"It felt like labour": Doctors would not remove Jessica's Mirena IUD, despite what it did to her.

This is one woman’s experience and should not be interpreted as medical advice. 

The Mirena IUD.

A small, T-shaped device containing 52mg of the hormone levonorgestral, placed into the uterus by a trained medical professional

It is a lifesaver for a number of women; resulting in less period pain or even no periods at all – that said, I want to be upfront, pointing out that hormonal treatments/contraceptives are NOT one size fits all.

I’ve had a history of endometriosis since age 11. That’s right. ELEVEN. I was just a kid. Looking back now I’m grateful because I had my mum by my side. She had suffered the better part of two decades with her own endometriosis/adenomyosis issues; so recognised the signs in me early on.

I had a severe reaction to being placed on the pill, Levlen, resulting in a trip back to my GP for a referral to a specialist. After seeing an Adolescent Gynaecologist, I was told I have a sensitivity to the hormone, levonorgestral, and to ”never, ever let anyone place a Mirena in you”.

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Unfortunately this gynaecologist wasn’t available and I ended up seeing a new gynaecologist. Skip to May 2012. One laparoscopy under my belt, a definite diagnosis of endometriosis and suspected diagnosis of adenomyosis.

My gynaecologist was concerned as my surgery was only two years prior, so instead of continuing on the pill, she presented the Mirena as the “best” option for me. I repeated what my previous gynaecologist said – she refuted the claims as “misinformed”, “the Mirena only delivers a very small dose”.

I reiterated the issues I’d had on the pill that contained the same hormone as what the Mirena contains. She asked me how bad my pain was; if it’s as bad as I said, why wouldn’t I try something that could help me? Apparently current research said it was the best treatment for adenomyosis. If I didn’t like it, she would take it straight out, she said.

Six weeks later. I was suffering like never before. I’d experienced a constant period from the day of my surgery and was still experiencing pain, which I hadn’t this far post-op last time. My gynaecologist said it was normal and “give the Mirena 6-12 months to settle”. She wrote a prescription for anti-inflammatories and the pill. I was concerned about the double up of hormones, but she insisted it was safe.

Within a couple of weeks, the bleeding finally stopped. I didn’t get a long break though, getting the worst period of my life so far in October. I struggled through work but eventually needed days off. I stopped the pill for a week and started up again, in the hopes it would stop the bleeding.

A few weeks later I’d been having severe pelvic pain again, expecting my period. I got home from work, grabbed my heat pack and was making a cup of tea when I collapsed in the kitchen. My younger siblings heard me fall and found me.

To this day, I can still remember the look of fear on both of their faces. They were 15 and 13 years old. They yelled out for my dad. My dad carried me to bed, the rest of the family followed. I was in excruciating pain and really nauseous. My stepmum called for an ambulance.

The pain had been exceptionally bad all day, despite taking all the types of pain relief medication I had. She was told to drive me. A trip to Emergency later, any acute cause for the pain had been ruled out.

Come November, another pain episode. This time, I went to Emergency at the Private Hospital my gynaecologist worked at. I was admitted overnight for further testing and they called my gynaecologist.

She said the pain was most likely from my digestive system, and to see a gastroenterologist. My stepmum had been doing research on my symptoms and had come across a link between the Mirena and my issues.

I asked my gynaecologist about the chance of the Mirena causing issues and she flat out denied it. I asked her if she could remove it for me, just in case, and she refused. It had been six months since the date of insertion. This was the first time I realised she had lied about removing the Mirena at my request.

My body was no longer my own. No one told me by accepting to have a Mirena placed, it would be left in my body against my will, despite all protestations.

After her refusal and nothing really helping my pain despite strong painkillers, which are NOT a good option long term, I set about a mission to have this Mirena removed. I asked my GP, “No, I’m sorry but I’m not qualified to remove it. You will need to see the gynaecologist who placed it”.

I kept getting severe flares of pain. I’d be told to present to emergency, they would treat my pain but always refuse to remove the Mirena.

Regardless of whether it would help or not, I just wanted this damn thing out of my body.

Come April 2013, the pain was back, along with new symptoms. This time, I spent almost a month in hospital. At the end of my stay, a year to the day after my Mirena was placed, it was finally removed! Daily begging seemed to work!

The process of having it removed was funny. As I wasn’t in a women’s hospital, they didn’t have the spotlight the gynae needed. A nurse ended up holding a torch as the gynae inserted the speculum and grabbed onto the Mirena strings. I had two doctors and a few nurses in the room at the time, with my vagina on show. I couldn’t care less, I just wanted that thing out of me! I felt instant relief when it was finally removed. I swore then and there I’d never, ever allow anyone to talk me into a Mirena again.

I felt back to myself again only a few days later, which made my decision even clearer in my mind – I just couldn’t tolerate levonorgestral. I felt so much clearer mentally, was far more rational and less emotional. I kept taking the pill and managed to avoid my periods. I also got a new gynaecologist.

Now we are in 2018. I have a son, in his first year of life. My pain steadily returned after having the Mirena removed and I’d had another two surgeries with endometriosis excision each time. Unfortunately the pain just kept coming back. I was still getting flare ups but when they ended, the pain was never completely gone. Just slightly improved to a point I could semi-function. I had quite bad pain throughout my pregnancy – note to anyone reading, pregnancy is NOT a treatment method or cure for endometriosis or adenomyosis.

I saw a new gynaecologist and was placed on a waiting list for surgery. Through his recommendation and assurance it was the “gold standard with the best results in treatment and pain relief”, I stupidly ended up agreeing to try the Mirena again. “You’ve had a baby, your hormones may be different now”, “You’re older now, you’re already in daily pain, what have you got to lose?”, “If you don’t like it, we can take it out”.

Just two weeks after having Mirena #2 placed, I knew it was a mistake. Three weeks after having it placed, I was back in Emergency. My body was trying to reject the Mirena. No wonder I said it felt like labour. Trying to give birth to an IUD. Still, they wouldn’t remove it.

Eight weeks post Mirena #2 found me back in Emergency, begging for the Mirena to be removed. I had taken pain relief at home, doing all I could with mindfulness and pelvic stretches to help the pain. Nothing was helping. I was taken straight to a bed upon presenting to Emergency. It then took hours before I saw a doctor. In which time I received no pain relief, yet being in pain with the intensity of labour.

When the doctor finally came in, she grilled me on why I was there. She stated the Mirena wouldn’t be causing the pain. She asked if she could do an internal exam. I consented, on the condition she gave me adequate pain relief before attempting. She then gave me less pain relief than I’d taken at home, and left me for some time while it “kicked in”. As expected, it did nothing, as the dose I’d taken at home had worn off.

The doctor came back in and I told her my pain was not controlled. She promised to be gentle. I begged her to remove the Mirena for me, she was already doing the exam. She just had to lightly pull the strings. She refused. As she tried to insert the speculum, I screamed and a nurse came in.

I screamed because the metal speculum was getting caught on scarring from my episiotomy scar. I asked her to remove the speculum, add more lubricant and try again. She didn’t listen. I felt the speculum catch and scratch me on the way in, I screamed. She said she could see one of the strings and then it was all over. I still don’t know why she would put me through so much pain and get so close to being able to remove this device I clearly did NOT want in my body, to just “take a look”.

I sobbed the whole way home at how I was treated. This is my body, but I don’t have the right to ask for a foreign body to be removed. Not just any foreign body, but one that releases a synthetic hormone into my system that impacts my mental state. My husband asked me, do we need to lie and say we want to conceive again in order for me to have this thing removed? It’s a great question. This is something that should be straightforward, it is my body and I don’t want the Mirena in there anymore. I had already gone through the pain of a speculum exam, why not just pull it out at the same time?

This is happening whilst having a hormone released into my system 24/7 that my body is sensitive to, causing hypersensitivity and extreme emotional responses. It is a recipe for disaster. In someone less emotionally supported, I shudder to think of the consequences of this type of treatment.

My reason for sharing my story is that no woman should ever have to endure a treatment option they object to. Nor have their right to request its removal taken away from them.

For anyone reading this, DO NOT allow yourself to be pressured into a treatment option that you don’t agree with or feel fully comfortable with. If you or anyone you know are in a similar situation to myself, please stand up for yourself. It is your body and you have a say in what goes into it.

We, as women, deserve far better treatment.

Do NOT let doctors dictate what goes into your body – the same goes for any type of contraceptive.

We deserve to have our pain recognised and treated, not left to suffer.

Who’s with me?

This post was originally posted by Endo Mumma and has been republished with full permission. 

If you, or a young person you know, is struggling with symptoms of mental illness please contact your local headspace centre or chat to them online, here. If you are over the age of 25 and suffering from symptoms of mental illness please contact your local GP for a Mental Health Assessment Plan or call Lifeline Australia on 13 11 14, or beyondblue on 1300 22 4636.

Have you had a negative experience with contraception? Tell us in the comments.