It takes on average 9 years to be diagnosed with endometriosis in Wales – that’s too long!

#walkforendo is all about walking in solidarity for those with #endometriosis who wait an average of 9 years for a diagnosis. This is too long, and together, we can and WILL turn this around.

Last year, with the help of family and friends, I walked 100 miles in 40 days (averaging around 17km a week to reflect the 17 years it took to get my endometriosis diagnosis). 

This year, as the waiting time for diagnosis is increasing thanks to Covid, it's only right that I increase my challenge..... 

…Which means I am aiming to walk 170 miles between 1st July and 1st September (62 days)!! (Which according to Google Maps is the equivalent of walking from Barry Island to the Great Orme).

Here is my story....

From my first period (aged 14) I knew something wasn’t quite right. I seemed to be in more pain than my friends but just figured that everyone was different. My monthly cramps would radiate from my lower ribs down to my knees and my periods were really heavy. I would have to use at least two sanitary pads at night, otherwise I (and the bed) would end up covered in blood.

I rarely went to the GP and age 17, I happened to be at my local GP for something else – I think I had glandular fever at the time. I mentioned my heavy periods and he recommended I go on the pill, so I was put on Microgynon to reduce the length and flow of my periods.

One night (age 18 or 19) I was taken to the local hospital as I physically couldn’t stand up due to the pain. They mentioned ‘ectopic pregnancy’ and ‘appendicitis’ but ruled both of those out and sent me home with some ibuprofen.

From age 20, the pain became more of an issue (even though I was still on Microgynon). My colleagues persuaded me to go and see a female doctor in the local surgery as she may be more understanding. This I did, but was told “you’re a woman, you will just have to learn to live with it and get on with your life”. She showed no sympathy or understanding whatsoever. I gave up and just carried on with Microgynon (I was on that pill for 13 years).

It was my current partner who said: “This isn’t normal you need to get yourself checked out”. So 15 years after my first painful period I went back to the GP.

I ended up having an appointment with a doctor I had not seen before. He was really understanding and after listing all of my symptoms he said “you may have something like endometriosis”. He switched me to a lower dose pill (Loestrin), prescribed Mefanamic Acid to help with any pain and asked me to see how I got on with that for a while and if it didn’t help he would refer me to a specialist. After about a year on Loestrin (which helped slightly) I read an article about women and their experiences of Endometriosis, it was this that prompted me to go back and see him.

I was referred to a consultant and in that first appointment he said “I am 99% sure you have Endometriosis- I will get you added to my surgery waiting list and we will perform a diagnostic laparoscopy”.

After 17 years of suffering in relative silence I had the operation in August 2016 and Endometriosis was officially diagnosed. I was approaching my 31st birthday.

Unfortunately, as the Endo was only burned away, some was left and the pain came back to the same levels as before. Three years later (in May 2019) I had to have another operation. It was here I was diagnosed with Stage 4 Endometriosis (my one ovary is stuck to my bowel and the other folded over and stuck to my uterus) and was referred to the Cardiff BSGE centre.

In order to get my referral accepted my gynae had to take photos as evidence of the extent of my disease. Following an appointment in Cardiff Jan 2020, I was put on the waiting list for excision surgery. Unfortunately, thanks to Covid, the centre has not been able to perform surgery, and over a year after I should have had my operation, I am still waiting.... I have an outpatients appt with them in July. 

In the meantime, I was on monthly Prostap injections which put you in a medical menopause for a total of 21months. I had all the lovely menopause side effects from the injections including hot flushes, hair loss, weight gain and achy joints, but when the side effects outweighed the benefits I stopped those last summer.

Fingers crossed my appointment in July will be to restart the pre-op process and get surgery going again..... But I will have to wait and see. 

One good thing has come from my diagnosis, I volunteer as the Endometriosis UK Mid Wales Support Group Leader and Campaigns and Social Media Volunteer for Wales. If you or anyone you know suffers from symptoms of endometriosis or has been diagnosed and are looking for help and support please visit our page to find out more: https://www.endometriosis-uk.org/support-group/52618

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