebabes88 in reply to Lily1986]

She’s the nurse that my consultant works alongside, honestly she’s been amazing if I ever need to ring for advice, I’m in Northern Ireland so not sure if it’s the same everywhere.