"Lack of information about possible side-effects"

So I am a woman in my late 40's who was investigated for menstrual problems. I went to my GP initially who found a mass, I had an ultrasound within 2 weeks and was reassured it was just a fibroid. I was then seen at the Women's Health clinic a couple of months later for hysteroscopy & endometrial biopsy for further reassurance that it was not cancer. I was very happy with the speed of my assessment and the attitude of all staff involved up to that point.

Management options for heavy bleeding was discussed including Mirena coil prior to the hysteroscopy. I said I did not want any hormonal treatment that may affect my mood, encourage weight gain or hair thinning (I already have thin hair and struggle to manage my weight and have had issues in the past with hormonal contraceptives also prescribed for menstrual problems when young). I was reassured by a male member of staff that Mirena only releases hormones locally and none of that would be a problem.

Once I had the hysteroscopy, they reassured me everything looked fine and it would be possible to place a coil with the position of the fibroid and asked if they should just do it whilst there. This gave me very little time to talk it through, but given the earlier reassurances, I said yes, not relishing the prospect of having to return for what is essentially quite a humiliating procedure. I have since discovered, through experience of side effects and through my own subsequent research that it isn't true that the progestins only have a local effect in the womb. I noticed an increase in breast pain quite soon after having the coil fitted, clear evidence of the progestins going through my whole body.

The coil has successfully reduced my heavy bleeding over time, but as my bleeding has lessoned, I have begun having problems with low mood, anxiety and now have no libido at all (all known effects of progestins). I have also put on weight and my hair is thinner. I feel the mood issues and lack of libido are worse than managing heavy, irregular periods and have substantially affected my quality of life more. Had I known these were potential side effects, I may well have made the same choice to try the coil in the hope I didn't get them, but with hindsight, I feel I should have been given more information about it beforehand to make an informed choice and likely I would have chosen to see if my periods settled since I was reassured it was not cancer.

Also, what has been most disappointing is that now I have to wait more than 3 months to have it removed. My own GP practice does not do removals and told me I had to go through the sexual health clinic, who now have me on a waiting list that is around 13 weeks long. That is 3 more months of progestins in my body and I suspect a longer recovery time for my body to return to normal.

The whole experience has made me realise how women's health and women's stories are not really heard and that services are often not designed with women in mind. Why on earth are nurses and GPs not trained in coil removal at the same time as training to do a smear? If that were the case, I could have an appointment locally within 2 weeks max. It is not even a skilled process and had I been able to find the string, I would have yanked it out myself.

What triggered me to share this story was also a conversation I had with a male obstetrician friend where we were discussing some research on migraines. He told me some of his patients thought they had migraines around the time of ovulation but insisted that no woman can tell when she ovulates. I told him some women absolutely can tell and I was one of them, in fact, I can tell I am no longer ovulating now which is why I think my mood is worsening with the halting of this physiological process after having the coil fitted (again, it is known a minority of women with mirena stop ovulating).

I have wondered if I had seen a female member of staff who had actually experienced hormonal contraceptives, whether I would have had more information beforehand? Also I find having to go to the sexual health clinic to get it removed a daunting prospect. Yes, the coil is used as a contraceptive, but it is also a treatment for heavy bleeding and I do not have a sexual health issue (of course unless you count lack of libido). As a middle aged lesbian, I have never been near a sexual health clinic in my life, the current one is 11 miles away from my home and I don't drive. Enough to trigger a panic attack in someone who is experiencing progestin triggered mood issues.