Endometriosis returned after excision and mirena iud
After 13 years of pain I was finally diagnosed with stage 4 endometriosis 6 years ago.
It had obliterated my bowel, Fallopian tubes and uteral sacral and round ligaments, it had attached my womb to bowel, pulled and stuck one ovary to the front of my stomach and stuck the other on my bowel.
I have had 4 operations for this. The last one excised all disease, removed both tubes and left ovary. I had mirena coil inserted during surgery. I’d had previous excision surgery but it had still returned.
I had a chemical menopause prior to my last surgery too.
The mirena has stopped my periods which is great as I no longer get the horrendous contraction type pain I used to get.
But I’ve been left with a constant burning and pinching pain. And a pulling heavy sensation and constant cramping on the left hand side which is the side I had the ovary removed.
Also I’m continuing to have issues with my bladder, needing the toilet at least 40 times a day!
I have currently signed off work long term and doubtful whether I will ever be able to return due to the pain caused from sitting down. Which is really getting me down.
I saw my gynae the other day and he was reluctant to admit the endo had returned already (but I know how quickly it returned after previous surgeries) and was very confident the mirena coil was doing it’s job.
He diagnosed the pain I now have as scar tissue damage, adhesions and permanent nerve damage. And advised the only surgery option left is a total hysterectomy but even having that I would still suffer with nerve pain and bladder problems.
Anyway, he has now recommended I try amitriptyline, the gnrh analogue injections again and oestrogen patches. And has also referred me to a urogynaecologist regarding bladder problems.
Has anyone else had a similar experience?
Hi. Which endo centre is it as some are more advanced than others?