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Endometriosis UK
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Options other than Mirena coil

Hello,

Sorry, this is going to be a bit of a long one, but I want to give my back story so that hopefully I can get some much needed advice.

I was diagnosed with endo at the tail end of 2015. Ever since beginning my periods at age 12 they were always excruciatingly painful and heavy.

At age 18 I started to take the contraceptive pill Mycrogynon when I became sexually active and all was fine and dandy. Then the summer of 2015 I started to get migranes. I thought this was because of my living conditions at the time - house share in London, no curtains on my windows and a dog which used to scratch on my door in the early hours, so I wasn’t sleeping. Naturally I assumed that this was the cause, but out of concern my doctor took me off of Microgynon and put me on Cerelle.

Cerelle was a disaster - constant bleeding for the 3/4 months I was on it. The doctor then decided to switch me across to Cerazette, which was even worse and how my diagnosis of endo came about. I used to get the most horrendous pain and cramps, sickness and Terrible pain and bleeding during sex. I would literally be curled up in a ball in my bed in tears when the pain would strike. I was having periods every 3/4 months, but had horrible breast tenderness when they were coming on and I came to my own conclusion that perhaps my body needs a regular bleed like Microgynon provides.

Following this, the doctor referred me to several specialists - had many scans/ swabs/ ultrasounds etc. which concluded my endo diagnosis and multi-follicular right ovary. I was then given two options - surgery to remove as much as the endometriosis as possible, or go back onto Microgynon. The doctor explained that if 10,000 women were not on the combined pill, 10 of them would naturally have a stroke within their lifetime. Then if you had 10,000 women who were on the combined pill, 11 of them would have a stroke in their lifetime. This gave me some reassurance that I wasn’t at a high risk of stroke if I went back on the Microgynon and as I said before, at that time I was convinced it wasn’t the pill which caused my migraines in the first place, as had never experienced anything like this before.

So I went back onto Microgynon on the understanding that if I started to get migranes again, I notify the doctor immediately.

All was fine until the middle of this year. I started to get the same types of migranes as I did before, and worked out that I would get at least one when I was 2 weeks into my 3 weeks of pill taking. I was due a sight test at a similar time, but they confirmed that my eyes are healthy and that my migranes weren’t being caused by needing a new perscription. So I phoned my doctor, who honestly was out of options at this time and told me to book an appointment with my local sexual health clinic as they would be able to better advise what to do.

6 weeks later (mid September) I saw the nurse at the sexual health clinic and was most concerned about my migranes and told me to stop taking Microgynon immediately. She said I was at risk of stroke, or clotting, or a bleed behind the eye. We discussed all options and she told me that my only options were either the Mirena coil, or to not use any contraceptives (apart from condoms obviously) and just deal with the pain and irregular heavy bleeding as best I could. I’m 27, so going through potentially another 20 years of pain and heavy irregular bleeding scared the hell out of me, but to be honest so did the coil.

I’ve heard horror stories of the coil, but the nurse was very thorough with her explaination and procedure and answering my questions. I figured if it doesn’t work for me, then at least I can have it removed. She then booked me in to have the coil fitted on 7th Nov.

So I had the coil fitted today, the doctor and nurse were lovely and did their best to make me as comfortable and ensure the procedure was as quick as possible, but honestly it was the worst pain I have ever experienced!! I took my pain medication prescribed 1 hour before, followed by a local anaesthetic when I got there, but it was so painful I ended up being put on gas and air. I got all clammy and my hands went into spasm from the gas and air. My doctor asked if I had any children, as the entrance to my uterus was very tight so every time she tried to insert the coil it clamped up and I’ve been having bad period style cramps all day as a result - which I know is normal. I was expecting it to be uncomfortable, but not to that extent!

Now I know it’s only day one for me, but after this experience I’ve just had so many questions that have been going through my head that I have worked myself up over it. I don’t know if it is just a knee-jerk reaction, but I am already regretting it. If I have to go through that another 3 times during my fertile years - can I really do it? If it’s that painful going in, what on earth is it like being taken out? Is it better? Is it worse? What if this doesn’t work? How long should I test the coil for? Are there any other possible options left that I can explore? Are doctors reluctant to take it out unless you say it’s because you want to start a family?

Just feels like I am between a rock and a hard place. 💔 So any advise really would be greatly appreciated.

Thanks so much for bearing with my story x

29 Replies
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Hello! I am sorry to read about your experience. I can sympathise because the exact same thing happened to me. I tried all forms of contraception until the only option left was the coil. I too have endometriosis and had surgery back in 2013. When I went to get the coil fitted, my uterus went in to spasm and I fainted. What should have taken 10 minutes took over an hour. It was a truly horrible experience and one I won't forget. I felt the same as you after, but persevered because I felt like this was my final opportunity to sort things out once and for all. 2 years later, I still have heavy periods and they are still painful, although not as painful as they were before. I have kept it in because I have been living abroad for the past 2 years and frankly, I am sick of what feels to be an endless battle. The coil hasn't given me any adverse side effects unlike other forms of contraception, but I would suggest that it hasn't dramatically improved my symptoms either. I still get extremely painful cramps for around 3 days, but they do not make me sick as they did before. Like you, I constantly wonder if the removal will be as horrific as the insertion. After this experience, I know 100% that I don't want to get another fitted after my current one has expired.

You'll need to go back for a check-up to make sure that everything is alright. I would give yourself this time to think about your options. I've read that many times, people with the coil are told to preserve since it takes some time for the coil to 'settle'. However, I would argue that you know best in regards to your body and what is right for you.

Have you tried other forms of contraception besides the pill? I was on the injection (which lasts for 3 months if I remember correctly) for around 1 year but wanted something more permanent so opted for the implant. After 6 months, I had gained a lot of weight so asked for it to be removed. Looking back, I think that the injection was the best form of contraception I have taken.

Sorry that my response doesn't offer advice as such. However, I wanted you to know that you're not going through this alone. I often used to think, and still do at times, 'why me?'. It is a little easier if you reframe it as 'why us?'. I am sorry that you've been through the mill. Sometimes it sucks being a woman! I hope that you can explore a few different options and come to a more solid conclusion. Good luck and all the best.

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Hi Jazzyjeff11,

Thank you so so much for taking the time to reply to me, honestly means so much!

It gives me some comfort to know that you also have had similar experiences to me and are a little further down the line to be able to offer some advice.

I think I am just perhaps a little emotional from today/ overwhelmed by the procedure, so hopefully I will start to feel a bit better in a few days.

You are so right in that it is hard to be a woman sometimes with what we go through, the same thought has gone through my head multiple times today! I can also completely relate to the “endless battle”. I swear if men suffered from these same issues, a suitable cure, or prevention, or better means of manageability would be found a lot faster!

I would agree that I don’t want to go through that insertion process again... so that’s something also to consider when the time comes of having it removed of what, if any, options there are left.

I have a check up booked for 9 weeks time, which I think is a bit odd as in the leaflet I was given by them in September, it said my first check up should be in 4-6 weeks. The doctor did say though that if I had any issues to ring them. But here’s hoping I won’t have any...

The nurse I saw in September did say about the injection, but that it wasn’t that concrete as to whether it would help with my endo, and would most likely have to take a pill as well, which seemed exhaustive and counter productive. She also mentioned weight gain, which obviously doesn’t really appeal. I couldn’t have the implant due to my migranes, and if I’m being totally honest, the idea of it freaks me out a little!

Thank you for reassuring me that I am not alone, it really does mean a lot. I’ll persevere for now and hope that when the time comes for removal of my coil - either by my decision or because the 5 years is up, that I have at least one other option to try.

Good luck and all the best to you too. x

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I had my first coil before children , and remember the cramping after it does subside , I’m under an excellent specialist and he has advise that the coil is a good treatment for endometriosis and it’s also a localised treatment. Give it some time

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Hi emmaloulou,

Thank you so much for replying to my story/ questions.

I’m still a little crampy this morning, but not a bad as it was yesterday, so hopefully this is a good sign it’s calming down.

Thanks for sharing your specialists’ advice, I will give it time and see if this does work for me.

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I had a coil fitted and felt exactly the same way you do, totally regretted it, wondered why I had agreed to have this alien thing inserted in the first place (desperation and no other choices) so I think it’s a pretty normal after effect. It has helped though and now I’m going through life without any bleeding and I’m living pain free. Before the coil 2 weeks out of the month I was utterly miserable and in pain.

The fitting was horrendous, the pain the following couple of days awful but after that it subsided. I then had constant light bleeding for 6 months, I think I’d have given in during that 6 months (the bleeding was very disheartening and there was still some pain but not as bad as what I had before) and requested to have it removed If it wasn’t for a complication where I needed surgery for a urethral diverticulitis so whilst that was being sorted and doctors were poking around down there sorting that out, the coil had to take aback seat. But it did result in me having to give the coil 6 months and after that everything seemed to calm down, the bleeding and pain stopped. I now feel like I live like a normal person again.

So I guess my advice is, everyone is different, you need to just see how your body gets on with it for the next few months and now that it’s in whether they take it out in 5 years or 6 months they’ll have to take it out at some point and I’m sure there’ll be pain. But now that it’s in maybe try and give it 6 months to see if it helps. If it means you get less pain and you can live pain free for a couple of years that’s a positive and from my perspective whilst the fitting and following days were bad it was worth it.

But I totally understand how miserable and how much you regret it right now.

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Hi SleepyGardener,

Thank you so much for taking the time to reply to my story. It gives me some comfort to hear that you also went through the same emotional feelings after having the coil fitting. I’m pleased to hear that it has worked for you and you’re now living pain free.

Lots of women have said that they either had constant heavy or light bleeding for 6 months, so we will see how my body reacts. I know it must have been so disheartening - I felt the same when I was on Cerelle and was bleeding constantly. But I’m glad you managed to come out the other side.

I’m still feeling a bit unsure about it all, but I think it’s just getting used to having something forgein in there, the unknown if it will help and just the worry over the pain. I guess it just shows that I do need to persevere and give it a bit of time to see if it does work.

Thanks again.

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Hi

I’m so sorry you had such a rough time having the coil inserted. I had one fitted a few years back and still remember how painful it was. Sending you big hugs and hoping the cramping will have calmed down for you by now.

Everyone’s body’s are different and there’s no way of knowing it will work for you or not unless you try it. I’d say you’ve been through the worst bit now which is the insertion - having it removed is much easier and nowhere near as painful honestly. When I had mine removed it took 2 minutes and I didn’t even know it was out (mine had also gone further up in my uterus and the strings couldn’t be felt, so I was expecting a lot of prodding and poking but it was fine).

I won’t go into detail about why I decided to have mine removed as what happened to me is extremely rare but I had it for 9 months. In this time I still bled every month, still quite heavily. I actually thought the coil had done nothing for me until after it was removed. It was only then that I realised/remembered just how heavy my periods are without it. Whilst I still bled heavily and had cramps every month it wasn’t as bad as what I get without it - hope that makes sense. Some women don’t bleed at all after a few months, typical of me I would but there you go! My periods are super heavy for the first few days.

I also have endometriosis and had my left ovary removed because of it 3 years ago. I totally understand how frustrating and depressing it can be. It’s a horrible condition to live with and unless you have it yourself, I don’t think anyone really understands the pain it can cause or how debilitating it is. Because of my health conditions I can’t take the pill or use anything with hormones in so just put up with it every month.

I hope this is of some help but if you want to know anything else just ask. Hang on in there. Get yourself a hot water bottle for a few days and try not to do too much. Be kind to yourself and I really hope it works for you!

Cath xx

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Hi Cath,

Thank you so much for replying to my story and sharing your experience/ advice and for your kind well wishes. I am feeling a little better today, still a bit crampy but not as bad as yesterday, so hopefully that means it’s settling down.

I’m so relieved to hear that the removal isn’t as painful as the insertion. That makes me feel a little better, thank you. It’s also good to know that it wasn’t an issue even though yours wasn’t a straight forward removal.

In between me stopping the Microgynon and having my coil inserted, the nurse gave me a “bridging” pill - Zelleta, which I have to keep taking for the first 7 days after my coil insertion. Did you have to do something similar? And if so, was it after you stopped taking the pill that the bleeding then started?

It makes total sense about your periods and pain with the coil and without. It just shows how bad it really is! I think you’re very brave for just powering through it as best you can every month. I’m sorry that you’re not able to take anything to help manage it. It just shows how few options there are to help with the symptoms.

If you work, is your employer quite understanding? As you say, if you’re not a sufferer people don’t necessarily understand and think you’re just having normal period cramps!

Your story and advice has helped and reassured me, thank you. My mum is actually coming to visit me for the weekend, so it will be nice to have her around while I am feeling a bit under the weather.

Thank you, I hope it works too!x

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You’re very welcome and I’m so pleased you feel a bit better today! Hopefully every day will get better for you from now on...

Yes removal is definitely nothing like the insertion! (In my experience anyway)

Unfortunately I can’t answer about the pill as I came off the pill a few years before. Before having the coil I was having injections, I think it was called prostap, which stopped me having periods completely but brought on a temporary menopause and symptoms related to that. I had my coil fitted before the last injection wore off. I have to say that was the best time for me, no period or pain for 6 months! But I couldn’t stay on them permanently. So my periods started once the injection had worn off.

I do work and I have to say I’m very lucky I have an understanding employer but funnily enough I have a meeting with her this afternoon about reducing my hours down to 3 days a week. At the moment I’m off sick after having open heart surgery so when I go back I don’t want to be full-time. I’m a teaching assistant and can’t just leave the class to run to the toilet all the time at the time of month so it’s really difficult. Going part-time will help and I’m hoping that most months my period will come on my days off! How about your employer? How are they with you? It probably helped me that she knew how bad I was a few years ago when I had my ovary removed. I was off for 3 months then.

Enjoy your weekend with your mother! Perfect timing, Mams always make us feel better and she will help take your mind off it too hopefully 😊 xx

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Hi again Cath,

Thank you! Yes I am relieved that the pain is subsiding, hopefully I will see improvement to my endo symptoms shortly.

No problem in regards to the pill question, it seems that everyone has had different experiences/ medications/ procedures before ending up on the coil from what I can tell from the helpful replies I have received here. That injection has never been mentioned to me as an option, but maybe something I can ask about further down the line if need be. Although I’m sure it also comes with its own side effects with being put into a state of menopause! Others here have notified me that I can actually ask to be put under anaesthetic for the insertion, so this is something I am going to ask for if I do decide this method works for me!

My goodness, I hope your recovery from such major surgery is going ok and it’s great that you have an understanding employer. Hopefully they will respect your wishes while you are still in recovery.

My employer has been very understanding when I have had other illnesses before (I’ve suffered with an aggressive intestinal infection and kidney infection this year) and I do have the option to work from home if I need to. But with endo being an ongoing and often unpredictable illness I’m not sure if it could potentially wear thin. I had a brief discussion with her and the HR manager yesterday following my insertion and allowed me to go home early.

Yes! I’m hoping it will be a nice visit for both of us and be a good distraction from the past few days!

Thank you again 🙂 xx

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Hi, I’m so sorry for my late reply! I hope by now you’re feeling much better about things and had a lovely weekend with your Mum.

I’m glad you have a supportive employer and I would definitely jump at the chance to work from home on your bad days. Don’t feel guilty!

Good luck xx

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Well done for going through that. I've had the mirena and the copper coil before I had endo, and now that I have it im terrified of getting another one out back in. Knowing how much it'll help me but knowing how awful it is to get inserted is such a tough one. But one thing I can assure you on is getting it taken out is wayyyyyyyy less painful. So don't worry about that. And at least you don't have to think about it again for 5 years (or however long the mirena lasts)! So well done!! Hope it reduces your pain I think I have to do it now... 😖

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Hi Tayfray,

Thanks so much for taking the time to share your experience with this. It’s nice to know I’m not alone! The fact you say the removal is way less painful is good to hear and has given me the reassurance I needed.

It is tough to weigh up the pros and cons of having the coil inserted, when it’s painful to go through, but similarly it’s so painful to not have it. It’s something I am a little worried about if the coil does work for me - knowing that I probably won’t be relaxed at all for another insertion because I’ll just be thinking about how painful it was first time. Maybe that’s why they make it last 5 years - in the hope you’ll forget!!

Thank you, after going through all that, I hope it works too. If you do decide to have another coil fitted, I really hope it’s a painless and quick as possible insertion for you and you start to see the benefits again really soon after.

Good luck! x

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I'm so sorry you had to go through all this. I would say that, compared to my experience - and in relation to what is supposed to be 'best practice' for the diagnosis and treatment of Endo - you have been rather badly treated by many of the Medics you have seen. I had bad endo for much of my adult life. Plus, as I'm so much older than you, much less was known about endo - and even less was done, for a long time - so I wasn't diagnosed until I had a lap, at nearly 40, but I was not properly treated until my early 50s.

For me, then, the route to a pain free 50s-60s, was seeing a leading gynae - privately - and having a mirena fitted, but under anaesthetic, as the gynae said my cervix was too small for insertion (I've never had children). It sounds to me that you should have been offered an insertion under anaesthetic … However, now that you do have the mirena in place, do, please, try to stop worrying about the removal: partly because it is easier. My lovely GP did mine, and tho' it was painful, it was nothing like, even ... a cervical smear. We ended up laughing a lot, tho' she had scheduled a long time slot for it, & had a nurse (ready, doing paperwork in the next room) on standby, just in case I fainted - not from pain, but because the cervix sometimes makes that happen (it's quite common, hence maidens 'swooning' when they finally 'surrender' to their princely lovers!).

However, much earlier you could have, should have, been offered an insertion under anaesthetic - I know older friends, who have not had children, but have been able to insist on it.

More importantly, I think you should have been offered a laparoscopy, at some (several) points in the past. This is done under anaesthetic, so that a skilled 'endo-gynaecologist' can look inside your abdominal cavity, and identify the Endo, note if different types of endo are present, and see where it all was - and if any of it was in dangerous and difficult to remove areas. Then, they may have been able to remove any simple and identifiable endo, and/or pass you on to skilled Endo specialists in the BSGE clinics, who would be able to deal with any more difficult endo. Frankly, I cannot believe that you have never been offered a laparoscopy.

However, now that the mirena coil is in situ, if the pain continues to ease, then try to see how it goes for a few months. I found that any pain from the op was over after a few days, then general discomfort began to fade, and as each month went by, my period pain was less and less, until by the 4th month I had no pain at all. Soon my periods stopped completely, and I had 5+ years of bliss, before the removal ... by which time I was post-menopause, & I've been fine, since. In your case, being so much younger, if you had the mirena removed under anaesthetic, they could put a new one in at the same time - as well as checking the health of the uterus.

I hope this helps, a little. Obviously things are very different for you - not least your age - but I would try to stick with the mirena, at least for a few months, and see if it works for you - I hope it does. Meanwhile, do read around on here, and try to become much more endo aware, especially 'proper treatment-wise' and even become an 'Endo-warrior' as so many women are still not getting the treatment that they both deserve - and which is actually laid down in official protocols that too many GPs and other gynaes are ignoring.

Take care,

Gritty

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Hi Gritty,

Wow, thank you so much for your detailed and informative response, it really is much appreciated.

I had no idea that I could have had the coil inserted under anaesthetic. If this method does help with my symptoms and I decide to continue with it, this is most certainly something I will insist on for next time. Perhaps because I got my coil put in with the NHS they’re more reluctant to do this than if you go private? I will explore my options for this anyway.

Thanks for your reassurance on the removal and for the heads up that some times it can cause fainting. I’m surprised I didn’t pass out with the insertion to be honest! I certainly don’t want to be “swooning” over a coil 😂

Yes, aside from the brief mention of it when I was put back onto Microgynon, a laparoscopy has never been mentioned to me. Do you think this is because of my age? Or because they just think they can provide me with something to stop it so I don’t need one? Should this be something I insist on, even though I’ve had the coil fitted?

I’m glad to hear that the coil worked for you. Here’s hoping it will also be as successful for me. Especially after going through the pain of getting it put in!

Your advice had helped me a lot, thank you. Yes I have read a few of the posts on here since I posted last night. I felt like I wasn’t getting any answers or support from where I should be - my GP, so turned to here for some much needed and frankly better information! I will continue to read up and hopefully be better informed for my ongoing journey with endo. x

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I am a huge migrain sufferer, so I have never been able to take birth control pills. I have a long story as well.....but skip that........

I am 47 had a coil fired 6 weeks post lap. My insertion although not pleasant was fine. The first three days felt like a very bad (period) then it got better.....I didn’t have all the side effects that people complain about and I noticed a change in my pain level in about a week.

I was quite happy till the darn thing slipped out of place and they had to remove it. That took 10 seconds and was like really no big deal. Kinda like getting pinched.

It only took three days for the pain to come roaring back. So now I get to go under to get the new one fitted cause they want to do it at the hospital under scope so they can make sure it is placed properly.

My Gyn said it was likely my fibroids that caused the problem with the least one

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And you can always ask to be sedated next time they have to insert

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Hello ElaineKC,

Thank you very much for taking the time to reply with your experiences and for your reassurance, it is much appreciated. The pain from yesterday I am pleased to say, has subsided a little today, so hopefully it continues and I see a good improvement with my endo symptoms shortly.

It’s good to know the removal isn’t as hard going as the insertion and I will definitely ask to be put under next time if I decide this method works for me. So thanks for sharing this.

I hope your next insertion goes ok and the coil doesn’t slip again! x

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Hello!

Just to say, I read your story and can 100% relate to almost every single point. To give you some background to help; I was on various types of pill for extremely heavy periods throughout my teens and early 20s (I'm 29 now) all of them made my migraines (which I had already started to suffer from) ten times worse.

I was diagnosed with endo in Summer 2016 during a lap, and went straight on the pill back-to-back as I did not want to try the Mirena coil at that stage. For the first 3 months it was bliss - no periods, minimal pain, and generally feeling much better. 4-5 months in, my migraines returned much to my horror, and I was also experiencing severe night sweats every single night (to the point that I was soaking through my pillow, duvet and mattress), hot flushes during the day and my moods were horrendous. I saw my consultant and I then had tests for early menopause (which thankfully were negative) and after that she said I needed to come off the pill immediately.

Unfortunately, without the apparent protection of the pill, my endo returned with more severity and I had second lap exactly a year ago, along with the Mirena coil fitted. I'm not going to lie and say it was an easy 6-8 months - it really wasn't. I had spotting and light bleeding pretty much every single day for the first 6 months, along with bad cramps and all the other nastiness that goes with it. I also had a fairly large ovarian cyst grow (the mirena can cause cysts) which caused me a lot of pain, but thankfully that disappeared on its own.

It was only May/June this year that the bleeding stopped and the pain went. But that time since has been so so blissful. My periods stopped completely, I've had about 2 migraines this year in total (I was having them multiple times a month before), and I feel SO much better in myself overall.

I actually had mine removed on Tuesday, as after Christmas my partner & I are going to try for a baby. I was so so nervous to get it removed as I have read so many horror stories, but I can say without exaggeration that I could not feel it being removed! I thought she was still fiddling about with the speculum and then 2 seconds later she said "all done!" I couldn't believe it. Since then I've had very light cramps but not even a spot of blood or anything else yet. I realise that could be short-lived, but I am prepared!

I know everyone is very different and we all have different experiences, and I'm so sorry that your experience of getting the coil fitted wasn't pleasant (it sounds really horrible and I hope you're getting some rest and TLC), but the point of my long rambling essay was to let you know that perseverance really can pay off. They always say the Mirena takes at least 6 months to settle, and for some women it can be a year. But it has been proven to be one of the most effective methods of keeping endo under control. It's also been suggested as being one of the kindest forms of contraception to us migraine sufferers. I think that's why I kept going through all the cr*p times with it, and honestly it really was worth it.

Please feel free to ask me anything at all as I really can relate to everything you say. But I really hope you feel better soon (and sorry again for the huge essay!) xxx

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Hi Nicola2401,

Thank you so much for taking the time to share your story with me, I really appreciate it!

It’s nice to know that someone has had the same sort of experiences that I have - as unpleasant as they are! I’m sorry that you’ve had a rough time of it and that it took a long time to see any benefits from the coil, but pleased that you are now feeling much better as a result!

I will have to keep note of the fact that I might still get migranes. Are there risks involved if you get migranes with the coil? I also wasn’t informed that the coil can cause cysts. As I have a multi-follicular right ovary, you would have though this would have been mentioned to me, or further assessed before the insertion!

That’s wonderful news that you and your partner are going to try for a baby after Christmas. I wish you all the best! Thank you for reassuring me that the removal isn’t painful or too much of an ordeal. It’s great that you haven’t had any symptoms since, here’s hoping that continues or at least is a lot more manageable while you are not using the coil!

I will persevere with the coil and hope that it is the solution I need to keep my endo under control. No problem at all for the long answer, I appreciate the time you took to write it and honestly it has been so helpful!

Thank you for your well wishes, I wish you all the best too! xx

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Hi,

Just out question was there any particular reason why you didnt wanna go for the surgery instead??

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Hello,

At that time, the specialist didn’t seem to think it was an urgent matter for me to have surgery to investigate. He told me that all of the tests I had gone through gave them enough information to confidently diagnose me and the best option was to just go back onto Microgynon, then sent me on my way. Obviously at that time, I had limited information provided as to what endo actually is and what it entailed. However, as time has gone on I am wondering if I should request the surgery, or why no one has recommended that I have the lap since.

Have you had the surgery? Or due surgery soon?

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I think you should probably consider discussing the lap with gynae or your GP as once you remove the endo and start on hormonal treatment again the growing of the tissue will be very slow or it may not come out again at all !

I've tried many hormonal contraceptives before and it just seems to be a game of which will work.. like a pick and mix really. Defo consider the lap and atleast have a discussion as it may decrease your symptoms.

I have had a lap a few days ago and I'm still figuring out on which hormonal treatment I should begin

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Thanks for your advice on this, I really appreciate it. I actually have a doctors appointment booked for later this month, for something unrelated, but I will speak to her also about this. Hopefully she will then be able to refer me to a specialist gynae.

If it could help with reducing the symptoms or maybe making it go all together, it’s definitely worth asking!

Totally agree with the “pick & mix” it’s mad that there isn’t something more concrete that is a better solution for the majority of women living with endo.

How was the lap? Was this your first one? Wishing you a speedy recovery, and hopefully a pain free future! Have the doctors recommended anything to you?

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I had my first lap just a few days ago and unfortunately, they werent not able to see endo :( .. they found a small hernia and I must say I am quiet disappointed because this means I will have pain for some time until I am treated once again.

I cannot imagine me having to deal with pain again, but I think I'm gonna start microgynon again just to have a break. (This was also the doctors advice).

But by all means if you have been diagnosed with endo deffo consider lap as it does help to reduce symptoms and it will grow much slower or even disappear as I mentioned before.

I wish you the very best and I'd love it if you could keep us up to date with everything. I know its much easier talking about this with people who experience similar pain xxx

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I’m so sorry that they didn’t find what you were expecting to and that you haven’t really got any answers from the surgery 😕 did they atleast treat the hernia?

I found Microgynon so helpful, and felt so diheartened when I was told I would have to stop it again. I hope it gives you the pain relief you need until you get some better answers and treatment. But yes I will definitely consider the lap.

Thank you so much, I wish you all the best with your journey too. Yes I will give an update in a few months with how I am getting on with everything. It’s so great to have had so many responses to my worries and hearing that so many are/have been in the same boat. It makes you feel less alone. I’m already so glad that I found this community. xxx

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Sadly they didnt treat the hernia and I will have to do a seperate surgery for that.. so its gonna be pretty scary i guess.

Nevertheless, I am absolutely happy to help you out with any questions you have so do keep us updated darling, and I hope everything goes well with the doctors and they are able to offer you what you need lovely xxx

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Oh that’s so frustrating 😣 having to go through all that and get no answers and the one thing they do find they don’t fix!

You’re very brave for facing more surgery to fix your hernia. I hope it goes well for you and if it has been causing you any pain, that it helps. I’m very lucky to have never had any major surgical procedures, but I would be very nervous also, so can understand your trepidation!

Thank you so much again, your support really has helped me and reassured me. Please also keep me updated with how you get on. I reallg hope you get the answers you need soon also! xxx

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Dont worry about lovely.. and good luck with everything ! xxx

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