Stopping Cerazette

[Bookworm3371]

First time poster, but I’ve taken many tips from this board so thank you all in advance. 2 years ago I doubled over in agony, eventually got sent to A&E via my GP with suspected appendicitis. Wasn’t appendicitis, it was a haemorrhaging ovarian cyst. Sent home with painkillers, had a couple of scans and was told months later it had calmed down. Unfortunately every month since then I’ve been in the same agony, always right after my period - no matter how many times I tell them it is AFTER my period, they still tell me I must be mistaken and it must be before. Anyway… fast forward to now, moved area, new GP, finally got a gynae consult and assumed I had made progress. Was told I have endometriomas on my ovaries, adenomyosis and possible endometriosis. I was very lucky to have a brilliant sonographer who took the time to listen to my issues and investigate as best she could.

The gynae told me to have the coil as that’s the treatment - I asked if it would help with the pain, and she shrugged. I don’t want the coil for various reasons so was told it would have to be the mini pill, again shrugged when asked if it’ll help the pain. I’ve been on it a month and it’s been awful. My pain is flaring up everyday, it’s day 13 now and I think I’m losing my mind, I can’t think straight, I’m struggling to do basic things like food shopping and my anxiety is so high I’m having constant panic attacks. I had severe PND after my daughter and it’s worse than that. I need to come off the pill before I completely lose my mind, but I’m worried there is no other treatment. I’m on Naproxen (and antacids) plus paracetomal for the pain but they don’t really touch it. I’ve been told codeine and tramadol would be next but it’s not ideal to be on them long term as they’re addictive. The GP (who is being quite helpful and isn’t shrugging) also mentioned amitriptyline as an option.

Super long way of asking if anyone has come off the mini pill despite it being the only treatment on offer currently? I’m waiting for my GP to contact me but could be a while and just needed to reach out so I don’t feel so alone in all of this. Since the pain started 2-3 year ago, my life is a mess

[anonymousunicorn]

Hiya, I was the same with the mini pill, felt so much worse mentally and did not stop bleeding. I managed 6 weeks before calling it a day.

I am not 100% about a coil as to me it’s the same hormones that my body is reacting to and I have heard of people having side effects but being refused removal.

So for me it’s as you’ve said painkillers central until I get into the endo clinic for excision. Not easy but I have found codeine to be really helpful if I only take it intermittently so far not addicted in 3 years of taking it. I saw a tiktok about a new non-hormonal treatment being trialed in Edinburgh I think but at the moment you are right, hormones or painkillers are the only medications as far as I know..

[Bookworm3371 in reply to anonymousunicorn]

Thank you, really appreciate you taking the time to reply. It scared me how bad my mood had gotten today, and I’m still in agony so think I’ll stop it for now and see if the pain settles back into it’s usual pattern and try and work the painkillers better. I was only on ibruprofen and paracetomal after my c section yet they don’t touch this pain, it’s like I’ve not taken anything. Naproxen slightly blurs it but it’s mostly riding it out - which is easier said than done when you have an actual life (or would like to have one) outside of rolling about in pain.

[purpleblondie]

Hey Bookworm3371,

You are not alone in your experience with Cerazette. I was put on it back in December. I stuck it out for about 10 weeks and came off it because I couldn't take anymore of the myriad of things it caused. Plus it actually made my Endo pain more persistent. It was like being in a permanent state of severe PMS. I was bleeding for the six weeks, non stop. I had panic attacks, grief like depression where I would cry non stop. I had mood swings so bad my family were actually on-guard around me. My boobs were paining me constantly. I gained weight. I was permanently bloated. My skin went red, blotchy and pimply like a teenager. My face was puffy. I had joint pain and worse back pain than my usual Endo related back pain. It also caused constant pelvic pain, the same pain I usually get around ovulation but every day instead of cyclically. Needless to say, I was miserable until I decided to stop it. I went to acupuncture immediately after stopping to try to resolve the hormonal issues it caused. That definitely helped.

Anyways, point being I had a horrible experience with Cerazette. and I tried it to see how I would react to the hormone before agreeing to the Mirena(as said previously its same hormone in both just different delivery system). Needless to say, I won't be getting Mirena fitted.

I can't take anything codeine/morphine based so I can't speak to many of the painkillers but I find Difene 100mg suppository good alongside paracetamol for severe pain days. It's a 16 hour, slow release anti-inflammatory. Suppository form works for me as NSAIDS hurt my stomach. It helps me get through the work day on a bad Endo day with paracetamol and I only have to take paracetamol whilst at work.

Hope all this helps.

Good luck

[Endolemon]

Cerazette gave me 3 weeks of bleeding 🤦🏻‍♀️

I got Prostap injection after, which helped a lot.

Ask you GP for prescribed pain killers Cocodamol, Solpadol… it is better then live with pain.