Kia ora and welcome

If your period is impacting your life, Know your period can help you understand some of the symptoms and causes of abnormal uterine bleeding and when to seek help from your doctor.

This website was created to provide you with information about your period to find out if you are experiencing abnormal uterine bleeding. We hope that this information will help you to have conversations with your healthcare provider, family and whānau and friends. Experiencing abnormal uterine bleeding can be a difficult and isolating experience, but having information can give you ways to manage it.

This site is a safe space for all genders. You may notice that we have chosen to use the term ‘people with uterus’ instead of women. It may be your first time seeing this term used, however, it is important to know that not everyone who experiences periods identifies as a woman. For transgender, non-binary and gender-fluid folk, having your period can be a triggering and isolating time.

It is important to know that you are not alone. In fact, 1 in 3 people with a uterus experience abnormal uterine bleeding.

Claire, Rahera and Christine share their respective lived experiences of abnormal uterine bleeding in the following videos and audio.

While everyone's experience is unique and you may not relate to everything discussed, general advice and recommendations provided from experience can be useful and reassuring to hear.

In these experiences they talk primarily about the following topics:

  • What a period means to me

  • How to advocate for yourself and seek help

  • The impact on my life

  • Things that have helped me

Lived experiences of abnormal uterine bleeding

Claire

“There’s still that big step of going and seeing someone… it’s not just something you have to put up with, it’s not something you just have to go along with.”

  • What having a period means to me

    It’s part of being a woman, I think it would have been. It’s odd now not having periods, because I had a hysterectomy, so kind of losing that kind of reminder that I’m more than happy to have lost the pain. It was pretty difficult, I think, when I was at school. I had a lot of flooding. I’d be changing pads and tampons like every 15 minutes, walking to church on a Sunday. By the time I got there my clothes would just be, just be soaked in blood, and that was really, that was really hard to manage at that age.

    I did one of my physics A-level practicals, as in the UK, lying on the floor because I couldn’t, I couldn’t sit up properly because I had such bad cramps and such heavy bleeding. So yeah, that continued, and the only breaks I’ve had really are where I was on, I had a mirena coil, and when I had my girls.

    Yeah, it’s quite debilitating, it’s expensive, it’s very expensive, because I had a lot of pain with it as well. I’d have 10 day periods with flooding for the first four from the age of 11. That continued all the way through.

    I was at boarding school, but I used to sing in the choir at church, and I’d spend pretty much all the service trying to clean myself up. I would have nausea and vomiting and diarrhoea for the first four days of my period, and really bad cramps.

    I’m allergic to a load of painkillers, so it made it really difficult to manage the pain and the level of bleeding, so I just didn’t really go out for chunks of time like before. But I would lose four to ten days a month where I wasn’t going out.

    I’d end up missing work quite regularly because I’d have big chunks out every month, because I just couldn’t go to work with the diarrhoea and the vomiting and things that went along with the flooding, and the flooding was really hard to manage. I’d have loved a moon cup had I known they existed at the time, the menstrual cups, because that would have been much easier, much easier to contain.

    It always happened at Christmas, so Christmas Day I spent most of my time in bed or on the toilet, just bleeding.

    How to advocate for yourself and seek help

    Yeah, so those are the barriers. It was like getting to see a gynaecologist in the first place and that time for a referral.

    It was really embarrassing. My headmistress rang up my doctor after I’d done one of my practice, after I did my practical lying on the floor because I couldn’t stand up. It was like we had a male biology teacher, and having to just remember, sort of having to try and leave his room to go and change, to go and change, and just that kind of, I couldn’t discuss, you didn’t, you couldn’t discuss that with them to let them know what was going on and how it was impacting you.

    So that kind of impacted on my, yeah, it just impacted on class and school, that impacted on university as well. I think when, when you’re young and things start happening, you do tend to just accept what’s that, accept what’s happening, particularly as, I mean, you may discuss things, you’ve, I mean my friends knew that my periods were awful and that I would bleed because they would be waiting for me and finding more toilet paper and stuff so I could clean myself up.

    Yeah, so I mean, and that’s really hard at sort of 11, 12. And even as an adult, it’s pretty hard and pretty difficult to explain. And there is a bit of, there’s still like a, less so now, but I think there’s still more of a social taboo about talking about it. But yeah, I think things like actually being able to approach someone, not being too nervous to go and talk to a doctor, because that’s pretty hard, and saying it, and you kind of, I think a lot of the time you go with the expectation that you’re going to be dismissed, because that is a lot of the reaction, that, you know, it’s just something you put up with, you know.

    I think that society has changed quite a lot since I was younger, and I think young people tend to be a bit more better of self-advocacy, but even so it’s still that big step of going and seeing somebody and trying to get some approach and finding what is abnormal uterine bleeding, what is it, what does that look like.

    I think the fact that it’s discussed and it’s not just something you have to put up with, it’s not something you just have to go along and do that. I saw the gynaecologist while I was 17. I didn’t see anyone again all the way through because that wasn’t really an option. The only time I saw anyone was when I had my girls, and then later on when I had fibroids and the bleeding from there. But that was a whole 30 odd years. So I think actually standing up and saying actually this isn’t normal, this is experienced by a lot of people, this is not something that should be happening, and actually seeing a doctor and being persistent.

    I just think it’s really important to actually seek help and not just put up with the symptoms, because I know it’s like a male dominated society and, you know, “they’re just women things, women have to get on with it”… Well, that’s not, I don’t think that’s the case. I think people should be able to, yeah, should be able to approach somebody, see what can be done. People are individuals, so what helped me might not necessarily help somebody else. Yeah, but you know, it’s a long time in your life that you have periods.

    Things that have helped me

    I found that sleep and also exercise, just doing exercise actually seemed to help the womb, to the uterus, to lose some of that nice accumulated blood around it. Yeah, I found that was helpful.

    With my own girls I’ve been a lot more kind of proactive and have much more discussions about it and looking at ways to manage it, and also ways of managing the pain that aren’t necessarily just taking painkillers. It’s doing things like breathing and stretches and things that will try and help ease some of the muscle cramps.

    I think at school in New Zealand we’re really lucky. I think a lot of schools have got organisations like VIBE in there where you’ve got sort of people coming in from, from outside, from outside of school who you can go and talk to. They tend to be young people who are in and advocating and discussing stuff. At schools you can get period supplies, which was always a big thing, yeah, yeah.

    So people like, people like Vibe that are in schools are good people to go to, even the school social worker or a school counsellor or teachers that you feel you can talk to, because there are some people that people can just open up to.

    But friends are always useful to kind of get a comparison. You know, like, “mine’s only four days” – “oh really?” So you’ve got friends who are kind of a comparison, and if they’re not putting up with the same things as you are, probably a good indicator that things might not be as quite going as well as possible. I think older siblings, cousins, whānau.

Rahera

“Do your research, hear your body, listen to your body because only you know your body.”

  • What having a period means to me

    Due to being Māori, a period to me is tapu. It’s sacred. It also teaches me that I am a woman and can form another human life. That’s what a period means to me.

    The impact on my life

    Mainly my livelihood.

    When you work for someone of another culture, they don’t understand as a… My boss didn’t understand, because he was a male, that it actually, yeah, it was overbearing sometimes. Like you just feel you had to make up excuses too, you know. You couldn’t say, “Oh, because of my period,” so he wasn’t quite understanding. Mainly my, my, yeah, my livelihood. I wanted to work and I couldn’t do that, couldn’t hold a job really due to my period.

    Yeah, I really didn’t go out, once it became overbearing, it also affected my relationship with my partner, my children, because I was very, very grumpy. I had low energy all the time, and of course if you have low energy, you can’t really focus. You can’t focus on what you’re doing.

    And also it was costly. I mean, you only can rip up so much. Yeah, I stopped the sanitary pads, I never used it because it was just not, it was costly anyway.

    How to advocate for yourself and seek help

    My barriers pertaining to my period was, especially when it came to healthcare, I just felt like I was on dumbfound, like no one was listening. I was just prescribed drugs, give me Panadol, give me Tremadol because of the pain. But it took a long time for my doctor to actually, I actually, sorry, I actually moved from five different corporations pertaining to health.

    So I was just to find that one doctor that could listen. And she was actually from America, and she helped me to get through this. And she was the one that started the ball rolling for me, really, that I wasn’t losing my mind. But yeah, that was the barrier, that no one would listen. None of your GPs.

    And in the end, she told me the truth. All they do is just prescribe drugs, and I just said to her that I just want to be healed so I can have a good relationship with my family, my partner, my children, and also other people in my community, because I was so grumpy. So yeah, that’s, that’s what affected me.

    Yeah, my message to you ladies is to do your research, because you, and hear your body, listen to your body, because only you know your body. And I knew something was not right, and, and be confident when you go and seek a health person. Tell them what you want, because you pay them for service, not the other way around.

    So that was one thing that taught me that I could not live under my shadow anymore, that I had to fight for my life, because I had to, and it took seven years. So yeah, that’s what I need to tell you. Just be strong, and, and be honest with yourself, and look after you.

    Things that have helped me

    Yes, I was asked to do a UB, to insert a contraception, which they said to me. But I didn’t look at it there. I was tired of bleeding nine days of the week. So I got that inserted about four years ago, but unfortunately it got lost. We don’t know where it is.

    So, but what it has done for me, it brought back a life for me. I’ve been without it for three months now. My last period, actually, I was in bed for a couple of days, but I’ve learned to, oh, I’ve learned to just cope with it. Yeah, but it did help me. It helped me for those three years, yeah, of having it in, the bleeding anyway. That’s why I went back to work.

Christine

“I think that we need to stop being quiet about what's going on for us”

  • The impact on my life

    Well since I got my period when I was 13 I almost always bled heavily, and with clots and tons of blood and my periods were also every 21 days instead of 28 days. But there was no one to give me advice… we're talking about 1973 and I also lived in a country area down in Southland. And I complained to my mother about my periods and she said – “that's what we women have to put up with” – and so every 3 weeks I had pain and heavy bleeding.

    The pads we mostly had available then were unreliable at best and I switched to Tampax which back then in the early 70s had just become available so prior to that women had to wear these cloth pads between their legs. Eventually we got adhesive ones but you know when I was 13 wearing a cloth pad, being an active girl - horse riding, swimming, you know living on a farm - it was incredibly inconvenient and uncomfortable and just generally unwelcome 100%.

    And there was no one for me to say look I'm bleeding this much is this good or bad, or right or wrong, or is there something wrong with, me or is this just normal – I had no idea at all of you know what to expect until it happened… And I see my granddaughter age 12 she'll begin menstruating soon and she may have similar difficulties if she's unfortunate.

    For me you know, there was… starting to be this advertising on television where they were showing these girls wearing Tampax and swimming, and all kinds of stuff – horse riding and such, and there was no way that I was feeling anything like exercising, or swimming, or anything else when I had my period.

    It was… so much blood that it was difficult to control. My underwear was always stained – it was just really stressful,  you know especially as your period will start suddenly and you might be – you know doing physical education. And all of a sudden your clothing is flooded with blood – bright red blood too you know, like it's just embarrassing…

    And yeah –– I feel quite emotional about it really… and my daughter had a hard time with her periods as well – and so for you know, she – I remember she was with me when she was 15, and her period started when we were shopping at the Warehouse. And all of a sudden she just went completely white nearly fainted. And you know what can we do to help her, or my granddaughter, or any of the women that suffer like this with their periods?

    You know jobs don't pay any attention to helping girls, and women who have very difficult menstruation… they just ignore it and they expect you to turn up to work anyway. I mean that's one of the good things about Covid, is even if you're really ill with your period you can at least hopefully work from home in many jobs. But in my area that wasn't the case at all and if you lived on a farm like we did, if there was stuff that you had to do on the farm - well you just kind of tried to take a couple of paracetamol and dragged your ass out there and and did it irrespective, but at least you know you had some privacy on the farm.

    Once I had my daughter my parents didn't get any better. So let me see once I went to Otago University and became sexually active, my period - combined with severe seasonal hay fever for which there was no effective medication at the time - meant that I was frequently too sick to work reliably in my holiday jobs when I was at University.

    The pain from my period was frequently so bad that I couldn't move easily - I felt like my pelvis was made of glass, and would shatter inside me. My legs ached, big clots of blood poured out of me, and there was zero I could do about it. Eventually I went on the pill and that at least gave me a break from the 21-day cycle. But even on the pill I've often had heavy painful periods.

    So eventually in 1983 I went off the pill, and got pregnant with my daughter and gave birth vaginally. I then tried a progesterone IUD for contraception, and that caused my daughter to quit breastfeeding. I think the progesterone changed the taste of my milk - which these are all things that people forget, or ignore, or nobody reports them, but they happen to women – especially when you're trying out this new technology.

    After a couple of years when my daughter was I think three years old, I had the IUD removed and started trying to get pregnant again - and I began a long long series of distressing early miscarriages. I never was able to stay pregnant for longer than 10 weeks. And I miscarried one baby at 10 weeks. I had a dilation and curettage after that miscarriage.

    Then later I went for a laparoscopic check - you know with the putting the camera into my abdomen to find out why I was not conceiving. But - they found nothing abnormal ‘allegedly’. I say allegedly because my period pain got worse and worse, and the bleeding was very bad. By the time my daughter was 8 years old I was in crippling pain every 3 weeks… and so much pain that it was making me want to throw up. And we tried every possible kind of painkiller, including anal pessaries - I can't remember what what they were… but that was the most powerful analgesia that the doctor could provide, and nothing touched it at all.

    I would end up having to go to bed for one or two days, maybe 3 days. I'd be in agony, and then all of a sudden - like that!  the pain would stop. It was just weird. And this is a stage in my life where my marriage had broken up, and I was living with a new partner who was very supportive. I wasn't on any contraception at all, and I definitely was not getting pregnant at all.

    So one day (I think my daughter was eight, maybe 9 years old) and I was in so much pain when I picked her up from school, that I could hardly drive my car to take her home. And - I decided I had to go and see a gynaecologist to find out what was really going on with my body. So I went to the best gynaecologist in New Plymouth which I could afford because we had medical insurance… and I will never forget the shock on the face of the gynaecologist. I mean we're talking about a guy who’s in his 50s and had probably seen pretty much everything that could go wrong with women, and he was shocked when he palpated my womb and felt the horrible mess that was growing inside of me.

    So since I was effectively sterile at this point, I decided to have a hysterectomy and kept my ovaries; and the gynaecologist discovered that my pelvis was full of endometriosis, which I'd probably had for a long time which they hadn't seen on the laparoscopy. Why? – I don't know… but you know I can't imagine that in the intervening 3 years I would suddenly go from no endometriosis to having it everywhere in my pelvis. So he carefully cauterised the endometriosis out of my pelvic cavity. My womb was completely compromised with fibroids - and it was probably double or triple the size it should have been, and that's why I couldn't carry a baby to turn him because the growths prevented the baby from implanting. I could get pregnant but the baby could not implant.

    So after that after the age of 33 I didn't have any periods anymore. And I'm glad I had the hysterectomy, because I think if I had not had one I would be dead by now. Women should not be in such pain and agony, and and bleeding to death – which affects their physical health; it affects the health of your children… you know it affects everything about your life. It affects your partner, or husband – men are very supportive I find, but of course they don't know what to do… nobody knows what to do.

    I mean my daughter has troublesome periods. She has had one vaginal birth and one cesarian birth… and she's just on the pill… but she's approaching 40. And can she stay on the pill for the rest of her life? Is she going to get cardiac problems because of being on female hormones? Should she have a hysterectomy? I mean my mother had a hysterectomy and kept her ovaries – she's now 89. I think both of my grandmothers, on my father and mother's side, all had hysterectomies – and those hysterectomies have saved our lives. But is surgery the only option that we have? There's a lot of women who don't want to have surgery. My daughter doesn't want to have surgery. She shouldn't be forced to have surgery, but what other options does she really have, if she wants to live a pain free, haemorrhage free life?

    What were the key barriers?

    Well the key barrier was money, and also finding a GP who would take my health seriously. Well for women who don't have any money I suggest that you start a GoFundMe fund or something else. I think that we need to stop being quiet about what's going on for us.

    The traditional health system in New Zealand is pretty broken at this point, and I think that women need to take a serious look at what's going on for them every month and go “is this how I want to live?” You know, and I mean that's a measure of pathology of any kind of behaviour that's happening - you know… Can I function? Can I live? How is it affecting my family, myself, my partner, my children? If I continue to be disabled by what's happening to me. You need to really ask yourself those questions and say “well if it's not acceptable to me, then let's look at the options”.

    And if you can raise a few thousand dollars for yourself, and get to see as good and experienced a gynaecologist as you can… I mean I don't even know how many gynaecologists we have left in New Zealand, but certainly in private practice you can hire them.

    Things that have helped me

    The things that helped me when I was in severe pain - smoking marijuana would help, although unfortunately THC… my lungs don't cope with me smoking. Eating uh marijuana leaves would help ease the pain quite a lot but I only kind of figured that out very late in the piece, and of course THC products are very hard to get, and expensive.  But they did help me a little bit, but they didn't stop the bleeding.

    I think it was really the only thing that eased the pain - that or being on the pill. And I mean if you're sterile you don't actually want to be on the pill anyway - let's face it - if you can't get pregnant. Maybe we need a female hormone pill that's designed purely and simply for people to control their menstruation, rather than simply control contraception.

    The other thing I think that my family suffer from is low thyroid function. And one of the very neglected – probably purposefully neglected in my personal view – is the fact that women need a lot of iodine for their bodies to function correctly, and also to have healthy children. Women are now getting iodine supplements provided to them when they're pregnant but women actually need iodine all the time. And so I recommend that all women get iodine and take as much of it as you can handle really.

    PMS – premenstrual stress – I have found that for all of my family (including the boys) that if we're feeling really physically and mentally out of sorts then taking evening primrose oil really works well. I call it the grumpy pills. If you're feeling just really horrible, and grumpy and out of sorts, and PMS-ish,  is taking about 4,000 milligrams of evening primrose oil, in whatever way you want to take it – with tablets or putting it in your yogurt, or something, – that has really helped with those kinds of symptoms.

    Again these are a lot of things I discovered after I'd had my hysterectomy, so I haven't been able to test them on myself with having periods. Certainly from a mental health point of view that's been very helpful. Another thing that I think has been used off and on in women's health is Rescue Remedy. Rescue Remedy is extremely good for women feeling distressed – God knows how it works but it seems to work for some people… so much so they actually had it in the maternity hospitals and we're giving it to people.

We are a team of researchers and clinicians for gynaecological health research at the Department of Obstetrics and Gynaecology at the University of Otago Wellington. This information resource has been developed in partnership with our community advisory group with experiences of Abnormal Uterine Bleeding (AUB), and researchers from the Department of Obstetrics and Gynaecology and Reproductive Sciences at Auckland University.

About us

Know your period is a resource for people who think they might be experiencing a period that falls outside of the spectrum of averages. It will help you to explore some of the potential causes of abnormal uterine bleeding and a range of treatments, decide if/when to seek medical advice and how to advocate for yourself in a medical environment. It also provides a perspective from people who have lived experiences with abnormal uterine bleeding.

Our purpose