IUD removal with general anaesthetic

[MoominBabe92]

Hi!

I have been living with suspected endometriosis since I was 14. Flooding, heavy periods and intense stomach and back pain have plagued my life.

In 2020 I was finally sent to see a gynaecologist after a decade of medical gaslighting. I ended up leaving with an IUD I never wanted or requested. The gynae traumatised and manipulated me into trying it, using covid waitlists and my own pain against me, assuring I would be fine as I am 'good with pain' ( I can't even use tampons) and that it was the only treatment option available to try.

I have GAD and she could see I was in the middle of a panic attack and went ahead anyway. When I tried to complain about her I was told she has retired.... I am still trying to heal from the experience. I spent months alone and in pain with hardly any support and no prescription painkillers feeling new kinds of pelvic pain I had never known before.

Three years later and I have gone up two dress sizes and I deal with more pelvic pain on a daily basis than ever before. I have also had a lot more bowel issues than before and my pmdd is much worse (also not diagnosed but my notes mentioned suicidal thoughts before my period, she fitted me with a hormonal mirena anyway)

My IUD has helped with heavy bleeding and my back pain... but now that I am so much bigger I fear the back pain will come back even worse whenIi have the IUD removed.

Last year a new gynae told me she would finally put me on the lap waiting list, which is honestly the only reason why I got the iud... so someone would finally take my pain seriously and investigate further (my internal ultrasounds always come back normal so I always feel like nobody actually believes me)

Anyway, I've recently found out she didnt actually put me on the waiting and is now claiming I needed another follow up before she would... I am beside myself. I am so lost and upset and I feel absolutely disgustedd with the treatment I have received. This doctor told me they could remove the iud when I have my lap and didn't even put me onbthe list. Insane

I haven't had the iud checked in 3 years and I haven't had my smear. I will not let anyone near me Ibdon't trust them.

I requested removal under sedation or with adequate pain relief, after 8 months the appointment comes through and it's a normal removal appointment. As usual my pain and trauma has been ignored.

I am so desperate I am happy to pay (I cannot afford it but desperate times) but cannot find anywhere online that will remove this iud under sedation. I tried the Surrey clinic which say they don't even tho they mention it on their website. I am getting increasingly suicidal as this iud remains inside me against my will. Someone please help!

All I wanted was a checkup and some painkillers and to be put on the waiting list and I ended up with an IUD that ruining my body and mind that they will not remove.

Typing through tears, any advice welcome x

[Coral07]

omgggg my heart is breaking for you please don’t cry!!! No lies I have just been through the same thing my mirena stopped working last November not took me untill September 19th to get it out and changed by then I had put on 3 stone had completely isolated myself through depression and pain I was stunned no one cared I was literally living hell on earth!!! What I ended up doing is I went to a solicitor who help me fight my side legally as everyone was insulting my intelligence . If I have an advice DO NOT give up never let anyone tell you about your body, here if you ever need a chat or a cry🤍🤍🤍🫶🏼

[MoominBabe92 in reply to Coral07]

Thank you so much for your lovely message! 💞 I am so sorry to hear you have been through IUD hell too, its heart breaking knowing how many of us are suffering and how they insult us and gaslight us while we lose control over bodies we had such little control over anyway

Im curious to know if you changed the IUD for a different one or did you remove it altogether and how was the removal pain wise for you? I just don't think I can go through the experience again without being knocked out completely!

Very curious to hear more about your journey with solicitors, I really hope you have every success, I suspected our treatment was unethical enough to involve the law! Also the NHS should not even be fitting IUDs if they cant provide removals as and when requested, adequate pain relief OR support!

Im not sure I have the means to explore a legal route rn but you are fighting the system for us all x 🙏💘

[Coral07 in reply to MoominBabe92]

hi, well I had my first mirena put in while i was in surgery in 2019 so I had no idea what pain was what when it come to getting it changed and a new mirena put in in September 18 2022 I had done my research and found every women said the same that it was very painful to get changed, my referral was put to an emergency with sedation as it was making me sooo it being in and not working but as I got there my form didn’t have pain relief down on it I was raginggg🤬 I explained my situation and that I deal with enough on a day to day baisic and the nurses were amazing and offered me what they could on the spot which was gas and air. The removal it’s self wasn’t too bad just strange feeling as it come out getting a new one put back in takes literally 10 seconds was a cramp type of pain and thaught I was okay then about 20 mins later not guna lie I was in so much pain I didn’t know if I was guna pass out throw up or poop my pants it was awfull😆😅 I would deffinatly recommend having some strong pain killers for the rest of the day after it then the next few days was just the usual period cramps as your cervix is adjusting to having something new in there.

The nurses and doctor did explain though if your a woman that has never had children the pain will be worse but women who have had children they seem to agree with the pain a lot better👍🏼 And I went though first4lawyers as my life was such a mess and I had no family to turn to I thaught it was worth a shot and everyone seem’d to take me serious once I had a solicitor, I hope you get the answers you want and the help you deserve! Never give up it’s always worth it in the end🥰

[FerrariEnzo]

I am so incredibly sorry for what you're going through. Fear over this sort of thing is why I've been refusing the IUD despite being very heavily pressured into it by multiple doctors (one even wrote that I'd consented to having it installed during my lap - after I'd consistently said no.. thank goodness for the surgeon checking with me first!). I even had my normal gyno quite literally shout down the phone at me when she found out I hadn't had it during the lap!

The only thing that I can think of is to contact PALS (patient advice and liaison service) for your hospital and explain the situation to them. Hopefully if you get someone good they might be able to help. Also where possible try to write emails, even if you've already covered it on the phone. It's more difficult to ignore an email as a lack of acknowledgement isn't professional and more importantly you have written evidence of your request and, if they've answered, of their reply. They also know that so may treat you better than they would verbally. If they refuse your request ask them to confirm in writing that they are refusing and the reason why. Again, this provides a record and they will know that so, hopefully, will be more careful and (hopefully) more helpful. Another possible avenue if you're able to go private might be to call a Nuffield hospital and see if they're able to do it. I only say this as I *think* I saw one that could do IUD insertion with sedation a while ago (though it was pricey if I recall correctly) so I'm wondering if they might consider it for removal. Can't hurt to ask at least.

It's truly horrible that you even have to consider all this and have to go through such a horrific situation. I am so very sorry for you. Try to stay strong, as hard as it is. I remember the horrific time I had on depo provera and the desperation I felt at being entirely ignored and brushed off when I was going through what I can only describe as pure torture. So I really, really feel for you. Keep chasing up. Unfortunately it seems they only pay attention to those who keep asking. I've learnt that through a horrific experience with a very close family member who we've now lost because the NHS ignored her *after* diagnosing her with cancer for 8 months. In that time they did absolutely nothing, not even a referral to an oncologist. Every time you called it would be "oh, okay we'll look into that for you" and then nothing.

The only time they took action was when we literally started to beg, wrote emails instead of calls and involved PALS.

You shouldn't have to fight so hard for care. It's so wrong. I really hope you can find someone soon who has compassion and who can help you.

[MoominBabe92 in reply to FerrariEnzo]

Sending endless solidarity, thank you for your kind message

I find the pressure around IUDs to be very dehumanising and I wish I had told the gynaecologist who manipulated me to try it for a second opinion and to back off but she was adamant I would be fine - bragging about how great she was at fitting them vs other gynaecologists! I also had some pain relief, but again there was no verbal confirmation of exactly what was happening but I fear it may have been the cervical block... as the most intense pain happened as the "pain relief" was given and when the IUD went in it wasnt as intense but I still fainted briefly. I am so shocked to hear how an IUD was almost secretly inserted *into* your body without any consent nevermind informed consent. It's so vile an unethical especially when they may help some issues but will likely cause new problems like "iud cramps" which are just new pains I didn't know before that are now part of my daily life. My back pain is better and now but I'm much heavier (size 12 > 16) I'm v scared it will be debilitating and worse when the IUD comes out.... much love to your wonderful surgeon tho! Finally someone fighting on your side

There was intense pain for days after firting, my body took a year to adjust to the hormones, it's not even just the insertion pain etc

I *know* my GP put something in my notes about the IUD despite me being clear over the phone that it was not an option due to hormones and pain. As soon as I walked in the gynaecologists door she hammered me about it, I literally thought I was having an exam! I had avoided the pill and other hormones for ten years despite the pain and heavy flooding until the IUD. It should be illegal for them to act like this and BPAS research confirms they pressure many women into trying them

Thank you SO much for the PALs suggestion I had no idea it even existed and I have already been emailing them, I really appreciate that it is confidential too as I have a telephone appointment with the gynaecologist who didn't put me on the lap list at the end of the month...

I find it so hard to find the energy and time to keep fighting them and stay employed etc and I often fall back into months of suffering in silence when I get an all clear test or result or face this level of ineptitude from medics, but this amazing community is really inspiring me to push on!

No luck on the IUD sedation front but I'm gonna make some calls tomorrow as anyone I ask over email isn't aware sedation for iuds is even a thing... thank you so much again.

My heart breaks for you, your family and the family member you lost to cancer, I genuinely thought this was more of a women's health issue but clearly its across the whole of the NHS, that's unbearable and will always remind me to keep pushing and not suffer in silence. I am so sorry they let you all down like that. <3