The Gazette's Chief Reporter talks about endometriosis during national awareness week

WHEN I was diagnosed with endometriosis last July, I was shocked to discover that one in 10 women suffers from the condition.

Although I had heard of it, I knew very little about the illness or its symptoms.

Looking back, I realise that I first visited the doctor eight years ago with symptoms of what I now know were endometriosis.

And unfortunately I’m not the exception.

It currently takes on average seven-and-a-half years to diagnose endometriosis, and part of that reason is because people are embarrassed to talk about it.

The charity Endometriosis UK has launched artwork during the awareness week with the slogan It’s ok to talk. Period.

I have been on a mission since my diagnosis to raise awareness, with the hope that other women in the future won’t have to face the long and frustrating wait that I did to find out what was wrong.

I also want people to know how this illness is affecting my life, and hopefully give other women the courage to speak out.

If I came into work with my leg in a cast, everyone would automatically know what was wrong and the struggles I might be facing on a day-to-day basis.

With endometriosis, no one has a clue, unless I tell them.

I still look normal, if maybe a little more tired.

I can laugh and walk about, and put on a brave face.

Telling people what’s wrong is very hard – no one wants to feel like they are wallowing in self-pity or moaning constantly, and many of the symptoms associated with endometriosis, such as painful, heavy periods, pain during sex, fertility problems, painful bowel movements, fatigue and pelvic pain aren’t exactly easy to talk about.

But I’ve tried to be as open as possible about what I’m going through, without going into too much of the gory detail!

The illness has affected me so severely since last year that I’ve had to cut back on every aspect of my life.

Each day is a careful calculation whereby I have to use my time wisely to ensure I have enough energy to get through to the end of the day, or week.

If there’s anything extra that needs to be done, then I have to build in time to sleep during the day, or catch up the following day.

To start with, I didn’t manage things very well because I desperately wanted to keep doing everything I would normally do.

I was determined not to let it beat me.

But I soon realised that this wasn’t working, and half way through the week I was forced to give in because the pain and fatigue were too bad.

My weekends were spent in bed, or curled up on the sofa, trying to prepare my body to return to work on the Monday.

I’ve had to learn to accept that, at the moment, my life is somewhat on hold and I need to be kind to myself and let go of the guilt I feel at letting people down.

The pain, on occasions, has left me breathless, doubled over in agony, and the only relief has been in the form of morphine, which then leaves you in a state of drowsiness, incapable of doing very much at all.

On other days, it’s a constant ache, dragging me down and totally consuming me.

Some days it’s a dull ache, and much more manageable.

But it’s almost constantly there.

Most people can deal with a pain that they know is temporary, such as toothache.

You know it will pass and can therefore tolerate it for a short period of time. But when you don’t know if or when the pain will subside, if it never completely subsides, it becomes a huge struggle, mentally and physically.

Fighting the pain makes you more tired, because it takes up so much of your energy. It becomes a vicious circle, and the only way to break it is to give in.

I’ve had to allow my body the time it needs to rest so I have the energy to continue fighting the pain each day.

When I was diagnosed with endometriosis, I thought half the battle was over because I finally knew what was wrong.

I thought I would be able to have an operation to have it removed and move on with my life.

I was very wrong.

Endometriosis is incurable, and can be very difficult and complicated to treat.

Many treatments are aimed at improving symptoms, but often have terrible side-effects which, for some, can be worse than the pain of the endometriosis.

The lack of understanding about endometriosis, and how best to treat it, is shocking.

There is a severe lack of specialists to properly treat the condition, or remove it through surgery.

Many women are travelling miles to see someone with the expert knowledge or skills needed to treat the condition, or simply aren’t being referred to a specialist at all.

Then there is the pain - no one seems to take pain seriously and I’ve had to make numerous visits to my doctors before being prescribed adequate pain relief.

Yet there is evidence to show that pain left untreated could eventually become neuropathic, making it even harder to manage.

Endometriosis UK has started a petition calling on the Government to discuss endometriosis in parliament.

The charity wants reduced time to diagnosis, have better education for GPs, nurses and other medical professionals, a framework for appropriate treatment plans, and reduced waiting times to see gynaecologists.

Hopefully this week more people will become aware of the condition and sign this petition, because it could be the breakthrough needed to really improve the lives of women with the illness.

I hope the awareness week will also give other women the courage to speak out about endometriosis, because only then can the appalling length of time it takes to receive a diagnosis ever be reduced.

We really do need to talk about endometriosis. Period.

To sign the petition click here. 

To find out more about endometriosis and its symptoms click here.