I was diagnosed in my early 20s had surgery x3 and hormone treatment primarily to aid fertility. Once I’d eventually had my DS, endometriosis is just the gift that keeps on giving and increases the risk of miscarriage ( I had five before succeeding), I had a Mirena coil fitted.
It was life changing. It’s not always as successful in younger women but one of the major side effects of endo is chronic severe blood loss. I was severely anaemia for years and no amount of iron supplements could keep up with the loss. I eventually had iron infusions which helped.
Although she’s had a failed Mirena insertion it may be possible to have one placed under general anaesthetic privately. Its man effect is to stop the lining of the uterus developing and therefore reduce the loss of blood every month. Many women have endo and adenomyosis. The Mirena helps with adenomyosis.
Hormone treatments such as Zolodex, block hormones and temporarily stop periods by putting you into a menopausal state. This is reversed when you stop using it. On the one hand it is bliss not having the problems every month but it does come with menopause side effects.
Surgery is ok but it’s a stop gap. Usually carried out to clear the lesions and give you a chance of conceiving if you are ttc. Conversely, endo pain is often worse in the early stages when it’s difficult to detect, becoming less painful in the advanced stages. Often just as it appears to calm down and you decide to start a family infertility becomes an issue because it’s done the damage.
Im now 62, post menopausal and thanks to 15 yrs of Mirena have been pain free for 20 yrs. I say pain free, the damage to my bowel and bladder is permanent so still have some problems but you learn to live with low grade constant pain since it is so much better than the severe pain of endo when it’s active.
I hope that they work out or develop medication that can stop endo in its tracks and prevent the damage that creates the heartache of infertility. The pill has been used but it has its drawbacks backs. Some form of hormone receptor blocker that prevents the endo lesions from being active but doesn’t put you into a temporary menopause would be ideal and maybe not too far in the future.
It is such a difficult disease because it affects so many areas of your life. Having an understanding partner is crucial, I was really lucky that my DH was an absolute rock. He knew when I was going into a flare up and would run a bath and just let me deal with it. The pain can be so intense that you can’t stand noise, touch, light and definitely no conversation. He could see in my expression what was going on so if we were out socialising he would quickly make our excuses and get me home. He never moaned about it, would move to the spare room and didn’t fuss over me.
Most of the time you just want someone to acknowledge that it’s more than just period pain.