Endometriosis & Ankylosing Spondylitis

[Chezzerl]

Just wondering if anyone else has also been diagnosed with both conditions ?

It took a long time to get both diagnosis and after many years of pain killers and excision surgery for DIE including bowel resection, I’m just about to start biological medication for the AS and was wondering if anyone else has had this treatment and did you feel it also helped the Endo ?

Just feeling a little nervous on this new path and grateful for any information x

[Avourneen]

Has your AS been confirmed ? There are several special blood tests that can confirm it or rule it out. It's quite rare especially in women. I went to a rheiumatologist due to appaling backache caused by endo and she was sure it was this but when I did further tests it was just endo and adenomysiosis causing the back pain. They will need to do blood tests for creation and MRIS of your spine taken months apart to see waht is happening to the spine to diagnose this for sure. Please make sure they have firm evidence for this diagnosis. before starting any treatment for it.

[Chezzerl in reply to Avourneen]

hi Avourneen thanks for your reply , yes I was diagnosed with AS finally in March 2020 following MRI scans with contrast ( where they injected dye ) of my sacroiliac joints which showed bilateral inflammation of both SI Joints combined with many other symptoms is how they made the diagnosis.

It does get very confusing to know which symptoms are my Endo and which are the AS 🤪 Hoping the biological injections help both 🤞 have also had several MRI of my spine but it would be very interesting if I could persuade my rheumatologist to do new ones to compare good idea 👍 thank you

It has taken me months to make this decision to try this new path of treatment so just praying it the right decision we shall see xx

What treatment have you received so far for your Endo and adenomysiosis?

[Avourneen in reply to Chezzerl]

Hi Chezzeri,

I'm sorry to hear that they are two really heavy conditions. I have had two ops for my endo one ablation that helped for a couple of years but was probably the wrong treatent then an excision which wasn't very well done, the surgeon left a lot of endo in.

But my pain is better since that but definitely not gone.The best thing I have tried is the progesterone only pill. I am on a doble dose of that which has completely stopped my periods. I need another exicsion but the doctors now tell me because the second op was a bit of a mess and I have so much internal scarring that another op would be very risky.

So the idea is to wait for the menopause and see if that helpsI'm 50 so it shouldn't be long. I really hope that the biological medicine helps and that your pain will be reduced you have a very tough call having both illnesses. Wishing you lots of strength to get through all of it and that we will all get some new and effective endo treatment as research progresses.