21, Mirena Didn't work, Cannot take the pill help

So I got diagnosed May 2015 during a Lap and had 5.5/6 small parts of the womb removed due to Endo, had the Miren coil put in Oct 2015 and removed just over a week ago, so 11 months. 11 Months of pain, suffering I couldn't take it any longer.

My boyfriend and I have been together coming up three years, he is 24, we both still live at home and haven't made any plans to move out... When I had my coil removed I was told to get on the pill or have a child... When I put this to my boyfriend he's freaked out, were not speaking... Is this it? He doesn't want children ANY time soon, I love him but not sure If I am willing to give up my chances of a family. Can someone help?

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  • Oh I do feel for you, it a hard decision, but I would say don't panic just yet, have you been seen at a bsge specialist centre or just gyne , gynes often miss endo in certain circumstances and endo centre are you best place to get a true account of what's happening,

    If you go on the pill and gave had a thorough excision job done then you could be good to get pregnant in years to come,

    Good luck xxx

  • A little shocked that a doctor said "or have a baby"

    As Tboag mentioned, are you at a BSGE endo accredited hospital ?

    Because it could make difference, the coil may not have been in a good position.

    You are still young so please don't think you have to rush into a drastic decision x

  • I know this may sound a little silly - but my first advice is not to panic! Here's why...

    I accept that both you and your boyfriend are still pretty young, and living at home, with no desire to start a family immediately. I also acknowledge that you have been diagnosed with Endo. Whilst that may seem a difficult situation, if you look at it a different way, it's actually not a bad thing, at all.

    Man women (including myself) suffer with Endo symptoms for YEARS before they get a correct diagnosis and treatment. In my case, it was NINE YEARS before I got the right diagnosis. Whilst Endo is not being identified and treated correctly, it can continue to grow and spread - so a GOOD situation is one in which your Endo is correctly identified and treated quickly. At least in YOUR case, you are now aware that you have Endo - so you are in a good position to keep an eye on symptoms, and to be able to keep it under control.

    You say that you have had a lap, and had the Mirena device for a while. When it comes to HORMONE TREATMENTS (which include the Mirena) different things work for different women, and if you are keen to go down that route, then it's best to identify what works for you. Like you, I had the Mirena for a while, and did not like it. It can be painful on insertion, and in some cases it can slip. Don't be disheartened because the Mirena was not for you - there are other things that may be.

    I do feel that it was both silly, and insensitive, of people to tell you that you should now go on the Pill, or have a child. NOBODY has a right to make those choices for you, or to force you into deciding. When it comes to starting a family, you MUST do this when it's right for YOU. There is nothing worse that going into such a big decision unprepared or feeling pressured. Having kids is NOT something that you should take lightly - at the end of the day, you have to be both emotionally and physically prepared for it, and your husband/partner must be too. You must also be financially capable of supporting a child for as long as it lives with you. The fact that you and your boyfriend may not yet be ready for kids is no big deal. Really. Don't allow "scaremongering" tactics to affect you.

    Even though you have Endo, there is no reason to abandon hope of having a family in the future. Endo is NOT a pleasant disease, but us women with it DO manage to cope with it - and plenty DO and up having children. Think about it this way... There are lots of women out there trying to start families, and many DO NOT have Endo. Even women who don't have Endo can find it hard to get pregnant - there are plenty of reasons besides Endo that can lead to infertility. Also, MALES can be infertile, so some couples who can't have kids find that it is the man who has the fertility problem. Still, people who have fertility problems and are eager to have kids DO find ways - such as IVF, surrogacy, fostering and adoption. If you are keen to do something, then there are always different ways to achieve it. So no need to give up hope!

    My advice (and remember, this IS only my perspective) would be to seek advice and assistance from an Endo specialist. There are specialist centres that you can be referred to, which are BSGE recommended for the diagnosis and treatment of Endo. Perhaps you could seek an opinion from such a centre, as to how best to manage your Endo, and still maintain your fertility. Information on BSGE centres can be found at...

    bsge.org.uk/centre

    If you are concerned about infertility, then there are tests that can be done (such as dye tests) to see that your tubes and stuff are not damaged. Perhaps it might be a good idea to seek out advice from both an Endo specialist and a reproductive specialist? In many of the BSGE centres they have multidisciplinary teams that include Endo specialists, bowel specialists, reproductive specialists and others who work together in ways that are tailored to suit the needs of individual women. So, if your concern is that Endo may cause damage that limits your fertility, it's an idea to ask questions about this, and also to ask how your Endo can be managed whilst preserving your fertility. Some women use hormone treatment to mask the Endo symptoms until such time as they plan to start a family. Others opt to have surgery to remove all their Endo (a job which DOES require specialist treatment), and thus leave them symptom-free and in a good position to conceive.

    So - as you can see from the length of my reply - you have plenty of options left, and a lot to think about. Yes, having Endo can be a stress and hassle; but it can be something we learn to cope with. The best way of doing this is by seeking the right treatment and asking appropriate questions. Think about your options, and weigh them up in terms of what suits you, and meets your needs. After all, this is YOUR body, so anything you do to manage your Endo should suit YOU. Try to keep family and loved ones such as your boyfriend in the loop, because decisions you make may impact on them, too. If they are willing to accompany you to appointments, then it could be a good idea, because that way, you can tackle issues together. My husband attends my appointments with me - this helps him better understand my Endo symptoms, and choices over treatment. Just something to consider!

    All is NOT lost. You just have some thinking to do. That's NO bad thing, because ideally, EVERYONE should be thinking about the big decisions they make in life - including starting a family. Maybe when the time comes, YOU will actually be better-prepared than most. Now, that's a POSITIVE! And know that if you need advice or support, this forum is always open to you.

    Best wishes. E. x

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