Hi do,s any one have endometriosis on the... - Endometriosis UK

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Hi do,s any one have endometriosis on the. Spine

Franco12345 profile image
11 Replies

Hi I have endometriosis on my bowel bladder lungs kidneys and now it has gone onto my spine the pain is so bad

Do,s any one have endometriosis were I have it and if so what are you. Taking for pain

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Franco12345 profile image
Franco12345
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11 Replies
Impatient profile image
Impatient

I have just used the 'search' button on this forum and cannot find anyone else that has had endo in the spine confirmed and treated. The one suspected case turned out not to be endo.

whereabouts on your spinal column is the endo? Is it a progression of growth from a lesion attached to adjacent tissue or a separate patch of endo isolated on or in the spine?

Franco12345 profile image
Franco12345

Hi it's a isolated on the spine at te bottom pain shoots up been awake all night with pain

missteal profile image
missteal

wow, how did this get diagnosed? Can they see your spine in a lap?x

Impatient profile image
Impatient

If it was diagnosed, then chances are it was removed in surgery, I suspect it has just been biopsied at this point if she has been told it is definitely endo and still has it. Endo certainly is a possibility but it could be any number of other conditions causing a growth next to the tail.

The odds are if it is endo, that it migrated from the POD around the bowel and through to the spinal area, rather than actually growing on the spine, it is growing too the spine having spread in that direction.

It would be something that needed a laparotomy surgery rather than a lap op. A very tricky area to access with a lap op, even just accessing the POD isn't straight forward, without having to get past the bowel too.

Is the pain constant or just when your endo is active with a period bleed or ovulation ?

There are many ladies reporting pain in the POd/bowels area and sciatica type pains in the back and legs too. Before surgery to remove the growth, I would imagine it is just all about pain management and having adequate pain relief.

What has your specialist advised you to take so far and how long have they said till you can have surgery on it? Or are you still waiting for further scans and tests etc?

Franco12345 profile image
Franco12345 in reply to Impatient

I do not have Periods As I have had a hysterectomy I have been told by three different hospitals that they cannot do anything for me as the endometriosis Has spread to Most of my Organs There are two sorts of endo All we hear about is about women having babies bleeding heavy etc There is another side to it and yes you can die from this If it gets onto the organs I have it on my lungs and kidneys and I am on nebulizer as with the endo growing on my lungs kidneys etc its rad to breath

It would e good to bring this other side of endo to the front as not a lot of people have it the way I do and it's very rare this way

Franco12345 profile image
Franco12345

I had a bone X-ray done its called a DAX Scan With having endometriosis On my spine lungs kidneys bladder I Am in pain 24 hours a day and do not sleep with the pain that I have I also split up blood There are two sides to Endometriosis But nobody ever talks about this side of it and it does need to be spoke about

Amb43 profile image
Amb43

Hi and so sorry you are in so much pain..x Hope you don't mind me asking, but how was your Endo on spine diagnosed please? And what was/is your pain like? Are you on any medication?

I have had lower back pain 6 months now, mainly middle area just above the coccyx, which is like the ache of labour, and it is still being dismissed as part of my Endo I have on uterosacral ligaments. Anything you feel able to share would be so much appreciated. Hope you are feeling at least a little better today, if not loads better. Sending hugs xx

Franco12345 profile image
Franco12345 in reply to Amb43

Hi I am on tylex and morphine tablet and morphine solution and a few more pain killers

I had a D A X scan done and I also have a friend who is a doctor and he done tests etc which I paid for

The pain in my spine is half way up its so painful when I bed that makes it worse every ones pain is different I even have endo on my lungs kidneys bowel bladder

I did have a friend who died from endo she had it on her lungs kidneys and she ad it on her brain which she died of they need to tell women about this other side it is very rare but it needs to be talked about

Amb43 profile image
Amb43

Thank you so much for sharing this info with us, so so sorry you are suffering terribly with such extensive Endo and the constant pain unabling you to sleep. Sending much love xxx

Franco12345 profile image
Franco12345 in reply to Amb43

Thank you so much for your kind words

Xxxxx

nikita_60 profile image
nikita_60

hi, sorry 2 hear that i know ur post was a while ago but im new to this, i had emergangcy surgery 2012 they found me riddled with endometriosis after having a rupturered cyst on my ovary. then laparoscopy in 2012 again then again in 2013 twice, theyve tried allsorts this started at aged 21 was told i couldnt concieve, its on my bowel bladder it ruined my ovary and tube on one side so its had to be removed. ive been on morphine and gabapentin four years and last week was told its grown into my muscles and up my spine. there idea is more meds.

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