Living with endometriosis: Amanda's story

Amanda was one of the earliest members of National Endometriosis Sufferers Support (NESS), a support group for people living with the condition. NESS has a strong online presence and also organises meet-ups in person.

How long have you been living with the symptoms of endometriosis?

I started my periods at 13 and by 15 I was really suffering. I used to have to leave school as I would regularly pass huge blood clots and the pain was horrendous.

I went to a couple of GPs who didn’t seem concerned. I feel like it was dismissed as ‘normal period pain’. They put me on the pill at 15 and said I would grow out of the heavy periods. I believe I’ve been living with endo since my first period.

What was your journey to diagnosis like?

It took many years to get a diagnosis. The journey was traumatic both physically and mentally.

When I was 28, I got married and decided to come off the contraceptive pill. But when I did, my pain and heavy bleeding became unbearable. I was struggling to work because I was bleeding constantly, flooding and passing massive clots. I was so embarrassed.

I couldn’t seem to get pregnant, which eventually led to further investigation. In August 2010 I had a laparoscopy and it was after this that someone first mentioned the word ‘endometriosis’ to me.

What was your experience when you were first diagnosed?

I had never even heard of endometriosis before and I didn’t even know how to pronounce it – let alone what it was. Yet I was sent home with very little advice.

I had a follow up appointment and my general gynaecologist prescribed me Clomid (clomifene) to try and stimulate ovulation. I fell pregnant, but not long after I felt unwell and had to go into hospital. I then had a hugely upsetting experience as the doctors struggled to locate the pregnancy. 

I was in hospital for a week. By the time they operated on me, my left fallopian tube had ruptured. I lost the pregnancy.

My fallopian tube had to be removed, which massively affected my fertility. I went on to have failed IVF in my early 30s (which I paid for myself). I’ve been advised by a specialist to freeze my eggs, but this is an expensive process and I’m not eligible for NHS funding.

There is a higher chance of ectopic pregnancies with endometriosis, yet in my experience this is very rarely spoken about – women are not always told. I believe I should have been offered an early scan because of this – who knows how differently things could be for me if I had done so?

This is the danger of the lack of awareness. Women aren’t given enough information and it leads to complications and losses that might have been avoided.

10 years after diagnosis, what is it like to live with endometriosis?

People think that endometriosis affects your periods or your ovaries or womb… actually it can affect so much more of your body, from growths on other organs to whole body pain and crippling fatigue.

I work full time for the NHS and can’t afford to go part time, but this means I’m often in a lot of pain while I’m at work.

Endometriosis growths can stick your organs together, and at times my left or right ovary glues to other organs, which means I have difficulty walking. At one point, my endometriosis was so bad that my organs had stuck together to the extent that I was housebound for several months while waiting for an operation.

Since my diagnosis, I have had several surgeries. I’m currently awaiting another laparoscopy in a couple of months. But while you can have surgery for endometriosis, it’s not a cure. Most women who have surgery will – like me – need to have it more than once.

What treatments have you had and what has the experience been like?

My experience hasn’t been a good one. So far I have had seven laparoscopies (keyhole surgeries) and have taken two years of Zoladex (goserelin).

It took me years to discover that not all specialists are trained in excision surgery for endometriosis. My earlier operations were performed by gynaecologists who did not specialise in the condition, who used ablation, which is less effective than excision.

You have to become an advocate for your own health

I now know more about the options and understand about specialist surgeons. My last couple of laparoscopies were performed by trained endometriosis specialists.

It’s so important that women know about their right to be seen by a specialist. Just because you are an NHS patient doesn’t mean you don’t get to choose your consultant.

For my last surgery, I had treatment at The Priory Hospital at The Endometriosis Clinic, a BSGE accredited centre. I had to travel to Birmingham from my home town of York, but I had chosen my consultant based on his extensive experience of excision surgery.

You have to become an advocate for your own health. Many GPs don’t even know about the BSGE (British Society for Gynaecological Endoscopy) website and will just refer you to the local gynaecology department.

For me, getting the right referral was a battle.

How has living with endometriosis affected your mental health?

Endometriosis may be a physical condition, but it really takes its toll mentally.

Despite spending years trying to educate people about endometriosis, I’ve had very little support. It took years to be believed even by medical professionals, let alone friends, partners or even work colleagues.

One time I nearly passed out at work and was told to pull myself together. Another time I did pass out at work and yet friends who were asked to come and check on me never turned up. I think some people thought I was just attention seeking.

I’ve lost many people during my journey due to a lack of understanding, despite the fact I’ve always tried so hard to raise awareness and to explain my condition to people. I’ve had friends vanish just when I needed them most. It’s such an isolating disease.

When I felt my symptoms returning, I would reach out to those close to me to try and explain to them what was happening, but so often I was made to feel that the whole subject was taboo. I was told there was a time and a place for these discussions… but honestly, when is that?

I felt embarrassed and ashamed and like I was a burden to everyone. These days, I keep to myself a lot more.

What made you start reaching out to other sufferers?

At first I tried raising awareness on my personal Facebook, but I received really nasty messages. People said my posts were depressing, or fell out with me because I was posting openly about my periods. This was a few years ago now and it prompted me to look for a safe space to share my experiences online.

The first group I joined was called Endo Revisited UK. It’s run by a woman called Linda Wright who has helped a lot of women over the years. It was being part of groups like this that helped me educate myself and know to ask my GP to refer me to an endometriosis specialist.

I have since joined several other groups, including NESS (National Endometriosis Sufferers Support). NESS was founded by a couple of women in Yorkshire and I was one of the first to join. We meet up in person regularly and are there to support one another. It’s been a life saver.

I’m an admin on a few online support groups and I try to get to the local Endometriosis UK group meetup whenever I can. I do as much to help these support groups as my health will allow. It’s so important to me to help other people, and in my spare time I’ve also trained as a reflexologist to help those in pain.

I’ve been involved in raising over £3,000 for Endometriosis UK. My mum has got involved, too. She organised and led a sponsored yogathon to raise money for the charity.

Do you have any advice for women who have (or think they have) endometriosis? What do you wish you had known at the start of your journey?

My advice would be, reach out to one or more of the support groups. You are not alone.

Your pain is real and knowing that other people believe you and support you is such an important thing to have.

Read as much as you can about the condition and learn from the experience of other sufferers. I wish I had known earlier about BSGE centres and that there are properly trained specialists out there.

The more research you do, the more in control you can feel about your treatment. For example, I was prescribed goserelin for two years but at the time I didn’t know about the potential long-term side effects. It can lower bone density and I don’t know if I would have taken it had I known that.

Do you have any tips for managing the symptoms of endometriosis?

Endometriosis can be different for everyone and you have to learn what works for you. Some things that have helped me deal with my symptoms are:

Check your stress levels

Stress can have a big impact on endometriosis. You might try things like meditation, yoga, massage, reflexology or acupuncture to manage your stress levels.

Eat well and stay hydrated

I try to eat healthy foods and reduce my intake of processed foods. I also make sure to drink lots of water – investing in a good quality water bottle really helps.

Find pain management that works for you

Everyone is different and what works for one person may not work for another, but it’s worth taking the time to find a method of pain management that works for you.

It might be a warm bath, a hot water bottle or an early night. There's also exercise, which releases endorphins; even a short walk could help.

Look after yourself

Never forget that you matter and never underestimate the importance of self-care.

Find a support network

It's so important to have people that fully support you. I found that connecting with people in the same situation, who really understood and related to me, made such a difference.

When you're struggling, know that it's not a weakness to ask for help. It actually shows great strength.

The other important thing to realise about support groups is, you are helping the others just as much as they are helping you. Your journey can help others.

Why is it so important to raise awareness of endometriosis?

Lack of awareness has affected me in so many ways. I had symptoms from 15 yet I wasn’t diagnosed until I was 29.

The time to diagnosis is way too long and lack of understanding is a major reason for this.

I also believe we should be training up more specialists who can perform excision surgery, as well as training non-specialists, GPs and anyone else in the diagnosis journey about how to spot the signs.

At the moment, there is no cure and we still don’t understand what causes endometriosis. Operations often offer just temporary relief, but the earlier you are diagnosed, the better the outlook.

This disease needs to be taken seriously and people need to know it exists.

Women should be taught about the possibility from an early age and it should be considered and tested for more regularly. The fact that it was a ‘women’s issue’, tied to periods, meant I was constantly judged for talking about it and as a result I started keeping quiet.