Cerazette / Bowl Endometriosis

[Felicity91]

Hi All!

I was diagnosed with endometriosis many moons ago and they put me on the pill levest.

Fast forward to 2022 and I started getting new pains, after a long battle the Doctors in April 2023 diagnosed me stage 4 endometriosis, it has spread to my bowels along with many other places.

They out me on the pill cerazette in an effort to stop my periods, immediately after starting Cerazette my symptoms vanished!!

10 months in and a lot of unpredictable bleeding it seems to of settled and my last two periods have started around the 1st every month.

Unfortunately, the symptoms that sent to the doctors are returning. They used to be so bad that I would be bed ridden for weeks at a time. I can feel my body regressing and I am at loss for what to do next, should I continue on cerazette to see if it stops my period? Should I be starting something new?

I know no-one can tell me what to do next, but if anyone has any experiences that may be relevant please do share....

[Moon_maiden]

Hi

That’s great things did settle for a bit. A bit of a reprieve.

If it was me I’d go back to GP and ask, also you might need them to refer to Gynae again depending on how that was left and you’re better getting that process started sooner than later.

[Luc81]

Hi, You need to see endometriosis especialist. Not just any gynecologist. They put you on pills becsuse they don't know anything else. Try Nancy's nook on Facebook, there is a list of best doctors and surgeons for endometriosis. Lots of information about endo and hormonal pills. Also try to read "heal endo "book. It's great explanation about endo and will give you some guidance.

Good luck. Endo is hell but with the right surgery and lifestyle it can get better I promise. X

[Tiddler90 in reply to Luc81]

I second Nancys nook, didn’t realise how ill informed I (and the medical world!) was about endo until I found that group. The pill doesn’t stop endometriosis growth and I would strongly recommend seeing a specialist - someone with stage 4 endo should not be being fobbed off with just the pill - that requires surgery to remove it. Good luck, I understand the slog of fighting for good care for endo

[Avourneen]

Ask your gynae if he/she would suggest doubling the dose. That's what they did for me I take two pills per day and it stopped all the bleeding and went back to being okay. But do go to see your gynae and get another scan, the pill masks the worst symptoms but it keeps growing so it's a good idea to see how it is spreading you might need an excision op.

[Felicity91 in reply to Avourneen]

Thank you for the information I will definitely discuss this option with the Doctors. Can I just ask did your periods stop all together with taking the two pills? Also was the pill Cerazette?

[Avourneen]

Hi yes they stopped completely within about 3 weeks. It was cerazette but i think deostrogel etc are the same. I started on doestrogel and bled for about 4 months on a single dose then stopped and aftre 6 months I started to bleed again so the specialist doubled my dose , I changed to cerazette as it is easier to buy on line. It stopped really fast and I have had no bleeding for four years now.

[Felicity91 in reply to Avourneen]

Last question!!! Are you still taking two tablets a day?

[Avourneen in reply to Felicity91]

Yes sorry for dealyed reply still taking two tablets per day. xx

[Felicity91 in reply to Avourneen]

Evening,

I just wanted to jump on and say thank you for sharing you experience with I have been advised to take two cerazette pills for now. I have an appointment with my specialist mid May and I guess I'll see where I go from there.

Its only been 4 days of doubling up so lets see how I go.

But thank you for taking the time to reply, the Doctors can all be so contradicting which is so frustrating... it's nice to have some support from fellow Endo'ers. xx

[Teemaurica]

I have the same. I was recommended to have the coil and take lacolose everyday to help with movements going to the toilet. Still waiting for another operation to remove the cysts from the bowels. I started with the pill and implant but caused me to bleed everyday. I returned to the doctors and they gave me 1 tablet to take that stopped the bleeding more or less within a few hours. the did try and give me the monthly pill to stop the bleeding but did not work on my 2nd visit they gave me the other tablet. the implant wasn't the best for me so I switched the injection ( as the coil scared me to have done ) thr injection worked brilliant, no bleeding pain or periods. you can take a year supply and do it at home yourself every 3 months. As long as pinch the skin before Injecting it do not hurt. I do mine on the top of my leg as the doctor made me inject myself infront of her then gave me 3 boxes to take home to save appointments every 3 months. I think the injection would be the best for you along side lacolose to help with the toilet x