Endo and Mirena

[MonieBL]

Hi everyone, I was diagnosed with endometriosis in 2017 but this is the first time I’ve joined anything like this. Feeling really fed up with my symptoms and thought it would be a good idea to link up with fellow endo warriors 🤗.

I recently had a Mirena coil fitted in order to stop my periods, with the intention of helping/stopping the endo pain. I had the coil fitted 3 weeks ago, unfortunately the timing of the fitting wasn’t great as I was due on the following week. I’ve been on my period for a week now and the pain has been so much worse than before and the bleeding is constant. I feel like the past 3 weeks have been hell. I had it fitted in the hopes of stopping the pain so feel really disappointed and frustrated that I now feel worse than before 😣. Lots of people around me have had coils and said the pain and bleeding will settle within 3 months, but none of them have endometriosis. Just wondering if anyone with endo has also had the Mirena and had a positive experience with it?

I have endometriosis in my cervix, fallopian tubes, bowel and rectum and feel like everything I eat is hurting my stomach. I’ve been waking up in the middle of the night and in the morning with stomach pains every single day.

Sorry for the rant, it’s been a long time coming 🙈😮‍💨 xxx

[Fizzypoptastic]

Hi there,

I have deep infiltrating endo. I had a Mirena fitted in Feb 2022. The bleeding lasted 4 months. I still have spotting for a week instead of a period so I am extremely grateful for the Mirena as before this the bleeding was frequent & extensive. So much so that I was anaemic as a result.

I also had laparoscopic surgery in March 2023 & had the Mirena replaced. The bleeding only lasted a few days this time as my body had gotten used to the hormones.

I’d say hang in there. Your body will get used to the hormones & settle down. Have you had surgery?

I had endo in my pelvis & a mass near my rectum (which is still there). The endo caused horrific pain & side effects daily & nothing calmed it down. I could eat the healthiest things but my body was unhappy until after surgery.

You may find the same.

Wishing you a speedy recovery. Mirena & surgery were two of the best things I did for endo. Xx

[MonieBL in reply to Fizzypoptastic]

Hi Fizzy, that’s so good to hear I’m glad it helped to improve your symptoms. We’re quite similar in that I also have anaemia at the moment and the deep stage 4 infiltrating endo 😔. I had a laparoscopy in 2017 and that was when they actually found the endo but I’ve not had surgery again since.

I’ve been waking up every night since having the coil fitted with trapped wind but it’s really low down and so sharp!! I’m going to try and fully cut out bread and not have stodgy carbs for my tea to see if that helps that situation.

Do you mind me asking what type of surgery you had? I’m under a new consultant and he mentioned rectum surgery but they’re going to discuss my case in an MDT and go from there.

Thank you for getting back to me 🥰 xx

[Fizzypoptastic in reply to MonieBL]

Hi MonieBL, I’ve only had laproscopic excision surgery at the moment which found endo on my left, right pelvic walls & a 10cm cyst. I had my right fallopian tube removed too but that didn’t have endo. It was blocked. (I had some polyps in my uterus too, which were removed in Feb 2022. )

The mass near my rectum remains untreated. I’ve been told it’s significant. It was causing awful pain, bloating, gas, bleeding etc until I had the Mirena fitted. It has calmed down since then. I guess it was being triggered by the bleeding. The surgeon didn’t want to operate on it as it isn’t causing symptoms currently & I was only too happy to oblige.

I’ve been told to go back through my GP if the pain & other symptoms return as I will have to have an MDT present to operate etc. Possibly similar to what you have been recommended. Xx 🥰

[MonieBL in reply to Fizzypoptastic]

That’s really helpful thank you so much for taking the time to respond 😊. I’m hoping in time that the Mirena is going to settle things down xx

[Morty1984]

Hi! We are so in a similar situation! I had mine fitted 3 weeks ago and have same Endo as you. I’ve been in so much pain with intense cramps and constant bleeding. I’m trying to push through because it seems it may settle in a few months and I’m hopeful after that things will get better xxx

[MonieBL in reply to Morty1984]

Hey Morty! As horrible as it is, it helps to know you’re not alone doesn’t it. I’ve put off having any sort of contraception because I’ve been scared of the pain and periods getting worse but just trying to think it’ll be worth it in the long run. It just makes you miserable waking up and the pain is still there and the bleeding hasn’t stopped 😢. It was so painful having the coil fitted as well I don’t know if yours was the same? I’m hoping this period is as bad as it is because I’ve just had the coil fitted and that it will improve in time. We’ve got this 💪 xxx

[Morty1984 in reply to MonieBL]

Omg I can’t describe the pain of having it fitted. I cried so much and felt like I was going to pass out. Was so dizzy and sick. Sounds like we are living the same life right now and as much as I wouldn’t wish this on anyone it’s nice to know I’m not alone. Just praying things settle down for us soon and the coil helps us overall x

[MonieBL in reply to Morty1984]

Yep I was exactly the same the pain was unbearable. Just lay there in shock for like 20 minutes after!! Absolutely, let’s hope it’s all worth it in the long run 🤞 xx

[Morty1984 in reply to MonieBL]

Me too! Let’s keep each other updated. Fingers crossed 🤞🏻 very tightly! Sending strength your way x

[MonieBL in reply to Morty1984]

Absolutely! Feel free to message me anytime 🥰 xx

[SofaGoblin]

Hi, It's miserable isn't it. I had a coil fitted 4 years ago. It took about 6 months for it to settle. Those 6 months were challenging. However... I would say it was absolutely worth persisting with. It is the ONLY treatment that has effectively managed my endometriosis symptoms in any way. And that's not to say it's perfect. I still deal with some pain and fatigue, but honestly, I am living a different life. If you possibly can tolerate it for 6 months, then it is really worth your best efforts, but I understand it's not tolerable for everyone.

Give yourself all the rest and compassion you possibly can in the meantime. Do you have effective pain relief options? In my stash I have available to me, ibuprofen, paracetamol, co-codamol, naproxen, and the big one, dihydrocodeine. This is a post-operative pain relief normally, but it is THE thing that just wipes the pain out when nothing else is quite doing the job. Make sure you get a prescription for lansoprazole or omeprazole to take before any NSAID pain relief like ibuprofen, naproxen of mefenamic acid to protect your stomach. Speak to your doctor about whether tranexamic acid might be appropriate for you in the meantime to slow or stop bleeding. I lived basically with a microwave heat pad tucked in my pants or absolutely wrapped up in an electric heated blanket which was really helpful. Vit d, omega 3 and magnesium glycinate all had a modest impact and cutting caffeine. I know you probably know all this. Just doing an info dump just in case!

I recently found out from a doctor that sometimes they replace mirena coils every 4 years instead of 5 when it's for management of endometriosis symptoms. You can also get the placement checked to ensure it's in the right place to make sure it's working effectively. Also worth noting that when it comes to having it changed over, you almost certainly won't have to go through this settling in phase again. It should be much much less and quicker recovery. It is also possible to get them changed in hospital under general anaesthetic, and they have all kinds of other options at their disposal like sedation, morphine, etc. If the process was unpleasant for you, then bear this in mind IF you manage to stick it out and eventually have it changed. x x x

[Morty1984 in reply to SofaGoblin]

Your reply has helped me so much too ❤️

[SofaGoblin in reply to Morty1984]

I'm so glad. I know how awful it can be. My life was basically on pause for 6 months. We have to take care of ourselves so well. I have a cat and I think of how kind and gentle I am with him and I try to apply that to myself, because the ill part of me is basically like an anxious cat. That bit of my brain doesn't respond to logic or rationalising, it just needs care and safety.

[Morty1984 in reply to SofaGoblin]

You speak so wisely!!! Thank you for helping ❤️ x

[MonieBL in reply to SofaGoblin]

That really helps thank you so much 💕. It’s so helpful getting to speak to people who are going through it or have been and not just googling and hoping for the best! Xx

[SofaGoblin in reply to MonieBL]

No problem at all. We're just not designed to be able to deal with so much pain and discomfort. It can just send you bonkers even after a couple of days, so be sure to remind yourself that you're going through a lot. It's so easy to downplay it or dismiss it. x x

[SporadicGardener]

Hi I had pain for a week after the coil fitting but it settled down. My gynecologist advised me to take progesterone only pill as well as mirena coil as it's low dose sp possibly not enough to control paint. That has worked for me. My periods stopped.