Getting more endometriosis whilst on IUD? - Endometriosis UK

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Getting more endometriosis whilst on IUD?

Andy2019
Andy2019

Hi ladies, I wanted to ask if anyone has had the experience of having the Mirena IUD and endometriosis growing back whilst being on this type of contraceptive? Is it possible for the endometriosis to grow back once surgically treated and on the IUD?

I was diagnosed with endometriosis and adenomyosis and told that the IUD would help - especially more so for the adeno pains and to also keep the endo at bay.

I had my second laparoscopy in January, where my gyne treated endometriosis and inserted the Mirena as long term treatment. Aside from the excruciating labour pains I’ve experienced (when I was meant to be having a period) the heavy bleeding has subsided - which is great and the actual period pains are becoming more bearable/manageable as the months pass. However, what’s creeping up is that deep dull constant ache all across my lower back, which I feel is like the endometriosis pain I once had? This time it’s way more intense and much more widely felt amongst my lower back (which was where I initially had the most lesions) than it was before my surgeries.

I’m also apprehensive to talk to my gyne (BSGE accredited btw) about this as he seemed very adamant that the endo has been lasered off and that it won’t need reviewing for a few years at least. I know I also have to wait six months before the coil properly settles but I’m in a lot of pain and that deep dull ache really is haunting (considering I haven’t had this for a good three months after my op). Can anyone relate/has had similar experiences? Advice much appreciated and I hope you are all safe.

12 Replies
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Hello

So yes endometriosis can grow back even when on hormonal contraceptives. It doesn't stop it regrowing or anything. It's used as it can ease symptoms.

As you had surgery a couple of months ago it could still be that your recovering as it usually takes a couple of months to heal internally sometimes more depending on how much was done. And sometimes it may be what you over did something without knowing it which had caused the flare up of recovery pain.

My coil have me a constant pain when I had it in so it could also be that still settling in.

Andy2019
Andy2019 in reply to Christin_a

Thanks for your reply Christin_a. Yeah, I’m trying to be patient - especially as you must know how painful the coil can be. My worries arose on the fact I had absolutely no dull pains/aches and then suddenly this month it started creeping in on a daily basis :(.

And that’s what I thought about the endometriosis, it’s just my gyne made it clear that his belief was that it will not grow back and it’s gone for good. Hence why I wanted to understand a little more from other people’s experiences. Have a good day and I appreciate your reply x

Hi there,

Yes there is evidence that the marina coil helps to slow tissue growth and prevent new tissue or scars from forming.

Having it put in after surgery is for disease control and stopping regrowth, not just for symptoms, and so doctors know they can get good results with this approach 😊

Hello.

I’m so sorry to hear of your pain.

Unfortunately I too had my 4th surgery and fitted with mirena coil about 18 months ago. My pain started returning within months.

The mirena has made my bleeding less over time but that’s about all it has done.

When I saw my consultant in February he was disappointed that the “Miracle” mirena hadn’t worked as well as it does in so many other people.

I have since spoken to other people who have said their endo actually came back worse whilst having the mirena and all it did was disguise a fraction of the symptoms.

Good luck and best wishes xxx

Andy2019
Andy2019 in reply to Lily1986

Thanks Lily for your reply :). Yeah, I am worried that it’s growing back from the type of pain I’m having (the one I know feels like endo). What did you end up doing if you don’t mind me asking? I just want to get an idea of what path I can take if the mirena seems to be ineffective. It’s great in terms of bleeding as mines definitely slowing down but the lower back pain is such a sore.

I hope you’re well xxx

Lily1986
Lily1986 in reply to Andy2019

You’re welcome 😊

My GP referred me back to the gynae who did my last operation as he is an endo specialist. I was expected to wait 7 months for initial consultation but luckily still had private health insurance through work so saw him within a couple of weeks which got the ball rolling.

I’m currently on 3 monthly injections of decapeptyl which starts a chemical menopause plus oestrogen patches and using mirena as the progesterone part of HRT.

Further surgery is an option but he’s reluctant to do it so soon as believes a lot of my pain to be due to nerve damage and scar tissue damage caused by endo and also from surgery and could make it worse not better. Also because the last op they removed both tubes and an ovary there is little more they can do apart from hysterectomy but he said even then it would likely return.

Also I take pregabalin for nerve element of pain but that hasn’t done much.

It’s a nightmare really, doesn’t matter how much we try to help ourselves by having surgery it’s pretty relentless xxx

Andy2019
Andy2019 in reply to Lily1986

I’m so sorry to hear about the pain you’re going through but I’m glad we have this community in which we can all relate to! Hopefully the induced menopause will ease your symptoms and you get some positive results. It’s always an ordeal of what we have to go through. Praying a miracle pulls around, when it’s 6 months with the IUD for me but hey one can only hope.

Many thanks again for your response, definitely insightful and I hope you and your family are safe during these times :) xxx

Lily1986
Lily1986 in reply to Andy2019

Thank you and same to you too xx

It is definitely nice to have this community to chat to people in similar situations, it’s really helped me to know I’m not the only one.

As away from this there’s next to no one who understands and quite a lot of ignorant people who think they know every thing but really have no idea which is so unhelpful! Lol. Xxx

I really struggled when I first had an IUD put in, like you I had it at the same time as my laser surgery. It took more than 6 months for my body to settle down after the coil, I found a hot water bottle really helps. I am getting severe endo symptoms again after less than a year after my surgery so the ‘few years’ time frame is rubbish!

I would say you know you’re own body better than anyone. Endo pain isnt the same as the IUD pain for me, for one it hurts a hell of a lot more. If you’re worried about going to your gyne, get a second opinion. You shouldn’t have to worry about talking about talking to your doctor, endometriosis is stressful enough.

Hope it works out for you and you get some relief!

Andy2019
Andy2019 in reply to Disney89

So sorry to hear this, it’s so frustrating! I too can absolutely tell the difference between the IUD pain and endo - strangely enough but I guess we know our bodies well enough.

I’m definitely gonna try talk to my doctor one more time and if that fails then I’ll definitely look for a second opinion. Even though ironically he was my second opinion doctor when my first laparoscopy was a negative. I’m thankful he’s finally diagnosed me with endo/adeno but he’s very certain that there’s no way it can come back! Take care and stay safe - many thanks for your reply xx

Hi,

I had a mirena coil fitted a few years ago to help with stage four endo. Was fine for the first couple of weeks and after the first period I had horrific pains, much worse than normal. Went to the er and was told to basically suck it up and they wouldn’t remove it even though I begged them to! After following up with my gynae who sent me for an ultrasound it was discovered that it was basically too large for my uterus and was digging into the walls and also my cervix.

She removed it straight away and I was put on the jaydess which is similar but slightly smaller as well as progesterone only pills. This was a massive change and much less pain. A few months ago I had a total hysterectomy so no longer have a iud! I would suggest you don’t put up with pain if it is ruining your quality of life. Maybe ask about other iud options too. My endo never slowed down until I came off all of these and had 6 months of zoladex but by then I still needed a hysterectomy at a young age.

Andy2019
Andy2019 in reply to Nzendogirl

Thank-you so much for your reply! Definitely once quarantine is over I need to have a chat with my gyne again - especially as the cramps I experience after the IUD insertion definitely are 100% worse than my previous period pains (even though they have settled a little).

It’s also interesting as only this platform has shed light on the other IUD options such as Jaydess, I’m gonna have a look into this also.

I hope you’ve got relief now and peace with pain as we all know how much of a journey it becomes. Thankyou again for your kind advice and I hope you stay safe. X

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