Hi,
I've just been diagnosed with endometriosis and am currently recovering from my laparoscopic surgery. I was fitted with the mirena coil as I was advised that this should hel keep the endo at bay. I am also type one diabetic. I am wondering if anyone has any experience with the mirena and if they found it helpful? Or if anyone also has type one and has any advice on managing 2 chronic conditions?
Thank you and I'm so happy this community exists!
Hiya,I am also recovering from a laparoscopy and hysteroscopy (done yesterday). I was also given the mirena coil for the same reason as you. No experience with two chronic conditions. However, thought I'd message to see how your recovery is.
Hope you are healing up.
Ahh thank you so much for your message! It's so nice knowing we're not going through this alone. I am ok- still processing everything but also allowing myself to have lots of rest. I am on day 4 and feeling alot brighter than I did yesterday. I'm still very sore and moving slowly but excited at the prospect of hopefully feeling a bit better after recovery. I had no idea I would have the endo removed on the day of my laparoscopy (my surgeon told me if they found it they would reschedule another appointment to remove it) so it was quite a shock waking up to realise they had done the surgery. Although, i'm actually really glad i don't have to go back anytime soon!
How are you feeling? I hope you're ok and have someone to help you/ bring you tea! How have you found moving around?
Hey lovely,Oh wow, that's good they removed it though, can't imagine having to go back for a lap after having had one to get the endo removed! I hope you are feeling better again today.
I'm sore and in discomfort/pain. I'm getting about in a kind of stooped forward positioning and abit shuffly with my feet! Not the best look, I must admit. How about you? I feel tired but having broken sleep (which is normal for me). Have been feeling quite sick for the last 24 hours and forcing myself to eat. How are you feeling today? How many incisions did they do?
X
Ohh yes, it would have been very hard to motivate myself to go back again!
Haha, I have been donning the stooped forward look too and using a broom as a walking stick/for balance so fully embracing the hunched over look! Sorry to hear you're in so much pain. It does get better, I promise. I just had my first 5 min walk outside which felt so good. I'm back in bed now but I am definitely feeling like I amover the worst of the pain. I think I started to feel better once all of the gas/ shoulder pain had disappeared. My appetite came back after that too. How are your shoulders? How are you feeling today?
I had 3 incisions ( one in my belly button and two either side if that). How about you?
I actually went out for a walk yesterday (only from the car to Tesco, I wanted some comfy pjs/a new dressing gown!) Tbh think I over did it. Which is maybe why I am so fatigued today? I was planning a walk outside today but the weather is so bad here and I'm so tired.Love the broom idea! The shoulder/rib pain seemed to go within 24 hours, which I was grateful for but I'm still gassy around my tummy I would say. I have four incisions, still with dressings on. Did you get much information about the endo removal from your surgeon?
X
Hello! Sorry it's taken me a few days to get back. How are you doing today? I am starting to a lot more mobile which is nice but trying not to do too much too quickly as also very fatigued and still sore.
Noo, I haven't had much information at all. Have you? They told me a bit when I came round but I was a bit out of it so didn't take much in. I was thinking of making an appointment with my gp to ask. Hope you're feeling a bit brighter xx
ps- I can totally relate to the feeling of wanting fresh new pj's!
No worries lovely!Not a good day today, my period came and it has been horrendous, so painful! Also, I have a tooth infection and had to get an emergency dentist appointment today for antibiotics! So feeling pretty grim! Tbh, I think I have been overdoing it. I've been pushing myself to walk and some days this week have done 10,000 steps. I removed my dressings today (week after op) I was a bit apprehensive but it was ok, weird seeing the stitches! My consultant came to speak to me when I was in recovery too, I can vaguely remember bits he said but couldn't say with any certainty! I took this photo from my notes when the nurse left the room though! Not quite sure what it all means! Do you have a follow up with your consultant?
Xx
Oh your poor thing - that is not a fun combination of things. Hope the antibiotics help!!
My period came (and hasn't left) too. Oh myyyyy its agony! I've been spotting since the op but it's now quite heavy. Hoping it subsides and this isn't my life for the next few months whilst the coil settles down 🫠 10,000 steps is loads! I've just managed the longest walk in 3 weeks, which is only 4000 steps and im exhausetd. haha. But I guess all of our bodies are different. Do you find the tummy pain increases when you walk? How are your stitches doing? I can now see my belly button again which is nice haha.
I should check my letter, I maybe do have a follow up 🤣 Hope you're feeling ok x
Hiya!Stitches are more or less dissolved which I'm glad about. I had my first bath since my lap yesterday (I love baths!). I find I get lower back, abdo, hip pain after walking awhile. How are you doing now? X
Hey! Aah so glad you had a bath- hope it was luxury! I am still patiently waiting for my stitches to dissolve so I can have one, can't wait! Honestly I was hoping I'd feel a bit brighter by now- still very exhausted and sore (but a lot less than i was, so thats good :)). I've been struggling with bowel movements and also got a UTI, so wondering if that's set me back a bit. Due back in work this Wednesday which i'm quite nervous about as currently still needing to rest loads. How are you doing? Have you returned back to normal? Hope the pains have eased up for you xx
Hey!! So sorry about your diagnosis. Managing two conditions must be really hard. I got diagnosed via lap three years ago, had a baby and then had the mirena put in in February. It has not worked for me so now they have given me a mini pill called Slynd to take alongside it.
When I went to the GP she told me that the mirena alone doesn’t stop you ovulating and that’s when you produce the endometrial tissue. I’ve never been told this before and I’ve done so much research myself so I was a bit confused at how I didn’t know that to be honest. I’ve been desperate to avoid the pill because of all the horrible side effects, but it can’t be helped! I’m only three days in so can’t say if it helps or not, but I can say that the coil alone didn’t help me. I was still having two or three small, light (but still painful) periods a month and then every six weeks or so a horrible, painful heavy period. It’s never ending!
I waited until it had been 8 months to go back to the GP because you ideally need to leave the mirena at least 6 to settle. They did a scan to check coil position and everything was fine so then after ten months I had another appointment and they gave me the pill.
I will say though that I know of several women (without endo) who absolutely loved the coil and had no periods or side effects at all. So you may find it suits you and just didn’t suit me! Best of luck.
*With regards to diabetes and endo - I have a relative who manages her type 1 with a strict keto diet and has been very successful. I appreciate it’s really hard work and you are already exhausted all the time from pain which is why I have never pushed myself to try it. However there is research to suggest that an anti inflammatory diet helps for endo and from what I understand the two diets are very similar. It’s on my list if medicine fails me! There are some really good podcasts about endo and diet if you’re interested.
I really hope the coil works for you and you find a way to manage the two conditions. Rest rest rest and don’t over do it or over commit yourself !! Put yourself first. Xxx
Hi! Thank you so much for getting back to me and sharing your story. I'm sorry to hear you haven't had much luck with the mirena and are back on the dreaded pill! Fingers crossed it helps you.
Wow, I had no idea that you still ovulated on the mirena either! It seems bizarre that they would recommend it. Thanks for telling me! I also have pals (without endo) on the coil who also love it and others who absolutely hated it. I was unsure about getting it put in but I thought I won't know if I don't give it a try. So here's to the next 6 months....
I'll take a look into endo and diet, thank you. I am on a relatively low carb diet anyway (as I also have gasteoparesis) so avoiding loads of carbs helps with that and with blood sugars, so i'd be interested to find out more about its relation to endo.
That's also the best advice- hope you do the same xx
hey, I’m now just over two months post op from my diagnosis + laparoscopy. I had the merina coil fitted also.
It took a bit of time for it to settle; I had a period about a month into recovery which I can’t lie was hell. My body hadn’t had a ‘normal’ period in years as I was on the pill for nearly 10 years before the operation to manage my symptoms.
I’m now coming up to when I’m meant to be having my third period post op and it’s stopped them ! It’s also stopped the second period, so it started acting fairly quickly. I know from talking to other people everyone’s body is different, but I have found the merina coil to really really help my period symproms and endo post op.
Post op recovery however is soooo slow to be patient with that. I’m still sore and a bit swollen over two months after, my energy is slowly returning but I still have very exhausting days when I do a lot of walking and moving.
Be kind to yourself, message on here as the women are so supportive. Give me a message if you have any post op questions. I’m afraid I’m not diabetic so I cannot advise you on that, I would maybe advise speaking to a gynaecologist about that xxx
Hallo! Thank you so so much for sharing this. Everyone is so kind and honest on here-it's wonderful!
It's great to hear that it has worked for you (minus your first period. I have heard a few others mention the first one is hell so I'm not looking forward to that). Yeah from what others have said it seems like it's quite an individual thing so just have to wait and see. Fingers crossed!
Oh wow, so sorry to hear that even after 2 months you're still not feeling great. That's quite a long time! Do you feel able to do things like drive/ bend down now (I can't currently bend down yet and am quite amazed at how often I drop things and can't pick them up haha). Have you been left with scars? That's really helpful to know though, thank you. I am someone who usually over-does-it so its good to be aware that i need to take things much slower and be kind to mysef! I just had my first walk (5 mins and a snails pace) outside since the op. It was wonderful but I'm exhausted now! It's maybe too early for you to tell, but I'm wondering if your endo pain/symptoms have reduced at all?
Thank you so much and take care xxx
That’s great you’re moving ! It took me a few weeks to be able to properly bend over I think. I had 5 entry wounds post op as they found a lot of love and dead endo + cut a cyst out. I think internal healing takes forever tbh, some people saying over 10 weeks which is nearly where I’m at. I was basically bed bound for 2 weeks post op, not fun !
My endo symptoms are deffo less, but it’s weird because with the merina coil you still have a hormone cycle, so having the fluctuation of moods and everything is kinda fun and not fun at the same time as haven’t had that in years. I’ve also started making turmeric and ginger shots which are helping with symptoms as well xx
hi, I’m 18 years an Endo warrior. The Mirena gave me years of my life back after my diagnostic lap. Prior to the Mirena, 10 day heavy pain periods with horrific PMT. Went to very mild symptoms and a 3 day “period” that lasted 3 days and required a panty liner.
I have had many inserted and changed over the years. Highly recommend. They can take a while to settle in your body and I had times of light spotting and cramping but nothing compared to the unbearable pain of Endo.
I really hope it suits your body and settles quickly. They have given me my life back, for many many years.
All the best 💞🫂
Hi I'm going to have the mirena fitted in December. Have you noticed weight gain because of it?
No
You are an Endo warrior! Well done!!! And thank you for telling me this, it gives me hope 
xxxx
That’s good 😊 and sometimes we have to just go for it, blindly and hope for the best. The time it takes is really difficult when something doesn’t work out. So see how you go and I was where you are once. There was no forum then. I sound so old 😂🤣
I have just had my coil removed after having it in for 5 years as the consultant wants me to try Ryeqo which is going through chemical menopause. When I was on the pill and the coil at the same time I found the coil helped with stopping my bleeding so that was good but I still experienced the same pain. I would probably go on the coil again in the future but I’m trying this chemical menopause as the last option to try and help reduce the pain but I don’t want to be on this forever … so we will see.
Thank you for sharing <3 good luck with the chemical menopause treatment- I hope it helps you x
hey lovely,
Hopefully you recover well and surgery helps you. I had the mirena too, im 8/9 weeks post op and haven’t had a period which has been a relief! I did suffer with headaches at 3 weeks post op but they passed. Hopefully this helps in some way! Xx
Is the coil known to be more effective than the pill? 
Mirena coil and Zoladex
Mirena Coil...
