Infertility
Finding information and support groups for infertility
Going through infertility investigation and treatment can be a long journey, and people often need information and emotional support along the way.
Here we discuss people’s information and support needs and how they were met.
See also ‘Relationships with family and friends’, ‘Funding fertility treatment and choosing a clinic’ and ‘Going to the GP about fertlity concerns’.
See the resources page for a list of useful resources and websites.
Finding information about infertility and fertility treatment
People wanted information for various reasons throughout their fertility journey.
These reasons included wanting more information about:
- their condition
- treatment options
- where to go for treatment
- what they were putting their bodies through
- what their chances of success were
Information needs often changed as treatment progressed; for example, research into IUI versus IVF treatment, or weighing up options when deciding whether to continue or stop treatment.
People were also keen to hear from other people and couples about what it was like to go through treatment, and how other people coped. As Fiona said, 'I actually think we didn’t know enough'.
People gathered information from a variety of sources: clinics, support groups, the Human Fertilisation Embryology Authority (HFEA), NHS resources, books, leaflets, television, radio, and the internet.
Sandra said she found out a lot of information from books. She also joined the Infertility Network UK (see 'Resources and Information') and found their quarterly magazine very helpful 'because it tells you about the latest research'.
Clara felt there was lots of information in the papers and media, but it needed to be treated with some scepticism because 'In the newspaper you might just get the sort of glamorous bits or the awful bits. The media is very black and white in that way'.
Susan had her treatment a decade before and relied on what her doctors told her.
Susan read booklets from the HFEA on egg donation, but wished she had known more.
Susan read booklets from the HFEA on egg donation, but wished she had known more.
Using the internet for information about infertility and fertility treatment
Nearly everyone we talked to used the internet to find information about infertility and treatment.
As Nigel said, 'The internet has been such an important tool. We couldn’t have done half the things we’ve done, and it’s made clinics throughout the world easily accessible'.
Steve did searches on medical databases online and said, 'our searches probably became more sophisticated and in-depth as more and more information became available'.
Lulu used an American website that 'had loads of information, and, once I was able to see that and read other people’s experiences, that did help'. Carol used the website and support forum on 'Fertility Friends', which she found very useful (see 'Resources and information').
Saskia did a lot of research online, for her own peace of mind.
Saskia did a lot of research online, for her own peace of mind.
Maggie found the Internet a hugely useful source of information, but warned that it is easy to scare yourself.
Maggie found the Internet a hugely useful source of information, but warned that it is easy to scare yourself.
I found the Internet a hugely useful source of information. I would, it was quite funny though because I would quite often be at work looking up these fertility websites and there’d be quite complicated drawings of the female reproductive system and I, someone would come into my office and I’d be like, quick, minimise it. So that was quite interesting, you know, for me that was a really useful, a useful source, and also sometimes a scary source. There’s a lot of information on the Internet that isn’t corroborated. You know, you, anybody can put something on the Internet. I think it’s really important to find out a, a respected source of information on the Internet. You can terrify yourself looking at various different websites. You can self-diagnose as well, which I think can potentially be quite a dangerous thing to do. And so I think my advice would be, “Look at, for a decent website with information that you can trust.”
Liz felt hungry for information all the time.
Liz felt hungry for information all the time.
But actually information, you do you want information all the time. You want more information. As much information as you can possible get and as you rightly said there wasn’t much, I wasn’t near a computer much, you know and access to a computer. So those newsletters actually that came from the originating fertility unit were very good, very good, very informative and then they had access to support and counselling if you wanted that. I didn’t actually take that up to be honest, because I felt I got of support from my family and friends, but you do and afterwards the same with newsletters and things, were very good. I just liked that. I liked that aspect of it.
While the internet was described as an invaluable tool (see above), several people also raised concerns about websites that gave false hope or false information, which could be dangerous.
Christine, a doctor, said, 'There is a lot of false stuff out there as well…. I tell [people] not to 'Google' things because I think it can be quite dangerous.'
Clare read widely but took the information she found online with 'a pinch of salt'.
George found it hard to find information about male infertility and treatments at the time, in particular about sperm aspiration. He also said that some of the sites he did read caused 'a lot of worry for me'.
Although Clare used the Internet a lot for information and support, the amount of information could be overwhelming.
Although Clare used the Internet a lot for information and support, the amount of information could be overwhelming.
I do use the Internet and I do search for different things to do with miscarriage and infertility. But I find it quite overwhelming, the amount of information you can often find there. And also the level of medical detail, that perhaps as someone who’s a layperson, who doesn’t, who’s not a doctor, I can’t always understand what they’re saying. And sometimes it can actually I think cause more anxiety than it actually allays. For example I’ve got a bicornuate uterus, which means that it’s slightly heart-shaped, and that can be a cause of miscarriage. But if you go and have a look on the Internet, it basically, you know, the, the scare stories about it are just manifold. And you could end up convincing yourself that if you’ve got a bicornuate uterus you’re never ever going to be able to carry a baby to term. Which isn’t the case at all. So I think that, I do look on the Internet and I do research on the Internet, but I always take it with a little bit of a pinch of salt. But if there’s anything that I find particularly interesting or particularly concerning, I’ll either go on to the forum and post on there and say, “Has anyone read this? And what do you think of it?” or I’ll print it off and take it to my consultant and say, you know, “I’ve read this. Do you think there’s any truth in it?” And I know doctors and consultants absolutely hate it when people go in with Internet printouts. Because the last time I went to see my GP with something I printed out from the Internet I could see her visibly sort of going uh. Because you just, they must get so sick of it, everyone diagnosing their own problems from things they’ve printed out on the Internet. But I just think that it’s often better to just have that second check with somebody who’s medically trained and medically qualified, rather than sending yourself into a complete spin because you’ve read something on the Internet that tells you that because you’ve got x, y and z you’re never going to be able to have children. Because sometimes it can be written from a completely different angle that you haven’t quite picked up on, because it’s a medically researched document or something and you haven’t picked up on actually that’s a research project about someone who’s got a condition that you don’t have. So I think, yes, the Internet is an enormous source of information, but I think it has to be used very carefully. Because otherwise it can just make you even more anxious than the whole thing does anyway.
Naomi found the Internet very useful in researching clinics, especially when they were considering international clinics.
Naomi found the Internet very useful in researching clinics, especially when they were considering international clinics.
Finding support during infertility and treatment
It is not unusual for people going through fertility treatment to feel isolated.
Some people had chosen to keep their treatment secret (see ‘To tell or not to tell’). Others who had told family, friends or work colleagues could still feel isolated if they thought that no one could really understand what they were going through.
Catherine said, 'I think you have to accept that people don’t really understand what you are going through, and people do sometimes say things that seem to you so crass and awful. But it’s just that they don’t understand'.
Similarily, Anne felt 'there is literally no support whatever for anybody' and Martha felt 'completely unsupported'.
However, people often did find support from a variety of sources. People most often received their strongest support from their partners and family (see ‘Relationships with family and friends’, and ‘Impact on relationships’).
Couples often went through infertility together as a 'tight knit unit', and parents and siblings were often very supportive, offering a shoulder to cry on, encouragement, and showing an ongoing interest in their treatment.
Being able to access other people’s experiences with infertility and treatment, whatever the route, was often very valuable. Fiona wished that she had known more earlier on about the emotional rigors of treatment. Mike was grateful to have been able to chat to colleagues who had been through treatment.
Sandra found it helpful to read about how other people had reacted. She said
It might be a sentence about somebody that feels... she couldn’t go to a christening and felt perhaps she was being selfish because it was a friend and she felt she should go. But she didn’t really know how she could get through the day. And you think, ‘Oh yes, actually I felt like that at one stage but I thought I needed to pull myself together’. But to read that someone else did, it just helped I think.
Brian wished he and his wife had been able to talk to more people about their treatment, He felt that 'in hindsight we really did need to be around people in the same situation'.
Belinda found support online and locally. She valued being able to talk to people who were in the same situation as her at the same time.
Support groups and forums for infertility
Some people made contact with support groups and went to meetings or talked on the phone or online. Some found them really helpful: Sally said that going to a support group 'Certainly helped put it in perspective… people were just having a much tougher time of it emotionally and financially'.
Martin described their involvement in support groups as 'therapy' for them, where 'the more you talk through it the more sense you can make of it… the more you can get your head around it… and that helps amazingly'.
Carol used several support groups, and found the one organised through her local hospital really helpful.
Carol used several support groups, and found the one organised through her local hospital really helpful.
Catherine was reluctant to join a support group at first, but when she did, it was "fantastic".
Catherine was reluctant to join a support group at first, but when she did, it was "fantastic".
But I did, at first I was really really reluctant to join any kind of support group. And I think it was partly because it was kind of, it kind of meant admitting that it was a problem. And I remember when I went to the hospital one of the doctors saying to me something about a support group. And I said, “Oh, no, I don’t want to join a support group.” And I was really really adamant about it. And I said, she said, “Why?” And I kind of explained that I thought it would be sort of admitting it was more of a problem, and that it wouldn’t help me cope, and I was coping fine by myself, and burst into tears. And she said, “Well, I don’t think you’re really coping, are you?” I said, “No, I’m not.” And I did actually in the end, I remember I had to really pluck up my courage the first time I rang the Infertility Support Network. And it was like you were ringing about some really, I don’t know, admitting you had some really awful thing. It really felt like that. And I remember my voice was really shaking and I was really really anxious. And they were just really lovely and really supportive and sympathetic. “Well, we’ll send you all our information.” And actually it was a real help. And we went to, we didn’t go to lots of support group meetings, but we went to a few and it made such a difference. It was just amazing to be in a room full of people who you had absolutely nothing in common with really apart from this one thing, but they all understood. And you knew that no one was going to say to you, “Oh, so do you have children?” and, “When are you going to get round to it?” And, you know, we could even laugh about some of the sort of ridiculously awful things that had happened to us. And it was just a, fantastic. Actually it was really fantastic. And I was so glad that we did it. And we didn’t go that often. But you knew when you needed to that that kind of network was there to tap into. And I think that was actually one of the most valuable things that we did, because, you know, at the time we didn’t know anyone else who was going through it. And it was just brilliant. And then later on as we got further down the process, a sort of friend of a friend of a friend was actually having fertility problems and started on the whole testing thing at the same time, and we became just really really close friends because of that. And it was so helpful to have her there and to be able to talk to her and always know that she understood. And, and, you know, we could go off and laugh about ridiculous things together about it and, you know, talk about how awful other people were not understanding and how unsympathetic they were. And actually it was a real help just to have someone else who was there and who kind of had the same things. But then it was quite difficult, because I got pregnant before she did. And I knew exactly how she felt about it. I knew how she was putting on that smile and going, “Oh, that’s fantastic.” And I knew that me being pregnant would be worse than anyone else being pregnant for her. And she was brilliant and we did stay friends. And then she got pregnant in the end as well.
Liz set up her own infertility support group after her ICSI treatment. She said it was really valuable, not only for the practical advice, but also for being able to share experiences with others.
Olivia and Walter were involved in setting up a support group for donor conception (the Donor Conception Network) because they felt very alone at the beginning.
Maggie started volunteering at an infertility support group.
Maggie volunteers for an infertility support group, which she has found helpful in coming to terms with her situation.
Maggie volunteers for an infertility support group, which she has found helpful in coming to terms with her situation.
I think volunteering for an infertility support group has been re-, was really really helpful for me in terms of, just about coming to terms with the whole issue. I, I think until I’d dealt with the issue and kind of got used to the idea of us not having children, I wouldn’t have been particularly useful for the support group until that point. I needed to be okay with it myself, because I think otherwise I would have been dredging up unresolved feelings in myself. When really, you know, the, the whole idea of being at the other end of a support telephone line is to be empathetic to the person that you’re speaking to, rather than saying, “Oh, my God, it was exactly the same for me.” That really isn’t appropriate. It’s, you’re kind of using your experiences and your knowledge of the feelings that you had to help that person come to the same situation that you’re into.
Of course, support groups are not for everyone.
Lulu found her visits to the local support group 'really difficult' because 'everyone would sit there not really knowing what to say'. Tim said he didn’t think it was 'healthy, a lot of people getting together like that'.
Fiona felt she 'just couldn’t' join an infertility support group: she said 'it wasn’t right for me, because it was so painful for me'. After going through adoption, she joined an adoption support group.
Anne was unable to find a local support group and felt very alone.
The internet radically changed the options for support and the availability of information that people are able to access when they are going through infertility.
Several people we spoke to were very positive about the support networks they had been able to access via online fertility sites and forums. These had opened up new communities of support for them which many found reassuring, and helped some people realise that they were not alone, and that their feelings were not unusual.
George and his wife, who had been waiting years for an IVF appointment, found that going online helped during the waiting and with the isolation they felt.
Maggie said of online forums
I did use forums, and I did find those really, really helpful. I would quite often just look and see what other people were talking about. And I think that, especially when people were letting off steam, that made me realise that I wasn’t the only person who was feeling quite negative thoughts towards tactless friends and family members.
Clare described an Internet fertility forum as "fantastic". It has helped her "feel normal".
Clare described an Internet fertility forum as "fantastic". It has helped her "feel normal".
Naomi found the Internet very useful in researching clinics, especially when they were considering international clinics.
Naomi found the Internet very useful in researching clinics, especially when they were considering international clinics.
Martin used the Internet for information and emotional support.
Martin used the Internet for information and emotional support.
However, some men we spoke to found that although they would have liked to use the internet to find support from other men for infertility, they found that most websites were used by women only, and 'the guys' community just doesn’t exist' (See also 'Men and coping with infertility' and 'Men's experiences with fertility treatment').
Options for support and information about male infertility has expanded since these interviews, and more information and resources can be found in our 'Resources and Information' section.
See also 'Counselling for fertility issues'.
Last reviewed: May 2025.
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