does mini pill help symptoms

[sarniep]

New to this thread and hoping you can help me. Im so sorry to read all of your terrible stories.

My question is does the mini pill help symptoms of endo. I am convinced my 16 year old daughter has endo. We recently got her onto the combined pill which stopped her periods but in 6 weeks has made her gain significant belly fat. She also had the absolute worst pain ever when having her break week and withdrawal bleed. Her hideous pain instantly passed when she passed a huge clot.

I have read that the combined pill can make symptoms worse as it drives oestrogen and that the mini pill may be a better option. Is this anything you can can agree with?? We have a GP appointment next week and I would like to be armed with knowledge before I go.

Many thanks all..

[Moon_maiden]

I can’t help directly as I never used the pill but with all meds sometimes the only thing is to try.

My pain used to start easing once I’d passed a clot.

Have you looked at the Endo UK site, there might be info and there is advice on getting the best out of a consultation.

[sarniep in reply to Moon_maiden]

Thank you so much for your thoughts. Spoke to GP today which was helpful and as you say seems it’s horses for courses so …. Suck it and see.

[Moon_maiden in reply to sarniep]

It’s awful the lack of knowledge they have with this disease, hopefully your GP is semi helpful.

[PrettyRainbows]

Hello, I'm Stage 4 DIE. I've been on Cerelle (Progesterone Only) taken back to back so no period for 9 months. My consultant recommended it over the combined. It is definitely masking my symptoms overall and has made a difference. It's basically just acting as a bandaid. Of course everybody Is different though but all you can do is try!

[gardentink]

I’ve been on the progesterone only pill since about 2010 and I’m sure it’s part of the reason that I don’t have as bad symptoms. I’m still struggling to get diagnosed (lap was clear apparently 🙄) but I took a break from the pills a couple of years ago and lasted about 2/3 months before I went back onto it. The cramps and pain wasn’t worth it and they went away once I started on the pill again.

I’d been on the mini pill for the 5 years before that, but tbh it was so long ago I can’t remember how bad it was. I do remember running packs together though so that I wouldn’t get the break.

I hope your daughter gets some help soon, but she’s lucky to have you in her corner!

[Welshpearl]

Hi,

My 17 yr old daughter is also on the mini pill (Desogestrel). She is on 2 X tablets a day and has no break. It has been the best thing for her to manage her Endo and has been taking it continuously for nearly 2 years.

She tried 2 combined pills prior to this which didn't help her at all.

I'm so sorry your daughter is suffering, it's so hard when they are so young.

We first suspected endometriosis when she 14, her periods were so bad with pain, she was throwing up and doubled up lying on the floor with paracetamol not touching it. She was suffering with pain in other places, tops of legs, under ribs, pain with bowel movements and passing urine.

We battled for 18 months back wards and forwards with GP, after being told it could be IBS etc (even being told by one GP that she was too young to have Endo!!!!) She went for an ultrasound which unfortunately didn't pick anything up (they are not specialists in looking for Endo).

In desperation, finally wrote directly to the hospital who thank goodness wrote to our doctors asking them to refer her to the specialist Endo consultants.

My daughter had her laparoscopy (aged 16) last October where all her visible Endo was removed). Of course this unfortunately is an ongoing disease which will now have to be managed in the best way until her menopause.

We are in Cardiff and lucky enough to have 2 Endo specialist consultants.

If your daughter would like to chat to my daughter about what she's going through, please be in touch. I know how isolating it can be for them if there are no friends that are going through the same.

[sarniep in reply to Welshpearl]

Thank you so much for your reply snd openness. Im so sorry to hear of your daughter’s troubles but glad she’s feeling its now more manageable. I haven’t taken my daughter down the Endo rabbithole yet as it’s actually all quite depressing and chronic so i thought i’d drip feed things slowly according to how she reacts with the pill and then take it from there. I wish you all the best and we might come knocking on your social media door in the future.

[Welshpearl in reply to sarniep]

I completely understand, it's such a battle to get listened to let alone get treatment. I think there has been so much media coverage in the last 12 months that general GP practices are very slowly becoming more aware of the amount of sufferers and we hope there will be more treatments (hopefully non evasive) in the future. We got told at the post operative consultantation at the beginning of June that they are now not sure taking away the endometriosis does more harm than good overall due to the scarring that is left. They are currently doing trials that are looking into this too.

Please be in touch in the future if need be.

Wishing you all the best.

[sarniep]

thank you to everybody. Already you bunch of ladies are so supportive and helpful. After 36hrs I’ve been so enlightened. Thankyou all.

[Els123456]

hello, recently got diagnosed stage 4 and the mini pill has helped me with symptoms especially pain more than anything and little to no periods. Hope your daughter can get the right treatment. This pill is worth a try but can seem to have some impact on moods.