Being forced to have marina coil and the pill , in desperate need of another laparoscopy

[Nogranola]

I have endometriosis and ive already had one laparoscopy. I really need another but before they will do ive been forced to have the pill and coil. I am being told I have to have the morena coil. But I'm so scared. I have very heavy big clots. I've already had two different types of cysts. Hopefully they were removed but I'm not 100% sure that both were. And I've been told to take the pill desogestrel. Has anyone else had either the same pill and or coil together? And how was it for you. I've read about both and apparently both can increase the chances of getting certain cancers. I'm so petrified. Any advice would be welcome. Thank you in advance 🙏

[CathyEarnshaw]

Hi there

I’m so sorry you’re having this experience. Firstly, you do not have to have the coil or go on the pill before being allowed a laparoscopy. If you don’t want to try either the coil or pill this is completely your choice as a patient. If they withhold another laparoscopy because you won’t try the coil or pill this is a breach of NICE guidelines and your right to informed consent as a patient.

If I were you, I’d write to your specialist by email and explicitly say that you do not consent to having the coil or pill, and that their withholding of other medical treatments (i.e. laparoscopy) is coercive and a breach of your rights as a patient. It’s sad that you have to put this in writing to be listened to - but I’ve found it usually works because it creates a paper trail. Make sure you ask them to acknowledge they’ve received your email by replying to you.

In terms of the coil, like you, I had serious concerns about it, and had to fight hard not to be pressured into it. I did try desogestrel and my experience was awful - my already heavy, clotty periods became so bad I couldn’t leave the house and almost ended up in A&E. Of course, this isn’t everyone’s experience and some women do get on well with this pill.

I’m now on another pill, called Qlaira. This has made a huge difference to my pain and bleeding. But I had to go private to be recommended it because it’s rarely prescribed on the NHS.

I hope you find a solution to your symptoms that works for you. Remember - it’s your body and no one can, or should, pressure you into doing anything you don’t want to.

[Nogranola in reply to CathyEarnshaw]

Wow this is extremely helpful and exactly what I will do. Thank you ever so much. Amazing help. I'm so grateful. Thank you 🙏

[Nogranola in reply to CathyEarnshaw]

My boyfriend has just read this and told me that this advice I'd absolutely PERFECT and he's helping do the email as of now. So thank you from the bottom of my heart. This could really be my way to getting what I want without being tortured with the coil and those awful pills. You are a godsend. Thank you from the very bottom to the top of my heart 🙏❤️

[CathyEarnshaw in reply to Nogranola]

You’re so welcome! I know what it’s like to have drs pressure you into having a treatment you don’t want - it’s truly horrible. It makes me particularly angry when they use manipulative tactics like this - they actually aren’t allowed to make you have a coil fitted, it’s completely against informed consent.

Make sure you use the word ‘consent’ in your email - it’s far more effective than just saying ‘no’.

I can’t guarantee that declining the coil will get you on the laparoscopy waitlist faster - but sending the email should stop the conversation about the coil and mean your consultant focuses on other treatment options. I found some options weren’t even offered to me until I’d declined the coil - which is so wrong and unfair.

Good luck with getting the treatment option that’s right for you. Xx

[Pea12l]

I think your doctor might have a rationale why they think mirena coil and pills are the better options at the moment. Since you are not happy with this, maybe it’s time to have a frank conversation with your doctor. Tell them about your fears. Discuss all the benefits and risks of each option and why they think its best to delay or avoid laparoscopy. I find articles and websites tend to emphasize on risks, but some may not be applicable to you, or risk might be very low. You can always speak to another doctor if you don’t think this one is not empathetic or clear.

[Nogranola in reply to Pea12l]

Brilliant. Thank you so much for your response. That is very helpful

[Earthmother1]

Hi! I've had both, and I was bullied into having the mirena coil after my laparoscopy in 2019. I didn't want the coil, the consultant put one in after my laparoscopy and lo and behold within weeks I was getting pain, I was sent for an ultrasound and it had moved! So then had to be removed! So I decided to go on desogestrel as in my eyes it was the lesser of 2 evils, I was on it for 5 years and whilst it stopped my periods, it didn't stop the growth of endo, it possibly only slowed the growth of endo, as I started to have endo related symptoms such as pain and bloating and the abdominal area felt "full" according to the dr, though I wasn't having periods. The desogestrel worked for me in stopping the periods, but I did suffer other side effects, such as, loss of libido, lack of motivation, poor mental health, weight gain, apathy, fatigue. I felt like I was stuck in the week before my period! But I never connected it to the pill. I have a genetic mutation that predisposes me to certain cancers, but I'm in a situation where I have to take something because the pain is unbearable, so currently I'm on decapeptyl with add back HRT. It's not ideal, but the pain makes me want to die, so I'm on this until I see the endo specialists, which could be in a year's time! There are risks with every medication, and the more anxious you are, the less likely you're going to stick to medications. I've learnt that you've got to figure what's worse, and then try the medications with an open mind to see if you can find something that works. It's not an easy journey, but it's about finding that balance of managing your pain and symptoms whilst waiting for treatment. Us ladies have certainly been given the poop end of the stick! Speak to your dr and tell them your concerns, unfortunately we have to jump through certain hoops before certain treatments are offered. Big hugs to you and I hope you can find something that suits you. I was just like you and was afraid of medications, but I had to try. Xxx

[Nogranola in reply to Earthmother1]

Thank you so much for your response. There's so much helpful information there. I can't thank you enough. Yes it's disgusting we have to jump through these hoops. I wouldn't mind if they weren't going to cause extra damage but they do. It's a sad situation we all face. I'm sending love to you all. I hope we all heal well 🙏🫶 xxx

[PinsAndNeedles82]

I recently had a laparoscopy+excision of endo. Post op I felt the tone of the junior Dr was quite coercive - he was trying to get me to have the coil fitted. I have massive reservations as if I were to have bad pain and/or bleeding, I wouldn’t be able to quickly have it removed. That said, some people swear by it for symptom management but for me, the risk just wasn’t worth it. I have opted for desogestrel as I understand it can help endo symptoms and also slow regrowth. If, however, I have any unpleasant side effects I can stop it straight away. With regards to the cancer risks, there is a very small increase in the risks of certain cancers however, after doing a lot of research, I felt the potential benefit to me far outweighed the risks.

This is your journey and absolutely nobody should be trying to tell you what to do. They can advise and guide you but it is their job to provide you with treatment that is right for you. Please continue to do what you feel is best but I would also gently advise you to research all the options (reportable sources only!!!). I would also ask why they feel this combo is best for you right now (after you arm yourself with sufficient research) as there may be a really good reason that you’re not aware of. Really hope you get the answers you need and a treatment plan that you are comfortable with. Sending lots of love 💖

[Nogranola in reply to PinsAndNeedles82]

Thank you so much for your response. It means the world. I am really grateful to hear other people's journeys. It's so nice not to feel so alone aswell. It means the world thank you so much 💝🫶

[Nogranola in reply to PinsAndNeedles82]

And can I just ask did you decline the coil in the end? And I'd so what did they say and how can I politely decline it aswell? Sorry to ask I'm just so unsure of what I need to be saying. Ive already rang the my consultants receptionist and asked her to pass on my reservations about both the coil and pills but I was just dismissed,really, and told that the surgeon knows best. So I'm still stuck. Thank you so much for your help and advice 🫶