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Long term health conditions (young people)

Contraception, pregnancy and sexual health with a long-term condition

At some point in their teens most of the young women we talked to said that their doctors had raised the subject of contraception, pregnancy and sexual health. If they were not yet sexually active, or if their mum was in the room, this could be rather embarrassing. It doesn't seem to be easy for doctors to get the timing right for these chats - one young person thought that she had been a bit young at 14 years old, a 17 year old said no one had yet raised it with her and a 23 year old thought she was still too young to think about such things. Routinely seeing young people without their parents for part of the consultation time can avoid uncomfortable conversations in front of parents. Many doctors are being told that discussing sexual health and family planning issues, in relation to long-term health conditions or disabilities, is an important part of preparing young people for the future.

 

When she was 14 her doctor explained that women with CF could have children. Feels she was a...

When she was 14 her doctor explained that women with CF could have children. Feels she was a...

Age at interview: 19
Sex: Female
Age at diagnosis: 8
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Yeah. When I was  in my paediatric centre in one of my Clinic appointments my doctor just said to me, you know like we can just talk about when your. He said I'd just like to have a little chat with you just because like about when you, when you're older. Just about like having children. And he was, he was really nice about. He said that you might read things or you might like see articles about people with CF getting pregnant and having babies. And he said that I'd just like to like reassure you  that there have been like many happy ending stories of CF people having children. And he just explained that it depends on whether the lung function and the health status of that patient at the time when they're thinking of having children and it totally depends on the situation and the circumstances of each individual person. So you can't just generally say that CF people will all have happy, healthy, well pregnancies. And you can't say that well CF people shouldn't have children. So he said. He explained that you can't make generalisations about that and you can't say, 'Well I don't think someone with CF should have a child'. But he explained that obviously pregnancy does put a lot of strain on your body and already having CF puts strain on your body so pregnancy could be quite difficult maintaining all your treatments and things like physio. And he just briefly explained about that. And just mentioned that it obviously depends on how, how well you are at the time. And what the consequences of it could be 'cause if you are well then hopefully you'd like to think that you'd get through the pregnancy fine and that everything would go well. But if you are feeling. If you are like not quite so well or you've got an infection or your lung function's reduced for some reason it might not be a good time at that time or in the future to have children. So he just explained all that to me and I've never really spoke to a doctor about it since. But that was when I was probably about 14. So.

And how did you, how did you take that?

At first I was quite shocked that he was talking to me about it. I was, I'm only 14. I'm not going to have any babies yet. But then I think it, I really appreciate him telling me about that because from a young age I was aware of it and if I read an article or saw something saying like CF people shouldn't have children. I'd have been like, 'What'. But because I'd, I was aware of both sides of the story then I think that was really good talking to me about it from a younger age and making me aware of the different, you know, the distant situations and circumstances.  

The young people interviewed usually knew why they needed to be particularly careful about the timing of any pregnancy - and felt it was better to be told this too early than too late. By age 14 most young people will have received at least some sex education in school. It is also to inform young people before they become sexually active, so that when the first time comes they are empowered to make more appropriate choices.

Sexual transmitted infections (STI’s) are a potential problem for all young people. Using a condom reduces the risk of catching an STI and should be used in addition to other forms of contraception. 

Young women often know that antibiotics can affect the oral contraceptive pill (the pill) and had been warned to use additional contraception - such as condoms - while they were using antibiotics. Condoms would also protect them against STIs. One said that the discussion about contraception and medication was one of the main differences between the child and adult services. Another said that since she was about 17 years old she was asked at every consultation whether she was planning to start a family.

Some medications can have a harmful effect on an unborn baby. Young women with epilepsy talked about the effects of medication on their fertility, pregnancy and in particular, about the risk of there being problems for the baby. There are some forms of progestogen only contraception that are affected by anti-epileptic medications, such as implant or the depo provera injection. Girls were often told by their consultants about potential risks, the importance of using contraception appropriately and the need to talk to their doctors if they decided to start a family so that they could plan changes to their treatment.

 

She knows that if she does want to get pregnant she will probably have to change her treatment to...

She knows that if she does want to get pregnant she will probably have to change her treatment to...

Age at interview: 29
Sex: Female
Age at diagnosis: 15
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Yes, yes, because the tablets for epilepsy carry higher risks to the unborn baby. So there are issues for young women. You know, if they do have children and they're on certain medications, there are higher risks. So the doctors might want to change the medication or lower the medication. And it is something all the doctors are talking to all young women about. So, yes, I mean ever since I was maybe 17, every appointment it's something that they bring up and say, you know, 'Are you planning to start a family?' Or if I'm starting a new medication, you know, they discuss the risks associated with it or say, you know, 'If you do want to start a family, we might have to think about different treatment' and that kind of thing. So, yes, that's always something that's very very relevant.

Some people had been told that they needed to take particular care before becoming pregnant. Girls with cystic fibrosis (CF) were advised that their partner should have a genetic test to check that they didn't also carry the gene for CF. Genetic counselling is widely recommended for young people with many inherited conditions, when they were thinking of starting a family. If both mother and baby had CF there would be a danger that they might 'cross-infect' one another. 

 

When she was about 18 she was warned that she needed to be careful with contraception. She was...

When she was about 18 she was warned that she needed to be careful with contraception. She was...

Age at interview: 21
Sex: Female
Age at diagnosis: 4
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What have the doctors say regarding if you want to start a family? 

Not really a lot, like when I was sort of 18 they did tell us that you know, that people with Cystic Fibrosis tend to have a lower fertility in men, its usually non existent, but for women they just said that, you know, there is every chance that you'll fall pregnant and you need to still take proper precautions, if necessary, and they said that you know there does tend to be a lower fertility rate in people with Cystic Fibrosis, but he says there's no reason why, if and when you choose, that you can have a child or things like that, but he says as well that, you know, the partner that you choose is, is able to have tests as well to see if they have the CF gene which obviously increases the chance of your child having Cystic Fibrosis. So they do sort of tell you, you know, that you may not be able to, or you may have a lower fertility, but obviously still to take the proper precautions cause if and when you do want to have a baby you've got to be of a certain health and have a, you know, have a certain level of lung function and be of a good overall health before you even think about starting to have a kid, because pregnancy can obviously take a lot out of somebody with Cystic Fibrosis. So, because obviously you can't be as active and you know there is a pressure on your heart and your lungs and just everything, so, they are quite good like that, they says that obviously as well fertility dies as you get older, your fertility lowers so you need to think about maybe when, and where and you know, so. 
 

Young women with CF were told that they would need to make sure that they were as healthy as possible before becoming pregnant, because pregnancy puts a strain on any woman's health. Parents too could be worried: a mother who dearly wanted to be a grandmother was very concerned about how her daughter's health would be affected by the pregnancy.

A married 23 year old with CF said that having a baby would be 'the icing on the cake' for her and her husband, but felt that some people thought it was irresponsible of her to consider having a baby when she might not live beyond her early 30s. 

 

She and her husband would love to have a child and their families are supportive. Feels that if...

She and her husband would love to have a child and their families are supportive. Feels that if...

Age at interview: 23
Sex: Female
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And in terms of our marriage now we've discussed the option of children and there are. We have come up, I mean myself and [name], my husband don't have any problem with us having a child  that we know of. He was recently tested to see if he's a CF carrier of the gene and that came back negative. So there is, there is still a slight risk but it's a significantly reduced risk that our child will have CF which is a relief. Because of the things like cross-infection which could be, you know, put my health at risk and the baby's health at risk. But certainly it, it's something that we would consider. Not necessarily having a family but having a child would be the best thing ever. And having a little Lindsay running around, you know, would be great. But that we have come up against opposition from other people's attitudes who we thought would give us support. Friends that we thought would understand that have maybe turned around and said, 'You don't deserve to have children. I think it's disgusting you want a child. It's so selfish. You have a limited life expectancy'. And I just say to them, 'It's none of your business'. 

And at the end of the day we have sat down and we have discussed this over and over again. We know that my life expectancy. I could. The life expectancy is currently 31. You know I could suddenly deteriorate next week. I could live until I'm 60. If I live until I'm 60 I just feel what an empty life I would have had. What a missed opportunity it would be on the off chance that, you know, I could not, not live very long. 

I just feel that having a child would give me an incentive to stay alive not that my husband's, my poor, long-suffering husband isn't an incentive to stay alive, my family and friends and everyone else. But even more so because I will be a parent and I will be responsible. And you know, I would like to think that I would be able to see them grow up. I've achieved everything else in my life that I wanted to. I've felt that I have been normal to an extent. I've been. It's been great that I've been able to do so many things and feel so equal to all of my friends. That having a child would be the icing on the cake. If I, if I can't do it it's not going to be the end of the world. But it would be, it would be [laugh] really the only other thing really that I'd want to do. And I just hopefully will, we'll have that chance and we'll see. But for all the people that are very negative about it I just hope that if we do have a child that they will see that I will be a very good, I know I will be a very good parent. I will be a very loving parent and I just hope to prove them wrong and live until I'm sixty, sixty, seventy collect my pension with any luck you know and prove everybody wrong really [laugh].

A woman with chronic pain said that she and her husband had been on a roller coaster ride over whether she might be able to have a baby. They thought they wouldn't be able to have a pregnancy without medical help. They felt that they couldn't bear the financial and emotional costs of infertility treatment.

 

Was devastated when she was told that she would not be able to have children 'naturally' and...

Was devastated when she was told that she would not be able to have children 'naturally' and...

Age at interview: 28
Sex: Female
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But then I had the absolute shock of my life. I, my pain changed, the pain that I was getting was different,  I was emotional, there was something going on and I was in, my pain in my pelvis was just really, really different, but really painful and I don't know why, whatever possessed me to do it, but I did a pregnancy test and I was pregnant which, you know, there's no, nothing that can ever, you know, no words that can ever, ever put a point on how, how I react, how I felt, everything that went with it and how my family and my partner, everybody that knew me, how they felt and reacted and everything. Which was fantastic, I was so pleased to be pregnant and then especially as a lot of the time over the time that I'd been ill, I'd been told, if you have a baby, if you do fall pregnant, you're going to get better, because the endometriosis gets better with pregnancy, and so on. And that was by the people that were speculating that there was anything else other than the endometriosis going on. So it was great. I was pregnant, so the fact that I couldn't have children, I was having a baby. The fact that I'd been told by so many people that I was going to get better when I had a baby all of a sudden all my prayers were, you know, the things that were important had come true and it was just amazing. I didn't really believe I was pregnant for a long time, I don't, we never went out and bought anything until I was 33 weeks [laughs] but I was ill from the offset. 

 

Took no painkillers for the first 12 weeks of her pregnancy. Worried that her medication might...

Took no painkillers for the first 12 weeks of her pregnancy. Worried that her medication might...

Age at interview: 28
Sex: Female
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The first twelve weeks I had sickness and all the things that go with it, which was fantastic, but pelvic pain, lower back pain, I'd had to come off of all my medication. So there I was back to, you know, agony basically. In the sense that I'm in pain every day, but it was different control of pain, taking medication to help pain, but didn't actually take the pain away but made you able to live. So I was in pain, so I was bedridden. From twelve weeks I was able to start taking Co-codomol and Amitriptyline again, which was absolutely scary as anything because all I was worried about was this baby I was having. And  then I was in and out of hospital from seventeen and a half weeks right through to the birth for weeks at a time and the rest of the time I was bedridden at my parents' house on the basis that I was bedridden at my parents house otherwise I was in hospital, that was the compromise. And then I gave birth to my daughter, happened naturally, great, epidural though, I was a poofed I had my daughter, which was fantastic.

A young woman with diabetes was told that there was no reason why she shouldn't have a baby although she would need extra care. She was advised to raise the question with her doctors again and told that new research on diabetes and pregnancy is coming out all the time.

For more about sex, contraception and STIs see our section on sexual health in young people.

Last reviewed July 2017.

Last updated February 2012.

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