Endometriosis in the spine?

[mvdw]

Hi All, I've been diagnosed with stage 4 endometriosis in May. I had a MRI done in August which showed bowel involvement but also have they noticed that my spine isn't they way it should be. L4 and L5 showed up as being 'abnormal'. The gynaecologist isn't sure if it's endo related or not. I am seeing a spinal surgeon this Monday. Has anybody ever heard of spinal involvement?? All replies would be appreciated. Many thanks!

[foosey]

Sorry I cant answer you question but I would like to wish you luck on Monday. x

[mvdw in reply to foosey]

Thanks for your reply Foosey. Fingers crossed for tomorrow. X

[jojo777]

I've never heard of this, i know only in very rare cases it can affect the lungs, but not the spine.

Anyway best of luck! xx

[mvdw in reply to jojo777]

Thanks Jojo. Fingers crossed for tomorrow indeed.

I can't find a lot of information on spinal endometriosis. But who knows...

I am in sooooo much pain all the time. My back is hurting soooo much. I am on paracetamol, diclofenac, co-codamol and tramadol and still the pain is unbearable. There must be something wrong...

[Hidden in reply to jojo777]

It can affect any part of the body. The only place endo lesions haven't been documented as being found is on/in the spleen.

[Emmashead]

Its possible for Endo to be on the spine in fact its possible for it to grow anywhere in ur body including the outside! Sorry to hear this n I hope its not Endo on the spine! Good luck xx

[mvdw in reply to Emmashead]

Thanks for your reply Emmashead.

I really hope it's not endo. But then on the other hand I don't want it to be anything else which might require surgery. The gynae and bowel surgery sounds scary enough as it is already. Have you heard of women needing a permanent colostomy due to endometriosis? I have been told the chances of me having a temporary colostomy are quite high.

X

[Zolta in reply to Emmashead]

I have read somewhere that in extremely rare cases endo cells have been found in the brain, only found out by investigating the cause of seizures. So I suppose it would be possible to have it on/in the spine too. x

[mvdw in reply to Zolta]

Imagine that... having endo in your brain. Dear me! This is such an awful disease. I knew about endometriosis before I was diagnosed. But I didn't realise it could cause so much pain, distress and that this disease could be so cruel. Let's just hope I don't have spinal endometriosis as my brain isn't too far off then. I have no idea how they diagnose this anyway. Surely they can only be a 100% sure if they take a biopsy??? So many questions...

[Zolta in reply to mvdw]

So so many questions! Endo been found in lungs too as some women reporting coughing up blood during their period, biopsy taken and shown endo cells in their lungs. Cells in parts of the body gone rather wrong somewhere down the line...

[mvdw in reply to Zolta]

It is a horrible disease! I hope the amount of women having to experience endo in all these weird, rare cases is very small!

[mvdw]

Thanks for your reply Emmashead.

I really hope it's not endo. But then on the other hand I don't want it to be anything else which might require surgery. The gynae and bowel surgery sounds scary enough as it is already. Have you heard of women needing a permanent colostomy due to endometriosis? I have been told the chances of me having a temporary colostomy are quite high.

X

[laurakate]

Hi there

I had bowel surgery and temporary colostomy. It wasn't the nicest time but nowhere near as bad as I expected it to be. Have since had the reversal and although it's a slow recovery for my bowel ( surgeon says 1-2 years of gradual progress) things get better every day.

All the best and stay positive!

[mvdw in reply to laurakate]

Hi Laurakate,

Thanks for your reply. Did you have the colostomy for 2 years? Having a colostomy must be so hard? I am so scared about having one. I just can't imagine how I will deal with it nor how my partner will deal with it. Can I ask if they had to remove a lot from your bowel?

[mansaclaire]

I've had endo since I was 16 - I'm now 37 - I've had 27 operations for it and no matter what I do It won't go

2 months ago I went to a neurologist who did and MRI and X-rays - he told me my spine was abnormal - like asnake were his exact words - I have cervical bone spurs and sciolosis - not sure if this is something to do with endo

[mvdw in reply to mansaclaire]

Hi, thanks for your reply.

27 Operations? I am so sorry to hear that. You must be so fed up with all of this? As I said, I've only been recently diagnosed and the more I read up on endometriosis the more I realise what an awful disease this is!! I hope they find what's wrong with your spine.

[uglyduckling]

Oh you poor thing, I hope you get the results you would like.

At the moment I struggle every day with the pain, especially with the pain in my back and I have asked my doctor if there could be Endo there and he said no, I wish they would do more surgery on me but because they think I have adhesions they will not until they know for sure.

If I can give you any advice or you just want to talk do not hesitate to contact me.

[mvdw in reply to uglyduckling]

I really get the feeling that a lot of GPs dont' know what endometriosis is all about. Also, it seems that even gynaecologists have their own way of treating their patients. I've been wondering if I should go for a second opinion and if I would be told the same thing? I really can't deal with the pain like this anymore. It is excruciating and work has become more and more difficult. Are you still able to keep up with your job?

[uglyduckling in reply to mvdw]

I work 5 days a week 08:45 to 17:30 I have just passed my driving test so it is easier for me to get to work, at the moment work is very difficult because I can not really take time off as easier as I would like so I am struggling I want to go to more doctors appointments but it is difficult.

What hours do you work?

[mvdw in reply to uglyduckling]

I work 5 days a week as well, 9 - 5. I just find that I am not able to concentrate as well as I used to and I am stuck in front of a computer most of the time and sitting in the same position is just awful. Gone 11am I want to go home and sleep.

I share an office with others which doesn't make it any easier. I feel like I need to be hiding I am in pain...

How do your manage being at work when you are in an awful lot of pain?

Sorry for all the questions but I just quite nice to be able to talk to others who are suffering due to this disease as well. I've been a member for a number of months but this is the first time I actually speak that openly about it all.

[uglyduckling in reply to mvdw]

I struggle a lot, I sit out the front with two other peole and in the back room there probably is about between 10 and 15 people.

I have to hide I am in pain all the time, because with this disease as there is nothing physical wrong with me a lot of people just think I am making it up with about the amount of pain I am in.

What I normally do is get up of my seat quite a few times and just go to the toilet or get a drink even tho I am not meant to leave my desk.

Where are you based and what tablets are you currently on?

[mvdw in reply to uglyduckling]

I know how you feel. People can't see that physically there is something wrong with you and nor can they see the pain we are in and how daunting, depressing and awful this disease is.

I am office based as well. I am head of education for a hospice and I am spending a lot of time in front of the laptop. Or I am either teaching a group of people... I don't know what to do really. The pain has just been so bad for the last 2 weeks that I feel I am not doing my job properly and to be honest this causes additional stress... Oh boy... what a mess.... I hope your day is going well and I hope the pain isn't too bad for you today. x

[uglyduckling in reply to mvdw]

The pain for me today is quite bad, as I also have period pains (even tho I am not on yet) on top of my every day pain.

Where about in the UK are you based?

[mvdw in reply to uglyduckling]

Oh no I am so sorry to hear that. Do you have the necessary drugs with you?

I live in Blackheath, South East London. Where are you?

[uglyduckling in reply to mvdw]

I live in Surrey so not far from you I am based in Walton On Thames.

I am not on pain killers as they do not work.

How do you cope with the pain?

[mvdw in reply to uglyduckling]

Not far at all. Do you attend a local endometriosis support group?

You aren't taking any drugs?

I am on Paracetamol, Diclofenac, Codeine Phosphate and Tramadol. I take the maximum dose of all of them daily. I am seeing my GP tomorrow as the drugs aren't covering the pain any longer... Maybe I should discontinue all of them and see what happens?

What did you used to take?

[uglyduckling in reply to mvdw]

I use to take Oxynorm, Co-codamal. There are no support groups near me.

[mvdw in reply to uglyduckling]

Oxynorm really?? Wow, that's quite a heavy drug isn't it?

Have you tried them again? I find dealing with this pain and getting on top of it is such a hard task!

I've only just recently joined this online group and I am attending my first Central London Support Group meeting on the 25th of September... Would you like to join a group.

I find being able to talk to people who suffer from this disease really helps me.

[uglyduckling in reply to mvdw]

I would like to join a group but there is not one near me.

I have been off pain killers for a day now and I am in a bit more pain than normal but not by much.

I would love to meet people of this forum

[Emmashead]

For the best results for pain relief is excision surgery if u just have it lasered then it will never go, I'll see if I can find some info on spinal Endo for u xx

[mvdw in reply to Emmashead]

The gynaecologist I saw said the same thing. He said that at this stage laser therapy would not make much difference and that the endo would grow back in no time. He said the only option is to cut it all out.

When I was first told about the bowel involvement he mentioned that there might be an option to shave the bowel rather than removing part of the bowel but I was told at my last consultation that that's no longer an option.

And now the possibility of having it in my spine as well. Please let me know if you can find anything useful on spinal endo.

Fingers crossed for my consultation with the spinal surgeon this evening at 7!

Thanks for your support!

xxx

[Emmashead]

Wat do u want to no? Endo on the spine is rare/not reported very often but is still possible, did u want to no the symptoms? Xx

[mvdw in reply to Emmashead]

Yes symptoms would be good and how they diagnose and treat it?

[mvdw]

Hi All, just a quick email for those of you interested. I saw the spinal surgeon yesterday. He said he had never heard of spinal endometriosis before. He did say I have a hernia (L4 - L5) which isn't endo related. He did say however that the pain I am experiencing is abnormally severe for a hernia of this kind. He did say that my long muscles attached to the spine are inflamed but he wasn't quite sure whether that was related to the hernia or if that could be endo related or who knows anything else??

I am having to go back to hospital this afternoon for an epidural injection in my spine to administer cortisol to help with the pain. If the pain get's better (including the muscle pain) all will probably be related to the hernia. If the pain doesn't get better then the mistery remains unsolved I suppose??

I hope you are all well and many thanks for your support!

xxx

[gemsylou27]

Hi there hope your doing as well as can be. I had a major op in 2008 as I had endometriosis on both ovarys my right ovary was stuck to high up on my pelvic wall and my wall was stuck to my bowel and I had it on my uterus and bladder. I also had it in my anus. I've not heard of it on your spine but I did have it on the ligaments in my back and I think this has returned as ive get awful back pain. I've got an appointment to see my gynaecologist on 5 November it seems such a long time away. I think I've got it in my bowel too as the pain is immense I'm on IBS medication also but sometimes they just don't work. Im also on many other tablets because of all the pain I'm still getting. Good luck xx

[jc001]

Hi. I've heard of endometriosis affecting your sciatic nerve and also the spine. I've suffered sciatica for a few years now, on and off. I'm only just relating it to when I have endo pain - I hadn't spotted the link before. I hope you get sorted soon.

[Melmik13]

Hello I just came upon your question, I have been dealing with the same exact thing. I just had surgery for the stage 4 endo, but the L5 and L6 is so bad I had to quit my job I can't even wake straight. I'm not getting anywhere with my doctors, I was wondering how you are doing and if you did anything or found out the reason. It would help me so much, thank you and hope your feeling good.

Sincerely,

Melmik13