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Old 28.07.2019, 10:38
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Re: Question for the ladies - fibroids

After numerous PMs over the past few years, I thought I should update the thread again in case it helps someone.

The fibroid was too far into the wall of the uterus to be completely removed, so the doctor cut away what she could. The recovery was fine, more like a bad period for a few months. It grew back within a year, but she had warned me that could happen.

As others warned up-thread, hormones made it grow faster. First IVF hormones and then pregnancy hormones. It grew so large it stole the blood flow to the baby and I wound up miscarrying. The doppler ultrasound was clear that the fibroid won.

It continued to grow. By the time I could face going to the gynae again, it had grown so large it distorted the womb and was no longer safe to operate or to even think of pregnancy. I was on hormone-suppressing medication for 6 months to try and shrink it. It shrank about 30%, which the doctor said was about as good as we could expect.

When I went off that medicine, the hormone that had been suppressed surged. This sent me to urgent care in some pretty unbelievable pain and was causing problems not only with lady bits but with digestion, etc. The fibroid had even grown a friend. I was lucky to have an endometriosis specialist as the doctor that day. Turns out I have deeply infiltrative endometriosis, sometimes also called deep invasive endometriosis. Previous doctors had failed to diagnose it, probably because of the focus on the fibroid and all the hormones I was ramping up and suppressing over and over. The fibroid was one problem, but it wasn't the only one.

Our dream of becoming parents of our own child is over. My only options are hysterectomy with a bowel resection or hormone-suppressing medications until menopause. For now we've chosen medication.

I realize this is a lot of info to take in and I don't want to scare anyone who has fibroids. My recommendation would be to seek second opinions and get as many tests as possible so you know ALL the problems before you try to tackle them - particularly if you're considering the roller coaster of IVF. We would have saved a ton of money, a lot of medical interventions, and a lot of emotional heartache had we known all the facts before.

Hope it helps someone.
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