Has anyone's pain got worse after having ... - Endometriosis UK

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Has anyone's pain got worse after having the Mirena fitted?

43 Replies

I'm new here so first want to say hi :-)

I had the Mirena fitted early Dec and my periods and pain have got worse. On the Zoladex my pain stopped as soon as my periods did (after about a month) on the Mirena so far, my periods have now got heavier and last roughly a fortnight. The pain is really getting me down and I have booked an appointment with the GP As I'm thinking of having it taken out. Also, my stomach is constantly bloated, so much so I'm having to wear baggy tops as I look a few months pregnant.

Should I stick with it? Will it get better? Really fed up :-(

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43 Replies
carla1973 profile image
carla1973

Keep with it I went through the same thing but it does get better u should start feeling better in about a month x x x x

in reply tocarla1973

Thanks for your reply carla1973, I have decided to give it a little longer and see if things improve, if not I will have to have it out as the pain can be so sharp sometimes it takes my breath away. xx

Katie94 profile image
Katie94

I had an IUD for around 6 months, not the mirena, just the non-hormonal copper one. I started suffering really painful periods after having it fitted and eventually the pains were excruciating, and I thought the iud had moved but I found out I had endometriosis and it was obviously irritating it. Once I got it removed I was still in pain with my periods probably cause of endometriosis, but the sharp stabbing pains and bloatedness disappeared. I would say that because you have a hormonal one it may just take some time for your body to get used to it and it may help slow down your endometriosis growth. It is also in my opinion the best contraceptive and I really do miss it for them reasons. I would say stick with it for a little while longer but if the pain becomes really bad just have it removed because it isn't worth it!

in reply toKatie94

Hi Katie94, thanks for your reply. After reading other replies now I am wondering whether he Mirena is aggravating my endo - sometimes the stabbing pains take my breath away they hurt so much so I know what you mean and the bloating is so uncomfortable as it's like trying to sit down at my desk with a football tired around my stomach! I am going to give it a bit longer and if nothing happens, it's coming out xx

Mrs-T2014 profile image
Mrs-T2014

Hi stick with it I had mine in Dec during surgery its had its teething problems I was told 6 months before it settles I am getting a rather annoying red/brown discharge for 2 weeks in a month and a period I have it checked etc no infection. I think its one of them things you have to give time - I also have had horrible pains in pelvis area! I have increased exercercise it seems to be helping and on bad days taking pain killers good luck x

in reply toMrs-T2014

Thanks Mrs-T2014, I am going to give it a bit longer and if nothing happens, it's coming out. It seems 6 months is the time most people are quoting so another 3 months. I just hope it slowly gets better as otherwise I might have to have it out beforehand. I am going to try upping the exercise too but sometimes I just want to hide under my duvet xx

dsteve202 profile image
dsteve202

Hi I hope your well! I have the mirena coil and have done for two and a half years, the first 6 months were horrible bleeding every day with bad pain and severe bloating. After 6 months the pain and bleeding stopped completely- that's been two years completely period free totally worth that initial 6 months! I still get really bad bloating dr says it's the progesterone that causes this but I'd rather live with that than pain and bleeding! Hopefully you manage to hang in there and it works for you! Good luck! xxx

in reply todsteve202

Hi dsteve202, thanks for your reply. It does seem that 6 months is the miracle point when things turn around so only another 3 months to go. I will just have to play it by ear and see how it goes.... the bloating is so uncomfortbale and it's actual rock solid belly as well not just fat haha. Thank you xx

Jennaberri profile image
Jennaberri

Hi, I've had 2 Mirenas fitted. The first was amazing and I had it in for 5 years. No periods and no pain. I didn't have the next fitted for a few years but when I did I immediately got pain on my right side. The pain was unbearable so I went back to the doc who said it would calm down, it didn't and a week later I demanded it be taken out. Again doc thought I was being silly and that it would settle but I insisted ang it was taken out. Immediately the pain stopped and I felt relief. I wasn't aware I had endometriosis at that time.

I have since found out I have chocolate cysts on my right ovary and I had severe endo. The coil was more than likely resting on endo/ sore spots in the womb.

If your not happy or comfortable with it ask for ir to be taken out, it's your body.

in reply toJennaberri

Hi Jennaberri, thanks for replying, it sounds like you had a right time of it! It does seem from what others are saying too that the Mirena can aggravate endo, I wonder if that is happening to me? I'm going to try and wait it out a bit longer but there are only so many painkillers you have get down you! I hope you're ok now, thanks for telling me your story, I will definitely have it out if it doesn't improve! xx

Lynz_earth profile image
Lynz_earth in reply to

Hi.. I think I agree, the Mirena can aggravate endo. I had mine inserted 3 weeks ago and just sent 2 days in hospital as the pain became too much too bare.. Emerg Dr suspected I had PID, they removed the IUD and the relief was almost instant. I'm still in a bit of pain but I think it's the endo causing that.. Really do think the IUD made the endo worse.. Hope you can find relief 😊

vicky-amyx profile image
vicky-amyx

Hi there,the marina in my opinon should not be used, it made my endo so much worse and others I have spoken to,,i was in pain all the time,and looked pregnant,it turned out it had broken inside and had moved to by my womb they had to operate just to remove it,this was 3 yrs ago and I'm only just starting to NOT look pregnant,,so yes have it removed hun,the sooner the better xx

in reply tovicky-amyx

Hi vicky-amyx, it sounds like you had a similar experience to me! Severe bloating and stabbing pains that take your breath away! I had the follow up check and the coil was in the right place but I guess it can still move around. I am going to try and wait it out a little longer as the GP has basically told me the only other option is the pill and I don';t like the sound of that, if things don;t get better though, I will have no choice but to demand they remove it. I hope things are better for you now and thanks for replying xx

Caas profile image
Caas

Hi, I'm new here too. I have extensive endometriosis and had the Mirena fitted 2 and a half years ago, within a month I was admitted to hospital with severe pain, but all they found was a bulky ovary (the chocolate cyst had burst). I stuck it out for just over a year but found I had extreme bloating, I bled every day and it gave me the most horrendous mood swings! The next summer I was admitted to hospital again with severe pain and found out the Mirena had dislodged due to my extensive endometriosis and was sitting at the neck of my cervix so I had it surgically removed that night. To be honest all the Mirena did for me was it changed the consistency of the blood during my periods and reduced the pain a little bit, but for me the cons outweighed the pros and I was glad to have it removed. I think the Mirena works for some and not others but it does take a while for your body to respond, however if the pain is too much then its not worth making your life a misery.

in reply toCaas

Hi fellow newbie! Thanks for replying. I didn't expect any replies at all so thanks. I have to say that I do find myself getting snappy and moody for no reason at all since the Mirena and it's hard to snap out fo it. Luckily I have a very understanding bf but I still don't like feeling down. You sound like you have had an awful time with it, I think it will come down to me weighing up the pros and cons and deciding what outweighs what, I will wait a bit longer I think but if nothing changes, I'm demanding they take it out. Thanks for your input I hope all is well with you now xx

Caas profile image
Caas in reply to

Hey bigtourist, I'm pleased to hear you're giving it a go, I really hope things get better for you and your Mirena symptoms subside. It's nice to know you have a supportive partner too who can help you through this. Unfortunately for me my endometriosis is so extensive I'm waiting for a radical resection as this is the only treatment option for me now. I wish you the best and hope your endometriosis responds to the Mirena. We're all here if things get too much. :) Take care xx

in reply toCaas

Thanks Caas, I feel relieved to have found such a site with really understanding people! I hope things get better for you soon. :-)

GraceParry profile image
GraceParry in reply to

What was the result of it for you? Mine has been in 3 months now and last month caused me the worst pain I could of ever imagined 😞

Amartinsz156 profile image
Amartinsz156 in reply toGraceParry

Hi Grace, by any chance did you feel better? I just had it inserted three weeks ago and I can’t stand the pain. I get sharp stabbing pains and even throw up and pass out from the pain. I had heard it helps with Endo but it has just made me be in so much pain.

GraceParry profile image
GraceParry in reply toAmartinsz156

Pains have got slightly better now but I still get periods and period pain and stabbing pains before I come on and really bad headaches 😩

Hello I have tried the Mirena three times.

The first fell out when I was bleeding heavily.

The second was in for 15 months. It was wonderful for

my torrential periods, I only bleed a tiny amount. It did increase my pelvic pain (and ovarian cysts) but I decided to get it removed due to mood problems.

I had my third one put in 4 weeks ago. It has already made my a scheduled period incredibly light. I have also now stopped bleeding. Unfortunately after ten days after insertion I was rushed into hospital with severe pain. I had either a ruptured chocolate cyst or a leaking one. I needed antibiotics and I spent three nights in hospital.

I am still experiencing pain and this has got worse since yesterday. I do not know if the mirena has "unsettled" my endometriosis or if its just a coincidence. I am seeing my specialist next week so I will hopefully will find out more then.

Best wishes,

Barbara x

in reply to

Hi Cuddlybarb, thanks for sharing your experience. This unsettling of endo by Mirenas seems to be quite common just from reading these replies. I am wondering if that is what it is. Sorry to seem to be having a rough time of it, I can totally understand. I haven't had it as bad as you but can empathise with the pain and the mood swings. I hope you feel better soon. xx

cupcakegirl profile image
cupcakegirl

YES! The mirena was hell for me. After a month, I started getting contractions every day. This went on for four months. My gynae told me it couldn't be the mirena as it is rare for it to cause pain - my research showed otherwise. He told me I should stick it out for six months. On the six month anniversary of having it fitted, I made an appointment to have it removed - half an hour of agony later, my GP informed me that the strings had been cut too short and she couldn't get it out..£: referred me to the hospital to have it removed under sedation but they didn't give me any. In the end, I had to have surgery to remove it. It took over a year to get the bloody thing out.

I would not advise anyone to have one personally. They say it can take six months to settle down and in fairness it did improve a bit after six months or so, but it wasn't helping and I just wanted the thing out by then.

If its bearable and you want to wait, it should improve over the next three or four months. However, if you're struggling to cope, get it removed now.

in reply tocupcakegirl

Hi cupcakegirl, 6 months seems a long time to stick with something, especially when I was told by my GP that things should settle in 6 weeks! But most people on here are saying the same so looks like I might have to try and get through the next 3 months! It does concern me though, that GPs seem to not listen to any negative feedback concerning the Mirena. My GP told me not to pay attention to anything negative on the internet! Of course I had read all the horror stories! I'm sorry you had such a rough time of it, I hope things are ok for you now! Thanks for your reply xx

cupcakegirl profile image
cupcakegirl in reply to

Doctors often get annoyed when you read stuff online, but the horror stories are actual stories and the doctors don't tell you. When I saw my gynae, I was near suicidal because of the side effects - I literally felt like I was in labour for several hours a day. He fobbed me off and discharged me, and he didn't report the side effects I was experiencing - that's why doctors don't think the side effects are a real issue, because they're not shared!

Many docs seem to push it as the ideal treatment - it is for them as its relatively cheap since it lasts five years, and patient compliance is ensured. However, my research suggests that most endo sufferers don't cope well with it.

Every gynae I've ever spoken to says its takes up to six months to settle down, and it did take 5-6 months for me. By then I was a wreck and had lost my dream job because of the side effects, and the depression it caused was unbearable.

If you're able to bear with it and its not impacting your life too much, stick it out - but have it removed if you can't cope with it. The only reason I agreed to continue is because it was my last option.

in reply tocupcakegirl

Thanks Cupcakegirl. I know, I've started getting burning pain in my left breast now combined with stabbing pains and I can't lie on it as it hurts so much, is this normal?? Things are going to have to seriously improve for me to keep this! :-( xx

cupcakegirl profile image
cupcakegirl in reply to

No, that doesn't sound normal at all. Do you usually get painfu breasts during periods etc? I always have so it's not unusual for me for them to be tender - but stabbing pains and difficulty lying down a extreme. Please get back to your GP for some help x

in reply tocupcakegirl

Hello. Tender yes normally but I can't lie on my left side in bed and is burning constantly. I've got an appointment on Wednesday to discuss Mirena so will bring up then. x

butterfly95 profile image
butterfly95

Hi, I had the Mirena fitted just under a year ago, for 6 months I was back and forth to the doctors begging them to take it out! The pain was horrific and the bleeding was constant, it was absolute hell! Then over night after 6 months everything stopped! No pain, no bleeding, nothing! I think everyone's body will react differently to having the mirena, and it may just not be the right treatment for you! Make sure your doctor takes you seriously! Good luck xx

in reply tobutterfly95

Hi butterfly95, 6 months does seem like the time when it starts working for most people, I hope it will for me too! I like to think I have a high pain tolerance but sometimes I just can;'t cope with it! I don't have many other options open to me so fingers crossed, I will give it a bit more time but won;t suffer if it doesn't improve. Thank you for your reply xx

feisty-girl profile image
feisty-girl

I would see your gp make sure the mirena is in the correct place.good luck

in reply tofeisty-girl

Hi feisty-girl, I had it checked 6 weeks after I had it put in, I didn;t realise it could still move around. I have been bleeding quite heavilty so it is a possibility. I will mention with to the GP and see what she says. Thanks xx

jas_mum profile image
jas_mum

Hi,

I looked in to getting this and when i spoke to my GP she advised me because of my Endometriosis that it wouldn't be advised along with the research i had done as well and it looks like the side effects that i saw and was told about. i would advise if you have a good relationship with your GP maybe you should speak to them and discuss it.

hope you feel better soon xx

in reply tojas_mum

Hi jas_mum, I do wonder why some of us are given different advice! My GP said that it would almost certainly get rid of the pain as my periods would either stop or become very light. Well the opposite has happened. I know from being on Zoladex that the pain is linked to menstruation because as soon as I came off the Zoladex everything came back with a vengeance! So obviously if it's not stopping my periods, it's not going to stop the pain! I will have to discuss tings in my appointment and see but if things don't improve I can't see me sticking with it. Thanks for your reply xx

Loulou_92 profile image
Loulou_92

I had mine fitted end of 2012 I still get really bad pains but it's not as often as they used to be but are much worse at the same time. Maybe it's worth getting it checked again to make sure it hasn't moved or fallen out and talk to your dr. I was told it might not work as the treatments we have are to help reduce the symptoms of endo. Good luck and hugs xx

in reply toLoulou_92

Hi Loulou_92, thanks! :-) I'm going to have it checked again but I'm getting breast pain in one breast now and it's almost constant, I'll mention this to the Dr but it's looking more likely I'm going to have it out xx

PaulaNeaves profile image
PaulaNeaves

definately! But it got better after a few months. Especially after I tried to give my hormones a helping hand!

in reply toPaulaNeaves

Sorry for late reply PaulaNeaves, I don't seem to be seeing my questions in my activity anymore. Thanks, I have a couple months left, I am hoping it goes soon! x

Cathrd profile image
Cathrd in reply to

Hi, I know this is an old post but hopefully if you see this I was just wondering what happened? Did you manage to stick with the mirena and it got better? Or did you end up having it taken out? If it was taken out, did you feel better afterwards and what were the options your GP gave to you instead?

Sorry for all the questions on such a old post but I am going through the same thing at the moment!

Thanks xx

Amartinsz156 profile image
Amartinsz156 in reply toCathrd

Hi Cathrd,

I’m going through the same issue. The horrible pain is taking over and I can’t do anything throughout the day without getting horrible stabbing pains plus the painful cramps. By any chance, did you feel better?

Thanks!

Mised profile image
Mised

Hi, I had Mirena for about 2 and a half years. I have only just recently been diagnosed with endometriosis but can whole heartedly say the Mirena made my symptoms worse. It was ok for the first year but I have to say I wasn't sexual active during that time. It was post break up and I was feeling pretty awful.

Any way, after a while I got more and more pain. Particularly during and after sex with a new partner. I went to my GP and eventually got an appointment with a gynaecologist who was about as much use as a chocolate teapot. They said have the coil removed, then changed their mind when I said about other pains I experienced. I suggested my pain could be endo as Drs had mentioned this in the past. Finally she agreed she would see if I could have a laparoscopy and I had it 8.9.16 and there was extensive endo found on my womb.

I guess the thing with Mirena is that it depends what endo is already there and where the deposits are and if having the Mirena is going to pressure in those areas. Which for me I think is the issue.

I have issues with taking the pill as I have severe mood swings so I have no idea what they will suggest at my follow up appointment.

You know your own body and you should follow your gut instinct always.

Lucy x

TLT1304 profile image
TLT1304

Hi My daughter 17yrs was diagnosed with endo and PC Overies in Oct last year and was fitted with the mirena. She has been putting up with the pain and the bleeding knowing it would take some time but even though we have been back they don't feel she should have it removed. Her pain is getting worse and after reading some of your comments i feel we should be chasing to have it out but she is about to sit her HSC, can anyone with endo tell me what happened when they had it removed..period and pain relate please...

Sarahlouisex profile image
Sarahlouisex

I haven’t had one yet. I’m considering it as an option however I told my consultant all the bad experiences put me off. He told me the Mirena has a 70% success rate and if it causes me problems he’ll remove it xx

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