Testing sperm is really quite easy - especially with the growing number of tests that can be taken at home.⁠

But what can results tell us? What should we do with them? Do we always find out WHY sperm quality is low? And what can we do about it?⁠

Watch THIS LIVE with Dr Shaun from Mojo where he talks about sperm testing!

Testing sperm is really quite easy - especially with the growing number of tests that can be taken at home.⁠ But what can results tell us? What should we do with them? Do we always find out WHY sperm quality is low? And what can we do about it?⁠

Instagram Live - Sperm testing with Shaun Rogers

Grief is a weird thing, as sometimes you can feel fine - and then suddenly it hits you again. Although we understand that grief comes in many forms during an infertility journey, today we are focusing on miscarriage and grief. We have gathered some learnings from the clinic perspective on how to approach bereaved parents, and how the clinic can help in supporting patients through grief. 

Did you know that up to 1 in 4 pregnancies ends in a miscarriage? This means that there are up to 1,000,000 miscarriages in the United States  per year. In the United Kingdom, the number is approximately 200,000, and in Australia, 147,000. Despite how common miscarriages are, and how traumatic the experience can be, the emotional impact and grief of miscarriages and other types of baby loss are often overlooked. So if you have experienced pregnancy loss and are not feeling okay, you are definitely not alone. In fact, baby loss has been shown to have a large psychological impact, and is associated with post-traumatic stress, depression, anxiety, and sleeping disorders.

So how do you deal with miscarriage and grief? There is no easy answer to that - and it’s important to recognize that grief is always a personal process. However, research does point out that the support given by the health care provider following the miscarriage has an important role to play and that the interactions with health care professionals have a large influence on the intensity of the parents’ emotional trauma. In fact, patients who are satisfied with the support from their care provider following a loss are less likely to suffer from depression, anxiety and long-term grief.

Here are a few things that impacted how satisfied bereaved patients were with the support of the care provider:

Insufficient information; regarding the medical and physical implications, next steps, what to expect mentally/emotionally, and the grieving process. 

A lack of acknowledgment of their loss, and not feeling listened to.

A worsening factor in how women and their partners (in general) are affected by miscarriages is having had this unfortunate experience before - as is the case with recurrent miscarriages. 

We have thus invited someone who has a lot of experience from working with bereaved parents having undergone several pregnancy losses: Lorna McErlane, Deputy Clinic Manager at the Center for Reproductive Immunology and Pregnancy Miscarriage Clinic, CRP Clinic, a UK clinic with two clinic sites that specializes in treating recurrent miscarriages.

Lorna, you are meeting with patients that have experienced recurrent miscarriages on a daily basis. What is usually the emotional state of the patients when you meet them for the first time?

Going through one miscarriage is emotional, going through several is very tough. Normally our patients have been through a lot when they come to our clinic, and can sometimes be in a very heightened emotional state. We try our best as a team to ensure our patients feel listened to and cared for, to try and make a difficult time a little easier. 

Research suggests that one way to support women and their partners is for them to feel that the care provider is giving enough information, both orally and in written form (as oral information alone can be hard to process in a heightened state). How do you address this, and are you doing anything differently than a regular provider? 

We make sure to set aside enough time to sit down with the patient(s) and go through the information with them. It can be about the causes of a miscarriage, what are the next steps and why are we suggesting them, etc. Our nursing team is available to speak to via phone or email if patients have any queries outside of clinic times. We also have an app where patients can access their personal data and information about the procedure afterwards.

There is data showing that patients value not only information around their treatment and physical health, but also on what to expect mentally. How do you enlighten the patient around this aspect? 

At the CRP clinic, our patient-facing staff have an understanding of common mental health issues and also have knowledge of grief and its potential implications. We also have digital support tools that our patients have access to and a counsellor associated with the clinic to whom we can refer our patients. 

Lack of acknowledgment from the provider can negatively affect how the patient deals with the grief according to research. Anything from word choice when speaking about the loss as well as body language. When patients come to you, they have often been through several losses. Do you recognize them feeling that their loss has not been acknowledged before? How do you work differently with this?

Unfortunately, we meet many patients who have not felt supported enough by their clinic or local hospital. This can be due to lack of time or training regarding fertility and miscarriage, but many raise that they have not felt heard, and that their losses have often not been acknowledged. At the CRP clinic, we meet with patients every day who have experienced multiple losses, so this is something that we have all made our professional focus. We’ve done this through training, but also through daily experience we have gathered experience in what to say and when/how to say it, and are not afraid of the emotional side of our patients’ history. By being compassionate towards our patients and having an in-depth understanding of the emotional challenges, as well as having tools that we can refer the patients to, we are able to customize the support for patients to a large extent.

Thank you Lorna for sharing your experience and knowledge of working with bereaved patients!

Psst: Did you know that all patients at CRP Clinic get access to Tilly? If you are interested in making sure your patients get the mental and emotional support they need during a tough fertility journey, please do reach out to us at hello@mytilly.co to learn more about our services.

Did you know that up to 1 in 4 pregnancies ends in a miscarriage? This means that there are up to 1,000,000 miscarriages in the United States. We have gathered some learnings from the clinic perspective on how to approach bereaved parents, and how the clinic can help in supporting patients through grief.

Understanding the Impact of Care Provider Support on Pregnancy Loss Grief

I’ve experienced pregnancy loss - 5 miscarriages to be exact - and looking back, here are all the things I feel I did wrong. This isn’t about treatment details or procedures I could have done sooner. I am talking about the mistakes I made when it came to dealing and coping with miscarriages - because for a long time, I just didn't.

Not telling my friends. Well, of course, my husband knew, but we didn’t really share with anyone for a long time. It’s hard to not have your social support network around you, and it’s also hard to gain perspective on things when you’re keeping things to yourself. All the times I went to work or attended events while I was pregnant and super nervous - or while I was in the middle of a miscarriage - but put on a brave face and pretended that everything was okay took a huge emotional toll.

Not taking time to grieve. After each pregnancy loss, I never really took any time to grieve. I was so stressed out with making a new baby that I “forgot” to acknowledge the crisis I was in the middle of and to honor the child lost. Unfortunately we also experienced some insensitive comments from health care professionals saying “well, this is very common.” Looking back, I think they were just trying to reassure me that things would work out in the end, but not simply saying, “I am sorry for your loss” also added to my feeling like this grief was not valid. 

Keeping it a secret at work. I’ve been working from home in the middle of miscarriages, bleeding out what I had hoped would be our little miracle. Instead of actually taking sick days, I joined meetings online and made sure that I put the time into work so no one could call me a slacker - or worse, suspect that something was not right. In the end I had to tell my boss, just because a meeting with my new fertility clinic coincided with a company conference (and yes, this was a relief as she turned out to be very supportive).

Not taking care of my mind. This one goes hand in hand with the point above - by not acknowledging the grief of baby loss myself, I also didn’t acknowledge the mental struggle. This meant that I didn’t spend any time trying to find tools for me to manage and handle the grief and the stress. As someone shared in our community recently, “It took me a long time to understand that I was not a loony just for needing some support.” I thought the same thing for a long time. Once, I googled psychologists nearby, but just picking up the phone to call someone was not something that I could muster the energy and courage to do.

Luckily there were some things I did right as well. My husband and talked a lot, and we also made sure to go on outings and trips, putting an effort into not having our whole lives revolve around our losses and fertility struggles. For example, once when we visited our fertility clinic in London, we also popped over to the Harry Potter Warner Bros Studio, and I actually ended up having a great time, despite all we were going through. This also meant that our trip was not only about our losses - but also about us doing something we enjoyed together (we are both huge HP fans). And eventually, I started to open up about our struggles - at first to close friends, but then also to colleagues and acquaintances - and we were genuinely surprised by the warmth and community that received us. 

Not taking care of myself and acknowledging my losses sure did come back to bite me in the ass. I’ve never fully been able to enjoy my pregnancies, I’ve struggled with postpartum depression (which could have happened anyway but to me it's obvious that my mind was much more vulnerable from all we had been through), and I had to eventually build up the courage to see a psychologist and start learning tools and techniques to acknowledge and cope with my losses and the heightened stress that I had lived with for so many years. This experience has taught me about how important it is that we dare to talk about baby loss (in whatever form it comes - because sorrow and grief hits us all differently and doesn’t necessarily depend on what week it happened in), acknowledge it, and recognize how it can affect our mental health.

These experiences are the reason why I was part of starting Tilly: to create a platform where we can support others going through infertility and loss, and where we can help clinics understand the emotional challenges of baby loss and infertility so they can better support their patients. We aim for all of us to come out of the other side with our minds intact and our bleeding hearts slowly healing. The scars might stay forever, but we can carry those scars with us and still continue to live our lives fully.

With much love and sympathy for all of those touched by the grief of baby loss,

I am talking about the mistakes I made when it came to dealing and coping with miscarriages. Not telling my friends. Not taking time to grieve. Not taking care of my mind. Keeping it a secret at work.

All the things I did wrong when dealing with pregnancy loss

October is Pregnancy & Infant Loss Awareness Month, with Baby Loss Awareness Week, October 9-15, as its focus point. At Tilly, we dedicate this whole month to honor and put the spotlight on how common pregnancy and baby loss actually is, and the grief that baby loss can bring.

Sadly some babies are lost during pregnancy, birth or shortly afterwards, and the grief that can come from that experience can be immense. It’s estimated that up to 25% of pregnancies end in miscarriage - but has the notion that “this is so very common” really ever helped anyone to deal with the sorrow and grief of the loss?

Baby loss has many forms. During pregnancy there are early and late miscarriages, ectopic pregnancies, stillbirths, and termination for medical reasons. In some cases the baby loss is so early that many are not aware that they were ever pregnant, as is the case with chemical pregnancies where an embryo forms but then stops developing. A failed transfer, where a healthy embryo has been transferred but for some reason does not continue into a healthy pregnancy is also a form of pregnancy loss.

The important takeaway is that grief is personal and cannot be measured by the number of weeks you have been carrying your baby. Yes, having to make the hard decision to terminate a pregnancy as your baby is too sick to survive, or losing your baby to stillbirth in the last few weeks of pregnancy is heartbreaking on so many levels. Nevertheless, the reality is that from the day you know you might be pregnant, an emotional connection with that little life can be formed, and dreams about the life you will have together start growing. When that is shattered, it can be devastating.

Pregnancy and infant loss is often not acknowledged, and the grief that it brings is often diminished. This is called “disenfranchised grief”. Comments like, “It was probably for the best, there must have been something wrong with it,” or “You can just try again” are unfortunately too common and not helpful - and sometimes painful. This is what makes Pregnancy and Infant Loss Awareness Month so important. One child does not substitute another - so even if next time things work out, it doesn’t mean that the sorrow over the baby that was lost goes away.

Pregnancy and Infant Loss Awareness Month is an opportunity to highlight how this issue affects so many in our society, and to bring all of those touched by baby loss together as a community to feel understood and less alone.

Tilly is a proud supporter of Pregnancy and Infant Loss Awareness Month and we are grateful to the community for coming together during this time.  

Jenny Ann, founder of Tilly, who has experienced 5 pregnancy losses

World Childless Week is 11-17th Sept 2023. This week was created by Stephanie Joy Phillips in 2017 to support and raise awareness of the childless not by choice community, and enable every childless person to share their story with confidence.

Tilly was founded by former fertility patients to support others going through fertility struggles. Being childless not by choice is a stigma and a life crisis that is rarely talked about openly. Tilly wants to be part of changing this and we applaud the World Childless Week initiative. Thank you World Childless Week for putting the spotlight on something that touches so many in our society. 

Thank you also to Resolve for highlighting this week and being part of breaking down the stigma.

Together we can support and raise awareness of a struggle that affects so many!

World Childless Week is 11-17th Sept 2023. This week was created by Stephanie Joy Phillips in 2017 to support and raise awareness of the childless not by choice (cnbc) community and enable every childless person to share his or her story with confidence.

Tilly is recognizing World Childless Week

1 - https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5039035/

2 - https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5336602/

3 - https://pubmed.ncbi.nlm.nih.gov/20967242/

Jenny Ann Johnson is the founder of Tilly. She’s spent a decade working on digital educational products prior to founding Tilly. After struggling with infertility and miscarriages for many years she finally found her path forward and is today blessed with four children. She is now creating the supportive and educational tools she herself was missing while going through fertility treatments.

Infertility comes as a shock to many, as do the mental health implications of the struggle. But when you think about it, it makes sense that a majority of fertility patients experience anxiety and depression, when having children is a life goal they are struggling to reach.

What is heartbreaking is that only 19% of fertility patients feel that their fertility clinic provides enough support when it comes to emotional challenges*

It’s 2023 - we believe it’s time to change this!

Fertility care has traditionally not focused on the emotional and mental struggles that the patient faces. Fortunately, patients are increasingly looking to get comprehensive whole-patient care, and mental health support is an important part of that. There are clinics that are very attentive to the mental health struggles of fertility issues - but sadly they are still too few. It’s understandable that even when clinics have the patients' best interest at heart, they struggle to give both medical and mental health support. However, seeing that there are numerous studies that show that digital therapy is an effective way to treat symptoms of anxiety and depression, there are cost-efficient alternatives to help support patients. This is what Tilly is made for. For fertility patients, by fertility patients (and backed by science and a team of psychologists and therapists of course). Tilly has tools and exercises based on well-proven frameworks like CBT and ACT, which we have tailored to the specific struggles of infertility.

When we look at how few patients feel they get the support they need from clinics, we believe it’s time to change this number - and we plan to follow-up on this on a yearly basis. We see that change is coming and are determined to be part of making it easy for fertility providers to give their patients the best whole-person support.

For a future with better fertility support!

Only 19% of fertility patients feel that their fertility clinic provides enough support when it comes to emotional challenges

81% feel that their fertility clinic does not give enough mental support

You may have come across the terms PCOS or PCO, or possibly even heard from a gynecologist that you have one of these two conditions without receiving a detailed explanation. We'll help you clarify the terms and delve into the difference between PCO and PCOS, what the conditions actually entail, how your body may react, and what you can do.

Of these two conditions, it is primarily PCOS that can affect your fertility, and many receive the diagnosis when they attempt to conceive. But PCOS can affect much more than just your fertility, and it's often possible to prevent the symptoms, so it's very valuable to identify signs and symptoms as early as possible.

In fact, PCOS is relatively common - it's estimated that up to 10-15% of all women have it. Despite this, there is still much to learn through research, and there is a lack of knowledge both among women themselves and within healthcare. Reports show that affected women may need to wait up to two years before a diagnosis is made, and they often have to see three or more doctors before a diagnosis can be established. Therefore, being an informed patient can be very beneficial when it comes to PCOS!

What is the difference between PCO and PCOS?

PCO stands for polycystic ovaries and literally means that you have many (poly) ovarian cysts on your ovaries. This can be detected by ultrasound, which shows a so-called string of cysts. About one-third of all women have ovaries that look like this, and in many cases, it's nothing to worry about. There are many different reasons why you can have many cysts, such as being in puberty, having an underactive thyroid, or taking hormone medications (such as contraceptives). You can temporarily have polycystic ovaries, and the appearance of your ovaries can vary over time.

PCOS, polycystic ovary syndrome, is something else despite the very similar name. Most people with PCOS have polycystic ovaries just like in PCO, but PCOS also causes a range of other symptoms. It's a hormonal imbalance that also manifests through irregular or absent menstruations, male-pattern hair growth, and acne. It's important to understand this difference between PCO and PCOS when making a diagnosis - for example, a PCOS diagnosis cannot be made solely through ultrasound!

PCOS - what do the symptoms look like and what can it lead to?

PCOS is not a simple condition - the symptoms can vary from person to person and over time. Symptoms often begin to appear when you enter puberty, and for many, the symptoms actually decrease with age. Your lifestyle and potential weight gain can also affect the degree of symptoms, which we'll explain in more detail below.

Menstrual irregularities - infrequent ovulation and menstruations (cycles longer than 35 days) or completely absent menstruation.

"Male-pattern hair growth" - increased hair in the face, abdomen, and thighs.

Difficulty losing weight - often fat around the abdomen that is hard to get rid of.

If you constantly have very irregular menstruations or none at all, you should always seek help to investigate the reason - it may be due to PCOS, but also a range of other things. Additionally, if you have several of the above symptoms, it's important to ensure that your doctor conducts a thorough examination to confirm PCOS - read more about how a diagnosis is made below.

Many receive their PCOS diagnosis when they discover they have difficulty becoming pregnant. The reason PCOS can make it harder for you to become pregnant is that it affects your ovulation - you either ovulate very rarely or not at all (and therefore have menstruations infrequently or never). Ovulation is required for you to become pregnant, and if you ovulate very irregularly, it can be difficult to identify your fertile days, which also occur less frequently if you have PCOS.

It's absolutely not impossible for women with PCOS to become pregnant, but it may take longer and often requires assistance.

Untreated PCOS can ultimately lead to not only fertility problems, but also an increased risk of serious diseases like diabetes, cardiovascular diseases such as high blood pressure and heart attacks, and even uterine cancer.

It's still not entirely clear what causes PCOS, but it's believed that the condition is influenced by many factors, both genetic and lifestyle-related.

To understand the causes, it's interesting to delve into two areas - excess androgens ( "male sex hormones") and so-called insulin resistance (reduced sensitivity to insulin). Both of these conditions are common when you have PCOS, and they are what underlie the various symptoms that PCOS presents.

The androgen excess is responsible for polycystic ovaries, menstrual irregularities, increased hair growth, and acne. Insulin resistance is the culprit when it comes to abdominal obesity, increased risk of type 2 diabetes, and cardiovascular diseases.

In fact, there is consideration about changing the name of the condition - the current name is a bit misleading since it only describes how the ovaries may appear in PCOS and doesn't address anything about androgen excess and insulin resistance, which would be more relevant.

In a normally functioning menstrual cycle, the growing follicle (egg sac) produces androgens that are then converted into estrogen. To trigger ovulation with the help of the hormone LH, the brain requires a peak in estrogen. However, in PCOS, one could say that the follicles are idling. Despite this, the brain attempts to induce ovulation and continues to secrete LH, causing your LH levels to remain elevated much longer than normal. Therefore, if you have PCOS, ovulation tests (which look for an LH peak) will not be reliable; you will either get positive results all the time or not at all.

Persistently elevated LH levels lead to increased production of androgens like testosterone and dihydrotestosterone. Additionally, the liver's production of sex hormone-binding globulin (SHBG) decreases, resulting in high concentrations of free testosterone in the blood, leading to symptoms like male-pattern hair growth and acne.

Insulin resistance means that you cannot effectively utilize insulin, resulting in increased insulin production (hyperinsulinemia). This condition also stimulates androgen production in your ovaries and inhibits SHBG production. SHBG levels usually decrease before an increase in testosterone levels is observed in the blood. Even if your total testosterone level is within normal limits, your level of free testosterone (the unbound portion) may be elevated.

Thus, it can be said that elevated androgen production and insulin resistance influence each other, where insulin resistance triggers increased androgen production and increased androgen production contributes to insulin resistance. It is not entirely established today which of these two factors is the primary cause of PCOS. Most likely, both factors can drive its development.

Diagnosing PCOS It's important to know that PCOS cannot be diagnosed solely through ultrasound; your doctor must also examine your hormone levels and consider your symptoms. In addition to testing testosterone levels in the blood, your AMH level may be interesting to look at. In PCOS, your AMH level is often high because it is the "immature" follicles on your ovaries that secrete the hormone AMH, and if you have PCOS, you have many of these.

To receive a diagnosis of PCOS, you must have a combination of different symptoms. A number of experts agreed a few years ago on the criteria to be used in diagnosis, known as the "Rotterdam criteria."

You must meet at least two of the following three criteria:

An ultrasound shows that you have polycystic ovaries, meaning more than 12 follicles on each ovary.

You have irregular or absent ovulation, which manifests as irregular and long menstrual cycles (longer than 35 days).

A blood test shows elevated levels of total or free testosterone. And/or you have symptoms of high testosterone levels, such as male-pattern hair growth or acne.

It is also important to rule out other potential causes, such as ovarian tumors that can lead to increased androgen production.

Even though the above criteria are strict, it's important to remember that we are all different, and there is always a spectrum for each criterion. Everyone experiences their PCOS differently, and it can vary over time: some may not be affected much, while others have significant problems that affect their daily lives and general health.

If you suspect you have PCOS, Tilly Fertility Check can provide you with a tool to get the right help - you'll receive hormone levels to bring to your appointment, a checklist of questions to ask, and so on.

Can I have PCOS without cysts or follicles on the ovaries?

According to the Rotterdam criteria, since you only need to meet two out of three criteria to receive a diagnosis of PCOS, it can be confusingly possible to be diagnosed even if you do not have polycystic ovaries. This in itself is a good reason why the name of this condition should be changed!

Does irregular menstrual cycle and absent ovulation mean I have PCOS?

The simple answer is no, because both irregular menstrual cycles and absent ovulation can have many other causes. One example is hypothalamic amenorrhea, which is not caused by the ovaries but rather by the brain "shutting off" your menstrual cycle if you are undernourished or overexercising.

Since PCOS can manifest in different ways, there is no one method that works for everyone. In conventional medicine, the focus is primarily on relieving symptoms such as acne or troublesome hair growth. Often, hormonal contraceptives (such as birth control pills) and anti-androgens are prescribed to reduce androgen excess.

Alleviating symptoms can be important for your well-being, but it can also be valuable to try to address the underlying causes of your discomfort. Making changes in your lifestyle can improve your hormonal imbalance and insulin resistance. It's always worth trying to see if it has any effect for you.

Maintaining a healthy weight, proper diet, and exercise can help

If you are overweight, losing weight (even as little as 5-10% of your weight) can improve your hormone balance, and over time, this can contribute to a more regular menstrual cycle, which also increases the chances of pregnancy. A healthy weight can also alleviate symptoms like troublesome hair growth or acne, and it also reduces the risk of diabetes and cardiovascular diseases. It's not always easy to lose weight, especially with insulin resistance, so seeking professional help can be beneficial. How much weight loss helps is also individual, and you need to try and see what works best for you and how your body responds.

Even if you are of normal weight, regular physical activity is good, especially strength training, which increases your muscle mass and improves your insulin sensitivity and hormonal balance. Eating a nutritious and balanced diet is also important because through diet, you can stabilize your blood sugar.

In some cases, the diabetes medication Metformin is also used to address insulin resistance.

What do I do if PCOS affects my fertility?

If PCOS is the sole reason for your difficulties in getting pregnant, it is most likely due to irregular or absent ovulation. In this case, you can receive medical help in the form of ovulation induction, which can be done with medications like Letrozole®. However, if it does not yield results, you may consider undergoing IVF treatment.

It's fantastic that there is help available, but it's also important to know that fertility treatments can be very demanding. If, with the help of your doctor, you have identified that you have PCOS, it may be worth trying to first prevent the symptoms and stabilize your cycle. Ideally this should be done before you actively plan to become pregnant. For example, you can start by making some changes in your lifestyle (altering your diet, exercise, and so on) and see how it affects your menstrual cycle. Stabilizing your hormone and insulin levels is beneficial from a general health perspective, not just to increase the chances of becoming pregnant.

We must also point out that fertility is highly complex and dependent on several factors - there may be other factors besides PCOS that come into play. It's important to conduct a thorough investigation where both the woman and the man (if a sperm donor is not used) are tested, so that one doesn't become fixated on one issue and overlook another complicating factor.

If you suspect you have PCOS or want to know more, we recommend heading over to our friends at Ovulai, their app is specifically designed to help women with PCOS. We also recommend visiting PCOS Awareness Assocaiation for a wealth of resources about PCOS.

And, as always,  if you are looking for others going through the same thing, join the Tilly community in the Tilly app! Here you can find support in how to cope with the emotional and mental challenges that PCOS can entail.

PCOS and Fertility.  It's estimated that up to 10-15% of all women have PCOS. PCOS - what do the symptoms look like and what can it lead to?

Instagram Live - Sperm testing with Shaun Rogers

Testing sperm is really quite easy - especially with the growing number of tests that can be taken at home.⁠

But what can results tell us? What should we do with them? Do we always find out WHY sperm quality is low? And what can we do about it?⁠

Watch THIS LIVE with Dr Shaun from Mojo where he talks about sperm testing!

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