Leanne was getting her fringe cut when fertility drugs were offered to her. This was leftover stock from her hairdressers' treatment. She offered to give it to Leanne free of charge, but she would have to dispose off the packaging. Leanne agreed to the drugs as it would save her months waiting on NHS lists.Leanne started taking hormones to stimulate her ovaries a few weeks later. Leanne didn't know if her body was responding properly because there was no doctor to oversee the process. There wasn't even a scan or blood test. Instead of seeking medical guidance, Leanne followed the advice of several other women who were part of a fertility forum. These strangers advised her to take the pills at night because you will not feel the worst side effects.I bought all the things the women on the forums recommended: the teas, supplements, and the acupuncturist. She spent hours searching for help, advice, and hope in these unregulated groups. Leanne says they became my doctor, my grief counselor, and my friend. They were my secret club. But they didn't work. Leanne said that I regret every moment I wasted on the forums. Although my family and friends wanted me to be supported, I didn't seek their real-life support while I was online.It is common for couples to experience infertility. One in seven couples in the UK experiences it. 12% of women between 25 and 34 years old have experienced infertility, while 17.7% of those aged 35-44 say they have failed to get pregnant. IVF was my third attempt after two years of unsuccessful attempts to have a second child. The first resulted in a chemical pregnancy, which was an early miscarriage that occurred within the first few weeks. On the second round, we banked embryos for insurance. I then became pregnant with twins in October 2020. However, one of the twins died. My baby girl is now three months old.Infertility, despite the many people it affects is often called "the silent struggle"Infertility, despite the many people it affects is often called the silent battle. It can be difficult to discuss it with fertile friends, especially when you feel like everyone is getting pregnant through sex alone. This creates a division and you run the risk of being on the receiving end if there is a lot of unhelpful or hurtful advice. For example, relax and say that it's not meant to be. It was rare that I found comfort in sharing my experience with others, unless they had also had it.Like many other women, I searched online for answers and comfort in closed Facebook groups, niche Facebook groups, and message boards. I started by looking at photos of pregnant women; I read when and where they had sex. I was able to identify their partners' sperm counts and I found tips like how to use a mooncup for fertility. I moved from the TTC (trying-to-conceive) forums to the closed Facebook groups IVF Support UK, Low Ovarian Reserve Support Group, and IVF Babies Due Date Group as I went through each stage of my journey to get pregnant.These forums caused me to lose hours. When I started scrolling through photos of bloodstained knickers, I realized I had hit a low. I was trying to convince myself my period could be due to implantation bleeding. In the hope of receiving positive responses, these images were uploaded. You will eventually find the answer if you keep looking.I was more than a lurker. I posted, replied and uploaded photos of my pregnancy tests. It was comforting to find women willing to explain in detail how dilute your urine should have been before taking a test.Gabriella Griffith, cohost of Big Fat Negative podcast, said it was a compulsion. I've been online at 6am, 4am, and 2am. You will eventually land on a Mumsnet forum where Griffith and her husband had five negative tests but were still pregnant. You'll do whatever it takes to keep your hope alive when you're trying.These forums have a positive side: I've been able, through the stories of other women, to see the realities of fertility treatment. It is a kind of school-level fertility education. These online support groups are not only for information but also for emotional support. When I was most anxious on embryo transfer day I found transfer friends (women who had their treatment the same day as mine) to share my symptoms.I bought all the things that they recommended: teas, supplements, acupuncture. They were my friend, doctor, grief counselor, and friend.Many of the details contained in these forums are not readily accessible on mainstream medical websites. Although the HFEA (Human Fertilisation and Embryology Authority), website has begun to provide more information, it still does not include basic information like the expected timeline for fertility treatment. Although women are demanding more transparency, there is still much to be done, including determining if you are eligible for funding. According to Dr Anita Mitra (an obstetrics/gynaecological consultant, and author of The Gynae Geek), we receive very little education about how to use fertility. Many women feel ill-informed about fertility, even though they have experienced IVF and infertility.However, information shared in forums may not always be reliable. These forums are not regulated and prescription drugs can be traded. Personal experience can also be used as medical advice. I was on Facebook five minutes after my appointment with my fertility doctor. Why did I trust strangers and not an expert? Mitra states that it is easy to get lost in the maze of forums created by people without the proper qualifications. While anecdotal stories from others can be useful, everyone's medical history and individual health are different. Therefore, what may be right for one person might not work for another.Griffith states that the sheer volume of opinions on the internet can overwhelm people. We need to be cautious as it would not be possible to monitor all posts on these platforms.It is difficult to be objective while other women are given false hope by commentators. A 45-year-old member asked whether she was more likely to have her eggs from donors or her own. She also said that she couldn't afford IVF and could only afford one round. It was difficult to see many women respond that it was worth trying with your own eggs first. Live birthrates for an IVF cycle using a woman's eggs are 4.7% for women aged 40-44, and it is more likely that it will be lower for women 45 and over. It is higher than 55% for donor eggs. I submitted the relevant scientific studies and statistics, but never received a reply.My need to use the forums became more severe as my chemical pregnancy progressed. My screen time soared to over eight hours per day for weeks. Every morning, I purged on sticks to chart the rise and fall in my hCG pregnancy hormone. I would then line up the tests and photograph them, then compare the density of the pink lines to other women's tests.The forum women conspired with me against my body evidence; they reassured me that I was pregnant. After 10 days, I began to bleed. When I got to my clinic, I was certain that I wasn't pregnant.It is not unusual for people to become divisive in such a stressful environment. A hierarchy of grief cannot be established based on the length of time someone has tried to conceive or the number of failed IVF rounds they have had. Kate Meakin says that I am currently experiencing secondary fertility [infertility following the birth of a child] and feel excluded from participating in TTC conversations. Six miscarriages occurred while she tried for her second child. Sometimes, I don't feel like my pain is legitimate. However, having a son does not mean that I don't feel the pain of miscarriage.Fertility forums are a way to keep hope alive, which is exhausting.Michelle Kennedy created Peanut TTC, a free app that connects women looking for support. Kennedy says that we looked at ways to understand the differences between a woman who is trying for six months and a woman who has been trying six years. We wanted both women and men to be able express I am trying.Others are leaving closed forums. Keeley Dwight, who liveblogged nine of her IVF cycles via Instagram (@_tryingtobeamum_), This is unusual as people usually only reveal their struggles publicly after they are successful. While she has enjoyed the support and encouragement of the online TTC community, she also saw the negative side to some forum members not following pregnant women. She says that you can't claim to be a supportive and comforting group and then exile people once they have a positive test. Dwight had recently a son through a donor egg.How can women get out of the fertility forum anxiety chamber if they don't have a positive test? Natasha R had three failed IVF transfers in 2020. She discovered she had naturally fallen pregnant during her 40th year anniversary. Six weeks later, I had a miscarriage and was not prepared for the chaos. They took control of my life.Then, something changed. My husband noticed that I was having a bad day. He said that he would be happy to spend time with me, regardless of whether we could have children, and to help plan for future treatments. I felt relief from talking to my husband, and no woman on the forum could have done that.I remained on the forums throughout my pregnancy. You could go there at 2am to find out how to tell the difference between mucus plug and regular discharge (sorry TMI). I still belong to online groups like IVF miracles after birth, but I don't need them as much now that I'm not conceiving. We should make infertility conversations more public. They will continue to live underground, which can lead to potentially harmful behaviour and unchecked growth.After years of unsuccessful treatments, Leanne discovered that fertility forums perpetuate hope. They won't let you go off the fertility track, nor will they let you grieve.
