So I spoke to my doctor today, she’s said that it looks like my endo is coming back as I am getting symptoms come through on the last week of each pill packet. (my diagnostic laparoscopy was April last year - I know I need excision next time).
My body is still having a cycle under the pill.
She’s doing some off-licence thing and doubling the intake of my cerazette pill so I now have to take two a day.
Has anyone else done this? Did it work for you?
If it doesn’t work then we have to look at the implant or injections. 🙈 I have a big phobia of needles I’m hoping doubling up works.
I doubled up, it only helped me for a short time. But some hormones only help me temporarily.
The depo was amazing, I had it every 10 weeks but after 6-9 months it stopped helping. But it would pass some time before I could to see the consultant/operation etc.
Is depo the injection? I have a phobia of needles so I’m dreading it if it comes to that but the relief might be worth it. I usually just end up passing out with needles 😂🙈
Re needles, hate them as well, discovered Emla cream last year, you need to put it on at least an hour ahead of time and there are clear non absorbent dressings to cover it, you can use cling film as well. The cream you can get online/pharmacy or prescription.
I was told to double up on pill and my symptoms didn’t I’mprove at all and actually made my hormones worse !! Good luck to you though I hope it works for you
I’m going through the same thing at the moment with cerelle. I turned up to the pharmacy yesterday to pick up the double dose and got turned away as the pharmacy didn’t agree with the double dose and needed to speak to the doctor to confirm. I hope it works for you. Please let me know ☺️
Oh really! That’s bad. Yeah I took my first two last night so will see how it goes. 🤞🤞 even if it gives me another 12months relief, that would be fine. Xx
I was still cycling under the pill and was told to double up too. And it has worked for me so far. I’m taking Desogestrel though which is the generic of Cerazette.
My main issue was belly button bleeding as I have umbilical endometriosis too. A few weeks into doubling my belly button stopped bleeding and I also stopped spotting. I’m waiting for my surgery to remove the endo and sort out my belly button so this works for now as a short term solution.
Hi, I have just started this treatment as well only a few weeks in. I had a lap 18months ago & unfortunately having been bleeding in some form since 😕. I have had the mirena, implant & injection none of these suited me. So I'm hoping this will. They believe I also have adenomyosis.
I've been on double dose for nearly 3 years I think? I had some type of implant injection every month for 5 months (Max allowance was 6 months) so my only options were the pill or drastic surgery (i'm more complex than just endo). Started having symptoms on one pill so she upped it to two. Every GP and pharmacist has looked at me like an alien but it works! After 2 years I've had slight twinges but nothing like before. I definitely recommend!
Hi, just a question as I am going through this at the moment. I have doubled up for the past 4 months but still having some spotting, occasional twitches and night sweats. Did you have any symptoms after you doubled up? I am wondering if my body is just adjusting and it will get better. I was on single dose for about a year before, took me a while to adjust, but the spotting never went away really.
Hi yes I did, my hair was falling out 🙈🙈 it got so thin and when I showered and washed my hair, my hands would just be tangled in it. I still had pain too, it probably would had settled but the hair loss freaked me out and so I decided to come off it. We are TTC at the moment but I don’t intend to try anymore contraceptions to help my endo, Nothing has worked xx
That is awful I mean with me it really helped managed the pain and my cysts have decreased quite significantly. I had about 14 in total around ovaries and bowel ranging from 4-20 cm each, so I had to do something about this as I was at risk of having severe complications from these.Still, even though cerazette helped me with pain etc. I am not happy with all the spotting and night sweats...also feel quite flat within myself.
I keep hoping that the double dose will help and these side effects will get better...I have tried so many things over the years. This is my last resort at this point.
And yes that was the other thing, I’ve had a low mood for yearssss and when I came off the pill I felt like myself again. I think the pill drags you down a lot.
I think it would be worth persevering to see if things settle if its are helping with pain. Your body might just need a bit of time to adjust.
Hi, I doubled up over 4 and a half years ago now. I still get twinges at the end of the month but its not every month and I rarely need to take pain medication for it. Compared to how I used to be before I doubled up and the side effects I got from the injections were horrendous e.g. dripping (I mean dripping like ive been in a shower) with sweat and constant anger to name a few. The joys of hormones ehh! I hope there's a perfect match for your body out there. This is a horrible disease and the treatments can sometimes be worse than the endometriosis itself. Wish you the best!x
I double my Cerazette dose and it’s much better at controlling pain and bleeding, and I don’t really feel anything negative. It’s pretty common practice for endo management as it’s perfectly safe to do. I’ve been told by a few gynaecologists to do this, and my current gynaecologists is very highly-regarded and on the Nook list and he’s very happy with me doing this too. I just can’t tolerate oestrogen anymore so this is a better option than a combined pill.
That’s good to know, thank you! I’m really hoping it works. Didnt expect for it to come back so soon so just hoping I don’t have to start from scratch again x
If you’re having symptoms after ablation, it just means that the endo was not removed - which is of course because only the top layer was burned off, and this can also push the lesions deeper into the tissue. I highly recommend you check out the EndoLibrary section on the CEC website, and also look for the group The Endometriosis Summit on FB. Top world specialists explaining everything and discussing best practices.
Definitely shop around (Nancy’s Nook list) as there are many gynaecologists who do more harm than good by claiming they’re experts and can perform excision. Even BSGE centre gynaecologists don’t necessarily do excision so please do your HW. I’ve been so badly harmed by my last surgery with a non-specialist. I now have to spend £18K to fix it and actually excise the endo that is clearly still all there.
Thanks for this post. I started cerazette two months ago after visanne stopped working for me. However I am having a nightmare period on it. I might now go to the doctor to ask for a double dose. Let us know how you find it.
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I mean with me it really helped managed the pain and my cysts have decreased quite significantly. I had about 14 in total around ovaries and bowel ranging from 4-20 cm each, so I had to do something about this as I was at risk of having severe complications from these.Still, even though cerazette helped me with pain etc. I am not happy with all the spotting and night sweats...also feel quite flat within myself. 
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