Mirena coil ?

Hey there Becca,

You are in exactly the right place and welcome.

The Mirena/Provera method of treating atypical hyperplasia and early stage cancer is indeed still in its early years as a method of suppressing and curing those conditions. However the data they are getting is really very positive.

I was diagnosed last December with endometrial cancer as well as atypical hyperplasia, and was fitted with the coil, and given Provera tablets as well because the coil alone wasn't enough to stop my bleeding. By July this year it's all completely suppressed and there is no sign of either condition at all.

So the method definitely works.

You'd need to be on the treatment for at least a year, then you can talk with your Drs to see about coming off to try for children again if that's something you wanted.

Also, in the beginning you should be given a Hysteroscopy every 3 or 4 months to check and see how things are going. It's very common for there to be little to no change at the first check up. But there should be a change at the second. So they usually advise to try the treatment for at least 6 to 9 months as it takes time to work.

This is possible because most endometrial cancers are slow growing, and there is nothing to say that atypical cells will ever take the next step into becoming cancerous.

With my experience, I'd def recommend the hormone suppression treatment, because you are closely monitored and it's not an imposition on your life. Also, a hysterectomy is major surgery that will bring on the menopause. And as you're young, an early forced menopause could bring about health issues in the future. So if there's a chance to avoid that, it's definitely worth a shot.

If you've any questions at all, please don't hesitate to get in touch!

Lass

Xx

Hi Becca,

If you want to give a medic a call to talk through your worries about trying the mirena coil you can call the eve appeal, they are at:

https://eveappeal.org.uk/supporting-you/ask-eve/ 

They have a gynaecologist nurse specialist who answers the calls.

After my initial biopsy, and before my hysteroscopy, they thought I had atypical hysreplasia and planned to treat me with a mirena coil. My hysteroscopy however found cancer (I had a pretty big tumour) and they then advised me to have a hysterectomy (I'm 37 and have no kids). That's all the treatment that I needed. 

If I was in your shoes I'd want to ask the doctors how often they would offer me check ups (repeat hysteroscopies) if I chose the hormone therapy. I'd also want to know how quickly they would do an op if I changed my mind or found it wasn't working.  It's worth asking how long it would take to get a hysterectomy now, it could be that the wait for the operation is actually a long enough time to pilot the hormone therapy and see how it goes before you confirm your operation or keeping on with the hormone therapy. 

if you choose a hysterectomy, or eventually need to have one, you could ask about other options to preserve your fertility, and whether they would be suitable in your case. 

I think what you are doing now is a really good idea, gather as much information as you can and then do what you think is best for you, there is no right or wrong answers, all we can do is what we think is right for us at the time.

lots of love

xxx

Hi 

thank you for replying , I’ve struggled quite a bit with asking questions and trying to make a decision because it’s quite a big decision to make at 30 ! 

I have been given the provera tablets aswell , I started them today . Because of the high dosage I have to take 8 in the morning and 8 at night.

i was told I would have a check up after four months and then again 6 months later , but I am a bit of a worrier . I don’t think I would be able to manage dealing with the worry of it coming back and me having the hysterectomy anyway a year down the line or it spreading ! It’s all just so confusing for me !! 

It’s good to know that it has worked for you though! I have struggled quite a bit with the coil , I have only had it in 2 weeks but I have been in quite a bit of pain and have had lots of bleeding but they said these tablets should help that ! 

Thank you for helping me understand it a bit more xx

Was dose are your Provera? That’s a lot of tablets a day! 

Hi

Thanks for replying , I didn’t ask how long it would take if I chose to have the hysterectomy but I think I neee too ! Sometimes I wish they never give me the option of trying the coil/hormone treatment as it’s such a hard decision to make and one I can’t stop thinking about ! 

I’m struggling with the decision but know it needs to be the right decision for me , I have a meeting with the fertility doctor and a geneticist (I’m not really sure what’ that’s for !) so once I have spoke to them I will make a final decision! I sometimes think that for them to give me the option of a hysterectomy means that they think it should happen because of how final it is , if there was a different way of treating it without it they would go towards that idea , I don’t know , I do tend to worry and think a lot about things so I’m sorry for waffling ! I just wanted to hear about other people’s experience before I made mine.

thank you x 

I was prescribed 80mg but they’re 10mg tablets ! Yes I know ! It’s going to take a bit of getting used to taking that many tablets a day ! 

Hi Becca,

I'm a worrier too, I've no idea what I've had done in your shoes, I think I'm glad I didn't have a choice. 

The genetics test will let them see if you have any genes which mean you could develop cancer, even if you do have a gene it doesn't mean you would actually develop one though. Genetic testing also means that if there is a fault they can target the treatment and provide more screening. it also helps to know what type of cancer you have, as that helps determine future treatment too, but as your cells aren't actually cancerous yet I don't know if they could tell, it's worth asking about though. For example, my cancer is oestrogen receptive so HRT is off the table. 

I thought that whilst I was waiting on my operation my cancer cells were shooting around my body and growing really big, but the reality is that they don't grow very quickly, especially when they are low grade. It took from February till August for me to be diagnosed and have my operation and I had symptoms for a really long time before that. 

Its great that your hospital have set up all the appointments with specialists for you, I'd recommend asking if they have a counselling service, I found it really helped me deal with my anxiety and helped me work through the shock of what had happened in a relatively short time..

lots of love

xxx

Hey Becca,

The coil can be a right b*stard at first. It took mine a good 3 to 4 weeks to settle down, so stick with it and take pain killers if you need to. As for the bleeding, I'm guessing your endometrial lining was thickened. The Provera on the coil and that you're taking orally tell your body you don't need the lining. So your body is getting rid of it all, giving you what is in essence a giant period.

I was 30 when I found the lump that diagnosed me with thyroid cancer, and 36 when they diagnosed me with endometrial cancer. So I can understand a little of where your mind is at right now.

You say the hysterectomy is final, so if there were another option wouldn't they be trying that first - well, that's what this hormone suppression treatment is. This is the treatment that does work, so folks don't have to go through the hysterectomy unnecessarily.

A dose of 160 isn't that high. I'm on 180 twice a day, so 9 tablets morning and night. Which brings me to a minimum of 28 a day. Lol. You get used to it and soon it just becomes habit.

Right now, it's all at the forefront of your mind so you're thinking about it a lot. But as time goes on, it just vanishes to the back of your mind. The tablets become habit so you aren't even thinking about taking them or why you are taking them, and life just goes on. If they thought you were at risk of it becoming cancer - because it has to become cancer before it can spread - then they'd have told you that. The reason they developed the hormone suppression treatment is because doing a hysterectomy for low grade cancers, and atypical cells that weren't even cancer yet - was seen to be a massive overreaction. Especially in women who were in their 20s and 30s.

So def give the Eve Appeal a call tomorrow as Arla suggested and they'll be able to put your mind at ease further.

Lass

Xx

This thread is being marked for retention by the moderator, as some members are still finding this useful.

Thought I'd share an update on my Mirena experience so far.

The biggest gain is that I've rid alot of abnormal cells and womb thickening is down by 10mm.

Bleeding also stopped a few months in temporarily.

It feels like lots of hysteroscopy and US/TV checks.

My Mirena is causing ovarian cysts, unfortunately.