Back pain

[Torapuck]

Hi, I found out on Nov that I have stage 4 endo,

My main issue is my back is always in pain ... mainly morning and night ... I wake several times with back pain... I know all my internal organs are infect. Any advice would be great full

[Starry]

Hugs I had stage 4 and lots of back pain. Are you being treated by a bsge centre? They are the place you need to be seen if it's severe deep endo.

[Torapuck in reply to Starry]

Thank you for your reply... too say I’ve got stage 4 I’m new too endo.. what’s a bsge centre? I went in for a lap for a cyst removal and that when I was diagnosed .. tubes, ovary , uvterus , bowel all one big mess 😞 been advised total hysterectomy at 32 need too go back and see my gyno after new year and talk about it more

[Ugne in reply to Torapuck]

Hi Torapuck,

Sorry to hear about your back pain- I’ve had it too. Gentle yoga stretches really helped me.

Regarding BSGE centres- they’re accredited endometriosis centres. You can find the list of them here: bsge.org.uk/centre/

Hope this helps, take care x

Ugne

[Torapuck in reply to Ugne]

Thank you for your reply, I googled it and I am Lucky there is a hospital with in 10 miles from me... but not the hospital I’m currently under ... any ask for a referral

[Starry in reply to Torapuck]

Hi Torapuck.

Sounds like you definitely need to be referred onward by your current gynae in line with the NHS treatment pathway and contract. BSGE centres have accredited specialist Endo surgeons with more advanced lap excision skills and operate in multi disciplinary teams when multiple organs are involved as in your case.

Either your GP or your gynae can do this next referral. Here is the document to provide them and to help you understand the system and bsge service you need.

google.co.uk/url?sa=t&sourc...

I was originally told in general gynae I needed a hysterectomy but after being seen in a BSGE centre I had other options identified and managed to avoid it, though I only had it on my vagina, bowel, bladder and ligaments, not my uterus.

Good luck. X

[Kaiser_susie]

I too have stage 4 and awful back pain! I have tried medication but it doesn't do anything for me. A hot water bottle can sometimes take the edge off.

I too would be interested to know what other people do to help with their back pain.

Good luck

[AJJ123]

Try acupuncture if your able. It’s amazing for pain relief, I was in such a state last month. I’m in a much better place now with it all and pain is barely noticeable, it’s nice to be in a relaxing environment with someone concentrating on the areas which affect your physical and emotional wellbeing rather than going to a doctor and being prescribed more meds xx it worked for me anyway

[sarahlou1985 in reply to AJJ123]

I agree, I found acupuncture was very helpful in the short term. Had far more movement afterwards and felt more like myself, I have found though now I no longer get it my back pain is returning so keep it up xx

[Littledisneyprincess]

Poor you. Sounds horrible time of it. I use a hot water bottle and painkillers (but doesn’t take it away) but can’t believe the pain. I was in before Christmas and see my consultant at beginning of year. I am hoping for some answers here as well! X

[VW17]

Yoga really helps, you can Google stretches that will specifically help those areas if you don't feel ready to go to any classes. Wish you all the best in the new year x

[RB24]

Hi hun, ive recently also been diagnosed with stage 4 endo and back pain has always been my main issue too. I was told its cuz my uterus is very severely retroverted and basically almost stuck to my back hence the endo pains radiating to my back. Makes sence tho right? Maybe u could ask more insight to what could be attributing to your pains like your anatomy and placement of your organs in particular ur uterus.. i really hope this helped you! Also thank you to the administrator for putting in the bgse link, ive been waiting very long for my lap and think i really need to be referred to a bgse centre really. All the best hun hope you find relief of your pains xxxx

[Torapuck]

, I was told when I was pregnant that I had a retroverted uterus