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Women's health

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Coming off desogestrel , making my life a misery

11 replies

Anxiousannie3 · 19/02/2024 05:20

Hi All, so after a little advice/ reassurance of coming off progesterone only pill /desogestrel. After the birth of my DS 10 years ago I was put on it as I was having horrendous periods that would leave me bedbound for 2 days every month, prior to that I was on microgynon and having withdrawal bleeds etc.

I insisted on investigations and had bloods and ultrasound done as to the cause of the pain, i didn’t really want to be on progesterone only but obviously it stopped my periods so no more pain etc. they couldn’t find anything wrong in the blood tests besides small “inflammation markers” but couldn’t tell me why and the ultrasound said I don’t have pcos or anything showing that could be the cause. A few shrugged shoulders all round.

i went for a routine pill check mid December last year and was put on a different type of progesterone only pill, called Lovima and since then I’ve had quite a few bad side effects that I didn’t get on the previous one (can’t remember the name but definately wasn’t this one).

the doctor also told me I was 2 stone overweight and I needed to lose it asap as I’m nearly 40. I explained I’ve been trying to eat less and walk 5 miles a week but nothing was working. She recommended water and eating less..!

all of January I stopped all snacks and wouldn’t eat any “junk” until the weekend, I was exercising regularly and doing everything right. But the end of the month I’d not lost a single pound! Which was really shocking to me as I’d been hungry most of the time.

at the beginning of January I had a week long period which was a surprise as I hadn’t had one in months , but understand sometimes you get breakthrough bleeds etc.

I’ve also experienced migraines which made me take a few days off sick at work, something I don’t usually suffer from.

The main issue I have though is feeling super super low and angry / sad most the time . I feel like I’m losing my mind over the tiniest thing.

Acne, heart palpitations, sweating when it’s not hot, can’t sleep, feeling physically exhausted and being forgetful are to name a few more symptoms.

I’m planning off coming off of it completely as of today so don’t know what to expect but I can’t live like this and would rather go back to being bed bound for 2 days every month . Does anyone have any similar stories / experience ?

OP posts:
Boomer1964 · 19/02/2024 05:24

Sorry no advice as such but have you thought about having a Mirena fitted? I had no periods for years and no side effects so it really suited me.

Anxiousannie3 · 19/02/2024 05:41

Hi, yes the doctor had previously recommended the coil but I really don’t like the idea of it to be honest.

OP posts:
solice84 · 19/02/2024 06:29

What reason did they give for changing the pill brand?
Can you ask to go back on the previous one?

solice84 · 19/02/2024 06:30

Ps. I know they push the coil but I'm with you on that one, it would have to be an absolute last resort for me and even then I probably still wouldn't

Anxiousannie3 · 19/02/2024 06:34

solice84 · 19/02/2024 06:29

What reason did they give for changing the pill brand?
Can you ask to go back on the previous one?

They didn’t give a reason , they just changed it- a friend of mine said it’s because it’s cheaper. I’m thinking of quitting completely though as I’ve completely lost faith in all the contraceptives , reading up on them I don’t want to be a Guinea pig and go through this all over again with another one

OP posts:
solice84 · 19/02/2024 07:58

I had a feeling it would be a cost thing

AttilaTheMeerkat · 19/02/2024 08:50

Have your thyroid levels been looked at? This could also account for the migraines, sleep problems and heart palpitations.

re your comment:
"I insisted on investigations and had bloods and ultrasound done as to the cause of the pain, i didn’t really want to be on progesterone only but obviously it stopped my periods so no more pain etc. they couldn’t find anything wrong in the blood tests besides small “inflammation markers” but couldn’t tell me why and the ultrasound said I don’t have pcos or anything showing that could be the cause. A few shrugged shoulders all round."

Who looked at these results?. Fibroids and particularly endometriosis can cause heavy bleeding and pain to arise. Endo is also not readily detected on ultrasound scans.

They do not know what is causing this and therefore they gave you the shrugged shoulders; you have been thoroughly let down. If you are not currently under the care of a gynae I would suggest seeing such a person asap.

Anxiousannie3 · 19/02/2024 12:08

@AttilaTheMeerkat thank you for your heartfelt and detailed post, you’re right, I feel very let down and failed and like Im
a bit of a burden to be honest! I have considered seeing a paid private GP but not sure if it’s worth it.

OP posts:
sashastuck · 24/02/2024 17:58

Just wanted to say, I’ve been on this pill for a grand total of 4 days and have been experiencing a couple of the symptoms you’ve mentioned. Mood is awful, I’ve got a 7 week old baby and this week is the worst week I’ve had in terms of tears and resentment towards DP etc - coincidence, I think not!! I came to mumsnet looking for similar experiences. Will be coming off asap and also not interested in the coil. Hope you can find something that works for you or get a diagnosis that helps you move forward x

AttilaTheMeerkat · 24/02/2024 18:15

If finances permit I would phone your local private hospital to see a gynae for an initial consultation.

Archer4891 · 03/08/2025 23:20

Know this is a super old post but wondered how you got on?

I feel like I could have written this post word for word myself and am adamant I am going to stop taking the mini pill!

Thanks!

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