My Experience with Progestogen: What Went Wrong and What Worked

After my excision surgery almost two years ago, I went to see my specialist, expecting to be put on some sort of hormonal treatment, but alas, that was not to be. He recommended we do nothing. No hormones, no treatment of any kind, just wait to see how my body recovered from the surgery.

At first, my most life-disrupting symptoms seemed to have disappeared. Intercourse stopped being painful, going to the toilet ceased to be a form of torture, and my periods allowed me to get on with my life. Yet, after six months, my period pain worsened tenfold, returning to how it was pre-surgery: excruciating. I was losing up to 12 days of my life each month, either in pain, or recovering from what felt like an assault on my body. It was heartbreaking to have all of this return. I felt like I had only been allowed six months of “normal”.

I returned to my specialist, and this time he suggested I tried desogestrel, a form of progestin. Progestin is a synthetic form of the naturally occurring female hormone progesterone. The idea is that it addresses the hormonal imbalance that comes with endometriosis, mimicking the effects of natural progesterone. I was warned there could be some spotting, but other than that, it would lighten my periods and keep pain levels manageable.

At first, it all felt OK

After two weeks, I began to bleed intermittently. I reached out to my local endometriosis support group and was reassured that this was perfectly normal.

Yet, after five weeks of non-stop bleeding, I began to worry. Sometimes, I would get four to five days of no blood, but then it would come back, stronger and heavier. To top it all, I was traveling internationally, which meant I could only talk to my specialist until I returned home.

When I finally met with my specialist, he prescribed the very popular Provera tablets - also known as medroxyprogesterone acetate, another form of progestin. Even though my specialist suggested I went on a daily dose of 30g,  after speaking to fellow patients who’d taken it and experienced unpleasant side effects, my GP and I agreed to stick to 20g a day.

This time, the side effects were more tolerable

While I experienced some spotting, just as with the other pill, it stopped after a couple of weeks. I also had some on/off nausea for a short while, but that barely bothered me. My skin did break out quite majestically, though. My cheeks were covered in spots, some of them very sore, and super visible from the start. This lasted for four and a half months. After that, my skin settled.

And since then, that’s it. There is the occasional spotting but it is completely manageable. Because I am at such a low dosage even though I barely bleed, my ovaries are still doing their thing. In fact, it is common to ovulate whilst taking this medication, which is why it is not a contraceptive.

I haven’t had proper periods for over a year, and while I still experience occasional flare-ups and pelvic pain, gone are the days in which I was bedridden for a week. Despite the heavy amounts of tweaking it took and the blood I had to deal with, I got my life back,

It is definitively not a permanent solution and far from a cure. But a while back I decided to live in the present, and I am happy with how things are for now.