Endometriosis UK

Cerelle

Hi Ladies,

I've been taking Cerelle since January 2017 as a pain relief for a possible endometriosis diagnosis.. I have persevered with it and although I've had side effects, I believe I've been extremely lucky and it has kept me out of hospital with crippling pain. I have however felt very, very unmotivated and quite down about things in general, does anybody else feel this way on Cerelle? x

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Hi Hun! I was prescribed Cerelle a while back and like you I suffered side effects such as tender breasts, weight gain and bloat as well as depression and low mood. My doctors solution to this was to prescribe more medication but for depression??? However, I didn't accept that as I didn't genuinely have depression so seemed a bizarre solution to me. I'm now on norethisterone for pain relief and to prevent my periods which is working great for me. I have no side effects at all and the chronic pain I experienced has reduced dramatically! I'm aware this doesn't work for everybody, but don't settle for something that's only going to affect your life in a different way. As much as the medication trial and error experience is long, confusing and utterly draining there's GOT to be something that's perfect for YOUR daily functioning, YOUR body and YOUR mind. Not just to reduce your pain. Stay strong 💪🏼 it's so tough, but we're women and we can get through anything. Xx

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Hey! Thank you so much for taking the time to reply to me! I've literally only been on this app for a week or so and it's kind of a comfort thing knowing I'm not on my own with similar symptoms, it also makes me realise that I am lucky and there is hope and it's good to share! Thank you for sharing a little bit about yourself too! I'm glad you've found something that helps your suffering. I too would definitely not want to be prescribed anything for depression.. to be honest I don't think it's depression .. it's more that I'm just totally unmotivated by everything and no energy you know? Feel like I need to get a grip and snap out of it but it's really not that easy..! x

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Awww it's not a problem at all! I haven't been on here that long either but I'm finding it so educational and supportive. I'm learning more from you ladies about myself and endometriosis than I am any professional I've been to see over the years. I have days of no motivation or energy, where I'll be in and out of sleep, with everything I SHOULD be doing playing heavily on my mind. I've learnt on these days to either make the decision to write the day off, or fight against how you feel and do what you had planned to do. The only issue with having no motivation or energy is, it will eventually develop into depression due to inactivity and our own insecurities taking over. How long have you been taking Cerelle? My depression with it crept up on me slowly, and one day I realised I'd not been outside for a while, or even wanted to, not seen my friends or family. I eventually put it down to the new pill I was taking and stopped. It's so difficult to determine what's making you feel the way you're feeling, just know you're not alone in all this. You've got thousands of amazing ladies behind you, some suffering exactly how you are. 💜xx

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Hi! Me again... I've been on Cerelle since January this year.. maybe I am a little bit depressed. It's something you don't really want to believe or admit to is it? I have had other things going on but I'm usually a productive person who wants to get stuff done and I just haven't got the mindset for it at all at the moment. It's unlike me.

Ideally I'd like to come off Cerelle but I'm scared that I'm going to end up back in hospital with crippling pain and also not being able to go on the combined pill means trial and error with other options, I just don't want to go through all the side effects. Maybe that's lazy/ cynical of me, I don't know. Before September of last year I hadn't had a period for 7/8 months and then I was rushed into hospital in the September and again in the December due to the pain I was in whilst coming on. After it happened In September, I was referred to a gynaecologist who put me in for many a blood test.. hormone profiles and a couple of transvaginal ultrasounds all of which came back normal. She ruled out premature Ovarian Failure.. and there were no cysts on my ovaries and everything looked healthy..To conclude my appointments with her, she said I was on the verge of PCOS but it could possibly be endometriosis hence the pill prescription.. but I want to regulate my periods not completely stop them because i don't know how it would effect future plans to have a family if I had no bleeding at all. Over the last 10 years I've had times where I've been out and about and all of sudden without any warning been reduced to this awful awful pain... to the point where I'm fainting and being sick and I'm just uncontrollable on the floor or on the loo! ( I read your other post too about toilet troubles and I hear you! It's happened a fair few times to me!! It's the worst feeling, you feel useless. I end up being sick in the sink in front of me whilst sitting on the toilet! It's vile. )when I went to the doctors before about it they just said ' it's period pain, it's normal' and I just thought I was being a wimp! but then 6 years Ago I was rushed into hospital for an emergency laparoscopy which ended in an appendix removal! so I then thought these pains that I'd had few and far between ( luckily) were possibly signs of a rumbling appendix. obviously not as it's happened a few times since.. 😔 there must be a reason as to why I wasn't coming on for months at a time and for this excruciating pain right?? I've recently had my 2nd pill review and I did tell the pharmacist how I was feeling and she advised me to exercise more and that was really it. I also went to have my smear test this week and I spoke with my nurse and she understood what I was saying but advised that if cerelle was keeping me out of hospital and reducing the pain, I should stick with it. I just feel so lost, I don't know what to do about it. 😕 thank you for reading!! you've been so lovely! xx

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Hi

I am on cerelle, after trying 3 other pills. I had the same issues as you, low moods particularly but i don't on cerelle. I was on femodette on and off for 8 before i realised i dont have to feel shitty and changed pills, dont make my mistake. Go back to your gp and tell them you want to try a different pill because its affecting your mental health. Give it a few months and see how you go. To begin with I had sore boobs and knackered but overtime it got better, now all i have is sometimes pain during sex but everything else is fine and my mental state isn't affected.

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Thank you, I keep saying to myself, ‘ stick it out, it’ll get better’ .. maybe you’re right. x

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Hey, I was on cerelle but it didn’t my periods and I suffered severe side effects with it including feeling down and a lot of weight gain which added to the feeling down part.

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Oh no, I hope you’re all better now ? x

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Yeah I came off it a while ago but now the doctor is forcing the combined pill onto me but keep refusing xx

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So are you not taking anything now? Do you feel better being off it?? I was prescribed it purely for pain relief and so I’m scared to come off it due to my pain coming back x

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Cerelle didn’t work for my pains that much but they did come back worse after being off it. I don’t want to take anything hormone related atm bc it messes my body up massively x

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I totally get that, that’s how I think, ‘ it’s unnatural ‘ and you just don’t know what’s it doing to you until it’s too late I guess. coming off cerelle to be put on something else to go through the battle of it settling into my body is a massive put off.

Don’t let the doctor force you into doing something you don’t want to do okay. x

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Yeah I’m seeing a gynae next week so I hope they don’t force them onto me xx

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Good luck with your appointment, let me know how you go? x

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Hi Joanna, I'm sooo sorry for the late response. How are you feeling? Wow you have had it rough, bless you. And still no inclination of why you're suffering the way that you are?! No wonder you're becoming down, it's such a lengthy and stressful process and with you getting no real answers or advice how are you expected to adapt effectively and create better functioning for yourself?! 😩Oh bless you! The doctors are most certainly not providing you with the best care, how is developing depression going to benefit you in the long term? You may be pain free, but you'll be miserable? 🤔how ridiculous! There must be an explanation as to why you didn't have a period for all the time? Did it just happen suddenly? Or had you been taking anything new? Had a procedure?

I understand your frustration around not wanting to go through the trial and error process, I found it so daunting and scary, like what are these pills going to do to me? 😱How are these pills going to negatively affect my life? 😩 have you tried the coil? Implant? Injection? These have all been offered to me. The implant only works when it's implanted, as soon as that's taken out your hormones resume back to normal. Which might be beneficial if you're worrying about eventually wanting to have a baby? Most contraceptive pills take a while to come out of the system before normal menstruation resumes, but you can plan for that in advance.

I think the majority of your frustration is coming from lack of information by the doctors! Trust your own body, and how YOU feel, if you don't want to slip into depression tell them that. It's just another thing to worry about and cause an affect on you, which is the last thing you need right now.

Weigh up the pro's and cons of staying on Cerelle & trying something similar to it, like Cerette? I also tried that, I think they're progesterone pills which are meant to be compatible with our hormone levels.

It sounds like you've had an awful time with all this, but you've got this far and I'm more than sure you can go further, until you're happy with your situation. There's always us ladies here, to guide and support you through the difficult stages of this awful condition! 😘💋Things can ONLY get better! Xxx

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Hi Becci, don’t be silly, no need to apologise!! we are busy bees! How are you??

I’ve had a rough weekend actually, I just wanted to sleep all weekend! my sleep needs sleep 😴 I should have gone out for the day on Sunday with my bf, but told him I couldn’t and I ended up sulking pretty much all day, he didn’t take it well either but we’ve managed to have a talk about how I’m feeling and I think he understands a little bit more now. I then had a breakdown at work yesterday..and felt like a complete idiot. I bought some iron tablets yesterday to see if they’ll help with the tiredness. we’ll see.

My periods have always been irregular.. it was quite normal for me to go a couple of months at a time without a period.. but 7/8 months and no explanation 😐 and then all that pain! Oh my life, I wouldn’t wish it on anybody! two ambulance call outs and lots of morphine later! I wasn’t on the pill or anything when that happened, no procedures done other than the laparoscopy for my appendicitis 6 years ago. I haven’t been offered any other options such as implant etc because I haven’t officially complained about cerelle to my doctor, I did however tell the pharmacist how I was feeling when I had my 9 month pill review last month, but she said I just needed to exercise more to get my spirits up a bit.

My worry is I want to ‘work properly’ if that makes sense,, I don’t want hormones pumped into me to make me feel like this and still not have a diagnosis! Although I know the pill is acting as a pain relief and it must be working in some way, shape or form because I’ve had no hospital visits since December luckily! But my periods are still not regular.. at all. I hadn’t had one since May until last month! seems mad I’m asking to have a normal cycle when most women want no cycle at all ! but it does worry me because I don’t have a reason for it. ( like you say) it’s lack of information. Do you think I have enough reason to push for further investigation in your experience? I mean I might NOT have endometriosis! I just do not know..

thank you for your advice as always. Much appreciated. xx

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I'm so sorry to hear this, but so glad I'm not the only one. I've been prescribed Cerelle and it's doing wonders if stopping my period and pain.

However after a week of constant crying - shouting and isolating myself - (and the other side effects weight gain/horrid skin/ tenderness/ headaches)

I decided to come off it for a week and give myself a break. Starting back on it today though, been trying to get in touch with gynaecologist but no luck.

Hope everything goes well for you xx

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You’re having the same thing as me! it’s horrible isn’t it? As if you don’t feel in control of yourself? it’s weird. have you seen a difference coming off it for a week? x

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Also, have you been put on cerelle due to a possible diagnosis of endometriosis? ( sorry if I’m being too nosey!) x

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It's horrible as well because people avoid you, I don't mean to be a blubbering mess or to shout or to be irrational- it's not me. Also yes - I'm expecting my first lap in Feb.

Don't worry about being nosey. I have noticed a huge difference coming off - it's like I'm a new person. Completely opposite to what I was. I've just started taking it again today, I'll let you know in a week how I am xx

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Hi, ive just been put on Cerelle, ive been on it for about a week and had headaches the occasional migraine and my moods have been all over the place, I want to give it a month just so that ive given it a fair shot. How did you get on with it? did you end up coming off of it to help or did things even out in the end? Thanks.

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Hi Rach890,

I’ll be honest, In any medical professionals opinion, a month is not a fair shot, and I tend to agree, speaking from experience, they say it takes approximately 6 months for an oral pill to get used to your body or vice versa.

I have now been on cerelle for 13months and the first 8 of those I was all over the place. Up down up down. Spotting, not spotting.. to the point I got very depressed. however, the last 5 months I’ve been ‘normal’ ..

you know your body better than anybody else, but when you feel like giving it all up, say to yourself, ‘ ok just one more month’ because if I hadn’t have done that and been strong about it I’d never have got through the levelling out of my hormones.

I’m sorry if I’ve been quite blunt, I do have a tendency to be very black and white. But I hope it helps you even slightly xx

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Hi Joanna thanks for your help on this. It's great to hear that it all levelled out for you. :) x

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I used to talk cerelle and suffered all the side effects so stopped taking it. I used to feel unmotivated and depressed all the time on them as I got weight gain, which got me feeling shit about myself. It was like a harsh cycle and used to cry over like a tv advert at some points haha.

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