Progesterone pill for Endometriosis

[ALRT]

Hello,

I have recently been diagnosed with endometriosis via process of elimination and an MRI scan. I have always had awfully painful, heavy periods but in January, the pain became consistently excruciating, even when I wasn’t on my period. Long story short, I was put on the progesterone only pill named Desogestrel as I have had bad experiences/side effects with the combined pill in the past. The pain totally stopped for nearly two months which was amazing, but I have been having extremely long, consistent periods which last 12-18 days and lots of random bleeding since taking them. The doctor said to wait three months as my hormones adjust to the pill, so hopefully my periods will either stop or become more regular again. I’m on my second month. However, the pain has started again in the last week, around my lower back, stomach and thighs. I’ve just had a really bad flare up again and I just wanted to know if anyone could suggest what I should do next? I’ve got a check-up with a gynaecologist next month, but I can’t wait until then if this pain persists and I’m scared to try another pill. Would surgery be the next consideration? Help!

[Lindle]

What did your MRI report say as usually only deep endo shows?

[IB15]

Hi,

Sorry to hear it sounds like your going through it! My experience of desogestrel was so similar at the beginning, it took 6+ months for my periods to stop completely but it was worth it for me while I waited for surgery. I ended up increasing my dose to x2 a day which helped a lot. I do find my mood is lower on the pill and other things I think it effects is libido and I get constipated more since I’ve had no periods. But period pain has stopped; I get the occasional flare or spotting if I’m stressed or had a cold/ virus. Make sure you take it the exact same time every day as well! I hope this helps! Xx

[Sammyjam]

hi there your story is the same as mine however I started the pill in the April my bleeding eventually stopped in the July and the pain gradually decreased and by December is vertually none existent now ! I was advised in the first instance that if the bleeding didn’t improve i could also have noristerone but it wasn’t needed in the end .

[oceandaisies]

I’ve been on desogestrel for 5 months now and had a similar experience to you - was spotting/bleeding daily for first few months but had almost no pain (and any I did have required no painkillers which was unheard of for me before!), and eventually had a 40+ day timeframe no period at all just occasional spotting. But after this my pain came back and my period returned with a vengeance. I’m going to see if I have another period and if the pain is on that level again I will ask my doctor to double my dose, as my gynaecologist said it’s fine to do so if the periods don’t stop as this is the goal. The waiting list for surgery is very long, so it could be worth asking to be added when you see your gynaecologist so that you at least have this as an option, because you can always change your mind when the time eventually comes. I think there is just some comfort in knowing you have that as an option when pain is flaring! Really hope things get better for you soon xx

[Meme31]

hi, sorry to hear you are going through this terrible stuff. I was put on Desogestrel and had the same issue with bleeding 6 months later so doctor doubled the dose and the bleeding stopped.

I basically started Desogestrel in June 2021. Bleeding appeared in January 2022 so the dose was doubled. In June 2022 I dropped to one because I was so dry everywhere and depressed I felt I was shutting down.

went ahead until beginning of this month when I saw a specialist that put me on estradiol and I feel much better now. Waiting for cardiologist to check if I can take a progenistic in pessary along with estradiol as it requires blood pressure to be spot on and mine sometimes goes roller coasting.

Since June 2021 I had moments feeling very uncomfortable but never needed a&e and morphine like I used before.

Having said this, I am now 53 which means hopefully in menopause.

[watercolourist]

Hi,

I am on Desogestrel myself. It took my body to adjust to it around 9 months. I could see immediate improvement re: pain levels. Didn't disappear completely, but were lasting for shorter time and not so severe in first 3 months. Around month 5 I had major flare up, and for a week I couldn't leave bed and ended up with Co-codamol to ease pain. I was devastated as I thought I am in square 1 again. Doctor advised to give it more time, and only then think of another treatment. I am glad I did wait a bit longer. This flare up was so far last one I had and it was approx. 14 months ago.

If it helps I would give it more time. Unfortunately long lasting pain adjusts our nervous system responses and keeps our body in high alert all the time, which means that things take more time to get better.

I hope your symptoms ease with time and you feel better.

[Shellbell08]

I'm sorry I have been where you are and frankly no "hormone" birth control or anything helped mine. Hysterectomy has helped me I had it 2018 but be mindful it's not a cure. I have a mass on my adrenal gland and I can almost guarantee you it's the endo. I also have problems with my bowels I had some before the hysterectomy but it's became worse since. Good luck 🤞 and prayers to you.