What on Earth next? Mirena my only option? - Endometriosis UK

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What on Earth next? Mirena my only option?

emmaquinny profile image
9 Replies

Hi everyone, it's a while since I've posted and I've been on the mini pill to try and help my symptoms. (Bladder pain, bowel pain/diarrhoea, excruciating cramping, stabbing pains in my vagina/anus, extremely heavy bleeding, bleeding between periods, sciatica, exhaustion-all symptoms started around Jan this year and had got progressively worse)The consultant I saw said I should try mini pill or mirena. I went for the pill which I've been on for three months now, and I've not stopped bleeding, however the bleeding is lighter than it was. I'm still in some pain everyday, and when the bleeding gets heavier I end up bleeding after passing stools. I've been to my GP this morning who said basically I need to try the mirena before anything else can be done. I'd tried to avoid it as I'm worried about weight gain/depression and felt I would be more in control to stop it if needed with the pill- you hear a lot of horror stories about the mirena. I already have a copper iud that's been in since 2013 without issue up until Jan.

I'm a teacher due to go back to work and I know I won't be able to rest etc like I have been now the holidays are over.

I just wish that there were more options? I asked about doubling up the mini pill I'm on, and she's looking into it. I suppose I will have to bite the bullet and have the mirena inserted? I just want to be normal again 😖

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9 Replies
Fabbird profile image
Fabbird

Hi, I've used the Mirena for years. It's a much lower dose of progesterone than the mini pill so you should get less of the hormone side effects (depression, weight gain). The issue is usually whether you can tolerate the fact of it being there. But if you have had an IUD already maybe you'd be OK? I get the impression that it's easier for women who have had children.

emmaquinny profile image
emmaquinny in reply to Fabbird

Thanks, it's great to hear a positive experience, I do have a copper one in now that they would be changing, and I've had a big 9lb baby so my uterus has been stretched! X

I'm in exactly the same posititon as you: mirena being the only option and going back to work with kids in September. Luckily the mini pill is easing some of my pain but the side effects are evil, so I'm saving doubling up for if the pain starts coming back or getting too much to handle. The idea of the mirena puts me off entirely and I'd absolutely rather not have something up there (given I also have vaginismus) and not being able to make changes if it doesn't feel right. Might be worth asking for a referral to a BSGE clinic or another gynaeo team given GPs are generally pretty useless at making these decisions! All the best x

emmaquinny profile image
emmaquinny in reply to

Thanks so much for taking time to reply, I was very apprehensive about having the copper iud I have in, but it had been perfect for four years until these endo symptoms started. Did you get advised from your gp to double up on the mini pill when needed? I know what you mean about side effects- I'm the pmt queen and my boobs feel so sore that it reminds me of breastfeeding! I will ask about a referral tomorrow when I speak to go again. Thanks for the advice I hope you get sorted soon too x

in reply to emmaquinny

I was told to double up if "I needed to" which is very vague, but I've only been on it a month and a bit and it's reduced my pain loads so I said I'd stick it out til at least 3 months before making changes! And right??? I went from an AA to a C in a matter of days and my nipples feel like gravel, I'm so snappy and emotional and it just makes me feel generally bleh!

emmaquinny profile image
emmaquinny in reply to

Just spoken to my dr who hasn't heard of doubling up so that's not an option. I will be making an appointment to have the mirena put in, but I will have to wait until next half term I should think 😖

in reply to emmaquinny

I was told just to double up when and if necessary, there's lots of Google info on it so it's worth a try x

Fabbird profile image
Fabbird in reply to emmaquinny

If you are going to try the Mirena, see if you can find someone who regularly does them. You need special training to insert them correctly. Few GPS have this and few do them really regularly. I was advised to go to a family planning clinic or sexual health clinic. Last time it was the latter and the doctor who did it had ultrasound to guide her. I had a lot of confidence in her (south London, if that is near you just message me).

emmaquinny profile image
emmaquinny

I've just had a look and the hospital I have been to see a consultant at actually has a BSGE clinic, however as I've not had laparoscopy for official diagnosis I can't imagine being referred there? And I can't get a diagnosis until I have spent further months in this agony trying other hormones etc! Catch 22! I've read it on here before, can't help thinking if this was an issue that also affected men there would be a cure by now!

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