Endometriosis UK
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Out of options? Endo and Mirena

Hi all! In May 2017 I had a laparoscopy to diagnose and treat endo and a mirena coil fitted. Before having my surgery I was put on every form of hormonal birth control possible with the same out come - severe depression. It was suggested I tried the coil as it has a smaller amount of hormones and it should help....but it turns out it has the same effect...and hasn’t helped!

I am still bleeding, I’m still in an excruciating amount of pain most days and I’m suffering with the depression.

I am unsure whether to have the IUD taken out or wait a little longer to see if it calms down. If I were to have it taken out I’m not sure what my next route would be? I’m only 19 and I’m not ready for a baby yet and I’m also not ready for a hysterectomy. I also have a tilted bicornuate uterus 🙄

Has anyone tried any alternative treatments?

Could anyone please give me advice as to where to go next?

I just feel like nothing I try works for me and I’m running out of options.

Thank you xxx

12 Replies
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ypu Say that you had a laparoscopy to diagnose and treat endometriosis, does this mean that you have had any endometriosis removed? I think that you can reasonably expect it to calm down in the 8 months that you have waited, I know it can take a long time but I would think that you have waited long enough. Did you go to a bsge centre? I would probably go back to have it removed or at the very least, go back to the doctor and explain. To me it seems like hormonal birth control isn’t for you - mirena coil, from what I have read; doesn’t work for everybody. If you have endometriosis, I would ask about getting it removed instead. On the NHS, they only offered me this in conjunction with ivf which kind of annoyed me - I have to make a snap decision about having children in a couple of months? Ridiculous! (not to mention callous misogyny) I’d fight for it though. It was the best thing I’ve ever done.

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Hi,

I had the endo they could see removed. It was burnt away I believe but I have been told it could have come back! It wasn’t a specialist centre but my surgeon told me he had lots of experience with endo...

I would like children but I’m definitely not ready right now. They’re really pushing me to think about it but from what I’ve read it’s not a cure and it’s definitely not something to take lightly.

Thank you for your reply I’m definitely concerning having the coil removed. Xx

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At 19!?! That’s too young to be encouraging someone to have children! Try and get an appointment with bsge centre if you can, they may have missed something. Good luck x

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Have you tired Zoladex?

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No not yet that is my very very last resort which I’m trying to avoid. I’ve heard a lot of negative things and I’m concerned about what the lasting effects on my body will be. Xx

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I used it and didn't have any side effects. I assume you've also tried the progesterone only pill?

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Yes, I’ve tried a few brands and even double and triple dosage... My biggest issue with Zoladex is if I was to get a bad side effect such as depression(very intense very quickly) I wouldn’t be able to stop it as quickly as I can with other methods (ie. stop taking the pills) as I’d have to ride it out until it stops working. I think I’d try it if there’s nothing else but I’m curious to see if anyone has tried alternative medicine such as acupuncture ect. Thank you for your replies ☺️ xx

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Hi, I tried acupuncture. Didn’t do much for me, although I was interested in how they talked about it. My acupuncturist said the energy in my abdomen was stagnating and so did lots of treatments to stimulate flow. This included heat, which was pleasant but only had a very temporary effect. I persisted for many months but I couldn’t see any significant lasting improvement. The experience did make me much more concerned to keep my abdomen warm. No more short tops! That’s the only things I really took from it. But everyone is different and who knows, maybe for some women it has worked.

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I have acupuncture, it helped a lot although there’s no miracle cure. I wish xx

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Hellybaybea is right get referred to a bsge centre. They are trained certified specialists. X

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Hi, I’ve had endo for 21 years now, I suffer with terrible depression whilst being on the pill so it was suggested that I should try anti-depressants. So I started taking citalopram 10mg, its worked wonders for me. It’s only a small amount but it really does help. It’s an option. Best of luck xx

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Hi lovely, I would make another appointment with your gynae as if you only had your endometriosis ablated instead of excised the bleeding could make the endometriosis grow back. You need to to discuss having the coil removed given it doesn’t sound like it’s agreeing with you, and to talk about having laparoscopic endometrial excision, as it removes endo at the root and then it’s far less likely to grow back.

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