DESOGESTREL

[fdennis07]

Hey all,

Hope you are managing as best as you can during these difficult times. Unfortunately my appointment with my gynaecologist has been cancelled due to the coronavirus and as I have been struggling a lot with symtpoms (very painful periods and an endometriotic cyst on right which has been causing me agony on a daily basis), my doctor has put me on the progesterone only pill to help.

Can I ask those that have had this pill, does this actually stop your periods and how did you manage on it?

Xx

[Moon_maiden]

I was on it roughly December to March, can’t say it did much for pain, helped with emotions. Pretty sure still had periods, although everything was a bit erratic leading up to surgery early Feb, memory is a bit screwed 😂.

People react differently, so it may work a treat for you. Hope it does

[fdennis07 in reply to Moon_maiden]

Thank you Was meant to be starting Zoladex injections but my consultant didn't provide all the info to the GP about dosage etc and he is currently self isolating. Told he will let GP know info when he is back but as we dont know whe that will be, GP put me on mini pill to see if that would help in meantime...the whole thing has been a nightmare tbh

Hope u r feeling better now since your surgery xx

[Moon_maiden in reply to fdennis07]

Hopefully he’ll be back soon, you may have to contact the GP to chase, they won’t always remember and be proactive. Keep in mind the consultant is only likely to self-isolate for 14 days.

I have second Zoladex tomorrow, it’s not working after one, but I’m possibly still being impatient.

[Afrohair]

Worst thing I’ve ever been on made endometriosis worse and more pain spoke to a endometriosis specialist who advised me to get off I felt 100% better once off it constant bleeding from day one on this and spoke with many who have said the same but who knows it may work for you x

[fdennis07 in reply to Afrohair]

God that sounds horrible! I only started it on Friday which was when my current period started. Will see how it goes! Just want to be free from painful periods Easier said than done I know....

Are you on an other form of hormonal medication now?

Thanks for sharing your experience x

[Afrohair in reply to fdennis07]

No I’m on absolutely nothing I changed to the endometriosis diet and have supplements which help considerably I do have some posts on it which I will boost onto the page for you x

[jull]

Ive been taking these since September and they've completely stopped the horrendous pain I used to get.

I had spotting for the first few months which is what usually happens, but in terms of pain virtually nothing which is a massive relief, it's amazing not being in pain for a week every month, just hope it stays like this for as long as possible.

As someone else said it varies for everyone, it's impossible to say whether it will work for you or not.

It's currently working for me, where as the previous poster it didn't. Fingers crossed!

[fdennis07 in reply to jull]

Thanks so much for your reply. Nice to hear that you have had a positive experience which is great.

All we want is to be pain free and it is such a challenge to get that!

Are you on just one tablet a day (75mg I think)?

[jull in reply to fdennis07]

Yes just the one a day, 75mg. They're really small which is good, I hate taking tablets. I try and take them around the same time every day about 2pm, good luck!

[TheLittleMermaid30]

So sorry your appointment has been cancelled, it’s really annoying not having an idea of when you’ll be seen.

I’ve been on desogestrel since late Feb of this year. I was only diagnosed in late Jan 2020 and have stage 4 endo (it’s everywhere; bowel, urethra/bladder, left and right side ) and it is also presenting in my belly button. So officially have umbilical endometriosis as well.

1st month was fine on desogestrel. I had a few spots pop up on my chin the first couple of weeks and some mood swings settling into the pill but for the most part I was perfectly fine on it.

Only bad part was I started spotting down below and bleeding from my belly button around the time that I would have had my period. It was quite heavy spotting but not comparable to a proper period and lasted about 2 weeks.

2nd month has been okay so far, but again started spotting around the time my period would have been. However spotting was minimal and lasted about 4/5 days. However belly button has been bleeding every day for 2 weeks and counting! I spoke to my Gynae nurse and she recommended doubling the dose and said it’s safe to do so. She did also mention it takes 3/4 months for your body to adjust.

It has improved for me over the couple of months I’ve been using it so seems to be working somewhat. I’m hoping my next month there will be no spotting and no belly button bleeding at all.

I think give it a go and see how you feel but it’s best to give it a proper try because your body can adjust despite how you feel at the start.

In terms of pain management, I don’t suffer too much from pain apart from my belly button on bad days. I changed my diet to two plant based meals a day, cut out red meat and dairy and also take Biokult (I’ve found it’s the best probiotic for me) twice a day and that helps significantly. On bad days I use regular ibuprofen and paracetamol.

Good luck!