Excruciating lower back pain

[ajb1969]

Hi all xx🤗

Does anyone suffer with excruciating lower back pain due to adenomyosis?

I have seen a registrar, who thinks that my pain in my lower back, is not linked to adenomyosis but she was unsure.

I have had an MRI scan which showed degenerative disc disease in two discs and also a bulging disc but the physio I was seeing at that time discharged me, stating I should not be in such agonising pain, with just that condition, so I haven't been taken seriously, I feel, by the pain clinic guy that I'm seeing, he just keeps talking about the neurological side of pain and this is my 6th appointment.

I really want some more pain relief but I'm not getting anywhere. I have to beg for naproxen, the doctors don't like giving me this, on top of the butrans buprenorphine patches 30 mg, I'm using presently, this does help the excruciating pain, in the lower back, but I'm still unable to walk properly, this is my fourth year.

I am struggling to get anyone to listen to me I'm awaiting a third rheumatologist appointment and it is heart rendering, to be sent away and discharged, without any real help or true diagnosis, my doctors believe I have fibromyalgia but the rheumatologist I last saw, does not believe in this, hence the reason why I'm needing another visit, for proof.

I have fibromyalgia, osteoarthritis and as already mentioned, I have adenomyosis, which is similar to endometriosis. I just want to know if anyone's in as much pain as I am and unable to walk properly. I have an uneven Gait.

Any advice would be a great help, as I'm getting quite frustrated, when having to deal with professionals.

Ta 🤗

[Hidden]

Hi,

You are having a horrendous time I'm so sorry.

Can you see my posts over the last few days. I have had a hysterectomy on Tuesday for Adenomyosis causing chronic back pain, chronic fatigue, anxiety, muscle and joint pains, shooting pains in ovaries, shooting cramps, spasms, fall to the floor lightning bolt pain, painful urination, painful bowel movements especially in menses.....heavy bleeding during menses, clotts, nausea, brain fog...

I could go on. The weighty womb had me with 3 bulging discs. I was bed ridden since Jan 2018. Finally got Maxitram in February but 3 weeks on that was not dulling the pain.

The PAIN THIS CONDITION CAUSES AND THE TIREDNESS IS HORRENDOUS.....

I could hardly rouse myself to look after my 3 year old son.

I was 9 months into the NHS waiting list but financed a loan and went private on the knowledge I had a potential 18 months still to wait...

I hope you get a little empathy from me as a fellow sufferer, my hysterectomy has VINDICATED me, I WAS RIGHT...it wasn't all 'Just bad periods.

In addition to the "spent" womb that they were very relieved to take from me (was night, full of adenomyoma lesions) bulked out and large...I WAS PLASTERED IN ENDOMETRIOSIS....

MY bowel had to be scraped free of endometrial glands and lesions, my surgeon as he finished up and I awoke said it was "shocking" the state I was in. My MRI last March had not shown up my endometriosis. I was treated for mild endo in 2012 whilst having a laparoscopy and cyst removal off right ovary.

My ovary was plastered in endo and bowel was pinned down to my pelvic wall. My bowel has been shaved off of it as much as he could, he said I couldn't get every last cell and I said to him 'and why not' 😉..he said of course risk of puncturing bowel 😯!!!! - I was just jesting him a bit as I pretended to tick him off for missing any cells.

It's the one that can grow back regardless of hysterectomy, I was sad that he found this but relieved that he was "Mr Endometriosis " finding endometriosis....he was the best man to get it off of me!!!! I just have to stay positive...IM HEALING now..internally...ling road to fitness and a full life but hoping and praying.

For you..MRI is not faultless in detecting endometriosis in addition to your Adeno, could you go for a diagnostic laparoscopic investigation? The keyhole scars are miniscule and it will give a true reflection of "what's going on inside you".

Good luck.

See if you can read my recent posts.

Kathryn.

[Tiblong]

Hello ajb 1969 ,

Im also suffering of back pain in almost 5 years and now im still suffering ..what is the medicine or medications that the doctors required you

[Lallya]

Hi I'm so sorry you are suffering so much. I had ademyosis and in july last year underwent a full hysterectomy at the age 37. I has severe back bad like contractions or bad period pains. My symptoms have now gone. I suppose it all depends on how tolerant your pain levels are.

My husband has degenerative disc disease and spinal stenosis. He has just had a discectomy to free up the trapped nerves which are causing him severe sciatica.

Maybe you need to ask for a second opinion on your mri results.

Where abouts in the uk are you?

How was you diagnosed with fibro as all my husbands symptoms point to that but the ruled it out straight away.

He asked for a 2nd opinion as first consultant said there was nothing they could do 2nd and 3rd both offered surgery. Looks like some consultants are either inexperienced or dont like to perform surgery. At the end of this its your life and the one suffering so much.

I really hope you get to the bottom of this and you start to feel pain free.

Abbey

[Lav2]

Hi..hope u r doing fine now.

I can relate to every word.....I am going through exactly the same problem. If u have found any solution, plz share it.

[ajb1969 in reply to Lav2]

Hi

I'm sorry to hear of your suffering too.

I've, since writing this, been taken off my buprenorphine patches, summer 2018,

They'd stopped working because I'd been on them for over 2 years, and my ill health deteriorated.

I'm now taking 20 mg of zomorph morphine a day, which I'm so glad to say, is helping, with the pain. And also I'm taking 20 mg of nortriptyline, every evening, to help with the pain and help me sleep, I also take naproxen as and when I need it. I can only take naproxen for 2 weeks at a time, so only take it if the pain becomes unbearable.

I've also seen another rheumatologist who stated that I do not have fibromyalgia, in her opinion and I have chronic pain.

I'm still getting nowhere with the pain clinic, just last week I started to see a physio, it's the same pain clinic but different area, as I asked my if they could refer me to someone else, who could actually help me, perhaps with some physical therapy, however, this physio person said all she could do was give me information and exercises to do. I wasn't sure what to say at the time but surely they can do more, I have no idea what they can help me with, and so had no idea, what to say to her.

Last November, I did see a chiropractor,

I was at the end of my tether.

I went private. And it has helped me.

The chiropractor used biofreeze gel,

(I hadn't used cold therapy before, because of a cold intolerance. I have an underactive thyroid but my levels are okay at present, so I could tolerate the cold.

He tried acupuncture, using two needles and also a electric massager on my back, each session was about 20 minutes.

I had about 7 sessions, but I became poorly with laryngitis so haven't returned, plus it's too expensive.

I was able to walk for roughly 20 minutes or so but the pain would always return, after the biofreeze wore off.

I bought myself a cold compress, and biofreeze gel and a biofreeze roller.

I put the compress in the freezer for two hours and use that twice a day.

Also, he advised me to do different sets of exercises, twice a day, they are very easy exercises.

My lower back pain has not been the same since, it's not pounding anymore, and the pain seems to have moved, and spread over my back, it's more like a heavy achy pain now, sorry, I find it really hard to explain. but I don't seem to have the one particular spot won't was always hounding and that was agonizing that seems to have gone, thank God!!

But I'm still very fearful of it returning.

I seem to be totally exhausted when I try to walk or try to push myself to walk further, or do anything for that matter

but the back pain is not as bad, as long as I keep using the biofreeze all the time, especially if I want to go outside. I try to have a little walk. I just can't push myself anymore and I can't walk very far, perhaps 10 minutes at the most, I'm just totally exhausted and then. Not been able to even lift my feet off the ground I'm so fatigued.

Furthermore, I'm also in the process of waiting for another blood test, due in August, as I have had very high antibodies for hashimoto's and also antiphospholipid syndrome. They only retest blood after 3 months to confirm.

So sorry for waffling on.

I really struggle to write and I use the Google speech to text thing. I just waffle on.

I'm always so poorly and tired all the time.

I do hope this has helped a little bit and just knowing that you're not alone, might help, in a small way, it helped me by you, and others responding, so thank you X

Amanda XxxX 🤗 it's XxxX

[lindanyc]

**You Need to Request a Specific Type of MRI**

Hi, I suffered horrible lower back, hip and pelvic pain for nearly 4 years before I got a correct diagnosis. My first symptoms were lower back and left hip pain, which over a period of a year developed into overall pelvic pain, which worsened during my period. Early on I was sent for MRIs and x-rays of my lower back and hip. I was also told that I had bulging discs, and that these were the cause of my pain. I did not present with classic sciatica symptoms (pain in glutes, down the leg, numbness in feet). I went through 2 intense rounds of physical therapy which did almost nothing to alleviate the pain. During this time, I was told to lose weight, and things would ease up. Well, nothing ever did ease up. It wasn't until I really kept a meticulous log of when and where I experienced pain that I began to see a pattern. I would be nearly pain free for about 10-14 days/month, and then the excruciating pain would start a day or two before my period began and last about 2 weeks. This pattern would make no sense if it were bulging discs.

I began researching my symptoms and their pattern. After finding information regarding endometriosis, I read a book on the subject by a leading endo surgeon in the US. It was then that I first heard of adenomyosis, and the more description the doctor gave, I realized that is what I had. I was especially struck by the fact that adenomyosis primarily strikes women over the age of 40, and that many, like me, had no prior symptoms of endometriosis. This made sense, because prior to the age of 41, I had no abnormal periods, or debilitating pain. I immediately went to my doctor and asked her for a referral to an endo/adeno specialist. Luckily, there are some in my area. I made the appointment, and the gyn agreed with my assessment. He then sent me for a very specific sort of MRI, which is a soft tissue MRI of the reproductive organs. This involves inserting a gel into the vagina, and remaining in the MRI machine for a good 40 minutes or so. The results, along with a trans-vaginal ultrasound, confirmed the diagnosis. I had a hysterectomy about 4 months after the diagnostic testing, and a few months trying some non-estrogen birth control, which didn't work. My uterus, fallopian tubes, and cervix were removed. My ovaries were fine, so they were left in place. I had no signs of endometriosis. Adenomyosis of the uterus was confirmed when the tissue was biopsied in the lab post-surgery. That is the only time they can "officially" diagnose adenomyosis. My uterus was huge, about the size of a 15 week pregnancy. It had been pushing on my back. No wonder I was in such horrific pain. Years of rolling around on the floor in agony, sleepless nights, vomiting, living on over the counter pain medications, wondering if the rest of my life was going to be torture, and how long I could endure it.

Since my hysterectomy, I have not experienced one day of pain. Sure, it took some weeks to heal from the surgery, but I am so glad I listened to myself, did my research, and found the right doctor. Please make sure you get the correct type of MRI, they are not all the same. MRIs done for "back pain" usually only scan the bones, and ignore all of the soft tissue, where the real problem is. In addition to this, keep a log, and I mean daily/hourly recording of when you have pain symptoms. I brought it to my doctor's appointment and showed him the pattern of pain and why I thought I had adenomyosis or endometriosis, and not bulging discs. When it comes to our health, we really have to be our own advocates!

[ajb1969 in reply to lindanyc]

Hi

Thanks for your message and I apologise for the late response.

I wanted to wait and see if my hip pain returned before responding.

And yes I'm the same as you. I started with hip pain months ago, so I've been doing my diary, just to see if it's similar to you and it is.

I've never been able to connect my period to the adenomyosis pain before but now I'm doing a diary, the pain seems to come around my period date, even though I don't actually have a period anymore, since taking the mini pill. So I only have my diary to go by. But I am getting shocking horrible excruciating hip pain now, in my left hip, it was every couple of weeks but II'm getting it on a weekly basis now. Also pelvic pain too.

I've asked my doctor's, several times if I could have have a referral to see an adenomyosis/endo specialist and they keep ignoring me. I dare not go back to the doctor's now, for fear of screaming at them, because I'm so depressed and low in my mood.

I'm actually sat here with a cold compress, hot water bottle, painkillers and my left hip is killing me, since then pm last night and it's 5pm the next day now.

I'm still in pain, and my naproxen hasn't helped. I just do not know what to say to the doctor's to get them to help me.

Thanks

Amanda xx

[lindanyc]

Horrific back pain is typical and I experienced it for almost 4 years before I got the right diagnosis. In fact, my first symptoms were lower back and left hip pain. I didn’t experience front pelvic pain for several months after back pain began.

Based on your post, it sounds like you had an MRI for your bony structure. That’s what I got after complaining of back pain. That resulted in a misdiagnosis of bulging discs, which were not my problem. I went through physiotherapy for 3 years due to that misdiagnosis. The physiotherapy never helped.

The gynecological surgeon I finally went to explained that bony MRI is the WRONG type of MRI. You need an MRI of the soft tissue of your reproductive organs. Once I had the correct MRI, a mass could clearly be seen in my uterus, fairly certain it was adenomyosis, and I was able to schedule my hysterectomy.

[ajb1969 in reply to lindanyc]

Hi

Thank you for your message.

I'm glad to hear that you finally received a diagnosis, I know how extremely frustrating it can be.

I'm sorry to hear you had to suffer for such a long time. Have you now managed to rectify your situation and are you now pain free.

my doctors are already aware that I have adenomyosis, I was diagnosed with this in 2018 or rather another doctor stated it's suspected adenomyosis.

I have already asked if I could have a second MRI but I've just been ignored again the gynecologist that I was seen by stated that there was nothing they could do to help me and discharged me back to my doctors. They stated the reason as, I didn't have heavy bleeding anymore, due to the mini-pill helping me. I did state that I was in a lot of pain I was absolutely in agony and I couldn't walk properly due to pain and they could see, that I could hardly walk, when trying to walk into the Dr's room.

I have an appointment tomorrow, to see another pain management team, at a local hospital.

I'm hoping that they will take note of what I say to them, this time, and either offer me some steroid injections, to help with my mobility, to help me walk without too much pain, fingers crossed, that they actually listen to me, but I will ask them for another MRI yet again.

Amanda x

[lindanyc]

Hi,

I had a hysterectomy in August 2018, but was able to keep my ovaries. The uterus, cervix and fallopian tubes were removed. The hysterectomy eliminated the pain completely. In fact, the soreness from recovering from laparoscopic (keyhole) surgery seemed like a minor inconvenience, compared to what I had been experiencing from the adenomyosis.

[ajb1969 in reply to lindanyc]

I bet it must have been such a huge relief for you, having a hysterectomy, which I assume is an extremely scary and painful experience in itself, to rid you of your pain?

I don't know and the doctors are unsure what is actually causing my pain, in my lower back.

I saw the pain management team, at my local hospital, a couple of days ago.

I'm having some facet joint,medial branch blocks, to help the treatment for my pain, in my lower back and if that's successful, they will perform a facet joint radio frequency denervation, (ablation in the nerves in my back).

I was so emotional and in so much pain on that day, I forgot to ask them when this was going to happen, so, I'm just waiting for this to go ahead.

I just keep praying and have my fingers crossed, that it helps with the pain and my mobility.

It must be really nice for you, to have some normality back in your life again?

My life has been turned upside down. I haven't had a life, as such, and I lost my job 6 years ago, it will be so nice to have some sort of normality and mobility back again.

I keep praying

Amanda

[abellemed]

Hi Amanda - I'm in the same position as you, I've been seen by a back surgeon, diagnosed with severe spinal stenosis etc, had 4 facet joint injections which worked for 3 weeks, then he referred me to Pain Management (all NHS), am now on waiting list for medial nerve branch blocks which will tell them exactly which ones need radiofrequency ablation (rhizotomies).

Well, that was back in September and I'm having a horrible winter being unable to walk 50yds to the shop, can't do much in garden, need to find a loo immediately when I need a wee or risk an accident as I don't seem to be able to "hold on" any more. Intense pain in buttocks and outside of thighs even when "furniture-walking" around the house, also now getting strong pins&needles in both legs when I get up from sitting (which I'm now doing a lot). I'm taking 2 paracetamol 500mg and 2 dihydrocodeine 30mg three times a day but doesn't really dull the pain much, and has made me lose my appetite so I have to force myself to eat.

I'm at my wits end coping with all this pain, makes me tired, as I am used to being very active and have no other medical probs. I'm only 74, slim and used to be fit. I can't afford to go private so just have to wait and wait.....

Hope you get your treatment soon, please post so we know you haven't been "lost"! Best wishes, Eileen x

[ajb1969 in reply to abellemed]

Hi

Thank you so much for your reply.

So sorry to hear that you're in so much pain, you don't seem to be on very strong painkillers, or am I wrong.

Have you received just the one set of facet joint pain injections? And do you know how long you'll be waiting for the medial blocks?

I just received a letter from the doctor, whom I saw at the pain clinic a few weeks ago. The Dr stated I have mechanical back pain.

The Dr didn't mention this to me at the appointment. I just don't seem to understand or appreciate it when they say that it's mechanical

back pain. Saying that to me, makes me feel like I've been lazy or that my symptoms of pain isn't real.

I've done all the set exercises via physio, and my own exercises and I've even seen a chiropractor, and done his set of exercises, yet my pain never ceases.

The only time I seem to be pain free, is when I do absolutely nothing, the absolute least I can do, and thats a lot of sitting around, watching TV and reading . I've been like this for 6 years, it's so frustrating. So I really do feel your pain.

I don't know how they say it can just be mechanical back pain.

if it's mechanical back pain then surely I should have been better, within a few months, not still in agony 6 years later, it's very confusing to me.

I don't even want to go out of the house, because I don't want to feel the pain anymore, but doing this starts to affect my mental health.

I'm going to have to really push myself to go outside.

I'm sorry I needed to get that off my chest, so sorry for waffling

I do hope you're having a better day today.

Amanda x

[abellemed in reply to ajb1969]

Hi Amanda - You Have Not Been Waffling! I'm glad you have put it down in your post and agree with all your comments.

I've only been offered just the one facet joint set of 4 injections, (all done at once at Leicester Royal Infirmary back in May 2019) which lasted about 3 weeks. Nothing since then.

Only on the painkillers prescribed by my GPs, the ones I mentioned, 3 times a day but occasionally if really bad I take an extra dose (?). Should be on stronger ones but getting an appointment in my GP surgery takes forever and they would probably say since I'm under the Pain Management clinic now they won't prescribe anything else. The pain consultant I saw early in October referred me for medial nerve injections (no mention of stronger painkillers) but I haven't heard when, just checked I'm on the waiting list, but I still havent even received the now regulatory patient copy of that consultation letter to referring GP or back surgeon either! (That's the NHS for you. I work in exactly that area, I'm a medical secretary, well I was but now we are all demoted to audio-typists on same pay as our dear office cleaners, despite all our qualifications.and experience.... I know how delayed the letter typing can get as they cannot recruit people who can do our job for such low pay, so everyone still there is under pressure.

I work in a small local hospital which hosts visiting consultants of all specialties to hold clinics there so we type anything from tums, bums, bladders, gynae, skins, bones, kids, geriatrics etc. We have to know all the medical terminology, drugs, spell it all correctly etc and we now turn around the clinic letters they dictate within 7 days - but we are exceptional and do typing for the other hospitals in Leics when they get behind. I know from emailing the Pain Management "manager" at the Leicester General last week that they are way behind but nothing can be done. )

Sorry for what seems to have been a rant, but even working in NHS we get absolutely No special treatment/favours, just like any member of the public and proud of it.

To get back to your post, I was told by yet another assorted GP in the practice that I had, yes, "mechanical back pain" - well I persevered and got the referral to the spinal specialist surgeon, a Mr Braybrooke, last year who ordered an MRI for me. Well, that clinched it, it diagnosed severe spinal stenosis at L3/L4/L5 with disc collapse, nerve entrapment and all the lot. Hence him referring me to pain management as it hadn't quite got down to my feet so he couldn't operate yet.

Typical of local GPs, they fob you off. You should persevere with asking for an MRI which can only be procured by a musculoskeletal specialist or orthopaedic consultant. Physio does absolutely nothing in our case.

I've just seen your reply to lindanyc - so disregard some of my rant - you obviously did persevere as far as getting referred for medial branch nerve ablations etc, so well done and I hope it goes well.

I do hope you get your medial nerve ablations soon - your local hospitals seem to move a bit quicker than ours here! Did your GP arrange your facet joint injections? How did you manage to get the pain management referral ?

[ajb1969 in reply to abellemed]

Hi again,

Apologies, I forgot to ask you ... I hope you don't mind ...

... how did you manage to see a back specialist, did you have to go private for this or was it through the NHS?

I kept asking my doctor's to see a back specialist and they kept refusing me.

Amanda x

[abellemed in reply to ajb1969]

Hi Amanda - I only saw this after I'd replied to your earlier one.

No, never go private (they do really difficult heart ops for which they rent an NHS theatre/staff as the private ones aren't good enough, I know because I was med sec to a cardiac surgeon for 2 yrs).

As I said, I persevered with the various GPs I saw for many months/years and finally got a decent one (female) who referred me to Zsuzsa Kamuti, an MSK specialist who holds clinics here in Hinckley. She was the one who referred me on to the back surgeon, Mr Braybrooke, and it was he who got me the MRI which finally proved my GP surgery to look a bit silly calling my complaint "mechanical back pain". (Know what you mean about making you think you're lazy etc, it is all done to get you out of their door.)

BTW, can you let me know which painkillers you are on for your back? I don't want to become dependent on the dihydrocodeine and if there is something else I could try I will.

Anyway, become a "frequent flier"at your GPs, keep banging on about the restricted quality of your life nowadays, but never mention any "depression" or "mental" things, as they'll put you down as having an imaginary illness or "Chronic Fatigue Syndrome" ie myalgic encephalomyelitis, or "fibromyalgia" etc. Make sure you stress just as a very rational staid person would, being practical but frustrated/stoic in the face of your pain which prevents you being the person you were.

Good luck and keep in touch,

Best wishes,

Eileen xxx

[ajb1969 in reply to ajb1969]

Hi

Thank you so much for your reply it's great to hear your experiences, even though it's not the nicest of experiences.

I think it's a very demanding job being a medical secretary. I worked in an office, most of my life but I really disliked audio typing, when I tried. I couldn't push myself to continue, I've no patience whatsoever

I use to take minutes, that was my main admin role. I had to stop, due to osteoarthritis in my dominant hand. I Haven't worked since all my pain started in 2014. I lost my long-term job due to too many sick days. And then lost my second job, three months later due to a relapse in ill health.

I asked my Dr to refer me to another pain clinic, as the one I was seeing, weren't helping me, however the doctors referred me to the same one, but nearer my home and a different person, by the time I saw this new person, I'd completely lost the plot.

I was in so much pain, it was agony. I think I came across as a complete looney bin, as I was raving on and on.

Obviously it worked, as she listened to me and referred me to the pain clinic at my local hospital. I received a copy of the referral letter, and she had ticked a box stating spinal stenosis, this last Dr never even mention spinal stenosis to me and I forgot to mention it too. I've tried to contact the previous pain clinic about this but they haven't bothered to phone me back.

I'm just going to see what happens when I receive these injections.

My last appointment, at the new pain clinic, a few weeks ago, they didn't do any physical checks, they had already decided that they were going to offer me the facet pain injections.

I'm due to have these injections on the 28th of February, if successful, that's when they will offer me the ablation.

I saw privately, a chiropractor, a year ago and he was shocked that I had never been offered injections previously.

Unfortunately, the chiropractors help was only short-term, by using cold therapy. It didn't take my pain away completely, it eased the pain a little bit allowing me to walk a little further but not very far, perhaps 10 to 15 minutes at the most, but that did feel fantastic.

I couldn't complete the therapy or rather the last two sessions because PIP stopped my payments. However, they reinstated them months later but I haven't returned to the chiropractor.

It's just too expensive for such little pain relief.

My primary doctor's told me years ago I had fibromyalgia.

Andy the first rheumatologist I saw diagnosed me with osteoarthritis. Over the years, I've asked for further referrals, to rule out rheumatoid arthritis, and apparently I definitely don't have this, and I don't have fibromyalgia.

I had an MRI done too. I can't quite remember when it was now, perhaps three years ago but my MRI stated, no nerve impingement or any nerve compression.

I have disc degeneration, a bulging disc and facet joint degeneration and very mild scoliosis.

I saw a rheumatologist a year ago, who stated I don't have, in her opinion, fibromyalgia and I have chronic pain syndrome, and mild hyper mobility.

And ... I saw another rheumatologist a couple of months ago, But this last rheumatologist was checking me for antiphospholipid syndrome which I don't have, thank goodness, I'm at risk as I carry the antibodies, so I'm taking aspirin but he did state, I was pretty flexible in my lumbar region and he also said I've got mechanical back pain.

I'm waiting to see an endocrinologist with regards to my thyroid, as I'm really struggling with this and I've just started seeing a physiotherapist again.

I'm hoping that these injections will work and then maybe I'll be on the mend if It's just mechanical back pain.

Amanda x