# 12 Can menstrual cycles affect autoimmune diseases?
Do you get a flare up of your symptoms around your period? In this article I discuss why this might be.
Yes this article is about menstrual cycles, but any men reading this, I do encourage you to read on too. I always think that women’s health issues not only affect women, they also affect society as a whole. I hope by the end of reading this article you may understand why. If anything, you may find some useful information that can help you better understand your wife, your work colleagues, sister, daughter etc knowledge (and empathy) is power.
I look at a lot of other blogs and forums regarding ankylosing spondylitis (AS). I find comfort in solidarity. One group I follow on Facebook is Ankylosing spondylitis for women. Frequent questions that seem to pop up time and time again on this forum are: do your periods/menstrual cycle cause a flare up each month? Or does your biologic medication interfere with your cycle? Does it increase/decrease your flow? Does birth control interact with your AS? Is anyone else having fertility issues? My husband and I want to start a family, will I be able to?
The list of questions go on and on. It would take me days to read through them all. It’s obviously a topic that is on a lot of people’s minds, and it also shows that there isn’t much information or research about it out there, that’s why we’re turning to each other for answers. No surprise there really, women’s health has not been studied as much at it should have been, no where even close. Women have not been included in medical trials for years in the past, so no wonder we don’t know much about how certain diseases, medications or treatments will affect us. I also think that because this particular disease was seen as a ‘man’s disease’ for so long, that not enough research has gone into how it effects women, especially in relation to hormones.
The women in forums go on to say things like ‘Sorry if this is TMI’ or ‘I know this is probably a bit taboo to talk about’ or ‘Sorry if this is gross’ etc This just shows how conditioned we have become into thinking that talking about periods is wrong, or dirty or just something we shouldn’t talk about. Half the population will experience it. It's why people even exist on this planet! But even amongst ourselves in a safe group who are going through a very similar experience, we can still feel a bit vulnerable talking about it. So that’s exactly why I’m writing this article today. I don’t have all the answers, but I think it’s good to at least talk about the topic.
My own example
I’ve always been quite in tune with my body (despite Dr’s implying I was a bit of a hypochondriac on several occasions before my diagnosis), and I noticed quite early on that when my AS symptoms were getting worse, a lot of the time it correlated with my monthly cycle. Other women say it’s during menstruation, others say around ovulation, but for me, mine is notably worse in the week leading up to menstruation. But either way you look at it, a flux in hormones seems to be a key link to symptom variation. Now I’m not saying all flares are due to hormones of course, I also have flares due to how much I exert myself, my diet and weather changes, but there is such a notable difference in how I feel during the month, that I feel it should be talked about more. At no point in my diagnosis or talks with my Rheumatologist did they ever mention this possible link. Not even a tiny gesture or secret clue. It’s not just AS where this happens. There seems to be a link between hormones/fluctuations in symptoms and pretty much all autoimmune diseases that I’ve looked into, even with long COVID. And seeing that 4 out of 5 people who have an autoimmune disease are women, I think that’s a rather important piece of information they have chosen not to share. There seems to be a notable change to women’s cycles both on the run up to getting a diagnosis of AS, and also once starting treatment for AS with biologic medications.
So what are the symptoms?
For me personally my symptoms include worsening of pain and stiffness of both joints & muscles, bowel problems like increased diarrhoea, mood fluctuations, increased depression, increased anxiety, headaches/migraines, nerve pain, increase in joint swelling, fevers, hard to regulate temperature (even more than usual), increase in heart palpitations, dizziness, nausea, bloating, fainting, breathlessness. These were just some of the symptoms that both I and other women in the forum experience each month.
But it’s not only these symptoms that are occurring. It seems to be changing the actual flow of the menstrual cycles and the duration of them. Some women report that their periods had stopped completely, others said the flow increased once taking biologics (some said to an alarming rate which lead to anaemia), others said their periods go on for weeks at a time, and in general that cycles were becoming more irregular and hard to predict, whereas before their bodies were like clockwork. Mine included.
The nearest thing to help I have gotten from Doctors over the years in relation to these issues, has been to put me on birth control. When I didn’t want to take it anymore because it made me depressed and have increased bowel issues, all they did was (very quickly) list a bunch of other birth control to try. They then asked if I wanted children. I said no. Probably not. They shrugged and then said ‘Ok, come back if you do’….Thanks…super helpful…
Why is this important?
Due to the many symptoms that these changes can create, I think its important to discuss because it can have such an impact on a woman’s life both physically and mentally. It not only effects her, but how she can interact with the world; her relationships, her work, her hobbies, her quality of life.
I also think it’s important to talk about it because there is a comfort in knowing you are not alone and there are others out there that understand. That your not going crazy even if Dr’s are dismissing you. You're not being a hypochondriac because you're listening to your body and asking ‘difficult’ questions. That you are not to blame for your sudden increase in symptoms.
It also helps to know how to schedule your life around it. Are there medications you can try e.g. different birth control options, pain killers, changes in treatment? Will you need more support around that time? Can you put things in place around that time to lessen your stress, can you be kinder to yourself, or eat better to lessen the chance of having a fall blown flare up? All of these questions are valid.
It’s also important to understand about it because certain treatment options for bad period pains, may actually contradict other diseases you may have. For example, I was given many NSAID’s over the years for bad menstrual cramps, but over time I learnt that this increased my IBS and bowel symptoms. The same went for birth control. My gut, depression and anxiety, all got worse whilst on the contraceptive pill. I know this isn't the case for everyone, but enough women have told me the same thing, whilst no doctor ever warned me of the possible side effects!
One study I read said that ‘Changes in menstrual function occur frequently in the year prior to IBD (inflammatory bowel disease) diagnosis; therefore screening for menstrual irregularities should be considered in women with newly diagnosed IBD.’ Due to there being a strong link between IBD and AS, shouldn’t menstrual irregularities also be something we screen in women who have been diagnosed with AS?
Even this study goes on to say ‘Women with IBD should be counselled about these potential changes to the menstrual cycle due to their disease and/or its treatments given the importance of menstrual cycle regularity on fertility and overall well-being’.
I wish Doctors would give us more information around the time of diagnosis so we are better informed. At least give us a heads up that our cycles may change once on biologics, or give us an explanation as to why they might have changed already leading up to diagnosis. This could have helped to alleviate some of the stress and confusion for many women.
Possible explanations?
I don’t want to get too deep into the science, but some studies I’ve read say that the fluctuations in estrogen and progesterone levels could be the reason, and that lower levels of estrogen and progesterone were found in women with active AS. But they didn’t mention why this was? Was this due to systemic inflammation perhaps?
Estrogen may have an anti-inflammatory effect on the body. So if it’s lower at certain times of the cycle, and then lower still in AS patients, this could lead to an increase in pain and stiffness due to increased inflammation levels.
According to another study its more complex though. On the one hand estrogen can reduce bone resorption and inflammation, but ‘other estrogen metabolites can be proinflammatory on the synovial tissue’.
Other studies mentioned that prostaglandin hormones could be the cause. Prostaglandins are hormones that are released around menstruation which cause uterine muscles to contract and therefore produce cramps. Prostaglandins can also have an effect on bowel tissues, and other inflamed parts of the body. Could this be the reason my lower back & pelvis hurt more around menstruation? It would make sense with the proximity to the uterus.
Some studies I looked at said going on oral estrogen therapy reduced AS symptoms. Another study said that oral contraceptives didn’t have much of an effect on AS/rheumatoid arthritis symptoms. This study pretty much said that TNF medications didn’t have an effect on menstrual cycles. But I looked at the list of possible side effects for the Adalimumab medication, and it listed ‘Abnormal vaginal bleeding’ and ‘menstrual changes’ as two possible (less common) side effects! So who are we supposed to believe?
The more I read about it, the more complex it gets! Which shows how important it is for Dr’s to explain it to us in ‘regular’ terms so we can understand and make better informed choices. Also for more in-depth research to take place so we can get a more concrete answer.
So what helps?
The following are a few things that I have tried and tested and found useful over the years:
Gentle stretches. I love Yoga with Adriene’s video on Youtube ‘Yoga for cramps and PMS’ (Plus I’m obsessed with her dog Benji who always sits by her, cute)
Massage. Especially with a nice relaxing body oil like lavender, or even an Ibuprofen gel on your tummy and lower back. I like the gels with a cooling effect with added menthol.
Lower your stress levels (easier said than done I know)
Engage in calming and soothing activities e.g. creative projects, watching nice movies/TV, reading, nature walks. What ever makes you happy :)
Heat e.g. baths, hot water bottles, heat pads. With essential oils like lavender. Epsom salts. Magnesium lotions.
More support & understanding from loved ones. I give my husband a heads up to tell him I may need more help around the house at this time (and more cuddles).
Talking to others e.g. Your Dr, fellow women, loved ones.
Medications e.g. pain killers, different treatment options, possibly birth control? (Varies for each person).
Diet (as in good nutrient rich foods, protein, anti-inflammatory foods & keeping hydrated). I really recommend reading the ‘Fast like a Grrl’ book by Mindy Pelz. There is some great information about how food can influence hormones and what we should be eating at different times of the month for more balanced hormones.
Wearing soft, non-restrictive clothes especially around the tummy. Any one else get serious bloat?
Wuka period pants. I find these a lot more comfortable than wearing tampons or pads. They are soft, comfortable, reusable, easy to wash. A little expensive up front but then you are saving money in the long run by not buying pads etc.
Keeping a journal to track symptoms to get a better understanding of your body and evidence to show your Dr
Be kinder to yourself (In the words of Lizzo ‘In case nobody told you today, you're special’ 💕)
Can you rearrange your calendar to reduce activities & commitments around peak hormone fluctuation times/flare ups?
In summary, anything that helps to reduce the overall inflammation in your body. I find this lowers the chance of your threshold being met for a fall blown flare up.
Have I missed anything? What helps you? Please leave in the comments below!
Summary
So after writing this article I’m left both more confused but also more enlightened at the same time. Some studies say that hormones can impact AS, others say there is no link, some studies say it can effect fertility, others say it doesn’t, some studies say TNF medications can interfere with menstrual cycles, others say it doesn’t. The data seems contradictory and confusing to me! What this shows to me is that further money and research needs to be going into this topic for clarification. Women’s health needs to be taken seriously and our concerns need to be listened to without making us feel ‘inconvenient’ for even mentioning it.
Also, when I say it’s left me more enlightened, I mean that I’ve been reassured that I should always listen to my own body. Our bodies hold more wisdom than I think people realise. Since being diagnosed I’ve heard countless stories of women being ignored about their concerns over their own health and I just keep thinking to myself, why does this keep happening?
It took over ten years for me to get a diagnosis of my autoimmune disease. When I didn’t know what was happening in my own body, or I was being dismissed over and over again, it had a deep emotional and physical toll. I felt confused, angry, my mental health plummeted, my self-esteem lowered, it impacted my relationships and how I interacted with those around me. It impacted on the choices I made for studying, work, future goals. It influenced my choice about if I was going to have children or not.
When women have more information about their own bodies, it’s more than just being informed, they are also being empowered, they are given a voice, they have more choices, they are less stressed, they have better quality lives, they are in less pain, they are healthier and safer, they can work and earn money, they can interact with their loved ones better, they can have and raise children better, we can advocate for others better. Society as a whole gets better. So I think it’s worth putting the research into it, don’t you?.
I shit you not (excuse my french), as I have been writing this particular blog, a news article popped up in my news feed: ‘Tampons found to contain concerning levels of arsenic and lead in world first study’. The article goes on to say that the toxic metals were intentionally added as a pigment/whitener (why, just why?), and that it’s even more harmful because ‘the skin around the vagina has a higher potential for absorbing chemicals than the skin in other parts of the body’. This is exactly what I’m talking about. The fact that deadly chemicals can be pumped into women’s health products for so many years without question, and its only now that the FIRST study has ever been done about it?? It makes my blood boil.
That right there is exactly the reason why more studies need to be done in relation to women’s health….
What about you?
Have you found a difference in your cycle since having AS, or taking medications for it? Is there anything in particular that helps? Do you find your Dr’s very helpful when discussing hormonal health? Do you find all of the conflicting data confusing too? Did any Dr ever mention that your menstrual cycle might change? I would love to know in the comments below.
Thanks again for reading. I hope you all have a lovely week.
Sending you all healing thoughts.
Lots of love and hugs,
Amanda x
P.S Below is a little snippet from my diary recently. I felt it was quite in tune with today’s article, so I thought I would include it. Let me know if you like the diary snippets and I will include more of them in my future blogs! Or you can let me know through the little poll below! Take care x
Friday 12th July
The menstrual cramps are kicking in strong today. I look at the ‘Resting is productive’ sticker on my laptop and sigh with frustration. I have to accept that today will be one of those days where I just need to rest and take care of myself. I need to let go of the guilt of not being very productive and let the waves of cramping take me to my bed. I put aside what I should do and start leaning into what I need to do for my body. I have my tried and tested methods of taking care of myself through my period. It goes along the lines of the following.
I take a nice hot shower, letting the hot water streams massage my stomach and lower back. I then slather myself in lavender magnesium body butter for an instant hit of calm. I rub a menthol ibuprofen gel to my cramping areas with nurturing strokes of my hand. I wear only the comfiest of clothes to stop any restriction on my bloated belly; my grey tracksuit bottoms and cotton baggy T-shirts with cute designs on them to give me a little smile. I make a hot water bottle and carry it around with me everywhere, half tucked into my tracksuit bottoms, half over my top, like I’m carrying around a joey in a kangaroo pouch. I tenderly stir a heaped teaspoon of cacao powder into hot oat milk, stirring in some heather honey for good measure. I pour it into my favourite lilac sheep mug, smiling with the memories it conjures up of the lake district where I got it on my honeymoon, and take it back to my bedroom. Here I gather all the pillows I can find and make a pillow fort. I slip into my brand new blue bee bed sheets and get cosy. Here I shall remain for most of the day. I drift in and out of watching trash on telly and reading dreamy nature books. This time I’m reading Nan Shepard’s book ‘The living mountain’. The rich language she uses to describe the Cairngorm mountains is like poetry, each word feels like medicine in my mouth as I read it out loud. I have deep stretches of time where the pain of my cramps fall to the back of my mind. Her words feeling like anaesthetic. When a particular passage of the book needs time to steep in my brain like tea, I put the book down and day dream out of the window, letting the images of the mountains take me away. I usually get drawn back to reality by a noise outside. It’s summertime so my windows are wide open. The skies are quite grey and cloudy today but the air is still thick and humid. I hear the ladies knitting group gather next door in the town museum garden. I hear their stories of their grandkids and the sympathetic noises they make to each other when they talk about their problems from the week. It’s nice to hear women get together like that. Sometimes other women are the only ones who understand us and our pain. I smile with appreciation and pick up my book again.
Where was I? Ahh yes, ‘we had watched the dawn light strike the Cairngorms, like the blue bloom on plums’. The cramps start to dissipate again. I mouth the words Blue bloom on plums. Poetic pain relief to my aching body…
Ahh this is an interesting read. I’ve written so much about hormones, the menstrual cycle, my own journey and a recent 3 part series of an interview I did as part of sharing my menstrual journey and story.
Through the lens of migraine (and it sounds similar for AS), those of us who experience migraine attacks either before or as our period starts (then plenty of us experience attack as it ends too) have a lower dip in oestrogen at this time than those who don’t.
Menstrual migraine is the most severe and disabling of all attacks, the most difficult and challenging to overcome and the most medication resistant. I imagine this is in no way dissimilar to other auto-immune conditions.
The angle I went down was to look into hormonal imbalance as the cause and taught myself to rebalance my hormones. Through reading the book “balance your hormones, balance your life”. It’s a big read and a lot of what you share here are ways to rebalance your hormones. So the good news is you’re already on that path - which, for me, made it somewhat easier to digest what I was reading and go ahead making the teeny tiny changes I had started with and really commit to those for as long as it took.
It’s a long term approach, took me 3-5 years but I do live a balanced life now and what felt like a 24/7 job (for 4 years) eventually became my way of life from year 4 onwards.
Doctors receive little to no training in hormones and as you rightly say, it is complex. Its helped me to understand that doctors are there to save lives and help us treat disease. They’re not there to help us create health - learning to create health is something that we can do for ourselves. (Though I appreciate we have years of gaslighting, dismissal and misdiagnosis to contend with too as well as lives lost and to then have to take radical ownership of this is massive). It is possible and the pay offs are big.