STOP, and read this slightly awkward article. It’s filled with information you need to know.

Depending on your current age, you may be noticing changes to your body. Hair growing in certain places, deepening voice, strange fluids coming from areas that never had fluids before… We know, we know, they’re awkward conversations to have. That’s why we’ve outlined a LOT on this page…

So, step into the awkward for a second and read on…

From around the age of 12 your body may start to go through changes. These changes, you’ll know it as puberty, will take you from being a child and start you on your path to becoming a young adult. For everyone, the age you start changing varies.

CF and young people, puberty, sex, fertility

As a young person with CF it can feel like a double-whammy at this age. Not only do you have to deal with puberty but you also have to look after your health. This can be hard work and no one else can do it for you.

Although you may sometimes feel bombarded with information, it’s important for you to know and understand the changes with puberty, and you may also have many questions about sex, sexual health and pregnancy. If you do, read on. Hey, even if you don’t, read on anyway and treat it as a refresher to everything you already know!

If you want to jump ahead, just pick your topic here:

Puberty
Body Image
Thrush
Relationships, Sex, Contraception and STIs
CF & Sexual Health
Further Reading and Information

Puberty – Your Growth and Development

In the past, the onset of puberty in young people with CF was delayed by up to two years. Now, with the dramatic improvements in treatments, most people with CF start puberty around the same time as those without CF (remembering that the timing of puberty varies in all people).

For females, this means developing breasts, growing hair in new places (underarm and pubic), growing taller (growth spurt) and getting your period.

Everyone else is like “Oh I woke up with these amazing boobs” and I’m like still waiting…

For males, this means growing hair in new places (face, chest, underarm and pubic), growing taller and getting more muscly, your voice breaking and having wet dreams.

“All of a sudden my friends were talking about, you know, pubic hair and I’m like nothing’s happening.”

Delayed puberty, a later growth spurt and onset of periods (menarche) are more likely in people who have had trouble gaining weight or who have reduced lung function. Good nutrition helps young people to reach their full potential, both in terms of growth and puberty.

Part of CF care involves assessing growth and pubertal development. Puberty and the production of sex hormones (oestrogen and testosterone) are important for bone development and growth. Some people with CF are concerned by their delayed growth and/or pubertal development. It is important to discuss concerns about puberty with your CF team as treatments may be available.

For females, the average age of a first period is 12-13, however it can really start anytime between the ages of 8 and 14. The age you get your period can be delayed with reduced lung function.

It’s also worth knowing that loss of your period (called secondary amenorrhea) can happen with significant changes in your weight. Improving your nutritional status, weight and lung function can help restore your periods.

If you have CF and identify as transgender and gender diverse (TGD), you are important and have unique health needs too.

You should always feel free to talk to your GP (local doctor) about your needs. If your doctor doesn’t make you feel comfortable, fire them, and find another doctor.

Body Image

These days, young people feel a lot of pressure to conform to a particular body shape. The pressure has always been there, it’s just much more apparent from every angle – through social media especially. Social media can make you feel like you are not ‘enough,’ not skinny enough, not curvy enough, not tall enough, not pretty enough, not muscly enough,… you get the picture.

As young people we can waste so much of our precious time trying to be someone we are not and trying to conform to the ‘norm!’ It’s worth noting that ALL young people feel this way, with and without CF. Yes, CF can certainly throw in different elements to body image, your weight might not be right, you may have scars… Make friends with your body and treat it well. You only have the one.

Thrush

75% of women will have thrush in their lifetime & men can develop thrush too

Many people experience genital candidiasis, or vaginal thrush, when they take antibiotics. Thrush is caused by a yeast (fungus), called Candida albicans that lives in the bowel. When conditions in the bowel are altered, for example, when starting or changing antibiotics, the balance between yeast and bacteria can be disrupted and lead to an overgrowth of Candida in the vagina.

Men can get fungal infections too, although less commonly than women.

Thrush is quite common in all women after puberty, and is more common in girls and women with CF, who often take antibiotics. It may be worse with particular antibiotics, after a change of antibiotics, or during a tune up (i.e. when receiving intravenous antibiotics). Thrush causes vaginal itching, redness, irritation, white vaginal discharge and burning on urination.

Thrush is easily treated and there are many different treatments available for thrush. These include topical medications (creams) and oral medications as well as some complementary medicines (i.e. probiotics). It is important to talk to your CF team if you are worried about thrush. It is best if it is treated early and it is important to make sure that the thrush treatments (including complementary medicines) don’t interact with your other medications.

Relationships, Sex, Contraception & STIs

Having CF can impact how you feel about yourself and sometimes can get in the way of friendships and intimate relationships. It can take up huge amounts of your time and your medications and physiotherapy can really eat into your day. All of this can make it harder for some people to form strong friendships and relationships with others. It’s okay to talk to others about your CF if you wish – talk to your family, your friends and other family members.

It can be hard to talk to people in general when you’re going through lots of changes, throw in CF and it can be even harder. The feedback we so commonly get from young adults with CF though, is they wish they had started talking earlier.

Your mental health is a very important part of staying well and there are lots of people you can talk to about this.

Sex

There’s so much pressure on young people to have sex. Everywhere you turn – social media, tv, magazines, websites – it looks like sex is everywhere.

Remember, not everything you see is necessarily real. Not everyone is having sex, even though it may look and feel that way. It’s totally okay to not want to have sex, to take things slowly and to say no.

Having CF doesn’t mean you can’t have a normal sex life. People with CF have normal sex hormone levels, sexual function and sex lives.

Being infertile does not affect sexual function. Men with CF experience erections and ejaculation in the same way as men without CF. The volume of ejaculate (fluid produced during orgasm) may be less, but this fluid volume varies from person to person and your partner will not be aware of it. It will not affect either person’s experience.

Sexual activity is aerobic exercise. Some people with CF may cough or feel short of breath during sex. Some people find that doing their airway clearance before sex is helpful.

“Occasionally I’d be like, hold on I need to cough or get my breath back, it’s actually pretty funny, mostly we just laugh.”

“My sex life is pretty, um normal, sometimes we just have to have a time out”

We can’t talk about sex without talking about consent. If you want to start having sex with other people, you need to start by getting consent. The best way to get consent is to ask. You should never assume that someone has given consent non verbally.

Safe Sex

If you have decided to have sex, it is so, so, so, so, so, so, so, so, so important to practice safe sex.

You might be doing the standard ‘eye roll’ right now thinking “dramatic much!” But trust us, safer sex means no unwanted pregnancies and no Sexually Transmitted Infections (STIs).

STIs & Contraception

STIs, like chlamydia and gonorrhoea, can leave you with rashes, itches, soreness, lumps and pain. To treat you need to take medication and you don’t want to be adding to your medications list.

The most common STI in young people is chlamydia. Other STIs include herpes simplex virus (HSV), genital warts (human papilloma virus, HPV), gonorrhoea, syphilis, HIV and hepatitis B. Genital warts are now becoming less common because of the HPV vaccination (Gardasil), which most people have in their first year of high school. This vaccine is recommended for people with CF. Many STIs can be treated with specific antibiotics however others may require longer term treatment (e.g. HIV).

Symptoms of STIs include genital pain, itching and burning, and pain on urination but many STIs have no symptoms at all. It is not possible to know whether your partner has an STI just by looking. If you are having any type of sex you should be tested for chlamydia every year, particularly if you have had unprotected sex or had a condom break during intercourse. The doctor who orders the chlamydia test might ask you a few questions about the sex you have had, and then might suggest other tests. This is the same for people with and without CF.

Some STIs may cause particular problems in people who are immunosuppressed (or who might be immunosuppressed in the future). It is very common to need immunosuppressive medications if you have an organ transplant (e.g. lung or liver), so prevention is important for people with CF.

If you are worried that you have may have an STI, or are concerned that you have missed any immunisations, you can talk to your GP, CF doctor or nurse, or sexual health clinic. Chlamydia can be detected by a simple test that can be performed on a urine sample.

Using contraception is necessary to prevent pregnancy and STIs for people with and without CF

Condoms or other forms of barrier protection, such as female condoms or dental dams, are important to prevent transmission of STIs during any form of sex. Condoms that fit over a penis can be bought cheaply from pharmacies and supermarkets. There are instructions on how to use them in the packet. You can also get detailed information from family planning, sexual health clinics and online from various sexual health websites.

For women having vaginal sex with a male it is best to use an additional method of contraception to prevent unwanted pregnancy. There are a number of forms of contraception available that protect women from unwanted pregnancies, but not STIs. These include the oral contraceptive pill (“the pill”) and long acting reversible contraception, such as Implanon and the Mirena intrauterine device (IUD). These are medications that need to be prescribed, and sometimes inserted.

Your GP or a sexual health clinic is a good place to start to discuss these options. It is also important to talk to your CF team as some of these medications may be more appropriate for you than others.

The risks of contracting STIs are increased in men who have sex with men, so it is imperative to use condoms.

The oral contraceptive pill may not be the best option for you.

The oral contraceptive pill (“the pill”) is commonly used by women with and without CF. It contains oestrogen and progesterone, and is a tablet that needs to be taken every day at the same time.

There are some situations in which the pill is best avoided. If you have active liver disease, poorly controlled malabsorption, or have permanent intravenous access (e.g. Port-a-cath), you should discuss contraceptive choices with your doctor.

Most antibiotics do not interact with the oral contraceptive pill, and you generally do not need to worry when you change antibiotics. Rifampicin and related antibiotics are an exception to this, and you need to use additional barrier protection during, and for one month after, taking rifampicin.

Drugs are metabolised (broken down and absorbed) differently in people with CF. If you have “breakthrough bleeding” or “spotting” when you are on the pill, the dose might not be right for you – make sure that you tell your doctor.

There are other, newer, contraceptive agents that are available, which may be more appropriate for young women with and without CF. These are called long-acting reversible contraceptives (LARC) and are progesterone-only medications. They include Implanon, which is a rod inserted under the skin of the arm, and the Mirena IUD which is inserted into the uterus. Implanon works for approximately three years, and the Mirena for approximately five years. They don’t contain oestrogen, so there is less concern regarding liver disease or thromboembolism (blood clots), and because they are not tablets, there is no problem with absorption or antibiotic interaction. You can talk to your CF team, your GP, a sexual health clinic or a gynaecologist about these options and many GPs can insert Implanon in their clinics using local anaesthetic.

An important note on pornography

Many young people have seen pornography, it is more readily available these days than it was a decade ago. While having sex at an appropriate age and when you are mentally, psychologically and physically ready, is completely normal and healthy, the images portrayed in pornography are not always correct or normal. For example, you rarely see a condom in pornography, even though the use of condoms is a very normal part of having sex. In many cases there is a massive gender imbalance in pornography and the consentual, loving, gentle, respectful, mutual nature of sex is completely missing. Please don’t be tricked into thinking pornography is a representation of ‘real life,’ as in many cases it is not.

CF & Sexual Health

Women & Men with CF need to have the same sexual health check-ups as those without

Women and men with CF need to have the same sexual health check-ups as women and men without CF. It is recommended that all sexually active people under 30 years of age have a chlamydia test every year. This can be taken on a urine test or, for women, a self-collected vaginal sample.

The doctor who orders the chlamydia test might ask you a few questions about the sex you have had and then might suggest other tests. If you are Aboriginal or have partners from overseas, testing for other STIs, such as gonorrhoea, HIV, syphilis and hepatitis B is also recommended. This is the same for women and men with and without CF.

Cervical Screening tests (used to be known as Pap Tests) are recommended every 5-years from the age of 25-years. A cervical screening test detects the Human Papilloma Virus (HPV). It’s a simple and important procedure, even though it may be embarrassing. This test can be arranged with your GP (ask for a female GP if you prefer), gynaecologist or sexual health nurse.

Women with CF need to have the same testing as women without CF. This can be arranged through your GP.

For men, testicular (testes) checks identify any lumps. Cancer of the testis is a common cancer found in males aged 20-39 years of age. Early diagnosis and treatment of irregularities is important.

Most young people have had the HPV vaccine at around 12-13 years of age at school. If you are unsure if you have had this vaccine, please chat with your doctor.