My 16 year old daughter was diagnosed with extensive endo after a laparoscopy in October. She has been very resistant to the idea of any further treatment. The consultant (who is reputedly one of the best for endo in the UK) has proposed removing the endo/adhesions during a further operation, and inserting a mirena coil. My (now 17 yr old) daughter has now agreed to the op but is resolute that she does not want the mirena.
The consultant implied that for someone so young to have such extensive endo means that she could be putting her future fertility at risk, although in October her fallopian tubes/ovaries were not yet affected. My daughter is reluctant to discuss or become involved in any research regarding her disease. She is trying to deal with it by not dealing with it. I understand she has had a lot to cope with (including a severe bout of glandular fever just after her diagnostic op in October, which is why we have waited until now to proceed with the further treatment op), and her main response is that she is 'too young to have to think about this now' and that the mirena is an invasive and unwanted treatment which will probably make things worse. The consultant admitted that there are 'very few' girls her age who have had the mirena, and this has hardened her resolve that he 'only knows about older women'.
I believe that the decision is for her to make, but has anyone out there any positive experience of the mirena at such a young age? Any other advice/suggestions for me to help my daughter through this?
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nicobob
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I'm probably not the best person to talk to about this as I've had 2 mirena coils, both of which my body rejected and my womb stayed in a constant state of cramping until they were removed. The mirena is not normally suggested for any woman who has not has children yet. This is because the cervix is too tight and most have to have it removed again. I have had two children and still had the same reaction. My advice to her would be try it and if it doesn't work then try something else. The mirena is very effective if it works for you and if it did work for her then she probably wouldn't have to think about her issues for about 5 years.
It is a tough decision but I would say give it a go, you can always have it taken out if it doesn't sit right xxxxx
Hi, I had a Mirena fitted at 19 so slightly older than your daughter but I would have had it fitted at the age of 13 if I could! The consultant said as the post above said, they usually will not fit in females that haven't had children. I haven't had any but I had no problems with mine. The thing with it is you have to bear with it as it has to settle, this can take 6 months. And also like the above post, everyone is different. I tried the pill, injections and tablets, the Mirena has worked the best for me.
I really hope your daughter is ok in whatever she decides to do x
Thank you missteal and trinket, for your answers, I really appreciate you taking the time to reply. It is a real dilemma as currently her condition has improved by taking yasmin - although by improved, I mean she is not collapsing out cold and spending a week in bed every month. Her periods are still exceptionally heavy and painful, and taking a toll on her energy and fitness, but as far as she is concerned she is much better. If either I or her consultant encourage her to have something that ends up making her feel worse, I am worried that we will both lose her trust and ultimately she will refuse to have any further treatment until such time that she becomes so unwell that she has no choice, by which time her fertility may be severely compromised. Being only 17 and a long way off starting a family, she cannot understand the heartbreak involved with not being able to conceive at will. Or maybe I am being too pessimistic about her future fertility, and should not worry about it until the time comes?
She has 4 weeks before her op when she will have to make a choice, and at the moment I am going to suggest to her that if the endo has spread/got worse since her last op, then perhaps she should allow the consultant to put the mirena in. However, the thought that it will cause her to become more unwell induces a mild panic attack. The glandular fever has caused her to drop out of college and take a year off to get her health issues sorted out, and she will feel she is falling further behind if these get worse rather than better. Trinket, when you say it takes time to settle, what sort of experience did you have during this time? It is really difficult to find anyone who has had any kind of positive experience with the mirena, so I would be really grateful if you could let me have a bit more detail.
I am aware that she is lucky to have been diagnosed so young (the result of her appendix being removed after she collapsed yet again with severe abdominal pain - blood was found in her abdomen which resulted in a gynea referral) when so many ladies have had to wait years, but I find it hard trying to balance parental responsibility with allowing her to feel in control of the decisions being made about her health.
Reading some of these ladies' stories makes me so sorry for everything that they have had to endure, and I hope that as my daughter's experiences develop that I can contribute something in the future to help. Thank you so much for sharing.xxx
I had my coil fitted whilst I was under having a diagnostic lap for endometriosis. After I came round I had pain at the site of where they put the camera in and period type pains which I was told was from the Mirena. From what I remember the pain from the Mirena was a welcome change from my usual pains as they were less severe.
The Mirena actually has less hormone than the pill, as it is in the place where is is needed it can afford to have a lower amount rather than the pill going through the blood stream. It takes about 6months for all your hormone levels to level out and settle down. I see a lot of women on here say they couldn't take it anymore and have it taken out but I would encourage anyone to leave it in. As I said I know it's not the same for everyone though. I am having mine replaced Monday and apparently as my body is used to the hormone level this time I shouldn't have much pain, fingers crossed. If there is anything else I can answer please let me know. I would be very happy to.
Thank you, trinket, it is helpful to have a view from someone who has found the mirena helpful. Good luck with your replacement tomorrow and I too will keep my fingers crossed for you that it settles without causing you pain this time round. xxx
I share your pain as I have said in my last reply my daughter had her appendix out at 13 and they found endo then. I know it not nice but good to see people are writing and helping on here. My daughter wasn't at school much for 2 years as was in so much pain but people so un kind. She even missed some of her exams. But now got an apprentaship in a nursary which has helped . I do hope if she has it in it works .x
I think the thing about not fitting the Mirena where a woman hasn't had children must be a consultant choice rather than an actual fact - I haven't had children but my first Mirena went in 4 years ago and I'm about to have it replaced as it's 'worn out'.
Thinking back to when I was 16 though, I can completely see where your daughter is coming from - at that age, she shouldn't have to be thinking about future fertility issues, and the thought of a 'foreign object' inside her would be scary. And the benefit of hindsight is a wonderful thing - thinking back now, if the Mirena had been invented when I was 16, I would have told my younger self to have it in a flash - but my younger self would still have resisted.
Could you maybe put it to her that it needn't be a permanent thing? Maybe she could try it and see how she gets on with it, and if she really isn't happy, they can easily whip it out again.
All of that being said - the Mirena won't halt the progress of the endo, it will just help with the symptoms, and it doesn't work for everybody. I suppose it comes up to weighing up the possibility of giving her a better quality of life now against the possibility of her hormones reacting unfavourably - she is only 16, she might not have settled right down yet, although raging endo would suggest otherwise
Poor thing. All this rubbish is hard enough to deal with later on in life, it's not fair when she's just starting out I hope you both manage to get something sorted x
Thank you for replying, Chrissie66. You are right, I am sure it is fear of the 'foreign object', its effects and the removal procedure (if required) that makes my daughter resistant to the idea of having it. Also it is a bum deal that she has to think about her fertility at her age.
I was also under a misapprehension - I thought the mirena did halt the progress of the endo, so I am really disappointed for her that this is not the case. I am going to have to try and keep her informed from a neutral position and let her weigh up the pros and cons for herself, I guess. Not easy when I don't know all that much, although this site has been enormously helpful.
Thank you Impatient, your reply has put things in a way which I think my daughter will really be able to relate to. As you say, this condition has already caused her to miss school, work, social events etc as well as changing her from a very outdoorsy person fizzing with energy into someone who has to spend a lot of time dealing with pain or recovering from it, as well as tailoring her activities as to whether she is 'on' or not.
Your advice will really help her to weigh up the pros and cons, and I am very grateful that you took the time to reply. Many thanks xx
Hi helloworld, I am sorry you are in this situation, it is such a hard decision to make. My daughter did not have the Mirena. She had the laparoscopy to remove the endo and decided to stick with the pill which she is supposed to take consecutively without a break. For a while, all was good. However, she was away during the summer working in France, and during that time she decided to have a break from the pill as it was making her skin so bad - poor girl, for most people it makes it better, although her skin was good before she started the pill! Within 2 months it was the same old story - very heavy periods, and last month she was collapsing with the pain again. She is a tough cookie but was in such pain she wanted to call an ambulance. The symptoms and pain were exactly like she used to get before her lap, so I feared that the endo had returned. However, our GP thought it was too soon for that to have happened, and tests showed she had a urine infection (although none of the usual symptoms that you would expect with a UTI). So, she has changed her pill, and promised to take it without a break, and we will see how she gets on. The Mirena was suggested to her again, and she has agreed to think about it. However, I am aware that in the US and Canada there is a class action being taken by women (mostly in their twenties/thirties), who are claiming it caused them to have early menopause. This could be just be a tiny percentage of the women who are using the Mirena, and to my knowledge it has not been proven the Mirena was to blame. It is something you may wish to research and ask your consultant about. (I have not told my daughter about this yet). It is difficult - I have friends who swear it has transformed their lives and is the best thing since sliced bread, but they are in their forties/fifties, and have not been diagnosed with endo but had heavy periods. If it works for you and my daughter, it could make a huge difference to your lives, but it is hard to weigh up the pros and cons. Also bear in mind that people tend to post about negative situations rather than positive, so internet research can be unbalanced. I'm so sorry not to be able to give you a more definitive answer, and I really feel for you.
I think you need to consider how much of an impact the endo is having on your life (it has really disrupted my daughter's education, for instance), and whether it is worth giving it a go after weighing up all the options and what you have already tried. If you do decide to have one, would you be having it put in during a laparoscopy? That would be the best option IMHO. My daughter has just left for France again, to work a ski season, and if the endo disrupts it I suspect she will opt to give the Mirena a go, especially if we discover that the endo has returned. It's a bit 'wait and see' I'm afraid.
As an aside, we have recently discovered that diclofenac seems to work really fast with dealing with the very severe and sudden pain that endo brings, much better than the Ponstan that my daughter was previously given.
I don't feel I have been able to help much, and I'm sorry, but if you want to ask me anything else please don't hesitate. All very best wishes to you and don't be afraid to keep asking for information about this difficult decision. Big hugs to you xxx
Hiya, I'm almost 17 myself and have been diagnosed with endo and polycystic ovaries last year. I got given the same advice. I looked endo and PCOS up on the internet and got info from my doctors, I get my Mirena tomorrow (hopefully goes well). GP's don't tend to give the Mirena to women under 20 because you are not fully grown, there is a chance it might not be able to fit. But that's a risk I'm willing to take to help my endometriosis! I would honestly say that it is something that you have to accept but it may take time. She'll accept it in her own time when she's ready
My 16 year old daughter has had the same problem since she was 13. She has had 3 operations to remove lots of adhesion. They put coil in in october 15 she has bleed nearly for 6 months on and off now having to take the pill as well. I'm not going to lie but she was in a lot of back pain for 2 months. It is surpose to help as we where told. But she is still in a lot of pain we thought may be because she so young it not worrking we back up hospital in 2 2 months and think she wants it out but needs op to take out. She was willing to try anything as in so much pain. No pain killers help . People don't realise at such a young age what our girls go through. Good luck I hope if she has it done it helps her .
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I hope you both manage to get something sorted x
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