I’m on day 22 of starting Desogestral (mini pill) and my pain is just as bad. I have stage 3 endo and awaiting a third laparoscopy. I am bleeding heavier than without being on the pill and just feeling rubbish. I could literally sleep anywhere right now, is this normal? I’m in two minds about stopping it and just continue as I have done before.
What do you think?
Hi Daisy,
Sorry you are having such a rough time. I knew I also had a rough time on Desogestrel so I have just gone back to see if I had asked for advice on here and found a post I did 2 years ago. I've copied what I put below.
"For pain etc my endometriosis consultant advised me to change from Microgynon to Desogestrel. I changed this 3 and a half months ago. Since I have been on it it have had nothing but problems; heavy bleeding every 28 days which last 2 weeks+ then continuous spotting after that, zero sex drive like I have never experienced before, weight gain and it has not helped with my pelvic pain AT ALL in fact because of the constant bleeding which increases my pain I think it could be worse."
Some of the replies I got on the post about the Desogetrol were:
"Desogestrol helped emotions, I was only on it a couple of months, did nothing for pain."
"I’ve stopped tablets in the past. When I stopped that one, it didn’t make much difference."
I know everyone is different and for some people it really helps but I was not one of them. For example my Mum has been put on it for heavy bleeding due to fibroids and she says it has completely changed her life. Her bleeding is much lighter and less frequent. I know they also always suggest to try and stick any new hormone out for at least 3 months but it depends on how it makes you feel and if you feel you can stick it out for the 3 months to see if things settle.
Hope you start feeling better soon 🤞🥰
Hi Jade,
Thank you for replying, that’s interesting to hear your response.
I feel like a permanent bloated mess, even worse prior to being on the pill and like you say the bleeding/spotting has been constant for a week and I’m not expecting it to settle down. I think my GP was clutching at straws trying to help me and I’ve had to try it to see. I think I will do the month and then review after.
What is happening with you? Are you starting any other treatment?
What else have you tried?
I am currently going through IVF and in the process of my second attempt and my second Frozen Embryo Transfer. So hopefully before the end of March I'll have the transfer done and have a positive pregnancy test and go on to have a healthy pregnancy.
I had surgery for my Endometriosis in March 2020 after my first Embryo Transfer which unfortunately ended in a miscarriage. That is when I got put on the Desogestrol. Since then I've been on Microgynon on and off whilst I've waiting for the right time to go again.
That’s exciting but also terrifying, we had a failed transfer last year (chemical) and were due to do another transfer in January but endo worsened with both ovaries being stuck to my uterus and a plaque of endo on the back of my uterus. I’m so sorry about your miscarriage it’s truly heartbreaking. Wishing you all the best for your transfer Jade, take care x
Iv been on this pill for about 3 / 4 years now I had issues with bleeding to point I had to be put on another medication to stop the bleeding it then settled for a while then since last year Iv had on and off bleeding and dark blood. I’m tired a lot but that could be a mixture of things, pain wise I’m in pain most days but nothing like I was. So overall it has helped me to function but it comes with its side effects. It took me awhile to adjust to it if I remember right ... I’d give it another month or so but if you are not happy with it then do what’s best for you and talk to ur gp. Hope it settles for you soon xx
Thank you Honeybee, I’m due to see the gynae doctor at the end of the month so will try to hold out til then. Thank you for your advice it is really appreciated. I really love being part of this group as you are all so very helpful and I don’t feel alone ❤️
I was like this I told my gyane and he said double the dose. Now I take two of these every day and the bleeding stopped within 2 weeks. No periods or spotting or anything for the last two years. Ask your gynae about changing up the dose. It has mad ea huge differnce to my level of pain and what I am able to do.
That’s really interesting about double the dose Iv been never been given this option I will ask at my next appointment 👍🏻
Hello, sorry you are suffering dear. I just wanted to say that, I know everyone is different and our bodies react differently, but I couldn’t have survived the past few years without taking desogestrel back toback. After numerous tries on different pills and laps over a 20+ year period, desogestrel gave me back my life. It took many many months to see the initial effects. Its not perfect. But it helped me. Sadly its very much trial and error with hormonal pills, but if you can tolerate it i would say give it some time. X
Thank you to all of you for your help and guidance, I will try and persevere, I’m a nurse which doesn’t help the situation but I’m on annual leave now so will take it easy and hopefully that will help x
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