Did anyone else feel like they were being... - Endometriosis UK

Endometriosis UK
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Did anyone else feel like they were being pushed into having the mirena coil?

GrayGray08
GrayGray08

I was diagnosed with endometriosis in 2014, and after multiple hospital appointments and doctors appointments with the suggested treatment just being 'pain killers', I kept pushing and pushing for more information. That's when I started to be told that I needed to have the Mirena Coil, 'told' being the key word. Every time I voiced a concern for this form of treatment I was essentially told every bad story I'd heard was a lie, that there was no other treatment available for me, and I was kind of bottlenecked into trying it. I also now have ovarian adhesions, and not one doctor I've seen will answer me how having the mirena will help these adhesions. I just feel like I am not being given the options of making my own decisions regarding treatment, Has anyone else felt this?

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Hello

You aren't alone in this, I know others have felt like this. I'll be honest I've been very lucky and never felt pushed into any direction, but it did take me 12 years to get a diagnosis.

Remember it is your choice, and if you do not want something that is completely up to you. The mirena won't do anything for adhesions you already have. Its the same school of thought as why people are suggested to go onto birth control, to try an minimise symptoms of endo.

Personally I'm going to give the mirena ago I've read everything that can go wrong, but also read how much is helped others. And I've been on one type of contraceptive pill or another for the last 14 years. Some have helped my symptoms others haven't my current one used to work better for me so looking at the mirena.

There are only a few recognised options for us to help; surgery, pain killers, hormonal birth control/menopause injections and diet changes. Some people say acupuncture, meditation etc help.

Just remember it is your choice and if your dr is being to pushy tell them! Tell them they are being too pushy and that you don't want it.

Hello

Thank you so much for your reply it really means a lot!

I’ve been looking into a lot of alternative ways of dealing with my symptoms, when I was first diagnosed they told me they didn’t even think about it as a possibility before my first surgery because “I was too young” (I was 18) so I’m conscious about not being swayed in directions that don’t feel right for me.

Thank you again!

My GP pushed me - I really didn’t want it as struggled with hormone medications. I only had it 4 months before my specialist removed it as I became severely depressed and paranoid!

You will read good and bad stories about all medications on here. Ironically I got on fairly well with zoladex which you will find bad stories about.

Please read my recent post about the Mirena. I was pushed into having it, the crash after removal has been the worst period of my life and 14 weeks on there’s no sign of my period and the hormonal imbalance has caused vulvodynia. I wouldn’t wish the coil on my worst enemy xx.

I have felt exactly the same, have been told the coil is my last option apart from childbirth, despite my small, tilted womb and vaginismus, as well as a previous bad reaction to progesterone, they keep trying to force it on me despite them knowing I don't want it! You know your body best, while it's incredibly frustrating to keep having the same option pushed, it's your call at the end of the day and a half decent doctor should respect that x

It’s really difficult because I feel like I have to listen to what the doctors are saying but at the same time every time I ask them a question they can never seem to answer it. Because I never feel like I’m getting answers is difficult to make any decisions without feeling swayed!

I feel exactly like this. I am still in the midst of trying to get diagnosed and before they have carried out any in-depth investigation. I’m being told that I should have the coil, by everyone. Like are they getting commission for just handing out the coil to as many people as possible!!

I was definitely pushed into trying the coil I refused a number of times then had to go to dr's one day to ask for a referral to see the gyne again and there was a locum Dr on and he basically said that if I don't try the coil I won't get referred to see one I said forget it I'll wait to see my own Dr he just said it will be on your notes so your own Dr will say the same, so felt I was pushed even shoved into trying it, so I tried it only having been right myself that It didn't work only made everything 10x worse (pain was unbelievable) went back to see my Dr so I could ask for it to be taken out after a month of agony he said the other Dr should have referred me and not Forse me into having anything, safe to say I've not since seen this locum again, stick to your guns and tell them NO don't ask me again xx

I felt like I was being pushed into the Mirena as well, but I think my doctor was more clear why...in my case it related to the worsening migraines with auras I was having alongside way more increased pelvic pain so she worried the eight years I've been on the same hormonal pill haven't been too good for me and I needed to get off pills in general. I still don't fully understand the correlation, and why the coil is supposedly superior for pain management/pelvicconditions (while endo runs in my fam and I literally have every other problem under the sun there and pcos, I haven't been diagnosed with endo yet) but I was scheduled for a lap a couple weeks after and she knew I probably would be more on board if she inserted it same time while I was under.

She wasn't wrong there, but pretty much even wearing tampons when I can I've always felt like you may as well be gutting me alive, so I fear I would feel the coil or get even more inflamed with one. My best friend with no pelvic problems got one and it was more along the line of nightmare stories like I read about. They totally seem like a great option that really helps people, but I really don't think it will work for me, so I never did get it. Happily I was also suspecting the worsening migraines were due to a new bladder med I was on, so I waited to hear back from my Uro first, and after switching off that one the migraines got back to the less frequent with not much aura, so I think that was the cause. Unfortunately I just had all my problems flare at once then, but I'm happily still on a pill. I know eventually they'll want me to switch cuz my gyn keeps saying pill isn't good forever? But at this point I'm so much lighter and mostly regular, I really don't want to change what doesn't need to be fixed really. I see tons of ads now for Mirena, maybe I'll hear more current facts and stories with that when I start thinking about it again.

I’ve been under the gyni for 4 years.. I had my lap 2 weeks ago and was told the only thing left was a marina.. I voiced my concerns and was then told ‘well do you want a full hysterectomy at 20 years old then? because that’s the only other option’ In the end I gave up I wasn’t being listened to about the concerns I had. I have had the coil in 2 weeks now and I’m going to give it another 2-3 weeks as I know it can take a while to settle in but if it hasn’t improved it will be coming straight back out again, listen to your heart xx

That’s a terrible thing for your gynaecologist to say! There are always other options, second opinions, natural methods and it breaks my heart that you had to give in to this thinking. Absolutely listen to your gut on this one xx

It’s too late i’ve had it done.. but SO regretting it, it’s been in 2 weeks already had 2 a&e visits and sent away so just stuck now 😩 never felt pain like it - its 10x worse than my normal endo pain x

I would really advise listening to your body. If your body is in worse pain now than before then it isn’t right and needs to come out xxx

could I PM you? I know you’ve had experiences with it i’m just not sure if this is normal all of the problems i’m having xx

Yes of course please do or add me on Instagram Kitty_pert xx

The problem with things like the Mirena coil and Zoladex is it feels like a lottery - for some people they are a miracle cure whilst for others they leave them with even worse issues. The coil was a hoop I had to jump through with my menorrhagia which I never wanted. Luckily for me I had a large fibroid filling my womb cavity and it was expelled almost immediately. The ultrasound lady who went looking for it told me it should never have been fitted in the first place. Sigh. I know now it would never have worked for me as I eventually had no choice but to take the highest possible oral dose of progesterone (3x2/day) to stop me haemorrhaging before my hysterectomy and it still failed!! I had to be fast-tracked. Anyway...

I know from experience that it is extremely difficult to be assertive with consultants who frankly, tend at best to be somewhat arrogant about their knowledge and experience. It goes with the territory, but that doesn't help when you're trying to get the right treatment for you. If possible, take a very assertive advocate with you to appointments who can help you to stand up to the consultant for what you want and need. If all else fails, complain or say you don't feel a rapport with your consultant and ask if you can see someone else.

Yes, my gp and most my gynaecologists have pushed the Mirena Coil and could not understand why I didn’t want to. I was adamant about this and said it quite clearly which I felt they didn’t like but this was my decision and mine only not theirs. You do what feels best for you but do your research.

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