I am writing this as a mum trying desperately to support my 14 year old daughter who has suspected endometriosis. She has had horrendous periods from day 1 and has tried mefenamic acid, tranexamic acid to reduce flow/clots along with accupuncture before being put on Rigevidon. Her pain since going on the pill has been a constant 7/10 and she is exhausted. She has missed a lot of school and it is the start of her GCSE's!
Given it was suspected she had appendicitis at first, she had an ultrasound in September, which identified fluid in the pouch of Douglas.... I was reassured this was retrograde menstruation and the blood would be reabsorbed by her body in due course.
Following this she was put on the pill and we have been back to the doctor a number of times for pain relief and seem to be held at either tramadol or codeine as the major drug of choice (along with paracetamol and neurofen). Given her inability to tolerate mefenamic acid for her pain relief, the doctor referred us to a gynecologist. We have minimal private health cover and managed to get to see one who says she specialises in endo within two days (thankfully!). She stated my daughter was on the wrong pill and she was moved to Femodette and that she did not like her taking Tramadol...the only pain relief she recommended was paracetamol and neurofen. Well, this is not an option...so she now takes codeine to take the 'edge' off the pain.
We are going back to see the consultant in two days, as her pain has not reduced in the last two months since starting femodette and I am at my wits end. The consultant said it would take time - but this is right?? I have done so much reading, hoping to find an answer and am at a loss as to what to do next or what to push the consultant for.
My daughter is currently on a wheat-free diet to see if this helps things, but I am aware that every day she is putting more oestrogen into her body on a daily basis, so really, it is likely to make a change in her pain?
Has anyone used systemic enzyme therapy? Also, the pain is causing her issues sleeping....any recommendations (she has heat pads/tens machine/pregnancy pillow to help her get comfortable)?
Thanks in advance for your time xx