Coil Fitting

Hi, I've never posted on here before but I've been reading posts for a few weeks now and they've helped me a lot.

I'm 20 years old and in February of this year I got admitted to hospital in agony, they thought it was my appendix so had a laparoscopy however my appendix were fine but they did find internal bleeding in my lower tummy, all around my pelvis etc. They drained this at the time.

In the past I've had regular periods - up until I was on the injection late 2012 and my last injection was early 2013.. This stopped my periods completely and they still hadn't returned when I got admitted in February.

The doctor explained that I had blood inside but never actually told me what was causing it, my discharge notes stated retrograde menstration however I was never told what this meant.

A few months went with just doctors appointment with agonising pain typically once a month, but then in May of this year I was so tender on examination in the doctors I got admitted to hospital again. I had X-rays, scans, internal scans, all sorts of tests and my tummy was so swollen just like it had been in the February and the pain was so intense I was on morphine. I was discharged with a course of tablets to try and bring my period on to see if it helped - it didn't. Things have been worse since my periods have started again. I am in pain every single day, and for about one week of each month I'm in that much pain I can barely walk.

In September I had an outpatient appointment where I was told I had endimetrisos, which I was actually diagnosed with in February but nobody had ever made it clear to me that this is what they found during the operation. During this outpatient appointment I had an internal examination and i cried it hurt so much.

The following day I tried to go to work and lasted a few hours before going home and collapsing onto the sofa in extreme agony and so upset being so fed up of constant pain. My mum rang the hospital and they said to get an urgent GP appointment, which I did. Later that day my dr prescribed morphine and told me to rest at home in bed. He told me that I should rest more when I'm getting intense pain- the problem is, I love my job. I studied at college for 2 years knowing it was what I wanted to do and then I'd been left a few months when I got the job in December last year, I'm full time and I'm so scared I'm going to loose my job because of time off so I force myself to go into work because of this. I've never had any time off sick for any other reason, it's always because of this pain.

I had a week off work in September and although my manager is very good and my colleauges are amazing and very supportive, I feel so bad for leaving them etc.

Anyway, my consultant has started me on the pill, which hasn't made any difference because I'm still in pain every day, and she has arranged for me to have the marina coil fitted on 5th November at a local hospital and that I have to try my best to perservere with it even if it has bad side effects etc.

I'm really worried about having it fitted as I'm very tender inside and after having just an internal examination I was in absolute agony for a week after, so I'm scared of having this done and how I'll feel after, and worried about work etc. My GP is a gyno and is very knowledgable when it comes to endo and he's said he will give me a local anaesthetic. Has anyone else had this done and how has it been afterwards?

I've got such good support, my boyfriend of 7 and a half years is so supportive and lovely - most of the time. Sometimes he gets a bit annoyed when I don't want to do things such as days out etc because of my pain. He says it frustrated him knowing how much pain I'm in and knowing he can't take it away from me. So this gets me down too. My family don't really understand, my mum is absolutely fantastic and has had time off work to look after me etc but sometimes she says how can I be going to work one day and then be in such pain the day after which upsets me because it seems like sometimes she doesn't believe me, although she says she does. Other family members say things such as 'Just bad period pains' etc and basically the whole thing is really getting me down now. I'd love to hear from someone. This is great for support so thank you in advance.


6 Replies

  • very typical description of life with endo....sadly all too common.

    On the Mirena side of things - it does take a few months to get to work - it does much the same as Depo-Provera injections - works by thinning the lining of the womb regrowth over time to the point where there is not much if anything there to shed away and cause bleeding each month.

    About 4-6 months on average of more periods which is something to endure as best you can.

    You might find that taking drugs like norethisterone will help you control when you have a period in the meantime - as stopping the tablets will induce a period to start in a couple of days after stopping - so you can to some extent control when you are 'On', and target that for when you have leave or long weekends so that you are not actually taking too much time off work.

    It is well worth sticking with mirena - even if in the early stage you experience twinges and tweeks of pain as it settles in - they shouldn't be long lasting and won't be as severe as period cramp but they can catch you off guard.

    Once the mirena is settled in, the periods stopped and the mirena is held in place fairly firmly by a build up of cervical mucus goop holding it more securely you shouldn't feel anything at all from it, other than the strings which can be felt in the vagina if you go rummaging in there.

    It can be sore for a couple of weeks after insertion -because they use a speculum to stretch open the vagina (hopefully with local anaesthetic you won't feel that at the time) - but it will bruise and tear any adhesions holding the vagina closed like a corset round the outside. This tearing is what causes pain with sex and internals. they are fresh wounds and will need time to heal. so be sure to have pain killers to take for at least a few days afterwards and any time you feel it is a bit too uncomfy.

    It does improve - and only a small number of ladies cannot cope and have to have the things removed.

    Most ladies do manage to get through the settling in stage and stop their periods and after that think it is best thing since sliced bread, because you literally can forget about and start living again.

    Sounds like you might have a keeper of a boyfriend there - a lot more understanding that many of the toads out there. It's such a tricky disease to explain because it is so hidden, and we don't help ourselves much either by continuing to battle on without complaining till it gets so bad that we have to curtail our activities.

    Don't know if you have seen the flyers on google images for explaining endo or endo awareness,

    but the one that caught my eye was It really does sum up in one leaflet what we struggle to get across to other people.

    Give mirena a chance to work and it will repay you a thousand times over when it does work.

    So much more time free of periods and pain to be doing things you want to do is worth its weight in gold.

    Very best of Luck - and remember that you can ask to be knocked out completely for mirena insertion if you try with a local anaesthetic and it is still too painful and you have to ask them to stop.

    Wishing you ever success with it. hope it works as well for you as it has for me.

    I'm 3 years down the road and love that I no longer have periods.

  • Thanks Impatient this has helped me! I was fitted with the coil about a month ago - without any local to begin with and it was so painful I nearly passed out! Dr was not aware of the endo and was just fitting it as contraception I often have this problem as frs just pass you from pilar to post and think the hormones you are on are contraception only. KW94ox good luck I was ok once they put some local in - apparently my muscles were going into spasm before that. Just make sure the Dr who fits it understands your pain issues mine was clearly in a massive hurry and didn't sk me anything and I'm very bad at asserting myself with doc even after years of dealing with them....c

  • The Mirena coil in my understanding is the best way to deal with endo and won't have the same effect on your mood that the pill, injection or implant can do. I am one of the very few people who just couldn't get on with it and am gutted that it didn't work out for me. Definitely give it a chance; do be prepared for it to cause considerable pain while it settles in as Impatient says (this should hopefully only last a few months) and just speak regularly to your doctor/gynecologist about any untoward symptoms. I really hope that this works for you, because it really has the potential to make such a dramatic improvement to your pain management and also to stop the progression of the endo, therefore improving your chances of fertility.

  • This is basically what I went through however I had the implant for 3 years, it was great and had took away my painful periods from the start so when it had come to the end I got it replaced with another, that's when all my problems started heavy bleeding and pain etc. So they put me on the pill on top of that to see if it made a diff which really only made thing worse. In May this year my boyfriend had to rush me to hosp & I was admitted with severe pain that they thought was appendicitis however wouldn't give me a lap instead I got x-rays and ultrasound scans which showed a large cyst on my right ovary so I got discharged and told to suffer the pain for a while. When I went back the cyst had gone but the pain had stayed so through elimination they've came to the conclusion it's endo. 6 weeks ago I got a hysteroscopy, biopsies and got the coil inserted, I was anaesthetised for it as I am so tender down there and internals cause me a lot of pain. As soon as I woke from it I was getting strong cramping and period like pains, unfortunately these havnt gone yet for me and I've had a constant heavy bleed from the day I've got it in but I'm still hopeful that it will help it's only been 6 weeks like. As for your job I know exactly how your feeling, I studied for 2 years to get my quals and abso loved my job, I went until I physically couldnt get out of bed it was so depressing having to give it up but there was no other option I'm constantly bed bound with the pain there's nothing more I could have done to prevent it. I know how it is with family also, my mum & dad stopped speaking to me for about 2 months, all the help with dinners stopped and lifts to hosp stopped and I'm only 22 I'm still living at home with them so it made life very difficult only now are they speaking to me again but it's only about we silly things, I don't know if I could have another convo about my health as I'm fed up with all the harsh comments and criticism, my bf is great though and defo gives me the support I need. It's a horrible illness to get like and it's hard not to get upset and feel low with it but stay positive! I wish you all the best for the future and good luck with the coil misses xx

  • I'm post lap op and had the mirena coil inserted. Time will tell if this will help reduce the heavy painful periods which have plagued me since aged 12 (I'm 41). They also diagnosed endo attached to my bowel. The coil was my last ditch attempt to stop the heavy periods. I have spoken to others and no that it doesn't work for everyone but the pill was not an option for me as in he next 5-6 years the onset of menopause will commence & I didn't want to start on the mini pill to come off it. I've resigned myself to the fact that I'm not going to have children and if the coil doesn't work then i will seriously consider a hysterectomy. My family & friends have been amazing even my work colleagues understand how important this is to me, I'm sorry that your family network is not there for you but your boyfriend is. I'm also glad that I have found this forum where you can speak freely and will never be judged as you're communicating with likeminded women who are going through something similar. All the best for you and I hope your decisions work out for you x

  • Hi, personally I believe putting something foreign and unnatural such as an IUD in your body comes with it's own issues. If it is helping you that's wonderful. However it's always good to be completely aware of your other options, like from a non medical point of view. The body reacts so well to holistic therapies. Some times it's even a more affective option in terms of dealing with pain, than pills or operations.

    It might just be worth reading this:- I'm twenty five and I have just had a laparoscopy and a blood filled cyst removed from my ovary. I have not been in as much pain as you're describing luckily. And I do hope your pain has subsided. However since 2011 I have been suffering from a yet to be diagnosed:- "aching pain on the left side of my pelvis, by my ovary. After a laparoscopy, they are still unable to diagnose exactly what is causing this pain. They have told me their findings, I appeared to just have had a little bit of endometrious when they operated. However they are still investigating whether or not I have more. I have been told to "persevere" through the pain of the IUD Mirena coil. But why exactly persevere pain from a alien object which is metal inside our womb. It doesn't belong there and it comes with a load of it's own risks. Medical isn't always the best way to go, knowledge is power. Know your options.

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