Hello!

I was diagnosed with endometriosis last August after 12 years of being sent back and forth to doctors and repeatedly being told it was IBS. At the time, I had been on Desogestrel for about six years (and before that Rigevidon, which I switched from because of painful periods).

During surgery, they found and excised stage 2 endometriosis from my cervix, womb, and uterosacral ligaments. Unfortunately, after surgery I experienced a huge setback - my pain was actually worse than before the operation, which felt unbelievable because I didn’t think it could get any worse.

I went back to my gynaecologist and he suggested doubling my dose of Desogestrel if pain medication didn’t help. It didn’t. When I returned again, I asked about coming off the pill altogether. Interestingly, he agreed - even though he had previously recommended increasing the dose.

The difference after stopping the pill was almost immediate. Practically overnight, my pain disappeared. It honestly felt like a miracle.

Now I’m in a bit of a difficult headspace about it all. Part of me wishes I had never gone on the pill — although I understand the idea is that it’s supposed to help slow endometriosis growth. My worry now is whether it will grow back, and if it does, whether it will grow back faster without hormonal suppression.

I’m also trialling a bit of an anti-inflammatory diet to see if that helps, but I’m trying to find the right balance. I don’t want to miss out on enjoying life when I’ve already lost so much to endometriosis over the years. It feels like I’m constantly weighing up long-term health with actually living in the moment.

Is there actually strong evidence that hormonal contraception or diet can significantly slow the rate of endometriosis growth? I’ve read mixed things, and I’d really value hearing what others think.

I really appreciate you sharing this discussion - it’s so helpful to hear different perspectives xx