I was recently diagnosed with Premature Ovarian Insufficiency, and I have to say, even with my training as a GP and women’s health specialist, I didn’t know much about this condition.
It’s safe to say that it has been a massive learning curve and a higly emotional journey.
And it’s not quite over for me yet…
So in this article, I want to help you to understand this often little known condition to help you navigate this too.
What Is Premature Ovarian Insufficiency?
Premature or Primary Ovarian Insufficiency is a term that describes an earlier than normal slow-down in the function of the ovaries that starts under the age of 40 years old. It can also be known as “early menopause”, “premature ovarian failure” or “premature ovarian ageing” but these terms are no longer used because they don’t accurately or sensitively describe what is actually going on in a woman’s body.
I quite agree- I hate the term ovarian “failure”, like my body has done something wrong!
What is the difference between early menopause and premature ovarian failure?
The global mean age of menopause is around 48.8 years. It’s a natural stage of a woman’s reproductive life when her periods slowly come to a stop. Menopause is diagnosed when 12 months have passed without a period. However, with POI, the process starts much earlier.
Hormone fluctuations in POI are more erratic and unpredictable. This means that some months hormone levels may be better than others, and it has been reported that 5-10% of women with POI can become pregnant spontaneously which makes this different to natural menopause.
How Common Is Premature Ovarian Insufficiency?
It has been reported that it affects around 1% of women under the age of 40 and 0.1% of women under the age of 30.
In other words – 1 in 100 women under 40, 1 in 100o women under 30 and 1 in 10,000 women under 20.
So it’s quite common, but still very poorly understood by many health professionals.
How Do I Know If I Have Premature Ovarian Insufficiency?
It’s important to keep a record of when your periods happen, because it can tell a lot about your body’s health and is often one of the first signs of POI.
Apps like Flo can be helpful for this.
If you’re under the age of 40, and your periods start to change to what you’re used to (e.g. go on for too long, start early, come late or become really light or really heavy), then it could be a sign of POI. There are many reasons why your period might change, so it’s always worth discussing it with your GP.
Period changes are usually the first sign of a problem.
Some women also have menopausal symptoms. These include, but are not limited to:
- Hot flushes and night sweats
- Forgetfulness and memory problems
- Confusion/brain fog (a sense of not being able to fully concentrate)
- Aches and pains in the joints
- Sleeping difficulties
- Frequent urinary tract infections (UTIs)
- Loss of normal vaginal discharge
- Painful intercourse due to vaginal dryness
What Causes Premature Ovarian Insufficiency?
Sadly, at this time, for 90% of women, we just don’t know why this happens. I sincerely hope that in time, this won’t be the case and we’ll have some way of identifying and treating this condition.
These are some of the known causes of POI:
Illness and medical intervention
Getting cancer is a huge shock. First you have to take in the news of the diagnosis and treatments, and then, for women who are still fertile, they also have to quickly make a decision about their fertility.
This might be a decision that has to take place many years before a woman is ready to make decisions about having a family.
Common treatments for cancer like chemotherapy destroy fast-growing and changing cells in the body which is great for cancer cells but not for healthy cells that also happen to be fast growing. This is why it causes hair loss and symptoms like diarrhoea and vomiting. It also destroys the follicles (that eventually become fully functioning eggs) in the ovaries, so before starting treatment, steps need to be taken to try and preserve the follicles.
The effect of treatment can be temporary or permanent. It depends on the kind of treatment being given, so it is always worth asking this question before starting any treatment.
Autoimmune diseases are those which are caused by the body turning on itself. In the case of POI, autoimmune ovarian damage is caused by changes in the cells in the body that fight infection. It can also be linked to over autoimmune conditions that affect other areas of the body such as coeliac disease, type 1 diabetes and addison’s disease.
Certain infections are linked to POI, including mumps, tuberculosis and malaria. Mumps can cause oophoritis which can have an impact on the follicles. While this is a very unusual cause of POI, it’s still worth making sure your MMR vaccinations are up to date. Having mumps is no fun (I can tell you that from experience), and having two doses of the MMR jab can stop it from happening. There is a TB vaccination, but this isn’t universally given to babies unless they live in a high risk area or with a family at high risk.
There are some genetic conditions that cause premature ovarian insufficiency, such as Turner syndrome and problems with the x-chromosome.
Is There a Blood Test to Diagnose Primary Ovarian Insufficiency?
POI is diagnosed when a woman has had no period or irregular periods for at least 4 months, and has a menopausal range FSH (follicular stimulating hormone) blood test on 2 occasions more than 4-6 weeks apart.
The FSH Blood Test
FSH is a hormone that is released from the pituitary gland in the brain which stimulates the ovaries to develop your eggs to fully functioning and ready to make a baby. When there are enough eggs, there is a good amount of oestrogen in the blood which feeds back to the brain and keeps the FSH level in the blood low.
However, as the number of eggs declines, so does the oestrogen in your blood, causing the brain to produce more and more FSH to try and keep your body in balance. FSH levels naturally fluctuate in normal menstrual cycles, but a level over 25-30 IU/L is considered to be a menopausal range.
Blood Tests to Find Out Causes
This is likely not something your GP will be able to organise for, so once you have had your FSH levels checked and confirmed, ask for a referral to a menopause specialist, or an endocrinologist, or a gynaecologist. These doctors should be able to organise for further tests to see if a cause can be found. This should include karyotyping (to look for a genetic problem) and anti-thyroid and anti-adrenal antibodies.
Essential Blood Tests to Check Your General Health Checks
Lack of adequate levels of oestrogen in your body take it’s toll on your bones. We need oestrogen to keep our bones strong, so low levels of oestrogen can lead to osteoporosis (thin bones that easily break). It is important to make sure you are on treatment with HRT as soon as possible to slow this process down. So once the diagnosis has been made, other tests that your specialist or your GP need to organise into include vitamin D levels and a DEXA scan. This is so that they know where your bone health is starting from and can initiate additional treatments to keep your bones healthy, if and when required.
How is Premature Ovarian Insufficiency Treated?
The mainstay of treatment is HRT. Every woman diagnosed with premature ovarian insufficiency needs to be on HRT. Often, doses of hormones will need to be much higher than the standard doses given to women going through a later, natural menopause, which is why it is important to seek help from a specialist ASAP.
If you have a womb, you will need combinations of oestrogen and progesterone. If you don’t have a womb, then oestrogen on it’s own is enough.
There are lots of ways HRT can be given, such as the contraceptive pill, patches, gels, sprays or HRT pills. Everyone is different, so it might take a few tries of different things before you know what is right for you.
While HRT is the main treatment, it can’t hurt to look at your diet. A healthy, balanced diet with everything in moderation is the best advice. Reducing alcohol intake can be helpful for reducing hot flushes. Reducing caffeine can also help.
The general advice is to stop smoking and ensure that you are exercising regularly. A suggested regime is 150 minutes of cardiovascular exercise per week and an additional 2x sessions of strength training to help your bones to stay strong.
There isn’t anything you can take to help reverse POI, but there is a lot you can do to help keep your body healthy overall. Taking Vitamin D and Calcium supplements is an excellent way to keep your bones healthy. Aim for 800-1000 IU of vitamin D per day and 1000-1500mg calcium per day.
Can You Get Pregnant With Premature Ovarian Insufficiency?
5-10% of women are said to be able to get pregnant spontaneously. Talk to your specialist about contraception if you don’t wish to get pregnant. As I said before, POI is a different process to menopause, so never assume your can’t have children unless you have been explicitly told by a specialist that you can’t after being thoroughly tested.
IVF with or without donor eggs
Everyone is different, so to have an idea of your personal options, it’s best to consult with a fertility specialist for advice. Often, women with POI don’t have enough follicles to produce eggs, so a donated egg and IVF will be the treatment required to have a baby.
If you have POI caused by a medical treatment like chemotherapy, then hopefully before starting, you would have been given the option to preserve your ovarian tissue or eggs and would be in a position to try for a baby using IVF and your own eggs.
If you don’t like the idea of IVF, adoption might be something you could consider. Adoption agencies across the country often hold webiniar events to walk you through the process of how to apply and what it involves, so it’s worth exploring your local services to find out what is available.
Positively child free
You might decide that given everything you’ve been through, you’d prefer to stay child free, and that’s ok. I’ve decided to do this, and while I’m still not quite over what’s happened (I don’t think I ever will be), I can at least do my bit to help others in the same situation as me.
It’s ok if you find it hard when friends announce new babies, or when someone insensitively asks you when you’re having kids. Having counselling might be something you could explore to work through this.
Where To Get Help
Step 1 – Your GP
The first port of call is your GP. If your periods haven’t started, or have changed, or you are struggling to get pregnant, it’s important to ask to be tested. Ask for an FSH blood test to find out if your level is high. If it is, especially if it is >25 IU/L, then you need another one 4-6 weeks later.
Step 2 – Specialist Care
Once the diagnosis has been made, or if there is a suspicion but you don’t quite meet the criteria, ask for a referral to a specialist premature menopause service.
Step 3 – HRT
Any woman with POI needs to start HRT, and then once on it, they need to aim for oestrodiol levels of >400 pg/ml so blood tests need to be taken regularly (every year unless the specialist says otherwise) to keep the levels in this range. You will also need an annual blood pressure check while on HRT and this can be done at your GP surgery.
Step 4 – Get Support
While I have put this as step 4, it doesn’t have to be the last thing that is done. You’ll likely have LOADS of questions, so plug into The Daisy Network early on in the process. They have a supportive facebook group and online chat-doctor to help answer your questions plus can offer you mental health support too.
Having a diagnosis of POI has been a huge shock. It has taken a big toll on my mental health, and I’m not out the other side yet. I still have a long way to go to getting the treatment and investigations I need. We’ve chosen to be positively childfree, but i’m still grieving, especially after having a miscarriage and now finding out we can’t have biological children. It’s heartbreaking to say the least.
It wasn’t a diagnosis I, or anyone else was expecting, and it’s even more scary knowing that it is so little understood by many healthcare professionals. I’m a doctor of many years of experience, and I didn’t know what this was! So if you’re struggling for help with this, insist on an urgent referral to a menopause specialist. This way, at least you will be in touch with someone who knows about the condition and how to treat you properly. And use The Daisy Network – their support is invaluable.
“The Daisy Network is the only UK registered charity for women who have experienced POI and provides its members with information, advice and support.”
Until next time,
P.S. if you’re based in or near Milton Keynes and you’re looking for a women’s only GP service, sign up to the waiting list to be the first to find out when it opens.