EXPERIENCES WITH DESOGESTREL????

[Surfingblue]

Hello, I’ve just been put on desogestrel after having endo removed laparoscopically with the doctor hoping that it will completely stop my bleeding due to excessively heavy bleeding which we haven’t yet manage to control successfully. I’m 18 so things like ablation/hysterectomy isn’t really appropriate for me at this point in life. Just really like to hear experiences with it and whether it did stop bleeding and helpwith pain too?

[Rubybasset]

I was using the combined pill to control my periods but have had to come off that due to pulmonary embolism as oestrogen increases the risk of blood clots. I have been put on desogestrel instead as it is progesterone only and am halfway through my 3rd pack. I am also on anti-coagulants and was told that that would make my periods heavier as they make my blood less sticky. My first period came within days of starting both tablets and was a bit of an eye-opener - I bled very heavily for 3 weeks, but only had a few minimal cramps and actually (sorry tmi) even my bowels were pretty normal (I usually yo-yo between constipation and diarrhoea on my period and am very uncomfortable). I have been hoping that the heaviness of the period could be partly due to the anti-coagulants and partly the change in meds causing a good clear out.I am now a week into my second period and it is too light to bother with a tampon, with no pain at all so far, and I’m hoping it will reduce even further as I go on with it. I am very happy and wondering why desogestrel wasn’t presented as an option before but that’s probably because they’re more interested in pushing the coil on you at my surgery.

The only slightly negative effect I seem to have is that my skin has returned to its natural oily state so I’m not so much glowing as floodlit and a bit spotty round my shoulders but hopefully that will settle with time. Also it’s a bit annoying not knowing when to expect your period but I can live with that.

Everyone’s experience will be slightly different, but I was really worried when I had to change onto it (even the doctor said the next few months might be horrible but we had no choice) and I have been pleasantly surprised, especially now the bleeding seems to have reduced significantly. It is probably the least intrusive option for you so worth a try? You can always look at something else in a few months if it doesn’t work out.

[Surfingblue in reply to Rubybasset]

Thank you for your response, yes I was on the combined pill and had to stop due to a blood clot. My doctor did say to expect irregular bleeding and to bare with it a few months as it takes time to work, I'm just praying it does ease the heavy bleeding as its so exhausting and kind of traumatic even though I've put up with heavy bleeding for 8 years. Would also be a bonus if it reduced pain! I was told if this doesn't work prostap should work but there's the element of menopause and at my age I can only have the injections for 2 years. X

[BeUa]

I have had the pill before and hadn't helped. I'm in a place now after having early menopause injections for 4 months which I don't agree with to trying HRT patches, mirena coil and the pill to ease my symptoms. I am a lot older than you but, trying all contraception first helps - I'm at last resort as I have tried a lot of them to be honest and nothing is helping me.

[KittyCatRockstar]

Hi, I was on desogestrel for almost a year and it stopped my periods (which was great for me as mine were very heavy and painful). Every couple of months I’d have a spotting episode that left me with painful cramps, diarrhoea and nausea that would last a few days then go away. Unfortunately I had to change back to a combined pill as I had a hormone imbalance which caused the spotting and cramping to last for weeks in the end. Hopefully you will have a better experience and if this doesn’t help there are plenty of other options out there x

[NavatheDarker]

Hello, I am sorry to hear that you are diagnosed so young but then again perhaps it is better that it didn't take years. I was diagnosed when I was 24 years old (after almost ten years of gaslighting by doctors) when I almost lost my kidney due to endometriosis in my ureter. I had laparotomy surgery to remove part of the ureter affected by endometriosis in 2012. It was a very long recovery period after that, including nephrostomy, ureteral stents and induced menopause for two years. I read the comments, and it seems like everyone has a different experience but I would like to share mine with you - as I always wished that someone told me possibilities for the future when I was sick. Like BeUa, I had early menopause injections. I was in menopause around two years then started using various contraceptives. I haven't had periods between 2012 and April 2022. After ten years of hormone treatment and having no periods, I couldn't do it anymore so I stopped last month. My experience with:

1) combined pill for a while - it was too much for me, I think it increased my blood pressure so doctors (in Sweden) changed it to desogestrel.2) I used desogestrel 75 mg. for years. For a couple of years my blood pressure went back to normal.

3) In 2017, I got diagnosed with rheumatoid arthritis (Sweden). Following the diagnosis, I read peer-reviewed articles showing the relationship between hormones and rheumatoid arthritis. So I really regret being on hormone treatment for so long, to know that it might have triggered RA, but there was no way of knowing it. I do wish someone told me about this possibility though, so I decided to write to you.

4) In 2019, I got diagnosed with high blood pressure (UK) so I am on treatment for RA and blood pressure currently. The doctors in the UK didn't bother to change my contraceptives but prescribed me blood pressure pills.

On April 14th, 2022 I stopped using desogestrel and I had my first period in ten years within 15 days.

I believe with every comment here it gets more confusing, I am sincerely sorry for that but I thought I must share my experience.

[Surfingblue in reply to NavatheDarker]

Thank you so much for taking the time to respond it is much appreciated, I'm so sorry to hear about everything you've been through, you are so strong! I must say I've never been keen on taking the pill but once endo was diagnosed I didn't seem to have much choice. I was advised to have the mirena during surgery but refused it due to side effects and experiences I've heard. I was told if this pill doesn't help I will have prostap injections which does concern me with being young and studying for my future. I'll just have to see how everything goes like with most things endo related but thank you for your reply. X

[NavatheDarker in reply to Surfingblue]

No worries, good luck with everything!

[EndoQu]

Hello ☺️ been on it for a month and a half now. Stopped my periods but I have spotted im between. It's doing absolutely nothing for my chronic pain 👌, I'm not diagnosed btw, but I suspect it's endo.

[Avourneen]

It did stop em bleeding but I had to take a double dose of two pills a day for it to do so. I didn't realise it was linked with developing RA but also having endo is linked with developing RA. what I will say though is that it often just masks eno sypmtoms because you no longer et the dreadful periods but in a lot of women it doesn't stop the endo growing. So you feel better but when you stop in some women your endo has got loads worse.

But anything that stops you having periods should help at least with the pain. X

[Surfingblue in reply to Avourneen]

Thanks for your response, yes it does concern me that the pill will just mask symptoms so I will try and keep a close eye on everything as much as I can! Xx