Agony after stopping cerazette

[Elliem22]

Hi all. I’m new here so bare with me ☺️I’ve struggled with chronic pelvic pains for about 10 years now, I’m 23 years old and it’s never been put down to anything really. I saw a gynaecologist last year who is almost certain (as certain as she can be without a laparoscopy) that I have endo because of family history (mum and grandma have it) and my symptoms all link up but I cannot have a laparoscopy because I’m overweight and she said I can’t have it done until I’ve lost the weight and I’m trying to lose the weight but I’m really struggling (I take a lot of other medications for anxiety and IBS etc)

Me and my partner are trying for a baby atm (wouldn’t want to wait much longer in case I do have endo and things get worse fertility wise but we’re both definitely ready) so I’ve stopped taking my cerazette which I’ve been taking for about 2 years and I’ve been experiencing pain that’s gradually getting worse and this morning I’ve woken up having started my period (haven’t had a heavy period for about 5 years now because of contraception) and I am in absolute agony like before the pill. Don’t get me wrong I had bad pains whilst on the pill but this is another level.. I remember it being this bad about 4/5 years ago before I started any contraception.

I’m taking Cocodamol for the pain and using a hot water bottle (I can’t take any anti inflammatory like ibuprofen because of reflux) but I’m massively struggling. I just wanted some advice really on what others find helpful for pain relief and is there anyone else in the same situation trying for a baby? I’m getting an appointment with a doctor over the phone tomorrow to discuss trying for a baby and my medication so is there anything I should mention or ask? I’m not asking for medical advice just friendly advice from people who are experiencing the same thing! Sorry that this message is so all over the place but I’ve got a lot in my head that I need to get out 🤣 Sending so much love to everyone at the minute 🌈❤️

[fdennis07]

Hey, sorry to hear you are struggling with the pain! I had the same happen when I came off the pill to try for a baby (had horrific pains and landed up being diagnosed with stage 4 endo after having a laparoscopy). Unfortunately I am unable to have children due to the severity of the disease and so my advice to you would be to get help as soon as you are able from a gynaecologist (ask GP to refer you due to your painful periods).

If you want to wait for a few months to see if you get pregnant before considering being referred to a gynaecologist, unfortunately you just have to try and manage the pain as best as you can. I had naproxen and paracetamol which did nothing for me personally which is why I landed up being referred to a gynaecologist despite the fact that we were trying to conceive.

I've recently tried some patches from Be you period (can be ordered online) which have a cooling effect. I have found these better to a hot water bottle.

Definitely speak to you GP to see what they recommend is best for you (whether to hold off being referred for further investigation).

Xx

[Elliem22 in reply to fdennis07]

Hi! Thank you so much for taking time to reply I’m so sorry to hear about that, I hope you have a supportive network around you to ease some of your pain a little, sending so much love to you.

I’ve been referred and discharged from the gynaecologist about 4/5 times over the last 10 years it’s just frustrating that now they are willing to do the laparoscopy, they can’t because of my weight, I understand the guidelines and it’s for people’s safety but surely people can’t be left to suffer? Me and my partner just thought why not try now if a laparoscopy is out of the question.. instead of waiting another year for me to try and lose the weight for things to potentially get worse. I mean, fingers crossed I don’t have it but the doctor was pretty certain and I know that period pains this bad and debilitating aren’t normal. I’m going to call a doctor first thing tomorrow and have a long discussion about everything. Thank you so much for your advice! I’m going to order some of the patches to see if they are better for me! Love and healing vibes to you Xx

[rebekah2311]

Hi Ellie. I'm sorry to hear you are in so much pain. How lovely that you are looking to start a family. Wishing you and your partner all the luck in the world 💕

I'm 23 and I am waiting for a laparoscopy to definitively diagnose endo in my pouch of Douglas and/or bowel. I have been suffering with gastrointestinal symptoms and more endo-specific symptoms for years, to a lesser degree since I started taking the pill at the age of 16 (Microgynon -> Loestrin -> Millinette). I have recently come off the pill due to concerns about my blood pressure and am experiencing my first natural period in years. The pain is excruciating. So I can fully understand where you are coming from when you say everything is so much worse off the pill!

I think it's definitely worth mentioning on the phone with the doctor that you are really suffering at the moment with endo-related symptoms having come off the pill. There may be some treatment they can offer you that won't interfere with your fertility. The difficulty is they may be less likely to offer you treatment without a definitive diagnosis via lap. To this end, I think you should lobby for an ultrasound and/or MRI. Though not definitive, an ultrasound can help to diagnose endo and where it may be hiding: e.g. fluid where it shouldn't be, etc. MRIs can sometimes detect deep endometriosis. Blood tests and scans could also rule out other things that are very closely related to endo, such as polycystic ovary syndrome. It could also be peace of mind to get a full work up down there if you are trying for a baby and have a family history of endo!

Another thing: a diagnosis of IBS can be endometriosis in disguise. I have been told I have IBS since I was 12, due to chronic bloating and symptoms such as stabbing pain in rectum, alternating between diarrhoea and constipation - all worse during periods. These symptoms are often present with endo if it is in the cul-de-sac between your reproductive system and anus, or in the bowel. It is definitely something worth chasing up through different avenues if you are unable to get a lap at this stage.

Hope this helps and best wishes xxx

[Elliem22 in reply to rebekah2311]

Thank you so much for your reply! Oh my goodness, every symptom that you mentioned I can relate to so much! I’m so sorry that you’re experiencing bad pain and hope that the doctor can help you with finding out the source and treating it. I hope that your blood pressure issue resolves too. It’s so hard isn’t it suffering with the pain and also the side effects of the medication, it’s a never ending vicious circle. Sending love to you 💗

I did have an ultrasound early last year and I recall the doctor saying there was fluid on my pelvis which they said could be pelvic inflammatory disease and treated with antibiotics but swabs came back clear. I wasn’t aware that this could be a sign of endo too!

I’m definitely going to call the doctor in the morning and have a lengthy discussion with them about pregnancy and my medication and coming off the pill and the pain I’m suffering with and if a laparoscopy isn’t at all an option at the moment then what else can they do. I think coming off of the pill and symptoms just flaring up horrendously again shows that something isn’t right and needs sorting.

Thank you so much for your advice! I reply appreciate you taking your time out to reply to me. Sending so much love and healing vibes xx

[rebekah2311 in reply to Elliem22]

You are so welcome. Thank you for your kind words. I think this forum is just brilliant and every person I have spoken to has been lovely and supportive, including yourself! 💕

I have a very similar experience, you should definitely mention the fluid on the pelvis during ultrasound. I had fluid in my pouch of Douglas and the doctor told me that it was almost certainly indicative of endo, but it can happen in cases of pelvic inflammatory disease so I also had to do a swab to be safe. The swab came back completely negative for me too and I'm now waiting for the NHS to resume its proper functioning after covid so I can have my lap!

Also, I hope this doesn't come across as insensitive, but my mom was denied laparoscopic surgery for gall bladder removal by her GP a few years ago because she was told she was too overweight (she was around 19 stone at the time). Regardless, she pushed for a referral to a NHS consultant and he told her that the advice the GP gave her was terribly outdated and that there is no longer a weight limit to keyhole surgery. It is at the discretion of the consultant and the surgeon. I don't know if you have the option to "shop around" and ask for a referral to a different consultant, but it might be worthwhile if you are happy to undergo the surgery? The consultant's exact words to my mom were "well, you can't live in pain" (gallstones) and I should think the same would apply to you with the possible endo symptoms you are experiencing!

Do let me know how you get on tomorrow and fingers crossed for you. Feel free to message me if you want to talk about anything else. Sending well wishes xxx

[Elliem22 in reply to rebekah2311]

You’re welcome It is very nice having somewhere to go to air your thoughts and feelings and to have someone understand exactly what you mean.. I can see that our symptoms are very similar and we are the same age so it’s really nice knowing I’m not alone 💗

Oh so there’s a pretty good chance that the fluid on my pelvis is related to endo so I will 100% mention that to the doctor tomorrow! Oh thank you for letting me know about your mum, that’s really good to know, hopefully I’ll be able to get a second opinion. I remember the consultant being very firm with me and wasn’t very sympathetic at all, I was really upset so I think that’s why I’ve left it for a while but it will be good to get a second opinion if the GP will let me see someone else.

I definitely want to try to start a family first, which means sort of focusing more on asking about pain relief tomorrow but it’s all about waiting to see if any issues arise (fingers crossed they don’t) and then I’ll have to see why I’m not getting pregnant. I just don’t want them to think oh if she’s trying for a baby then she must not be too bothered about the pain.. when obviously it’s not like that but when you’re told you might have an illness which can cause fertility problems you want to try while you’ve got your best chance!

Thank you so much! I will message you tomorrow and let you know how I get on with the doctor ☺️ X

[rebekah2311 in reply to Elliem22]

Xxx

[Afrohair]

Firstly I’m sorry for your pain and struggles I’m ttc at the moment what I would say is you will probably get advised to loose weight and have a laparoscopy .and I would change to an anti inflammatory diet straight away and start on folic acid now.i don’t want to put a damper on your post you already sound stressed and depressed so I hope you don’t take offence to my post as a lap can help you conceive. you could still try for a baby but carrying may be a little painful I got pregnant and misscarried and experienced pulling pains but there’s nothing to say you can’t conceive till you try .you have every right to ttc now .tbh with you you don’t need appointments with your doctor till you’ve been trying to conceive for one year Usually but I’m guessing your underlying health issues are what’s causing you to seek help from a doctor I wish you all success on ttc x

[Babybobble18]

Hey my lovely,

I’m so sorry to hear that you’re suffering this way. I think sometimes getting pregnant takes longer with chronic pain because naturally you’re more stressed and so your body won’t be relaxed. I have been on cocodamol on and off for years now and I’m only 23. I had peptic ulcers and get reflux so NSAIDs are a no no for me too. However sometimes I think the cocodamol made the pelvic pain slightly worse on occasions due to the fact it constipates you. With regards to trying for a baby, try things to make you feel a little more relaxed and take some folic acid. With regards to the pain, it may be worth asking for an increase in dose of codeine if you’re on a lower dose maybe? I know there’s drugs like oramorph (they don’t prescribe it easily) and tramadol- a bit of a hideous one. I really hope that your body is just readjusting and that it settles soon.

Jess x

[Elliem22 in reply to Babybobble18]

Hi Jess! Thank you so much for taking time out to reply to me, I really do appreciate it! Yes I agree about the cocodamol and constipation, it’s a difficult one but hard to find any other alternative for me really. They tried me on just ibuprofen and I was feeling so nauseous and had an upset tummy and my reflux responded really badly so they said naproxen is an absolute no if I can’t stomach ibuprofen and they did try me on tramadol but you’re right it is a hideous one! I got the most awful headaches and I only took it for about a week, I couldn’t function, I didn’t sleep so I came straight off it.

I’ll definitely get some folic acid and ask about a stronger course of codeine. I really worry about the medications that I’m taking and about when I get pregnant, I know I’ll have to come off of a lot of them but I’ll ask the doctor tomorrow about that. I’ll have to just keep a close eye on my symptoms so I recognise pregnancy symptoms. I know I’m definitely going to need pain relief right up until my last period before I get pregnant that’s for sure. I’m hoping that too, that it’s only this severe because it’s my first proper period after a very long break from them and after a few periods it will settle down but knowing my past experience before contraceptives it’s unlikely, fingers crossed though!

Having not had a laparoscopy, I don’t know how severe my endo is or if that is even the problem (it seems very likely) so I’m hoping that it isn’t too severe and I’m able to get pregnant, trying while I’m still very young.

Thank you so much for your advice! Sending lots of love and healing vibes your way x x