Cervical myelopathy/bowel urgency/internal re... - Pain Concern

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Cervical myelopathy/bowel urgency/internal rectal prolapse

Sandra2468 profile image
38 Replies

I am convinced that there is a connection with my spine and anal region. Spine consultant sees no connection. Have early morning pain L5/S1 over 10 years possibly facet joint related. The pain I have is early morning on waking low down and wakes me after 5 hrs.(Over 10 yrs) I've got to the point of dreading going to bed. I am convinced my anal symptoms which are verging on prolapse are spinal driven.

In addition I have severe narrowing C5/6 little pins and needles in hands ECG testing at normal limits no neck pain but joint pain in elbows at times but no weakness in upper body. However myelopathy cannot be totally ruled out.

Could the cervical spine cause the internal anal problems? The worst is anal discomfort when sitting, leading to incomplete evacuation. When up and mobile and not sitting I am able to function. Coping with little sleep is difficult and have chosen to be drug free.

Swimming has been my medication and possibly my salvation.

Any advice most welcome as I am verging on a prolapse surgery with spinal fixation and mesh which may exacerbate my spinal issues. (Ventral rectopexy)

I may end up swapping relief in my anal canal for 24/7 back pain. However my anal problems are not improving and this intussusception (internal prolapse) is difficult to live with causing sitting discomfort, and verging on continence problems.

Any advice most welcome.

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Jenharri profile image
Jenharri

I've had similar problems but the other. Way round.

Put to one side all my arthritis Psoriasis problems the Lumbar spine L4L5 L5S1 has been the most painful & hardest to deal with.

I had a cystocele & a Rectocele operation. Which was successful but I've had problems with my lumbar spine more so since the op. To the point the pain at times had me on my knees. I have had nerve block and & 2 ESI which have been helpful. Like you I also have it in my neck C3 to C6 narrowing and facet joint arthritis . Strangly after the lumbar Epidural's this helped the pins & needles in my hand.

The prolapse op is a complete success. I'd hate to have that discomfort. It would be nice to have none of it!

Hope things sort themselves out for you

Jen X

Sandra2468 profile image
Sandra2468 in reply to Jenharri

Thanks Jen,

I hope my posting may help others.

I'm not so sure my issues are the other way round. It is possible that an "arthritic' condition has not been diagnosed. I have lived with pain as a way of life like so many of us have RA and a very high ANA always apparent and I have seen rheumatologists over the years and been turned away and told blood tests mean nothing. One professor after a private appointment Prof Hugh's St Thomas did think I had a mild sjogens and told me to take a baby aspiran daily and was going to put me on an anti malaria drug quinine. The side effects looked horrid so I declined and at that time had regular private testing as I had private cover. My bloods came back stable but my ANA always high. I probably had cervical issues then but did not realise.

Last week I did ask my GP to teferr me to Northwick Park NHS. Rheumatology. He told me it would be s waste of time , however he has agreed. At least now I can take MRI reports and a CT spec which shows my lower back and cervical issues. (2 years old) I am assuming I may yet be turned away, but feel the need for monitoring and sone support.

Back specialist UCLH only see you if you require surgery. One doctor was going to put me on the list for cervical spinal surgery as he felt the narrowing and severity was not good C5/6. On my return after ECG testing which was at normal limits he said they do not have the funds to monitor and semi discharged,l (A different doctor in the team)

Privately I was due for MRI and neurologist opinion but to be honest my anal/prolapse symptoms have taken over my rheumatic oroblems which I believe to be the primary cause. My GP does not understand prolapse at all and has sent me in the past to various rheumatologists over the years stating that I do not have an autoimmune disorder and the appointment will be a waste of time!

I fear rectopexy Jen. If you look at postings under rectopexy and Starr you will understand my hesitation.

You had a successful surgery are we talking about no longer having recital discomfort. When I cough everything is more apparent and a session of banding did not help I have prolapse in all 3 departments womb at entrance of, bladder well down and a sliding bowel (intussusception) causing a little incontinence at times.. The sitting discomfort is horrendous. I've tried irrigation Quifira. It helps me empty but I still have the canal canal discomfort. A ring pessary made no difference as my problems are predominately anal but my womb and bladder are pounding at my pelvic floor. Hysterectomy and anterior repair could hasten the internal recital prolapse and supporting these organs sounds the right way to go.

But Jen the supporting if this mesh is back rekated and could worsen my back pain. (I believe your surgery did) The mesh can cause erosion although there are new dissolvable meshes being used but no monitoring or outcome reports.

I am awaiting new proctogram X-ray sitting abd MRI supine as both give slightly different info.

Jen I am seeing 2 colorectal specialists. One NHS and one private at 2 renowned centres.

I am also seeing a uro-gynaecologist at another hospital for opinion. I have been offered hysterectomy and anterior repair but this would most likely lead to a subsequent recital op.

I believe my prolapse is spinal driven and will present my spinal info to the surgeons in the hope that this will be taken into consideration.

If you would be so kind to PM in depth the surgery you had would be most grateful. We have been in touch re Tens machine.

Thanks Jen,

Sandra

dianebow1968 profile image
dianebow1968 in reply to Jenharri

Oh Jen! You sound so much like I do ? Main pain l4l5 but s1 effected to

dianebow1968 profile image
dianebow1968 in reply to Jenharri

What's a cystocele ect please jen

Jenharri profile image
Jenharri in reply to dianebow1968

Cystocele is a prolapse of the pelvic floor you can have 1 way bladder 2 way bladder & bowel 3 way bladder bowel & vagina.

Basically Diane - the bladder & bowel has collapsed protruding through the vagina. You can imagine how uncomfortable that is sore etc most unpleasant.

The consultant thought I had a 3 way prolapse but when they went in through the vagina with a camera they saw was just 2 way otherwise they would need to stitch the vagina to a tendon in my back she did warn this would give me back ache!! Thank goodness it was OK

Sorry you are suffering the L4L5 L5 S1 spinal problems I have spinal stenosis & compressed discs DDD. I try to keep moving the inactivity can make it worse, its finding the right balance. Do to much and it sends you incapacitated 😩

Hope the Cystocele question helped?

Jen X

dianebow1968 profile image
dianebow1968 in reply to Jenharri

Ooh thank you for explaining sounds as though it was horrendous for you Jen & yes spinal senosis sounds very painful to & simaler as I have to try keep active little by little to, I did wonder if I had the start of it although surgeon did say my spine looks strong and healthy apart from extra synovial fluid cyst & bulging? So I'm not sure as waiting again to see him

Have you found any medication helps ? Or herbal remedies? I'm pretty new to all the conditions so please forgive my ignorance with conditions ect x

Jenharri profile image
Jenharri in reply to dianebow1968

Hi Diane

My tolerance of certain drugs isn't great I'll either vomit or suffer bad side effects. Fortunately the slow release Butrans Patch works for me & CoCodamol for breakthrough pain. Amytriptyline, Gabapentin Fentynal Codrydamol Tramadol etc I can't take the list is long plus they made me feel like a zombie. At least I feel normal whatever normal is? LOL

Jen X

bettyfl profile image
bettyfl in reply to Jenharri

Hi Jen and Sandra,

I have a lot of the same problems. Rectocele, bladder prolapse and my uterus is pushing on my rectum. I have to see a surgeon for all of this, but my coloerectal dr said if the uterus pushing on the rectum is not causing my constipation then if I can handle it I would not have to have the surgery at this point.

I have IC, Pudendal Neuralgia, and all kinds of problems with my back.

I work and every day is a challenge for me. This brings me to what you said Jen: "I try to keep moving the inactivity can make it worse, its finding the right balance. Do to much and it sends you incapacitated I try to keep moving the inactivity can make it worse, its finding the right balance. Do to much and it sends you incapacitated"

I believe there is such a fine line between how much to keep moving and when to stop. I am exactly the same. Some days I have to push to the limit or my work will suffer and I need to work. Then I am in pain and frustrated, I get anxious and very uptight. The same thing happens at home because so much of it is a mess and not organized and it's hard to clean because of the pain, so I do a little every day, just to not fall more behind, but it is hard, very hard. I am 64 years old. I take one day at a time and I am a follower of Christ, so my real Christianity helps me the most.

I do have to take pain meds and other meds to help me, but it has been the worst 9 years of my life to this point. I pray to God to help me through it. I hope I do not get too much worse with anything, because that would be so difficult.

I really need to learn to do what i have to to help myself. Meditation, stretching, all kinds of stress relief. If anyone has any ideas about that it would be wonderful to hear. Some days the pain is so bad I don't even want to be here. That thought comes and goes so it's not that I would ever do anything, it's because i am in too much pain.

I hope when I see the surgeon he says I don't have to have surgery, after what my dr said I may not even go to one.

I hope you both find more help for your problems and will keep you in my prayers.

Carol

Jenharri profile image
Jenharri in reply to bettyfl

Thank you for your reply. Sorry you are suffering. I have had a total hysterectomy. Would it help if you had the same? Also, over a year I had the 2 way prolapse operation a complete success.

Could they not do both operations together to give you some relief?

The spinal stenosis has improved but like many others there isn't the complete cure for it. I will see what the consultant suggests come the Autumn.

Wishing you luck

Jen X

Sandra2468 profile image
Sandra2468 in reply to Jenharri

Thanks Jen for that.

I think you are suffering with your aches and pains more than me and you are so very caring and considerate to others.

I have a fallen bladder, internal rectal prolapse and a mobile womb at entrance of vagina.

Have been told if I have a hysterectomy and anterior repair the internal rectal prolapse can worsen. The womb if left in tact helps support the other organs. (this is colorectal opinion) The surgery ventral rectopexy is risky with mesh. The surgery is still progressing and the doctors are getting better at it.

The mesh is attached to the S1 promontory region with screws into that area. I already have chronic early morning pain so I dont think now I could risk that!

I am wondering if it is possible to have just ligament surgery for all 3 without mesh, and if that all fails go the mesh route at a later date, but keep my womb.

Thanks again Jen for making contact.

Sandra

Jenharri profile image
Jenharri in reply to Sandra2468

Hi Sandra I understandyour plight fortunately yes the prolapse has been resolved. The surgeon thought I would be in need of the attachment to the ligament but fortunately it wasn't required.

Yes I do suffer pain from from my Psoriatic arthritis & OA which is bilateral in all joints the spinal problems just adds to the mix 😩

I do hope whatever you decide will sort the problem for you and the sooner better. The bladder and bowel prolapse is unpleasant in itself.

The surgeon did say to me if they attach to the ligament I will suffer back pain? I already suffered that anyway!

It is a relief not to suffer the prolapse along with the rest of my complaints.

I'm wishing you much luck Sandra. Please let us know any outcome?

Jen xx

Sandra2468 profile image
Sandra2468 in reply to Jenharri

Thanks Jen,

I see yet another uro-gynaecologist at end of August.

Like most of us on this site my history is not that straight forward.

I have been seeking opinions for a while now and there is no right way for prolapse.

We are all different and what works for some does not work for others.

I will most certainly give the tens machine a whirl in the hope it helps this L5/S1 chronic early morning facet joint pain.

Sandra xx

Coastwalker profile image
Coastwalker

Hi Sandra,

Spinal degeneration (and even discs,) right down to the feet can be linked to vitamin B12 Deficiency, pins and needles is a listed symptom of B12 Deficiency. (I had those,)

Ask for B12 bloods to be done and DO ask for your printout of your B12 blood result and it's ranges.

Doctors will usually only acknowledge and treat vitamin B12 Deficiency when your blood result is 'under range,' but as many 'missed/overlooked vitamin B12 Def. patients know, having a 'low within range' B12 blood result can still cause all sorts of symptoms and problems.

Do ask your Doctor or receptionist for your blood results and pop them up on the PAS Pernicious Anemia Society (also for vitaminB12 Deficiencymembers too) where it's members will help you forward. Most important, Do NOT supplement before having vitamin B12 bloods done.

You can also go private or do online home finger prick tests now if you didn't already know. We recently used online blood tests which were reasonable and well worth doing, my husband would still be ill now if we had not done them.

Also ask for your vitamin D blood to be done as If you are low in one vitamin you can be low or deficient in others too, but again do not rely on Doctors diagnosing.

I was found vit. D deficient and treated with a low amount of D3.

Once I self supplemented on a far higher (safe) dose it got rid of not only my tailbone pain which my Doctor said I would just have to live with, but my stiffness getting up out of chairs and beds, hip pain (thought i needed new hips) leg pains and lower back pain. Once I was on a higher dose of my own all symptoms went overnight, amazingly.

Vitamin deficiency's can cause all sorts of problems, I never knew I had these problems, till bloods were done, but you MUST get hold of your blood results.

PFKAAde profile image
PFKAAde in reply to Coastwalker

Hi Coastwalker

Would you mind expanding on the statement not to supplement with B12 prior to lab results? I understood that B12 was water soluble, and as such any excess would be excreted out in urine.

Is this not what your research has shown?

Regards

Ade

Coastwalker profile image
Coastwalker in reply to PFKAAde

PAS Pernicious Anemia forum advice, advises not to supplement with B12 before blood tests as it will not give an accurate result. I believe it is to do with the amount of B12 travelling round in your blood might not be the same as at cellular level.

Supplementing B12 might skewer your results, the results might look you like you have good B12, results, but you might not be absorbing it. (at celular level)

Do check it out yourself though Ade.

Yes as you say, B12 is soluble and any excess is excreted.

Best B12 supplements are under the tongue, (sublingual,) Methycobalamin.

PFKAAde profile image
PFKAAde in reply to Coastwalker

Ah ok, totally agree. For me the GP wouldn't do a b12 test as from my most recent FBC had shown red cell size as normal and according to him people with a b12 deficit have abnormal red cells. Idk.

I supplement anyway with sublingual methlycobalamin, metafolin, trimethylglycine and potassium chelate (also magnesium + zinc as they go hand in hand with potassium I understand) as dad has PA + autoimmune condition, I have autoimmune condition, neurological symptoms and about a zillion other risk factors that my brain fog has made me forget. 😀

I decided just to try it and see if it made a difference to anything, not very scientific but if I waited to do everything 'properly' I have tried recently I'd be dead before I started.

Thanks for the reply.

Ade

Coastwalker profile image
Coastwalker in reply to PFKAAde

Know where you are coming from Ade_Bell. Doctors are good at missing both B12 Deficiency and PA, I'd be checking on them both with your blood results on the PAS forum site on Health Unlocked.

You mentioned Neuro symptoms and brain fog, alarm bells are ringing so a chance you could be either B12 Def. or even low thyroid, or both together. Brain fog is a symptom of both. All my neuro symptoms and brain fog lifted overnight once optimally medicated. That was amazing the brain fog lifting,

I had low in range B12 and low thyroid. Though I had to push for my thyroid medication to be upped, only down to me pleading that I ever got optimally treated, I now self medicate as I can now choose my optimal level. (when and where you feel best at.)

PFKAAde profile image
PFKAAde in reply to Coastwalker

Hi Coastwalker

I've always ruled out thyroid as lots of the symptom don't seem to apply, but looking again I guess hyperthyroidism is a possibility, I always struggle to keep weight on (which may sound good to some but has its own problems 😬), and a few other little things.

Am off on hols next week but I may spend the time motivating myself to make an appointment with the GP and plead for a full set of tests, thyroid, vitamins, etc.

There are so many overlapping symptoms it's not easy working out what might be causing what sometimes and having an autoimmune condition adds to the confusion (as well as increasing the likelihood of deficiencies and comorbidities).

Thanks for making me rethink things. 🙂

Ade

Coastwalker profile image
Coastwalker in reply to PFKAAde

Good to hear you are having a rethink Ade .

Can you get hold of a copy of all your last bloods done (and their ranges.) Or like you said ask for new ones to be done and get a printout and pop them up on both thyroid UK and the PAS forum sites, On both sites there are members who are good at spotting problems where Doctors have over looked them, it is not rocket science as they say. ;) :)

Also are you on any medication maybe ?

We need to get to the root of our symptoms/problems, all prescribed medication has side effects and merely covers over the symptoms without treating the causes, as you no doubt know.

'Please' remember to get your printout. Many members, daily, on Both the Thyroid Uk and PAS forums here on Health Unlocked find out what's wrong with themselves once they produce their blood printouts.

PFKAAde profile image
PFKAAde in reply to Coastwalker

I'm not sure what tests they did last time, I was being checked for ?low-grade infection that turned out to be side-effects of Pregabalin. I have been reducing the dose since (which has taken ages due to how bad I feel every time I reduce it, that and pain) and am now on 25mg twice a day from 300mg twice a day.

As of three days ago I no longer take sertraline, I did taper and fingers crossed feel ok. Last time I came off it I felt dreadful and wasn't very nice to be around. 😡😀

I have recently stopped Diclofenac / lansoprazole after 16 years and just put up with the increased pain along with curcumin / pipperine.

I'm reducing morphine slowly having been on it for years prior to needing knee surgery and following major spine problems (on 45mg was way over 300mg 😬), and the rest are supplements .

So all in all I've nearly achieved my goal of being on Humira alone. Not sure if / when I'll tackle that, depends on the success of major dietary changes I am making.

Last time I went on holiday I needed a suitcase just for the tablets! This time I'm taking a few strips of morphine, two strips of pregabalin and supplements.

It's got to be better, I'm going to let things settle once off everything and then push for tests I think.

It's funny how you just get used to shovelling pills down your neck sometimes, it takes a big effort (and medical approval) to do something about it.

Thanks again.

Ade

Coastwalker profile image
Coastwalker in reply to PFKAAde

Wow! you have done well Ade, not easy to come off of them.

We got my Mum off of nine pills she didn't need, unfortunately the dangerous Statins caused her kidney failure and now has to have dialysis 3 times a week, it was too late to save her on that one. The dangers of prescribed medication is starting to network out and taking more nutrition, vitamins and minerals is catching on too. several years ago all that would have gone over my head, but not now.

I see you mentioned a spine problem, degenerative spine problems can be down to low or deficient B12 did you know ?

'We are what we eat.' I now believe every symptom or illness is mostly down to what we eat, along with prescription medications with it's many side effects and I won't start on the vaccines causing all sorts, especially to our immune systems.

Make sure next time you go on holiday take a suitcase of supplements ;) I do. :o

Ps. do remember your printout of bloods and ranges if you get any bloods done. :)

PFKAAde profile image
PFKAAde in reply to Coastwalker

Thank you.

Yes. it's the accumulative effect of years of drugs that finally caused me to reassess.

The vaccine one's difficult I have to say. There is no doubt that they work for what they are intended and there is also no doubt that the autism thing is not true. We forget the effects of diseases like smallpox and even measles etc. They can all kill, and I will never hesitate to vaccinate my own children.

That said, some vaccines do seem to have a negative effect for some people. Idk.

Yes I knew about b12 and spine connections. One of the things that has triggered my change of approach. I have DDD and degenerative scoliosis. 'No known cause'. Personally think it can't be a total coincidence after years of RA and NSIADS / PPIs.

The space left by my reduced tablet count is reserved for supplements. 😀

Coastwalker profile image
Coastwalker in reply to PFKAAde

Do look into the vaccines Ade, we are 'programmed' to think exactly the way you spoke about them, (all) vaccines too are another 'wool pulled over our eyes,' which is also networking out, it is not just about the autism, (though our own Grandchild ended up at Hospital the same day as having their vaccine and now has ASD.) I won't go deep into vaccines now, I thought like you do, but when I looked into the history of it all, listened to truthful Doctors themselves about what is actually going on and the whistle blowers from Big pharma who were 'telling all,' I was shocked, most of it I have learnt from Health Unlocked members themselves.

Make sure you have one BIG suitcase Ade ;) :)

Magge profile image
Magge in reply to Coastwalker

I have vitamin be 12 injections every three months

Sandra2468 profile image
Sandra2468

Thanks for this info.

I will most definitely get this checked out.

A big thanks

Sandra

Jacq2009 profile image
Jacq2009

Sandra we have spoken before xx

They hysterectomy should help with pressure I had this done first. My bowel prolapse problems are back after having rectopexy and starr and only few months after having these the back pain started. .. the mesh moves and shrinks. It pulls from the fixing L4/5 ... ask for alternative to plastic . Don't do it . Look on sling the mesh in Facebook. It will lead to several other mesh groups.

Ask where pins are going. Just stitches to help have been mentioned on these sights as been as effective as mesh without the complications of it.

I am looking into removal now not just realising the pins... God knows what I do after to help with my bum lol xxx

Sandra2468 profile image
Sandra2468

Thanks Jacq,

Yes we've made contact X

And also Jen X

The gynaecologist says one thing and the recital surgeon another.

If I have a hysterectomy and anterior repair, have been told by rectal guy the internal rectal prolapse will worsen. I have primarily anal canal pressure which I believe is spinal driven. My bladder is not leaking but low down.

I'm awaiting these proctogram results.

There are newer meshes dissolvable but only 1 year out no outcome reports as yet. My concern is how little follow up there is with mesh surgeries of probably any prolapse surgeries.

I fear my back pain will worsen with back fixings re mesh, and therefore may have to resort to old fashioned ligament surgery which will prob not hold. The mesh surgeries came about due to the failed hysterectomies.

Keeping the womb if possible helps support the other organs. However the weight of these organs can not help the pelvic floor!

I shall ask about the back fixings at next colorectal consultation. All surgeons have slightly different techniques. Even dissolvable mesh have been told can be problanatic

The biological mesh depending on the type may not completely dissolve. These ops are still in development stage.

I don't know who you are seeing for mesh removal but I have a few names if you want to PM me. Both doctors remove mesh. One a colorectal soecialist the other a gynaecologist.

Brave lady.keep me updated.

Sandra x

dianebow1968 profile image
dianebow1968

Well I have synovial cyst l4 l5 & have been incontinence of urine & was checked for caudia equina so yes it's possible as they tested my anal to & said it's a sign that could mean compression slight compression also & regarding the sleeping ect, I'm the same dread going to bed as getting up, brings me to the floor in pain, it's easier to stay awake and try get mobile as often as poss

Hope that helps

Sandra2468 profile image
Sandra2468 in reply to dianebow1968

Diane,

May I ask what test did they do for Claudia equina.?

Was it via s back surgeon?

I have so many unanswered questions like most of us.

Since my so called 'prolapse' began mildly with anal canal pain which I am sure is back driven as this all began at night time!! 2010/11. About 5 years ago.' A pushing sensation in my anal canal whilst lying on my back and a change of bowel habits and some faecal urgency which is worse now. Haemorrhoidsl symptoms no itching no bleeding.

I began seeing a back surgeon before seeing prolapse doctors and I'm now wondering if I could have some slow progression of Claudia equina although my bladder is not leaking its my weak anal sphincter muscles prob from the weight of my low bladder and womb hammering at my pelvic floor.

I suffer now with some feacal incontinence and incomplete evacuation but it's the early morning pain first thing 5 hrs sleep if I'm lucky. Some mornings I fear I will never walk. The L5/S1 facet joint pain so strong and debilitating and tires one for the day. I cannot sit without a feeling of an obstruction in my anal canal. It's like sitting on faeces and irrigation dies not help me.

I believe synovial cysts were found too on CT but were disregarded as a nothing!!!!

I've struggled like must of us but I think less than many on this site.

Could 2 back specialists get this wrong!!!! My MRI 2 years old now.

But I'm thinking Caudia Equina is primarily bladder rekated?

To add to all of this I have some benign tumours adjacent to the sciatic nerve stability shown for 10 years with no sciatic pain down the leg thank g-d. But there is some root involvement near S1. So I need to be careful with prolapse surgeries as no medic can really give me clear answes. Yes mobility is the key get up get on with your day sray strong determined and always remember you are in a better position than others.

I know I'm luckier than most on this site.

Sandra

dianebow1968 profile image
dianebow1968 in reply to Sandra2468

Hi Sandra sorry for late reply, it was a very simple test for caudia equina, as my symptoms were incontinence with either water or stools, & I felt numbNess around my groin, along with pressure like someone had squeezed my facet joints together in a vice, they said they are symptoms & did a needle pick test, using a needle they tested the feelings from my anus down my legs on both sides, if any difference it shows spinal cord or partial spinal cord compression.

I'm having the same with my hospital with attitude, my cyst is compressing my sciatic nerve! & yet they dismiss me I believe as nothing, as when you read the little information on good old Google, it says people can live with them for years with no effect & find they have them on other routine tests,.

Well I certainly know I have mine! I'm also exhausted & in a lot of pain, the medication only takes the edge of it.

They treat me like I'm a tad crazy, as if I don't have any pain, medical books say she dosnt so that's her making it up, I had mri March this year & no other tests since, he said three options, it will go itself, burst or grow into your bone! But spine surgery to risky he said, it wasn't until after my visit I found out he is a registrar & not the one and only spinal surgeon who specialises in such cases, even my pt said my nerves are behaving badly on my right side, as in I mean no reflex on hammer test, she said this is a sign nerve's getting blocked.

Hope that helps a little but I would discuss with a good GP as they may support you with more tests

dianebow1968 profile image
dianebow1968 in reply to dianebow1968

P.'s I dread going to bed also :( terrible pain most nights pottering slowly around a quite house unable to ease it enough to rest.

Currently on sick leave & worked since I was 16 so I feel lost! Are you managing your routines? I'm not at all its taken over my whole life one cyst so much pain, but I believe it's grown due to escalating pain x

PurrrdyGurl profile image
PurrrdyGurl

Hi Sandra :)

Love your Hollyhock flowers! I too, dread going to bed......and getting up! When I first wake up, my pain is at it's worse, which makes getting out of bed and moving around difficult. I think your reasoning is spot on when it comes to the spine interfering with organs and how well they work (or not!). If you already have problems at S1, there is a good chance that the rest of the sacrum is compromised :( Because of my 3 failed back surgeries, I learned more about the spinal cords and the nervous system than I should have LOL According to the Dermatome chart on this site, massagesupplies.com/product..., "S5 and Co1 dermatomes encircle the anus concentrically". I only studied my specific trouble area, which is where they fused me from L4 to S1. I need to dig into the lower S's because I am having issues that correspond to those areas :( So, in short, you are NOT crazy LOL Hang in there....that looks like a major surgery :(

Magge profile image
Magge

I have spinal stenosis I know one of the problems that can happen is you can lose control of your front passage also your back passage but then it's classified as an emergency so you just go straight to hospital

Sandra2468 profile image
Sandra2468

Thanks Maggi,

My fear has always been cauda equina.

Two back surgeons looked at my MRI and told me I did not have compression for this! (2 years ago) However no harm in getting some updated scans.

My anal pain began at night time lying on my back which does not sound like prolapse related pain. (mildly 2010/11. So strong is the pain I thought I had anal cancer.

The sitting pain does sound like prolapse rekated. My symptoms do not entirely add up entirely to prolapse though!

I do not have PN.

I am waiting on proctogram results and finally under a good uro/gynaecologist for opinion NHS will see her end of August. And also seeing 2 colorectal experts for opinion.

There appears to be no right way to deal with prolapse as age, healthy tissue, all cone into play.

For those of us who have had surgery and contemplating it's a minefield out there. The risks are high, and unfortunately we do not get the positives on the net.

It is so important for all of us not to feel alone. A big thank you for all those contributing.

Sandra

Coastwalker profile image
Coastwalker

Found a video for you Sandra2468, I have just seen this recently, do please watch it.

Google:- 'You Tube,' then type in 'Dr John Bergman' Spinal Stenosis Cause and Correction.

This Doctor tells what is really going on with the medical world, scams etc., no costs involved, only there trying to get the truth out. Interesting videos.

Sandra2468 profile image
Sandra2468

Brilliant thanks CW looks like stenosis can be reversed.

If the discs can regenerate, we must try to learn to keep off steroids and drugs.

I am sure easier said than done.

I am a strong believer in swimming and luckily learnt to swim properly when the kids were young . With my anal issues now its about the only thing i can do but still not easy.

Keep moving, my swimming is my medicine, not sure it has helped my pelvic floor though.

But Im sure my bones have benefited from this exercise.

Interesting the photos showing the cervical spine, and reversal of.

Thanks,

Sandra

Sandra2468 profile image
Sandra2468

JUST TO SAY

Diane,

I know this is a long shot.

(relevant to your posting)

You have this cyst which is as you say compressing nerve. As you say sometimes these synovial cysts are regarded as a nothing. May be it is a difficult region to take out as they can return again, and there is no funding within NHS for these problems. Or lets say we may hit lucky if an institution that is willing to listen and do something!

You could try to ask your GP for a second opinion and ask to be referred to a good centre, again you have to research what is the best near you.

I have some unexplained symptoms as my PAIN symptoms do not totally add up to prolapse.

This is a long shot but my coccyx has never been scanned which is the last bone at the end of the spine.

MRIs do not normally scan past lumbosacral area!

Before considering any prolapse surgery I would like that area scanned MRI to exclude any pathology.

If you have low back pain at night time after 4 hrs of sleeping, and horrendous sitting pain, tumours in that area are very very rare and most surgeons do not I stress do not scan the coccyx area.

For anyone else out there who has been suffering with unexplained sitting and lying down problems and has been told it is arthritic etc etc it may be worth MRI scanning of the coccyx area. Also see a GI doctor colorectal for assessment too.

In my case I do have some pelvic tumour pathology adjacent to my sciatic nerve which is again in a very unusual place with some S1-3 nerve involvement. (however stability for over 10 years) hence the research.

I am hoping to have a scan of my coccyx prior to prolapse surgery.

I am still under investigation.

I hope the above info may be useful to other readers of the forum.

Sandra

Barbara9 profile image
Barbara9

Sandra,Jacq

Just found out it's where my lower attachment pro tack to sacrum ,4 cm from coccyx that's causing sooo much pain.maybe not bio mesh.i didn't ask where,did u say s1 L 4/5? wondering about my neuralgia,how that links in with the letters/location.coccyx bad too,horrendous pain so many places.

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