Experiences of LNG-IUS

LNG-IUS was considered to be successful by the majority of women who were treated with it in this study.

ÒI had it [month and year]. It started working really well probably from [third month following fitting] and it was a very good year. No periods. I put all my big tampons away.Ó 29B

ÒThe best part of six months in from having the coil; things certainly seem to be what it says on the tin basically.

Which is?

Reduced blood flow. That is what I have noticed. Month after month the periods were getting lighter and lighter to the point where I hardly noticed I was even having a period.Ó 39B

Successful treatment had a positive impact on many aspects of life.

ÒWell itÕs a joy really because initially I was quite anxious because I kept thinking that at some point they could come back or they could start or I could spot or whatever so I was and that did actually happen initially I was having spotting or a mild period pain and things like that but they just got less and less and now over the last Descriptive themes:

Most women had irregular bleeding in the first three months

Generally LNG-IUS tolerated well and considered to be successful

Progestergenic side effects problematic in a small number of cases

four months there has been absolutely nothing at all so I am

actually, whether I should say that or not I feel 100% confident that it wonÕt happen which is a joy in itself really.Ó 37A

Generally the LNG-IUS was found to be problematic within the first three months of treatment with irregular bleeding being the most common side effect.

ÒIt started off really, really excellent then we tended to have a bit of a dip where it was a bit hit and miss some months but now it seems to have settled back down again so I donÕt know whether that was just a fluke or perhaps whether I was a bit more stressed at work at the time and you know busy in my life that made an impact on that but now on the whole is the best decision I could have made.Ó 26B

Most women in this sample considered removal of the LNG-IUS after one or two weeks but did not seek to do this partly because they were advised that their experience of treatment would improve over time and partly because they thought that the removal process would be difficult or they might not have an alternative treatment.

ÒThe other day it [intermittent bleeding following treatment with LNG-IUS] drove me so mad somebody actually offered me pliers and I nearly took them [pause] you know.Ó 27B

ÒI first went back for the check up it felt like everything was alright and I did say to him is this dribbing and drabbing going to settle down and he said oh yes of course you know. Which maybe it does for some ladies I donÕt know but no it hasnÕt and it doesnÕt but you know then I think what are they going to do if they take that out.Ó 27B

Women did not ask for the LNG-IUS to be removed because they did not want to go through the process of revisiting the health professional and being subject to another vaginal examination with such a short time.

ÒTell you the truth I did actually think about going back to the doctor because I thought from a point I thought perhaps there was something wrong perhaps the coil perhaps wasnÕt working properly or perhaps something had happened and it was sort of making it go a bit weird but then I never sort of got round to making an appointment and then the next month would come and it would be a bit better and then by the third or fourth month it seemed to have settled down anyway.Ó 26B

Those who were seen in the secondary care setting saw this as a further barrier as returning to the hospital to see the gynaecologist was seen as more costly for them personally and for the health service too. The fact that the women expected a period of transition following the initial fitting of the LNG-IUS was a positive finding and reflects the detailed information given by most health professional about the initial side effects at the time the LNG-IUS was fitted. However the interviewees were surprised at the amount of disruption to their cycle or amount of irregular bleeding as it was more significant and disruptive than either their peers or health professionals had indicated. The women also had high expectations of this treatment in particular, and associated with the belief that their menstrual bleeding would cease completely was the belief that this would happen within a relatively short time scale, that is one or two months.

ÒIt took a while, it didnÕt do much at the beginning, it took a while for it to do anything. I didnÕt think it was going to do anything at first but yeah, it took a while and I noticed it slowing down. That was the big thing for me. It didnÕt matter if it didnÕt stop or

anything, just slowing it down. It has done it in the same year, it has done it bit by bit, it slowed down and slowed down and now for the last two or three months I have not had anything, not a thing.Ó 15B

When this belief was explored further it was linked to the finding that women who had a positive experience of treatment were more inclined to talk about it, whereas women who had had a negative experience of treatment stayed silent. The women in this sample persisted with the side effects of the LNG-IUS for longer than the women treated with oral medication, not seeking consultation about removal for three to four months compared to the women on standard treatment who stopped taking their medication after two to three months. In this sample only one woman had her LNG-IUS removed at four months citing pregnancy symptoms and irregular bleeding as her rationale. She had experienced heavy menstrual bleeding for more than ten years and decided to opt for no treatment, preferring to rely on coping behaviours rather than the side effects of the LNG-IUS.

ÒIt was very similar to being pregnant and I did have lots of, I didnÕt actually feel sick with the coil but there were lots of feelings of just general lack of energy which I remember from early being pregnant É I would rather have stuck with the heavy periods for a week once a month than feeling like absolute rubbish every [pause] every day.

The consultant did say it would probably wear off but I stuck with it for I think I donÕt know whether it was two or three months and just felt that this is not, I canÕt live like this, I am too tired.Ó 11B

One other woman had experienced seven weeks of irregular bleeding at the time of the first interview, which she described as moderate every day and she was undecided as to whether to continue with this treatment.

Unfortunately she was lost to follow up and her decision is not known.

There was also one woman who was randomised to the LNG-IUS and who requested a change of treatment before her coil fitting could take place.

This decision was made on the basis of information provided by a family member who was a pharmacist and was based on the fear of an indwelling device and that irregular bleeding would make her coping behaviours and mechanisms fail.

The majority of women persevered with the LNG-IUS and at twelve months most women were satisfied with this treatment and had experienced a significant improvement in their condition.

ÒIt is such a relief, it really is after the pain that I used to have before and the tiredness and the flooding and the whole, it was almost like your whole life revolved around periods and being comfortable or uncomfortable and you know it was, it was awful and I was feeling constantly tired and thinking this is just you know that just awful and now that has all gone and it is just such a relief it really is.Ó 16B

Most women with a LNG-IUS were happy to continue with this treatment long term. Several women had considered hysterectomy prior to commencing their treatment with LNG-IUS now no longer considered surgery as a viable option.

ÒWhat I have now is not worth going through an operation forÉ If it hadnÕt worked and I was still having heavy periods then I would think about it but no, not with the coil, no itÕs not worth having that done, taking up space in the hospital just to have that.Ó 5B