Diagnosed with endo stage 4 an PCOS around 2 yrs now. I have every symptom,now dealing with horrid back pain L5,L6 anyone know connection?

Hello ladies,

I have every symptom you can list on here, my back pain is the worst part sometimes during ovulation I can barely walk. I've lost my job. Every Dr is telling me my back and endo are not connected But I feel in my heart they are, has anyone maybe had spinal surgery n it help? I can't live like this can't stand or sit. I'm on couch most of the days.

All the best...... this community saves me when I feel lost and alone, no one in my life understands.

Thanks so much

Xoxoxoxo

9 Replies

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  • Hiya, I can relate to your post.

    I was diagnosed with Endo in Jan'14 but I have a primary condition called scolisios since birth.(most people with scoliosis that is under control don't live with pain with it) Christmas 2009 I got really bad pain around my abdomen, cut a long story short my doctors told me I had shingles, then they told me it's my back, in 2012 they try to tell me I had ME until I said no there is something still wrong with my tummy.

    Sorry there is a point to my post!

    June '13 I saw a urogoly and had biopsy and it was clear but told I had IC, but still had pain in my groin, so I went back to my spinal team but my consultant had retired so I have a new spinal consultant, he did a MRI and saw some problems around L4/L5. I had a dorsal ganglion block. It worked for me but it does not work for everyone.

    As I was not getting any better with the IC treatment I requested a second opinion

    Then in jan this year I had my first Lap and confirmed stage 4 Endo and quite aggressive form. I started Zoladex injections for six months, however I'm on my third injection but they are not working, I have not stopped bleeding since 17 February. Around the start of March my physio notice that I was walking in a different way. I saw my spinal consultant but as I have not stopped bleeding it hard to work out if my back pain is related to my Endo (as some women do have back pain with there periods) or is it my back. My spinal consultant is reluctant to do anymore procedure on my back until the Endo team decide what they are going to advise next as the Zoladex is not working for me.

    All I would advise is try and get a good spinal consultant that is willing to work with your Endo team. It has taken me a very long time to get my spinal team and Endo team to work together. It does not help that the spinal team are over 100miles away from the Endo team.

    If you want to PM me I may be able to give you some more advise.

    Losing your Job is not good, you poor thing. Again I can relate to that as well I been on a phased return to work since Nov '13 and have not been able to increase my hours any further than 12hrs per week. But I feel vulnerable as my manager has employed someone to do my job permanently (I work in HR).

    I hope my story helps in some little way during this time of pain.

  • I've had back pain for years, sciatica then a slipped disk L4, L5 area but always put it down to my job, I wasn't diagnosed with endo until 3.5 years ago I have no idea if it is endo related I doubt my doctors would even investigate! Surgeons rarely operate on backs as it's a very delicate area they only do it if they have too. Maybe you could get a referral? Have you tried physiotherapy?

  • Hi

    I am exactly the same as you and my consultant has said the same to me.

    Fortunately after 6 months of barely being able to walk for part of the month and living off pain killers, my GP has listened to me and has got my consultant to do 6 months Zoladex trial (I started this on the 17th April) to stop ovulation. If this gets rid of my back pain my GP will tell the consultant that I need hysterectomy to finally get rid of my pain hopefully forever. I can put up with the side effects of Zoladex for 6 months if it shows my consultant that my back pain in relating to my Endo. However, if I still get the back pain I am being referred to Physio and will go down that path.

    I have so much treatment and drugs over the past 5 years I have had enough. My consultant has refused a hysterectomy due to me age (43) and told me to carry on until I am 47 and then he will see .......

    Hope your GP will try to help you as mine has.

  • Hiya,jus had 2 reply 2 ur post.....if I wer you I wud press harder for a hysterectomy or ask ur consultant 2 refer u to sumone else......d one ting Ive noticed bout having endo is d psychological effect it has on u aswell as physical....I had a hysterectomy 6yrs ago aged 34 after changing consultant and d relief was amazing....I still suffer wit endo bt not 2 d extent I suffered b4 d hysterectomy...Hope u feel better soon xx

  • Hiya,can defo relate 2 ur post....hav been suffering from endo over 20yrs now n hav had loads of procedures n ops coz of it...d specialist im now attending has confirmed 2 me dat my back pain(god its excrutiateing)n my sciatica are defo due to endo n he recommended massage,bathe in epsom salts,etc....I hav 2 say I genuinely didnt tink massage wud work bt gave it a shot as hav tried everytin else.....my hubby gives me a long massage on d lower back,hips n straight down 2 my feet every second night n hav noticed a huge difference....wen I hav a reali bad day I use d back wraps(deep heat brand)and dey giv me amazing relief,not d heat patch bt d one for lower back dat wraps around 2 ur tummy,will also b attending physio soon....I am at a stage now dat I've had 2 use 2 crutches if I dare go out anywer bt am now down 2 using jus one...its so so hard 4 anyone 2 understand endo as dey cant see it so u feel very alone and completely at ur wits end.....if u ever wan 2 talk or hav a question(no matter how trivial)ur more dan welcum 2 pm me....hope u feel better soon xx

  • Hi I don't know if back pain is related to endo or not for definite but I have severe endo and also get back pain. Sometimes my back pain is much worse in the week coming up to a period though . I see a chiropracter every week at the moment and I have gained an awful lot of pain relief, feel much more mobile and supple . If it is an option for you I would recommend a chiropracter.

  • Thank you so much for the great replies, it gives me comfort to know there are some paths I can take. Now I don't feel so crazy about the connection I just need a good Dr now :/. I'm turning 34 this year so I don't want to think about a hysterectomy but if it will help me live my day to day life, I've gotta start telling these drs to start to listen .. Thank so much for the great info :)

  • I also find myself getting quite horrific lower back pain. May i ask about these 'stages'of endo everyone talks about? I've never been told im a stage anything. Is this something i should be investigating?

  • Hi as for the stages it really how bad the endo is, like if it just started to spread, or like me I suffered for 7 years until my Gyno did a Lap, and everything was attached to my uterus and my ovaries were stuck onto my fal tubes :/....... And I still have more I was under for 5 hours :/. Anyway yes the stages 1 is more light to 4 which is drastic and attacking everywhere. Hope that helps ;)

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