Hi, I'm debating going through with the mirena coil and would like some advice from people who've had it (I'd love anybody's advice, but particularly if you haven't had children so I know what the pain is like). I've been on the pill since I was 11, having had horrendous periods starting when I was 10. So far, nothing has worked. I've tried transexamic acid, naproxen, mefenamic acid, another kind of acid and oils. I've tried 6 different pills, but i react terribly to hormones. Some did nothing to help the bleeding, others that helped the bleeding made me feel depressed. I've been on the pill cileste for the past year and a half, and its okay, but i bleed everyday. I can go through 5-6 pads a day, as if it was the second day of a period. I take the pill back to back also. I suffer badly with cramps, get a tugging feeling deep in my uterus and can feel my ovaries sometimes. The cramps are really painful and make me feel nauseous, and i often have to miss school when the bleeding and cramps are that bad. I tend to use a hot bean bag on my belly everyday, especially when sitting down. I also have really low blood pressure, am anaemic and pass out quite a lot. The pain seems to be worse in the morning and when i eat certain foods like cheese, yogurt or bread. The doctor has said that there's nothing else they can do. I had an ultrasound scan in november and they said they couldn't see anything that bad, although they had trouble during the scan finding my left ovary. The specialist said it appeared to be hidden behind something (which to me sounds worrying, but they didn't say anything further). When they eventually found my ovary, i realised it was where the tugging pain i feel comes from. I mentioned this but the doctor said it wasn't a concern. I dont know whether i should ask for another scan, as i feel that the tugging feeling, the hidden ovary and dark mass around it was a cause for concern despite them saying it wasnt?
edit: I've also remembered that the man doing the scan made a weird noise when looking at the screen of my ovary. He said something like, "hm, i dont THINK there's anything there, its a bit blurry". He emphasised the think more than you'd expect. Then he called in a specialist, who said the same thing.
Anyway, that was really long, i'm supposed to be having the mirena coil fitted soon. I cant go on bleeding the way i am. However, I have GCSE exams starting May the 7th, so I have to choose whether to risk having side effects before my exams or after. If i have it fitted before, I worry i will bleed excessively and will make it worse, therefore impacting my exams. But if i leave it after, I have a really expensive trip I have to go on two weeks after I have it fit, which I will not be able to go on if i suffer with the coil. When you had the coil fitted, did you experience bad side effects like bleeding and nausea? Were the cramps bearable? What was the experience actually like? (Not gonna lie, I'm really worried about how invasive it is, but they won't put me to sleep, so i'm stuck with it) And most of all, was it worth it, or did your symptoms get worse?
Sorry that was so long, I just thought i should give you a run down on the situation so i can get the answers i need. I should probably mention that all of the women in my family suffer with severe endo, and the doctor thinks i have it, but it didn't show up on an ultrasound scan (also, is it weird it didn't show up on a scan? I'm not sure). My mum suffered badly with it and struggled to have children because of it. Could i have inherited it? I'm not hugely educated on endo, so would like your advice or stories about the symptoms. Again, thankyou for all of your replies and taking time to read this, i'm just really concerned about what to do next and didn't know who to ask.
Hi, I’m so sorry to hear that you are going through all of this.
I had the Mirena first when I was in my thirties so a lot older, but I’d never had children or been pregnant. To be honest the first few months were really tough. My pain was worse and for a time my GP thought I had an infection (I don’t think I did, my body was just struggling to tolerate it being there). It was about 3m before it improved. I persisted and I am glad I did, as it has given me many years since virtually symptom free. However that was at some cost for the first few months. So I’d be cautious about having it inserted just before exams. Obviously you need to weigh it all up carefully, but my experience would make me want to look for a relatively quiet couple of months in which to try it.
I'm glad that someone has had a relatively positive experience with it. I think you're right, I should probably wait until i have time to let it settle, especially if it takes a few months. Thankyou for your reply x
I understand how you feel I had the coil inserted when I was 18 under general however I have not had any improvement within my symptoms however I do not have any periods anymore so I suppose that is a bonus especially as I was constantly anemic.
when you had it inserted under general, did you specifically request it or did they offer it to you? I've asked for it from my doctor but they say i can't have it, but i'm wondering if i put up a bit of a fight if they will give it to me.
If you’re going to go under general then I would insist on a laparoscopy with it. This is where they take a look inside you to see what’s going on. It’s not unusual for endo not to show up on a scan.
I’m a bit concerned that it seems your GP thinks you have endo but has not referred you to a gynaecologist? Or have I misunderstood? I feel like you should insist on seeing a gynae.
Also, if all the women in your family also have endo, have you talked to them about what they found best to manage symptoms in their past xx
Hiya, i've talked to my family about the endo but they all seem to have different symptoms to mine, so it's been difficult to compare. My GP thinks i have endo, and sent me to talk to a gynae clinic, but they simply did an ultrasound and told me to have a coil fitted, so they didn't do anything else. I really think i'm going to request a lap and don't really know why they haven't recommended it to me yet, but will be sure to ask. I will probably push my GP to refer me to another gynae also. Thankyou for your help
The specialist recommended it when they did the laparoscopy however I am not to sure if I would have been better without although you don’t know until you try I do recommend you research your options though.
It’s rotten having this pain around exam times, I’m assuming you’ve tried all pain relief? Have you tried buscopan cramps? It’s the only thing that slightly takes the edge of the pains when on a period (you can use normal buscopan it’s the same as the cramps but a diff dosage as mainly for IBS).
My endo didn’t show up on the ultrasounds but when I had the lap I had quite a lot on the uterosacral ligament and a small fibroid, you could ask for a laparoscopy.
I had a coil fitted on Thursday, whilst I have had one child I had a c section so not given birth naturally, having it fitted is painful but you can take pain killers 1/2 hr to an he before fitting and ask them to use a local anaesthetic which makes it tolerable.
I’ve experienced no worse stomach pain than I would normally get during a period since having it fitted. I think the side effects vary from person to person.
This is the 3rd coil I’ve had, first time I had what I can only describe as menopausal symptoms and headaches for three months then they went, I also bled (lightly) for about 40’days.
Second time no side effects and no bleeding at all!!
It’s abit early to tell with this one.
I hope you can get on top of the pain and good luck with your GCSEs x
I'm glad that there were few side effects for you, it gives me something to hope towards haha. I have tried normal buscopan but not buscopan cramps, so i'll go and get some of that today and give it a go. I was told by my doctor i can't have any anaesthetic, but i'm considering pushing hard for it, as i've been told by a few people to have it. Thankyou for your reply and i hope this coil goes well for you! x
Firstly I am so sorry you’re going through all this whilst still so young and at school.
Endometriosis can indeed run in families and I was told by my gynae that if your mother had a diagnosis (mine did) then the likelihood of you having endo is almost certain.
When I had my Mirena Coil fitted I thought it would be a bit crampy and with all the pain I’ve had to put up with already I went in fairly relaxed. I don’t want to frighten you here and everyone is different, it was very painful (I’ve had one child). If you have the option to have it done under general anaesthetic I would recommend that. Also, they can insert it at the same time as doing a laparoscopy which it sounds like you need to find out what’s going on inside. Even if it’s just to put your mind at rest. They really can’t diagnose endo or know how much you have unless you have a laparoscopy so they can have a good look.
I know it can sometimes be a fight with GPS to get the treatment you need but ask for a referral to a gynae. With what you’re going through and have been through you have every right to see a specialist. Don’t let them tell you you’re too young. No young girl should have to suffer.
Also, I still continued to have periods whilst I had the Mirena and they were still quite heavy. I thought it wasn’t doing anything for me until after it was removed 9 months later (for other health reasons). Now it’s been removed my periods are extremely heavy and the cramps make me want to pass out, so I can see the coil did help more than I thought it did. Not so much with the bleeding but with the cramps for sure. I can’t remember feeling worse when it was first inserted but I know many women do find it takes time to settle in. There are hormones in the Coil which your body will be getting used to.
Nobody can tell you not to go ahead with having it inserted before your exams but if think you can put up with your symptoms how they are now whilst doing your GCSEs, then by the time they’re over if your GP refers you soon then hopefully you’ll have an appointment with a gynae not long after. I really do think seeing a gynae is your best option. Also, it was my gynae who inserted my coil.
I hope it all works out with you and good luck for your exams. I really do feel for you. Sending big hugs.
Thanks so much for all of that advice. I think i'm going to push to see a gynae as i'm not sure my doctor is taking me seriously. I didn't know i could have the coil inserted during a laparoscopy and will be sure to mention that at my next appointment, as that seems like the nicest way to have it done. Thanks again for all of your advice and I'll be sure to keep you updated x
You’re very welcome. You look like you’ve had a lot of good reply’s from some lovely ladies on here. It’s a horrible thing to have to deal with and the pain can be horrendous. I hope you get some results with the GP and seeing a gynae. There should be no reason at all why you can’t have a referral. Again, good luck and I hope you find some sort of relief in the future xxx
Sorry I can't advise on the coil. But I am simply stunned that you seem to have a GP and a gynae that thinks endo would show up on an ultrasound, it would be unusual for it to show up on an ultrasound. It does however usually show up on an MRI on the more modern machines. Get yourself referred to an endo specialist on the BSGE.org/centre list and get them to send you for an MRI. However, I'm not sure that an MRI can be done once a coil is fitted so it might be best to try the coil first and see how you go with it.
If it is any consolation, I didn't have that many problems with my periods during my exams and got good grades, went to university and got a degree. But my health decreased due to endo all my life until I got diagnosed at the age of 47. I ended up in dead end low skilled jobs due to my health and eventually had to give up work. (I'm now healthy and applying for jobs) You are way ahead of me in that you have a clue what the problem is and can get advice on here about how to deal with it. So you should be able to get the problem under control. What I'm saying is don't stress too much about the exams, you can re-do them next year if necessary. Getting good grades now is not the most important thing. Plenty of people do bad at school and get qualifications later.
I'm sorry to hear about your poor health and i'm glad you're on the mend. You're right about the exams, they're not the most important thing. I'm not entirely sure why i had an ultrasound, as it was to check for endo and as you said it doesn't show up, so ill need to look into that. I'm starting to get worried about my doctor too haha. I think i'll request a new one and go and see an endo specialist. Thankyou for the link, it was very helpful, and ill put off the coil until then.
If it might help you may be able to ask the school to let you do the exam in a room alone where you have access to a toilet and can put a hot bean bag on your abdomen and maybe sit in a more comfortable position.
Also, you could try acupuncture for the pain, acupuncture magnets on certain points might help and can be left on for a few days.
The bean bag would definitely help, so i'll ask about it. I've never heard about acupuncture before for the pain, but i'll give anything a try. Thanks for your suggestion.
Could you take your mum (or another adult you trust who can speak up for you) to see your GP to push for a gynae referral? Don't be afraid to see a different GP (in the same practice) if your usual one is not sympathetic.
Also, be aware that although doctors say that the Mirena can't cause depression-type side effects, it absolutely can. I won't have it for that reason (I get very depressed on all hormonal contraception and friends of mine who react similarly to the pill and mini pill got on very badly with the Mirena), so just be aware!
Could your mum speak to your exams officer at school about getting special consideration for your GCSEs? This is totally a thing you can do; with symptoms like yours (as well as the family history), even if you don't have a concrete diagnosis yet, it counts as a disability because of the impact it has on your daily life.
Thankyou so much for your comment about the hormonal side effects, i wasn't sure whether that was a problem, but will definitely think twice about it after hearing that (i got very depressed on a few of the pills i took). I didn't know i could get special consideration for my exams, so will definitely look into that. thanks x
Hey, I really feel for you. Reading your symptoms and experience with your GP was like reading my own experience almost word for word. I am 29 but had really bad pains and symptoms throughout my teens and adulthood, also from starting periods around age 10. Mefanamic and transamic acid didn't make me feel depressed but made me nauseous and physically sick a lot. I also have low blood pressure and would faint when younger. I have no children and had the mirena fitted when I was about 22. Upon fitting it, it did hurt a bit. I was told this was due to not having kids so my cervix being more sensitive than someone who has had children. However, the pain for me was mainly only associated with it being fitted which is not long, a few minutes. I had quite a bit of cramping after so I did not go to work on that day as this was still painful. In the days after the cramping was mild but there. It took a few months for it to settle. But once it did, my periods were lighter and I no longer had to dictate my life around pain. I got low mood from time to time but for me the mirena was the best thing I used. Taking it out was virtually painless. If you go ahead I would maybe wait until after your exams and possibly after your trip, just so you have the time to adjust without the added pressure of needing to be somewhere.
With your GP I agree with others, consider taking your Mum to push this further by way of an MRI scan and referral to a BSGE specialist. GP's can sometimes not take endo seriously and I find that added to this in my experience they can sometimes not take the word of a young person seriously either. I went repeatedly to my GP throughout teens without knowing what endo was and it was never raised. I changed GP surgery and raised my concerns again. Although not a perfect response they did respond much better than my old surgery. As an adult my first scan said no endo, yet after pushing for another scan a few months later it turns out I have severe endo with 2 massive cysts. Same scan done by a different person but in the same place. I wish I'd known sooner and perhaps it wouldn't be so severe. Apologies for the long reply but your words really struck a chord with me. It's your body and only you know your symptoms so continue to push your GP, even if seeing another Doctor. Good luck x
Thankyou for your reply. It's nice to hear of someone who has similar symptoms and had the same difficulty with the GP. I've spoken to my mum and she said we're going to push to see a different GP and try to see an endo specialist. I've also requested another scan, so fingers crossed that goes well also. I'ts nice to know that someone can relate to the experience and the pain. I've decided to hold off until my exams are over and my trip is over, so hopefully all will go well x
I had the Mirena for 4 years, worked brilliantly for a few years but my problems became too severe and had it removed in January. As others have said take pain relief before and make sure someone is with you and can drive you home. I felt weak on my feet for a few days on insertion and removal.
I take a good tumeric supplement, magnesium, Grapeseed complex and multivitamin as well as Searrapeptase 250,000 SPU 2-4 a day. It's really helped with menstral, endo, fibroid, well anything gynae related pain. Do some research has on it in case it interacts with anything prescribed you haven't mentioned on your post.
Make sure you let the school know you may need to leave for a toilet break, I use liliet super ultra and it's brilliant for long meetings and journeys. See if you can take a warm wheat bag in with you as well.
Take care sweetheart and all the bet for your exams.
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