Desogestrel & symptoms

[Patricia2022]

Hi everyone,

I was wondering what were people's experiences with desogestrel? I am not diagnosed yet as my MRI came back as 'normal' which is very frustrating as I am stuck now. I started desogestrel around a month and a half ago and have been bleeding most of the time, the pain is less frequent but still happens (pelvic pain, leg pain), I still get days where I have to pee multiple times an hour and my extreme bloating has not reduced at all. I also still get really bad ovulation pain in my groin (always left side). I would appreciate any advice or shared experiences as I am struggling to find answers, to believe whether it is or isn't endo, and cope with all these symptoms which unfortunately have not really improved. Thanks x

[Rubybasset]

Hi,

I think unfortunately it is one of those things that is a bit different for everyone and you don’t know how it will work for you until you try it. I’ve been on desogestrel since the end of march (had to come off the combined pill as I had blood clots so I started anti-coagulants at the same time). The first period was horrific in terms of bleeding, lasted 3 weeks, went through 3 boxes of super plus tampons, a box of regular and a couple of packs of enormous sanitary pads. This was possibly partly because of the anti-coagulants though. One plus I had was no pain and no tummy/bowel trouble, which are my usual problems with periods. Second period was very light, didn’t even need a tampon and lasted 10 days, and I’m just on the third now, which is the same. You might find that you settle down after a couple of months, but I only had symptoms when on my period, so sorting those out solved the problem for me.

If you haven’t already then it’s worth searching for other threads on desogestrel, cerezette, mini pill as there are other experiences on there - some people have double dosed under the advice of their doctor because they had issues with heavy bleeding. It’s worth having a look and then perhaps going back to the doctor if it doesn’t settle soon. Fingers crossed for you 🙂

[Patricia2022 in reply to Rubybasset]

Hi Rubybasset, thank you for replying! I'm glad your periods have become lighter, I hope it stays like this I have read about double dosing I will definitely discuss at my gynae appointment in september. My only worry is that last appointment with gynae some of my symptoms were dismissed as 'unrelated' such as my blood in urine or frequent need to pee..

[Rubybasset in reply to Patricia2022]

It sometimes feels like they only want to deal with one thing at a time! It could be unrelated but if so what are they doing about it? It’s still a symptom of something, you shouldn’t just be left floating with it. I don’t know about the blood in your urine but the frequency of need to go could be due to endo - prior to my laser lap about 10 years ago I kept having what I thought were urine infections but it turned out one of my ovaries was stuck to my bladder and that was causing the problem. The endo is almost like glue that sticks things together and pulls them out of position, so it could be a factor. The mri could show if things are out of place but I’m not sure it can be used to confirm endo, I thought the only way to do that for definite is with a laparoscopy, so it’s worth checking if you will get one of those. The gynaes aren’t always right, I had my first laparoscopy nearly 20 years ago in my mid twenties and the consultant kept saying they wouldn’t find anything because I was too young and it turned out I was riddled with endo, the op took about 4 hours instead of 1! Keep asking questions, and if the gynae won’t deal with it go back to your normal doctor. Endo can cause a lot of knock on problems so I think we sometimes forget that we can get other things too, and you don’t want to miss a potential problem in your kidneys for example whilst being focussed on endo. You would hope that the mri would pick up on something like kidney stones or another obvious problem that would cause the bleeding but I do wonder sometimes if they actually look at everything they can see or just focus in on the thing they’ve been asked to look for.

[Patricia2022 in reply to Rubybasset]

Yes definitely, they should still be doing something about it. Thank you for your advice and sharing your experience!

[Tina32]

Hi, I've been taking desogestrel since last October. I was previously on the Yasmin pill for a long time but had to come off due to my blood pressure. I didn't initially get on well with desogestrel at all. I had non stop bleeding for almost a month at one point and irregular bleeding at other times. I spoke with my GP about it and we were in agreement that I should increase the number of pills I take to 2 a day. I started doing this in January and there has been an improvement although I still get irregular bleeding which is very annoying as the bleeding can happen at any time and last for any length so I feel I always have to be prepared by carrying around sanitary products. The irregular bleeding does not seem to be lasting as long so I'm hoping this continues to be the case as time goes on.

When I started desogestrel I was told by my consultant gynaecologist to give it 3 months and monitor my symptoms. It was after about 2.5 months that I had enough and spoke to my GP. My pain symptoms have been well managed on both pills I have taken.

It is even more difficult if you have not got an endo diagnosis but that is not necessarily a bad thing. There are a number of pelvic conditions that can plague us so it would be good if your medical team can do some more investigations to figure out what is going on.

I would agree to do some more research on desogestrel on reputable support websites as not everyone knows for example that you can increase the dose of desogestrel. I read this on a website and suggested it to my GP.

I wish you all the best with it

[Patricia2022 in reply to Tina32]

Hi Tina32, thank you for replying! I will definitely be discussing it with the consultant once I have done the 3 (or near 3 months), glad to hear it managed your pains. It is difficult as I have not had an official diagnosis, only clinical by my gp as from ultrasound, urine/blood tests and MRI they cannot see anything that would explain my symptoms. I bleed a lot less with a lot less pain on this pill which is a blessing but not doing so much for other symptoms unfortunately. Will discuss the doubling with my gp, thank you for your suggestion!