Stage 4 endometriosis with bladder and re... - Endometriosis UK

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Stage 4 endometriosis with bladder and rectum but is it normal to have ridiculous back ache?

Escapologygirl profile image
8 Replies

noticed a pattern lately thst no matter what I do ie vacuuming, cutting the grass, washing floors etc that for the rest of the day and next day my lower back is ridiculously sore shooting up my back. Is this my endometriosis? I alway just have a warm shower and try to rest up but I'm only 44 and wondering if its going to be worse in future or is it something else? I'm 5ft 8 and my weight is good in that my GP thinks I'm healthy enough despite having stage 4 endometriosis, underactive Thyroid and coeliac disease.

8 Replies
Lindle profile image
Lindle

Yes lower back ache with pain typically referred down the legs (most often the left). It was the same 'stoop' that triggered it for me like bending to make a bed.

Escapologygirl profile image
Escapologygirl in reply to Lindle

oh wow. Thank you for your reply. It seems theres always something with these disease and I'm rapidly learning this fact on a daily basis. At least I know now its not in my imagination Thank you. How do you deal with it if i may ask?

Avourneen profile image
Avourneen

Yes adenomysiosis can do this too. Really interesting to read what Lidle says the same a stoop like ironing makes it much worse for me too. Endo can grow along the sciatic nerve and along the ligaments in the back. My is about 50% improved after excision and taking POP to stop periods.

Escapologygirl profile image
Escapologygirl in reply to Avourneen

ohhhh ok wow. Thank you for your reply. I've just noticed this over the last few months anytime i cut the grass or vacuuming and I'm in agony the whole night and next day too. The mini pill didn't suit me so I'm prescribed ponstan for pain management. But its interesting adenomyosis has never been mentioned.

Lucie44 profile image
Lucie44

I have similar issues, also diagnosed with endo and adenomyosis. Endo is on my uterosacral ligaments. I was told by my osteopath my hip flexors are very tight too and given stretches to do. I think having a foam roller has helped too. I wonder if adhesions caused by endo make everything tight and pull causing the back ache.

Escapologygirl profile image
Escapologygirl in reply to Lucie44

thanks for your reply and glad I'm not the only one. Do you use the foam roller yourself or have it done by someone? It sounds interesting.

tracylou4001 profile image
tracylou4001

yes I also suffer with back pain and pain down right leg even after doing the smallest of tasks, life is so s**t and no matter how many times you try and explain to gp/ hospital doctors they still don’t get it, I am currently awaiting surgery for scar tissue/adhesions pain started last September am now on strong pain patches which takes the edge off the pain but make me feel like a zombie all the time, just never any relief, I had 3 surgeries last year all because of scar tissue 1 laparoscopically and 2 Laparotomies which obviously has now created a ridiculous amount of new scar tissue, does anyone else seem to grow scar tissue really quickly, last laparoscopic I had took surgeon 4 hours to get through it, bear in mind I had been going to the GP for 18 months and they kept telling me there shouldn’t be anything there and refused to refer me so I ended up going private using all my savings for it to go wrong a week later and lead to full open surgery due to bowel obstruction it then happened again last November, last year was the worst year of my life , sorry to gone on and on I just needed to vent. X

Escapologygirl profile image
Escapologygirl in reply to tracylou4001

thanks for your reply and please vent away, we're all kindred spirits here. Ive only had the one diagnostic laparscopy in 2018 can't get any gynaecologist to even mention doing any future surgery despite them finding it on my bladder and rectum in 2018.

Since my periods started again after the nightmare of the decapeptyl injections and mini pill last year the pain is worse and the back ache is just awful. Its a nightmare trying to get any housework done between the pain and the tiredness.

I'm on ponstan for the pain management as thats all the gynaecologist will offer despite me going privately. But i find while yes it helps it also leaves me zonked.

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