Painful periods? You may have this common chronic illness.

I will start by saying I am based in the UK and I am talking about the NHS, their practices and the best ways (in my experience) to get help.

Endometriosis affects 1 in 10 women around the world, it is considered one of the top 20 most painful conditions and it takes between 7 and 10 years to diagnose. There is little to no awareness of it, even within the health care profession and you are better off taking your own research into the doctors and telling them what you think you have than relying on their medical opinion. Yes, it really is that bad.

Symptoms can be wide ranging and are not all present in each case.

Symptoms:

1. Pain. It can be experienced throughout your cycle but it is usually considerably worse during your period and/or ovulation. This pain is not helped by paracetomal or ibuprofen.

2. Fatigue. It varies from person to person but I experience severe fatigue. I want to sleep constantly and I never wake up feeling better. Again, this can be worse around your period or ovulation.

3. Prolonged or heavy bleeding.

4. Issues emptying your bladder or bowels (not always present). Do you feel like you can't empty your bladder fully? Do you have problems with your bowels? You may have even been diagnosed (or misdiagnosed) with IBS.

5. Nausea (not always present). Do you have waves of nausea?

You may have already been to the doctors and been told that these are normal. I was told "Painful periods are normal, go home and take some paracetomal". At this point I was bleeding through both a tampon and a post-partum sanitary towel in an hour. I had to be admitted to hospital for blood transplants because I became so anemic due to blood loss.

What should you do?

Well here is one of my top tips, one of the ladies on my endometriosis support group recommended this and it helps. Say the following to the doctor you see: "I would like you to write on my medical records exactly what you have just said and that you are refusing me treatment". Just watch how they rapidly back track and suddently become helpful.

If they do write that on your medical records and you see a private doctor and get diagnosed, you can sue them for the cost.

Failing that, see someone else and keep pushing for a referal to a gynacologist.

Whilst you are waiting for that referal you are going to keep a Symptoms Diary. It doesn't need to be elaborate, it just needs to state what you are experiencing (no matter how insignificant it may seem) and the date. You will take this with you to your appointment.

IF YOU ARE IN LOTS OF PAIN, PUSH FOR BETTER PAINKILLERS. The only thing that helps for me is Tramadol.

You may be sent for an ultrasound or a transvaginal ultrasound. The doctors will try and dismiss you if they can't see anything. Most of the time, endometriosis cannot be diagnosed through an ultrasound (transvaginal or otherwise). The most effective scan they can use is an MRI and even then, it is likely to miss it.

When your referal letter comes through, don't just pick the closest hospital. All gynecologists were NOT made equal. In the UK you want to be reffered to a hospital with BSGE specialists (the people that specialise in endometriosis). I have to travel over an hour away to see mine, despite being offered several closer hospitals. I am extremely glad I made that decision.

Do not accept these answers when you get there because they are myths:

1. Pregnancy is not a cure, it stops the endometriosis growing for a short while and then afterwards it will continue to grow.

2. The pill/coil are not cures but they can help.

3. Hysterectomies are not cures. Though they limit growth massively because they remove the hormones the endometriosis feeds on.

4. Laprascopic surgery is not a cure but it will buy you a few (hopefully) pain free years. Excision surgery is considered the gold standard, not ablation.

If you are just starting this journey then I wish you the best. If you are already far into it then I wish you lots of pain free days.

*I am not a medical professional, I have this condition and I am very well informed. I take no responsibility for any outcome.*