Any experience with Cerazette for heavy b... - Endometriosis UK

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Any experience with Cerazette for heavy bleeding...?

Hi Everyone,

Just wondering if anyone has any experience with Cerazette - specifically for the treatment of heavy bleeding - and would be happy to share their experience of how long it took to settle in once they started taking it and any symptoms they had in the first few weeks/months?

Bit of background (sorry if TMI) - was diagnosed with endometriosis and endometrioma in 2011; had two laps in 2011 and 2015. No meds prescribed after both procedures (personal choice after discussions with consultant and GP). Up until late last year everything was fine; periods were normal and on time, no pain and no other symptoms. Around November 2017 periods became excessively heavy with large clots (teabag sized!), lasting longer and very irregular. Prescribed Tranexamic Acid which worked for a little while then didn't anymore. Fast forward to March 2018, blood tests revealed severe anaemia (all other blood works came back fine) so prescribed iron tablets. Susequently sent for Transvaginal Scan and MRI to determine the cause of heavy periods. Turns out I now have a fibroid measuring approx. 5cm but according to the specialist it's not 'protruding enough' to operate on at the moment and is in an awkward location (it's at the very top of my uterus). The endometrioma is still there but thankfully hasn't gotten any bigger and isn't currently causing me any physical problems like it has in the past (e.g. abdominal/side pain, pain in leg, etc.).

Specialist suggested two courses of action; Cerazette or Zoladex injections. After long consideration and weighing up pros and cons, I chose Cerazette over Zoladex as heavy bleeding main symptom and injections not recommended for women who have family history of DVT and/or stroke (I have history of both in mine). Although specialist leaning much more towards the injections she did admit that they 'might' help to shrink the fibroid (no guarantees) I could only have them for 3 months and - in her own words - then I'd most likely be back to square one. There's also documented evidence that fibroids begin to grow again once a woman stops Zoladex treatment and I DEFINITELY don't want that! So in my eyes not really a choice...

So, started Cerazette on 12th July which was second day of period. Everything seemed fine at first apart from a bit of spotting on 17th & 18th. Then on 22nd July seemed to start another period which as of today (4th August) shows no signs of leaving (so, two weeks of bleeding so far). Granted, the bleeding is no where near as heavy as I've had in previous months (although I'm still experiencing smaller clots about the size of a 50p, typically after I've been sitting down for a longer time) and sometimes it looks like it's starting to come to the end, before coming back heavier again. I've also been experiencing abdominal discomfort consisting of very mild cramps, bloating and episodes of constipation and/or loose stools.

Does anyone else out there have experience of Cerazette and its symptoms? I know we're all different etc. but it would be comforting to know that my current symptoms aren't anything to be overly concerned about. I'm going to try and get an appointment with my GP early next week to discuss things, but I was told by her and the specialist that it could take up to 3 months to 'bed in'. Honestly though, I can't stomach the idea of putting up with almost constant bleeding/spotting for 3 months!! I'm due to go abroad at the end of September and really don't want my holiday ruined by this.

The only thing that has completely put a stop to my periods in the past is Norethisterone (Utovlan) but when I asked about being prescribed that long-term no one seemed overly keen, although I was never really told why and understand it is used long term for women with Endo who want to stop their periods. Would asking for a contraceptive pill specifically with Norethisterone in it be a better bet (e.g. Noriday) than Cerazette? Or do I need to stop being so impatient and wait for the Cerazette to take effect, side effects and all?! I know Cerazette is meant to more effective because it has desogestrel in it, but I'm really not happy with these side effects and am questioning if it's right for me. I have two friends who are on the same pill and have nothing but positive things to say about it, so I'm really disappointed that it doesn't appear to be working for me. I can't take the combined pill (I have migraines with aura) so my choices are limited.

If you've got this far, thanks for reading and sorry for the waffle...!

L x

17 Replies

Wish I could say something positive about cerazette but for me it was the worst pill I ever took. I suffer with heavy bleeding but this pill made things 100% worse. Pain wise and heaviness wise! It was horrendous. I didn’t stop bleeding while I took it and the bleeding just got heavier and heavier so I had to stop and after that it took a long time to settle down, I was very anemic during this. I do hope it works much better for you but that’s just my experience 😣 xx

in reply to C2691

Thanks for replying. Out of interest, how long did you take it for before you stopped? GP and specialist have told me it can take as long as 3 months to get used to but persistent bleeding - heavy or not - is NOT my idea of fun. I've had too many months where the heavy bleeding has dictated how I live my life, I just want it all to stop now and was hoping this pill would be the answer (based on what consultant/GP said). I dared to mention hysterectomy in my last appointment, but was told it was 'absolute last resort' and have to try all other options first. But then, they're not the ones living with it day in, day out, are they?!

I had a terrible time on cerazette. Bled constantly!! Doc kept saying give it 3 months....i gave it 5 months and binned it. I felt terrible within myself and was constantly heavy bleeding. Now on combined pill, 3 months straight then 1 week break. What a difference!! I take migraines too but not the ones with the aura thankfully.

I really hope you get sorted soon xx

I’m coming up to 3 months of taking Desogestrel for endo and I have been bleeding all the time! I have a period then it returns after 2 weeks without warning! It’s so frustrating. It’s nowhere near as painful as it is without the Desogestrel but who wants to be bleeding constantly?! I can’t have the combined pill because I have hypertension. No idea what to do but I’ll give it another 1 or 2 months as see. I was hoping my periods would stop altogether not come on all the time.

in reply to FlashbackIVF

Hi FlashbackIVF - thanks for replying. Urgh - this is my fear about this pill! It seems for every positive experience I read, there's three negative ones. It definitely seems to be the Marmite of the contraceptive world; you either love it or hate it! My main concern is with the heavy bleeding as opposed to any pain, but if my current symptoms are anything to go by I'm not really gaining anything by carrying on taking it. But there's still that contrary part of my brain that says I have to give it time and just try to find a way of working through all the symptoms I'm currently experiencing on the basis that things MIGHT improve. To be honest, I'd love to reach a stage where I'm having no periods at all - like a lot of women seem to experience with this particular pill - but even a very light period every so often would be preferable to what I've been experiencing over the last few months and/or what I'm experiencing at the moment! I really hope you start to see positive results in the next few weeks - you have my fullest sympathies. x

same! my 1st month of cerazette, period arrived and has decided to stay. over 2 weeks of constant bleeding so far - although not as heavy as initially. so fed up, exhausted & emotional all the time. i know its early days - i will give it a few

more months then deicide what to do

next. this was prescribed to give my body a break - but this really is no break! i feel

so out of balance.

good luck! : )

in reply to emmalondon

Hi - thanks for replying. It's nice to know there's someone out there in the same boat as me! Like you I'm still tempted to give it another month - maybe until the end of August - as my GP and Consultant both said it can take up to 3 months to 'bed in'. My only problem is my holiday at the end of September. I really don't want to still be like this by then as it will totally ruin my trip and yet again, dictate what I do and when.

Hopefully will be able to get an appointment with GP tomorrow to discuss current issues; just some guidance from her would be nice (e.g. symptoms to expect, how long this bleeding/spotting is likely to last). I've looked at the patient leaflet that came with them and all it says in there is that 'some people may experience spotting or heavier bleeding, much like a scanty period'. Not very helpful in my opinion. Out of interest, when you were prescribed it did your GP/Consultant/Nurse go through what to expect in terms of side effects at all? I feel like this is something that they don't talk to you about when it's prescribed and would actually be very helpful if they did!

Way before I was diagnosed with endo or wanting a family I was put on cerazette tablets (was initially put on combined pill but my bp was so high and the theory that it was the oestrogen causing that, the doc put me on POP). Best thing ever for me as I had no periods apart maybe a spot or two every 6-8 months. I wonder if the tablet form and the injection delivery has something to do with it? I always complained of painful periods so I was very happy. And I’m hindsight, my consultant now believes that helped suppress my endo until I came off of it five years ago to try for a family. I hope thing settle down for you. x

in reply to Stoice

Thanks Stoice. I would absolutely LOVE to get to the point where I have no periods at all. Which might sound crazy to some, but I've reached the stage where I'm actually done with them now. If I never had another one, it really wouldn't bother me. At least I could get back to living my life on my own terms instead of being dictated to by my stupid periods!

Out of interest, when you were prescribed Cerazette, did your GP/Consultant go through the side effects etc. with you? No one did with me and I feel it would have been helpful if they had, as the last two weeks have been miserable and made it a very worrying time for me as I just don't know if what I'm experiencing is 'normal'.

Stoice profile image
Stoice in reply to

I can’t remember if they mentioned side effects (the initial ‘chat’ was over ten years ago) I do remember the usual taking the pill and risk of thrombosis/cancer etc. For me it was trying a pill that didn’t give me high bp and helped my painful periods, as well as birth control. One side effect I now live with is facial hair but then that could also just be my hormones/ovaries anyway. I’m olive skinned with dark hair though, so it could just be what Mother Nature gave me. Nothing a trusty pair of tweezers and a tub of Jolene can’t fix though!

in reply to Stoice

Thanks Stoice. As for the facial hair - yep, know how that feels! LOL!! Had a few whiskers appear in the last few years myself; not sure if it's hormone related or just age creeping up on me. Wasn't aware of thrombosis risk with this type of pill though, so that's interesting to note. Can't take combined pill because of migraines with aura and other treatments aren't recommended because of family history of thrombosis and fibroids, so my options are limited at best. Just really hoping Cerazette turns out to be the right choice for me, as given other's comments on here it sounds like an absolute wonder pill if it works. x

I’m sorry to hear you’re struggling. I’ve been on this pill for four months and my experience has been a positive one. I’ve had a little spotting at the start but it settled down. I have had a period pretty much every month but it’s been so much better than any period I’ve ever had, bleeding is lighter I’m not suffering from nausea and much pain at all. I can actually function normally where as before I would be on so many meds and laid up fit for nothing. Sounds to me as if you’ve given this a fair go and if it working for you right now and you’re still suffering it could be worth seeking help. It is shitty that it can work for some but not others , it would be amazing if there was a pill we could all take that worked for all with Endo. I hope you get some help and find something that works for you. x

in reply to Charb82

Hi Charb82 - hope you don't mind me asking but when you say 'a little spotting at the start', would you say it was like a very light period or just a bit of spotting that didn't require any kind of sanitary protection? And how long did it last for? I've managed to reach the ripe old age of 39 and never been on any kind of contraceptive pill until now, so I have nothing to compare my symptoms with. Thanks. x

Hi,

I've not read all the replies so I apologise if I'm voicing something that's already been mentioned.

I was the same as you when I started Cerazette, except the hospital put me on the cheaper version Feanolla (although I was told the name makes no difference). I felt like I was bleeding every single day, sometimes they'd be clots so period like and sometimes it'll be light spotting... But it always interrupted with my daily life not to mention ruined my sex life (sorry tmi). I did still have some bloating and toilet problems, any pain I had was definitely less severe as before. I also had some extreme mood swings, and I just felt like I wasn't me.

I decided to stick with it til at least the 3rd month and booked an appointment with my GP because like you, I couldn't deal with it anymore. Then suddenly during the 3rd month I started noticing the bleeding was becoming lighter and less consistent. After seeing my GP she suggested I give it another month. I've now just started my 5th pack and everything has so far *touch wood* settled. I'd say by the end of the 3rd month and beginning week of the 4th everything had settled.

The next 3 months prescription was Cerazette as I felt it may have been the cheaper version that affected me. I also noticed in the earlier months, if I was lazy and took the pill a few hours later then I should I would bleed (might be in my head and just due to the pill not settling). I also only take the pill for my endometriosis (not for contraception).

Sorry for such a long message. I hope it's helped. Although it can be a pain suffering side effects, sometimes it's worth sticking it out for a bit. For me this was my only other option as I didn't want any other hormonal treatment. So if this didn't work for me is be back to excruciating pains almost every week. I also feel keeping a food diary of some sort helped me too, I realised certain foods caused discomfort for me.

All the best xxx

M

in reply to MischaM

Hi MischaM - thank you so much for your reply! Having read your post and looking at others on this forum and elsewhere online, it looks like 3 months is the 'magic' turning point for this particular pill. Like you I'm not taking it for contraceptive reasons, just for the purposes of trying to ease my heavy bleeding issues. As the only other option for me was Zoladex injections - which come with a whole host of much more unpleasant symptoms and are only designed to be used short-term - I was keen to try something a little less invasive first, hence choosing Cerazette.

Luckily I haven't experienced any mood swings (yet!) but am noticing some mild PMS-like symptoms which so far don't seem to have any pattern to them. They appear one day and disappear again a few days later. I can only assume this is my body getting used to the pill...?

So far I've managed to take the pill consistantly every day at 9pm. I've set an alarm on my phone to remind me as I was told by my friend (who is on Cerelle, which I believe is the same as Cerazette) that taking it at exactly the same time every day 'might' help with the side effects. Sadly that doesn't seem to be the case with me so far, but I'll keep up this regimen if only for my own peace of mind.

I guess my only concern is that with going abroad at the end of September, things may not have calmed down by then and I'll have to contend with it all whilst I'm away (I'll have been taking it for a little over 3 months by then). It's definitely not ideal, but if this pill ends up doing what I want it to, then I guess I'll have to stick it out and just learn to be patient!

Thank you again and for helping to put my mind at rest a little.

Hi,

Sorry for such a late reply.

You're more then welcome, I can understand your dilemma with going away and still experiencing these problems. I was thinking the same way as I'm going away mid Sept too. Hopefully you'll start to settle slowly this month and be fully settled by the time you're away.

I hope it all works for you *fingers crossed*

M

xxx

Just thought I'd post a quick update for those who might be interested...

I managed to get an appointment with my GP this morning and explained all the symptoms I'm currently experiencing. She basically said that this pill is known for causing these symptoms 'in some women' and that ideally I need to continue to take it for the recommended 3 months, at which point if I'm still having issues, she can look at other forms of POP she can prescribe instead. She also explained that 3 months is the typical amount of time it takes for your body to adjust to this particular pill, hence why they recommend this time-frame for the initial course.

I'm keeping everything crossed that things will start to calm down for me now I'm heading into the second month on Cerazette but have resigned myself to the fact that I might be contending with these symptoms for a while longer yet. And as annoying as that is, I'm willing to keep trying as the alternative (heavy bleeding and/or the Zoladex injections) are not viable options for me.

A BIG thank you to everyone who replied to my post; it really means a lot to have your input and helps me to appreciate that I'm not alone where this horrible condition is concerned.

The best of luck to you all, on whatever journey you're currently on. x

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