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Adenomyosis Advice Association
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Excruciating lower back pain

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 🤗

3 Replies
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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.

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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

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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

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