Image sourced from sexpression.org.uk

A little talked about topic has been ever on my mind since I first found out what was going wrong with my body. To be honest the omission to this topic as a whole in the larger chronic, lupus and autoimmune illness communities bothers me more than I care to admit. I realise there is a lot of information about specific diseases, not to mention teenagers and adults are so awash with information about what pregnancy is and how to avoid it.

Yet how many ‘Lupies’ and fellow unwell citizens are out there at the moment merely vaguely confident they are using the correct contraceptive?

Did you know how high the risks are for a Lupie if they became pregnant? Or the likelihood of pregnancy occurring in Lupies? The other alternative is that there is also a lot higher rate of people with these same illnesses managing to become pregnant and carry the foetus to a full term and give birth to a living, healthy, bouncing baby.

One of the most convincing theories I have read about the way in which Systemic Lupus Erythematosus presents at the time and in the way it most often does is that it is a response to the large amount of hormonal changes that occur in the body. The rate of occurrence leaning heavily towards women as they finish puberty and enter their best childbearing years gives credence to the theory that it is this exact overload of hormones and bodily changes in the body that causes it to become confused and unintentionally begin attacking itself.

I can see the logic there, although it doesn’t explain the women who present in their thirties and onwards, all men, or the rare child cases.

Following my presentation of cerebral masses in 2013 my doctors took me off The Pill. By that I mean I was on the contraceptive oral medication taken daily in pill form that allows me to regulate my hormone releases of Oestrogen and Progesterone. There was a worldwide scare only a short time before my episodes in which a series of women were reported as having severe strokes and/or dying as a result of a specific brand of The Pill they were on. I’m sorry I cannot recall the particulars of those cases to be more helpful to you. In the larger picture though, I believe a lot of testing was performed to investigate all forms of this medication currently on the market. Now oral contraceptive pills are avoided for people with clotting, heart and/or blood concerns.

As it was, I only learned recently that sufferers of SLE should not take this medication anyway. I was glad I had been taking it for my skin and cramps, and used dual forms of contraception. But this did scare me. Good thing I was single!

It’s been two years and my skin isn’t great, but I am a big girl, and my issues are deeper than vanity allows. My concern is about survival. This unfortunately meant I needed to have that conversation with my doctor. You may or may not think it is funny but I saw her only hours before I was admitted to hospital for a completely unrelated issue (anaphylaxis).

By the time Evs called back with her prognosis about what contraceptives a girl like me (or person like us, depending on who you are reading this) is able to use and survive.

What do we want?

1. protected intercourse with a partner
2. no risk of pregnancy
3. no long-term residual effects from the contraceptive
4. no risk of the contraception interfering with other medications
5. no risk of the contraception interfering with the body functions or enhancing other areas of illness

With this list of requirements I had put my request to my doctor and the information she gave back to me is as follows (bearing in mind, the viability of each should be determined through a specific consultation with your physician).

The effectiveness of varying contraceptives on the general public:

These, as it stands, are the forms of contraception available in Australia. These are the concerns of the standard ‘well’ female individual. If you have an illness of any kind you must consider the medicines and natural internal functions of the illness and how it may be impacted by the contraception you are using.

What does this mean for me?

I fall under the ‘Arterial disease and risk factors’ column due to my history of Transient Ischemic Attacks (TIA) and Partial Focal Seizures that comes from cerebral masses and Vasculitis.

I fall under ‘Neurological conditions’ due to Migraine with Aura.

I fall under Raynaud’s disease and SLE due to my SLE, which causes Raynaud’s disease as a side-effect.

Even though the above infographics only discuss statistics for the oral contraceptive pill, my doctors are hesitant to allow any manufactured hormones in my body. I don’t appear to respond well to manufactured hormones since I can’t regulate my own as it is that well.

The next considerations are for ‘barrier methods’. To be honest we discussed some of the ones on the list, but wanted something with as lower risk as possible.

The decision that was reached and we discussed while I was in my hospital bed was this one:

Mirena Intra-Urinary Device (IUD)

Mirena IUD Implant, Infographic from highlandobgyn.com

This information has come from my doctor and is specific to my history and my illness. Before I approach any more about this concept I need to research a lot, I want to find some people to talk to that have tried it and ask the opinion of a few of my other doctors.

Oh, and I want to freak out a little. At this point I have to let you know that as much as I value our relationship, this is as close to this end of the spectrum as I am willing to go at this stage. I hope that you can appreciate my desire for some privacy in this regard. I also hope that this small amount of information has given you something to think about for yourself.

The information I sourced was from the document ‘Contraceptive pills and rings’. I recommend you download it for further reading.