Coccyx Bruising/pain: Hi, I’ve often... - Endometriosis UK

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Coccyx Bruising/pain

emmaquinny profile image
23 Replies

Hi, I’ve often suffered with lower back pain especially around the time of my period, I’m 7 wk post lap and it’s around my period time (not sure exactly as mirena stopped period). I’ve got a lot of pain in my coccyx area, right at the top of my bum crack! Hurts there even to move my pelvic floor, and there is some bruising coming out, but I’ve definitely not banged the area at all it’s just gradually got worse. Has this happened to anyone else or anyone know what it might be? All ideas and advice greatly accepted as always xxx

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emmaquinny
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Maxi72 profile image
Maxi72

Hi

I suffer with back, buttock, leg and sacral pain. The sacrum is just above the coccyx. After years and years of putting up with it, I was diagnosed with nerve damage caused by endo and the nerves feed these areas. It’s rare but possible. I’m now on Prostap and when it wears off my pains including the sacral pain returns.

emmaquinny profile image
emmaquinny in reply to Maxi72

Thanks Maxi72. I had endo removed from 9 places across my pelvis, hopefully I will find out the exact areas on my check up, and that may account for it. I’m also on a nerve related painkiller, pregabalin, I can possibly increase and see if it helps. Thanks again xxx

Maxi72 profile image
Maxi72 in reply to emmaquinny

You’re right, it should help to have the explanation of your surgery. Like a lot of people, mine was on the utero-sacral ligaments in the Pouch of Douglas. It’s not possible to surgically remove from the nerve plexus though hence the Prostap long term. I was on gabapentin which is similar to pregabalin and the only thing that helped. Even morphine was ineffective but these drugs target nerve pain. Hope you have some relief soon.

HellyLlewelly profile image
HellyLlewelly in reply to Maxi72

Im reading your posts Maxi and its like im reading about myself right down to the Pregabalin& Prostrap..Ive the same symptoms as you and I trialled coming off Prostrap twice and both times a return of endo symptoms the most recent trial I ended at the weekend as on Friday night I took 4 stabbing pains mid right side of right abs.

It was horrendous then more pain like period pain (Im total hysterectomy bso recovery 1 year this month)

Followed by diharea.

I was literally back on the Prostrap the next day.

My consultant wrote the script for me for a year only and I see him tomorrow and Im gonna ask for it for life with my hrt gel.

Im the second woman I know post hysterectomy who is still having endometriosis symptoms.

I had a bowel shave at the same time and my bowel is still giving me large clues that its grown over it again. Ive been getting the signals since 4 months post hysterectomy.

I made a diary and had symptoms most months out of 12 especially at the time ovulation and my period WOULD have been due.

Where I live in Northern Ireland we are very behind in terms of specialist care for this illness and may ask to be referred to other area for a specialist in the BSGE centres page.

Im definately needing the Prostrap.

If its a choice between tiredness and stabbing pains and spasms I will stay less alert and energised on the progesterone tp have it cull the effects of endometriosis regrowth.

There is no easy fix for this horrible horrible illness.

I feel like a nice big ripe shiny apple and when you look inside its infested with worms.

I dont look sick at all yet Im riddled obviously.

My pelvic, coccixs and sacral pain are dementing me.

Im pushing through exercise almost every day to get a way past this horrible feeling of mechanical stiffness/ frozen pelvice.

Big hugs to you and Emma I feel a real sympathy of conditions with both your stories to mine.

God help us.

Hope they find a cure for this b@sdard.

Sprry for swearing I cant help it Im so angry at this illness.

Helly.

Maxi72 profile image
Maxi72 in reply to HellyLlewelly

Sorry to have not replied sooner. So sorry that you’re still suffering so much despite a hysterectomy! I hope your consultant was able to prescribe you Prostap for the foreseeable future. In my experience, you just need to be having regular bone scans and HRT.

HellyLlewelly profile image
HellyLlewelly in reply to Maxi72

Thank you Maxi I got Provera

I think its similar and Im on Estrogel 80mg gel pump also..first bone scan April 28th.

Thanks so much for your reply.

Yes, very much having "flare ups" xxx

purplegrapea profile image
purplegrapea in reply to emmaquinny

It may well be related to the areas you had removal, and they do poke around quite bruskly in there to get to your organs! I had some endo excised from my uterine ligaments last year very low at the front and it's still sore on occasion - I guess it formed scar tissue as it healed up, but I'm not sure. Off to physiotherapy soon to see if it helps. Hope you feel better soon.

HellyLlewelly profile image
HellyLlewelly in reply to emmaquinny

Bless you. 9 areas....eeessshhhhh, how nasty..you poor pet.

Im on 100mg twice a day of pregabalin and any higher and I might feel too loopy or spaced out/relaxed..

I went from 50 to 75 to 100mg twice per day so see what level works for you. Im not pain free I manage with ibuprofen top up, especially to ecercise.

Good luck Emma x

emmaquinny profile image
emmaquinny in reply to HellyLlewelly

Thanks Helly always good to hear from you, I’m on 100mg 3xper day and now another nerve one called duloxetine which will take afew months to work apparently 🤦🏼‍♀️ still on tramadol as and when, having a flare atm as well as a urine infection....hoping a meeting with occupational health will come up with suggestions to ease things with work too. Hope you are well xxx

HellyLlewelly profile image
HellyLlewelly in reply to emmaquinny

Awww Emma,

Dear love you, you are bad at that dose (I prob need that third 100mg myself) Duloxetine was really great for my anxiety but I eventually went on to Fluoxetine for sweats and for mood lift, last year Id pretty bad depression for most of Oct Nov & Dec.

Im much better mind wise yet still loads of pain.

Ive popped a 3rd 100mg pregabalin and more Ibuprofen in a bid to get pain free.

I saw my consultant today who thinks my endometrial regrowth chances are low post hysterectomy/ bowel shave so referred me to coleorectal surgeon for examination.

Most concern seems to be with my bowel.

He also mentioned gallstones to me so I guess these can be looked into also. Im also for his Endometriosis clinic in 4 months.

Us poor ladies.

What we would give to be pain free. Xx

HellyLlewelly profile image
HellyLlewelly in reply to HellyLlewelly

I Think endometriosis is responsible for lots of interference with nerves and nerve damage.

Neuralgia pain relievers seem to be a good route to be on.

Wish the pain would DO ONE tonight x

Thecraftyadder profile image
Thecraftyadder

I've had issues there for years but its been really bad since surgery. A lot of it is nerve pain. I find pilates helps me keep mobile and can ease the pain for a few hours but I do worry if its permanent nerve damage now. Sleeping with a small cushion or pillow under the back of your knees or between them if lying on the side helps take the pressure off that area else I wake up crippled.

emmaquinny profile image
emmaquinny in reply to Thecraftyadder

Thanks, I can relate to that, no longer sleeping on my back as it hurts! I will try the cushion. I’m wondering though if nerve pain can account for the bruising coming out. Bizarre! X

luthien profile image
luthien

I have exactly the same issue. When I went to my GP and finally a physio we worked out what was wrong:

I noticed coccyx pain about four months after my first lap (November 2017) and went to the docs, they just said as it's not damaged leave it for a few months. So I went back, after my second lap (July 2018) as it still hadn't eased even with all the resting.

I found it hurts when sitting and then sitting to standing, but once it starts hurting it's pretty much always hurting.

I went to see a physio / mobility specialsit as I thought this can't be right and didn't like the docs just giving me options of painkillers or surgery. Within 30 mins of seeing the physio team and taking my history he knew what the problem was! Basically due to being laid out during the lap, recovery, and having incisions in the core, plus endo bloating and irritation all the muscles in the core are weak, which results in the lower back compensating. This means the back becomes irritated, and inflames, which traps any nerves and blood vesselsthat run through it. This can cause back pain, neck pain, coccyx pain, hip pain, leg pain, and sciatic like pain, including throbbing and changes in blood supply. My physio specialist says he sees it in a lot of women, and for some reason docs won't think of mobility and moving it so just keep giving painkillers.

The physio doing massage and manipulation to get it moving again as that whole area is stiff and non flexible, along with some home exercises. I started with the physio stuff about 6 months ago with once every two week sessions, now it's once a month.

I've been having physio and going to core strengthening classes with the aim of making me aware of my core muscles (abs) using them correctly to support my lower back. It's helping massively, it is slow progress probably because I've had my back pain for years and didn't really give it much thought until the coccyx pain came in.

I'd definitely recommend looking into physio, but look for the mobility, movement, injury specialists. The core exercises are good too as they helped me actually notice those muscles and how to use them. The pain isn't normal and you shouldn't just cope as it could be something longer term that affects your posture and movement especially if it affects the surrounding nerves and muscles. My coccyx pain highlighted that I have a stiff spine, something that affects how I walk and move, but I just passed it off as "another pain to deal with".

On a side note I can tell my back isn't right as since I've started polefitness and yoga some stuff actually hurts like bruised pain even though a normal body should be fine with it, the physio is helping with that too :)

Hope that helps xx

emmaquinny profile image
emmaquinny in reply to luthien

Thank you so much for your reply it certainly does help! I will be speaking to my gp/gyne about this! X

luthien profile image
luthien in reply to emmaquinny

Yay!

The gynae may not know about these issues; mine didn't as they treat the area they specialise in so back pain etc isn't their speciality. your gp may give you the option of painkiller tablets, cream, injections etc, but even if you don't want those at least you have it logged that you've got a problem.

Perhaps search for physios independently as I found under then NHS referred one they wouldn't see me - send you a list of questions, then a response - apparently because I could still go about my day to day activities and don't need pain injections the NHS closed my physio file without seeing or talking to me. so I just started asking at my polefitness classes and found a few women use the guy I now see. He's James Hunt under Physical Element. Have a look for an idea of what sort of physio you need :)

HellyLlewelly profile image
HellyLlewelly in reply to luthien

Farahziya

Im having exactly the same success as you for the same reasons..

What an excellent answer you provided EmmaQuinny.

moving my pelvic area and gently strengthening my core has helped my heaps, Im 11 months post hysterectomy (total, bso)

The pilates and core exercises are better than any painkiller but in combination with pain relief Ive taken that pressure off my lower lumbar spine which was massovely compensating for my weak core muscles.

Even 3 days a week actively working my core is preventing me being in wincing coxics pain..it was like someone had their boot jammed in my coxics bone and pain radiating out and down my thigh.

All nerve endings in that area going haywire.

100mg twice daily of pregabalin a neuralgial pain relief has been my life saver.

Ive started exercising from January, hit a blip for my 40th, stopped and was really really in pain again so attacked it slowly and pain free practically as of this week bar a few nerve squirms.

Only thing I notice is I kind of habe muscle jerks or twitches maybe its with my Fluoxetine medication but they mildly irritate me.

Good luck Emma

Your torso has taken a beashing having it off 9 areas Id be black n blue and expecting that for a good few months after lap! Healing blood vessels, ligaments etc.

Good health to you sweetie

Helly.

emmaquinny profile image
emmaquinny in reply to HellyLlewelly

Thanks HellyLlewelly I intend on trying this. Not sure if I have a class nearby but I will maybe try a dvd first. I’m wondering as well, something I didn’t mention was I’ve gone back to work this week so I’ve been constantly on my feet, I’m exhausted but that could be irritating the area. I’ve booked in a telephone appointment with my gp for Friday, see if I can up my pregabalin or anything! Xx hope you are well xx

luthien profile image
luthien in reply to emmaquinny

There's always light core and abs classes (not the abs blast as that's too intense for recovery) you could always ask your local sports center :).

I found out about my core classes through my polefitness center!

Dvds will work however they aren't tailored towards surgical recovery or pre-existing conditions so could actually cause more problems; they usually just work the core and won't look at injury - there's a disclaimer on all of them that say if you suffer from pain then speak to a doctor first. Ideally you need to talk to a personal trainer for the lower back / coccyx recovery in line with core strengthening. Or join classes - yoga may be a good start and then from there you can ask the instructor what other classes you could do to help your core; there will be a list of people they recommend or friends or people whom go to their classes. It'll of course cost more than a Dvd but you'll know you're getting the right treatment and specialised exercises.

Thecraftyadder profile image
Thecraftyadder in reply to emmaquinny

It good to get some instruction to understand how to activate your core and hold yourself while exercising (I was lucky as the NHS physio who did a back rehab class years ago was a Pilates instructor as well and taught me some). But there are also some good YouTube work out videos. I've recently been using the one by Fitness Blender which is a post natal/post abdominal surgery workout. Designed to be gentle with adaptations if you are still in a lot of pain. I'm not ready for the stuff I used to do yet so this has helped me a lot.

Catness profile image
Catness

Hello,

I think what everyone else has said is absolutely spot on, but just to add that one of my biggest and worse symptoms is unrelenting back pain that’s just getting worse and worse. I’m about to have my 6th lap and I’m stage 4 so I’ve been around the block a few times surgery and recovery worse.

However recently, as my mirena coil comes to its 5 year birthday, I’ve been really trying to remember if I had such bad back pain pre-coil. And no I didn’t.

And then I googled ‘mirena coil’ and ‘back pain’ and holy flaps it’s everywhere. A huge amount of us seem to be experiencing back pain with the coil.

My coil has helped me but at a huge cost to my mental health and that little B**tard is coming out at my next lap.

I’m not telling you what to do, some people love their coil... it just May be worth thinking about xx

emmaquinny profile image
emmaquinny in reply to Catness

Yeah I can see where you are coming from! I think that because it has stopped the awful bleeding I was having, atm it is worth me keeping it in but I will bare it in mind! X

HellyLlewelly profile image
HellyLlewelly

Great positive help on this thread...proud of all of you ladies x

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