Since the early days of the Pandemic, late Spring 2020, when awareness of Long Covid first began to spread, women were highlighting the changes they were seeing with their reproductive health. They were reporting a variety of issues; changes to periods; their timing and the symptoms associated with them as well as issues with other aspects of their reproductive health.
For more information on the defining features of Long Covid, see here;
Some of the issues which women were flagging were changes to their cycle, with irregular periods, missed periods, a worsening of the physical and emotional symptoms of their PMS. Other women reported that they believe their Covid infection had triggered the onset of perimenopause/ menopause. There were also accounts from parents who were seeing signs of precocious puberty in their daughters following Covid infection. (For girls, precocious puberty is defined as onset of puberty before age eight).
We spoke to two women, both Long Covid sufferers, who experienced changes to the pattern of their periods following SARS-coV-2 infection. Both of these women also have a diagnosis of Long Covid.
Extremely painful heavy periods
Speaking to Laura, (Laura’s name has been changed for the sake of her privacy), aged 16 about her experience, she described finding that her periods changed in the months after she had her first Covid infection in 2020.
'I started seeing a difference in my periods about 2/3 months after my Covid infection'
Similar to many other women, Laura experienced changes to the pattern of her periods in comparison to her periods prior to infection.
'Before Covid I would get very mild cramps, I didn't even need pain medication, but after Covid the period cramps were unbearable, along with terrible nausea, also I get more irritable than I used to'.
Laura had trouble managing the severity of period cramps; 'Sometimes the pain was so severe it would trigger me to have black outs'.
She also found that her other Long Covid symptoms (such as fatigue) appeared to be greatly exacerbated during the days before her period arrived.
'I would be more dizzy, more likely to have one of my fainting spells (which are a symptom of Laura's Long Covid) during that time of the month. The two days before my period arrived would be the worst… My periods were also much more heavy'.
See our website for a full list of the main symptoms experienced by Laura and other children and young people experiencing Long Covid.
Ovarian Cysts
The effects on Laura’s reproductive health extended beyond her periods;
'Covid also seems to have triggered ovarian cysts; I have had a few since my Covid infection, for which I have had to have repeated scans. I never had any issues in that area before.'
Laura’s experience is not unique, with other women with Long Covid reporting problematic ovarian cysts for the first time in their lives.
This study found evidence that SARS-CoV2 can negatively affect ovarian function;.
This research suggests that women who have recently had Covid (and particularly those with Long Covid) need to be aware of the symptoms of an ovarian cyst. These include pelvic pain, bloating, constipation, frequent urination and pain during intercourse.
When asked about seeking medical support for her new symptoms, Laura advised
'I felt when I first raised the issue of my periods it was just dismissed by the doctor. We (Laura and her mother) had to push very hard to get to see a Gynaecologist, it was the gynaecologist who then suggested the pill'
Unfortunately, similar to many women, Laura experienced side effects when she commenced taking the contraceptive pill. This may possibly be a greater issue for women with Long Covid since patients often report having a greater sensitivity to medications than they had previously and also may be more likely to have to cease a medication due to the burden of these effects. In Laura’s case she felt the benefits outweighed the cost.
'The pill has helped but it brings its own side effects, but I have stayed on the first one I tried, as I am too worried about the nausea with my periods returning, I still have nausea but it is more manageable’
The ongoing management of women and girls struggling with these symptoms also poses a challenge with varying access to gynaecology services across the UK and Ireland. In the Republic of Ireland for example, women report a six month wait list to see a PRIVATE gynaecologist, the public services can take one to two years in some cases just for an initial visit. Therefore in many cases GPs are being left to manage these patients whilst they await an appointment, some GPs may not have the required knowledge in this specialist area.
'There has been little follow up by the gynaecologist, a follow up appointment after a year was arranged'
Laura also felt that the process of how to use the pill was not explained to her when it was first prescribed. It is disappointing to hear that young women are not being given direction on how to best use these medications and are instead reliant on family members or their own reading and research.
Peri/Menopause
In an Indie Sage meeting in Oct 2022 dedicated to discussing women’s issues and SARS-CoV-2, GP Menopause Specialist, Dr Louise Newson spoke about the increased vulnerability of women of a certain age when it comes to infections with SARS-coV-2;
‘We do have evidence that women who are menopausal who don't take HRT have a higher risk of mortality, more severe Covid’
Dr Newson noted that ‘any infection can affect ovarian function’. However she believes that SARS-coV-2 poses a greater risk than many other viruses in this regard;
‘The number of ACE2 receptors on our ovaries probably means our ovaries are being damaged a bit more from Coronavirus infection, not for every woman, but a lot’
ACE2 receptors are the protein that allow the Covid virus to infect human cells, acting like a receptor for the virus, giving access to the virus to a wide range of cells throughout the body.
It is the effect on ovarian function from Covid infection, which will lead to changes in a woman’s hormones, and it is these changes which are likely responsible for many of the symptoms women are reporting with their cycles post infection etc.
Dr Newson advises that there would seem to be a link between Long Covid and Peri/Menopause. If the virus affects ovarian function it clearly could result in an earlier onset of Peri/Menopause than would have occurred had the woman avoided infection.
In this research paper from Oct 2021, Louise Newson, Rebecca Lewis and Margaret O’Hara explore the relationship between menopause and Long Covid.
Unfortunately, there is no accurate test for the Peri/Menopause, nor is there yet a diagnostic biomarker for Long Covid. Dr Newson cautioned against the use of tests sold in pharmacies (or even blood tests performed by the GP) as a way to diagnose Peri/Menopause, as they simply are not reliable. This is due to significant fluctuations in hormonal levels day to day. This poses a challenge.
The symptoms of Long Covid and Peri/Menopause overlap greatly, (eg insomnia, muscle and joint pain, brain fog/cognitive impairment, low mood and anxiety). In a woman of a certain age, how much of her symptom presentation is due to Long Covid and how much may be due to the onset of Peri/Menopause will be very difficult to ascertain due to this overlap and the lack of a diagnostic test for either.
Dr Newson is concerned that many women who have a diagnosis of Long Covid may be failing to access hormonal treatments which could significantly improve their symptoms. She notes that HRT may benefit many women of a particular age group who have Long Covid and that the benefits of a trial on HRT likely outweigh the risk of side effects, given how severely affected many patients are by their Long Covid symptoms.
Dr Newson also explains that oestrogen levels are at their lowest in the leadup to a woman’s period.
This may explain why many women with Long Covid report that their LC symptoms become significantly worse in the days coming up to their period. It also may explain why some women are seeing benefits to the severity of their symptoms at that time of the month by regulating hormonal levels through the use of the contraceptive pill.
Severe PMS
Christina (age 36), mum of three (with two children also experiencing Long Covid), spoke to us about how Covid had changed things for her;
'After my first Covid infection, it changed; I started suffering with severe pelvic pain. In terms of mood, my PMS is now bad for a full 2 weeks before my period starts. Things definitely got worse after my second Covid infection as well'
PMDD (Premenstrual Dysphoric Disorder) is a severe form of PMS which impacts both the emotional but often also the cognitive and physical symptoms commonly associated with PMS.
A significant proportion of women with PMDD report that their mood is impacted each month, from the time of ovulation (day 14 approx.) all the way through to the start of menstruation (day 28 approx.). In effect, this pattern leaves them with only two ‘good weeks’ per month. Ovulation often brings a milder form of their PMS symptoms, with cramps, low mood, irritability etc.
With PMDD, many women find that within hours of their period arriving, their symptoms resolve. Others may find it takes a day or two for things to improve. Christina has not been diagnosed with PMDD, however felt that this pattern applied to her.
'I feel a build up of tension, and then within minutes of my period coming, this feeling, it just lifts'
Many women with PMDD struggle with a feeling of being out of control, with intense irritability often coming quickly without warning, with some women experiencing moments of severe anger that they find difficult to manage.
'I've these moments of rage and they can happen instantly, I'll be doing fine, and managing and then suddenly that feeling just starts'
Christina noticed that the mood changes that she was suffering from in relation to her cycle had started to impact on relationships with friends;
'I started removing myself from my friend groups (like our WhatsApp group chats) in the lead up to my period, and then I would re-emerge after and have to apologise'
Along with the irritability, many women with PMDD/severe PMS, also experience extreme low mood; and intense anxiety.
'During these times, I feel very very depressed, a sense of hopelessness, of pure despair, also I feel paranoid, overthinking everything'
Christina found that these mood changes were also effecting her family life, in particular her relationship with her husband;
'I realised that arguments (between myself and husband) were happening at the same time every month'
Click here for more information on PMDD
Unfortunately the cause of PMDD is unknown but some doctors believe that it is due to an extremely heightened sensitivity to the natural hormonal changes that occur throughout a woman’s cycle. If women with Long Covid are more likely to develop PMDD, could this be connected with the other sensitivities often seen with LC patients, where the body may have a heightened response to noise, light, touch and pain, and an increase in likelihood of allergic reactions?
Christina also believes her daughter has been effected by her Covid infection. She has shown signs of precocious puberty, her cycle has now started but is not yet regular. She also experiences mood issues with more severe mood changes than would be typical of her age, right before her period arrives.
PCOS (Polycystic Ovary Syndrome) & Covid
PCOS is a condition which affects women during their reproductive years, it involves abnormalities with hormones, mainly too much androgen. Women with PCOS often have issues with fertility, as they have cysts/follicles on their ovaries which contain immature eggs, this results in a failure to regularly release viable eggs. The exact cause of PCOS is not clear.
More information on PCOS here.
This study showed that women with PCOS are at greater risk of more severe disease and death from Covid infection.
‘The present review shows that women with PCOS are at 28%-50% higher risk of being infected with the SARS-CoV-2 virus at all ages and that, in these women, COVID-19 is associated with increased rates of hospitalization, morbidity, and mortality’
The greater risk posed to women with PCOS was flagged in the media in this article from May 2021.
Some women with pre-existing PCOS have reported a worsening of their condition following their Covid infection. It is not clear why this may be occurring, however PCOS is associated with chronic inflammation. Many of those treating Long Covid patients believe inflammation is a major driver of many of the symptoms, therefore a worsening of PCOS for women post Covid infection would make sense based on what we know about the body’s responses to SARS-CoV-2.
Research
What is clear from many women’s experience is that a great deal more research is required to fully understand the connections between Long Covid and women and girl’s reproductive health. The effect of repeat infections should also be examined.
There are currently a number of ongoing research studies at the University of Edinburgh including a study to examine potential interactions between Long Covid and the menstrual cycle. Another study, the ERGO study, will look at the effect of Long Covid on ovarian hormones and on the lining of the womb. Find out more
The following observational study in Palermo Italy is in it’s recruitment phase and will provide a comprehensive review exploring the connection between SARS-CoV-2 and female fertility. View here.
Summary
Women who have begun their Peri/Menopause at the time they become infected with Covid are more at risk of severe illness than women who have not. Female Long Covid sufferers are likely to experience an exacerbation of their Long Covid symptoms in the lead up to their period. It may be useful to plan medical appointments, social and work events accordingly. The use of contraceptive pill may help some women to regular their hormone levels and improve some of these symptoms.
If you are female and suffering with Long Covid, it is important to be aware of its potential impact on your hormones. Look out for signs of very severe PMS (also called PMDD) as it is important that this be diagnosed if applicable and treated. If you are over a certain age, be aware of the potential impact of a Covid infection on the timing of your Peri/menopause and consider asking your doctor about the possibility of trying hormonal treatments to see if they might improve your LC symptoms.
About
In 2021 Long Covid Kids became the first UK-based, international registered charity advocating for families, children and young people living with Long Covid.
The charity focuses on recognition, support and recovery, has already received recognition from the NHS and the Centre for Disease Control in the USA, and is a recommended resource in the NICE Long Covid guidelines.
Our Mission
Purpose
We believe all children should be able to thrive and look forward to a positive future. That is why we represent and support children and young people living with Long Covid and related illnesses and the parents and caregivers that look after them.
Our Vision
To achieve recognition, support and recovery for Long Covid and related illnesses in children and young people
Support Our Work
While children are living with life-changing symptoms and families struggle to seek support, we need to be here. Your donation will be used directly to support families living with Long Covid. Find out more about our Impact.
