Living with endometriosis: Antonia's story

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

I started experiencing symptoms of PCOS (polycystic ovary syndrome) and endometriosis when I started my periods, aged just 11. From day one, my periods and the pain that came with them were awful.

As a young girl having to deal with this was horrible. Simple things like PE classes at school became so difficult, never mind the mood swings and hormones that came with it.

I have visited countless gynaecologists since that age and finally got diagnosed in 2016, aged 26.

How did the symptoms affect you daily?

I had intense pain in my ovaries and abdomen almost constantly as well as a shooting pain down my leg. It was so intense, almost like my body was being strangled.

I couldn’t sit down without pain and I was extremely bloated, I looked like I had a beach ball up my top!

The condition took over my life, I couldn’t do anything I used to be able to do without pain.

Endometriosis is said to be one of the most painful conditions you can have. I have a high pain threshold and I pride myself on being a very strong woman, but even I had very, very dark days.

What ways have you found to cope?

Walking my dogs has been one thing that’s helped me to cope. Before my surgery, I would try to walk them as much as possible, though sometimes the pain and the fatigue meant I just couldn’t.

You have to stay as active as possible. I found that the more I sat and let it take a hold of me, the more it did.

That being said, endometriosis is a very debilitating condition and some days you just have to listen to your body and rest. On those days, I found that a hot bath with some salts always gave me some relief, even if only for a short time.

How has living with endometriosis affected your mental wellbeing?

Mentally, endometriosis really takes its toll. I remember thinking, why me? Haven’t I suffered enough?

People say, ‘everything happens for a reason’, but I still can’t find a reason for any woman to have to suffer from this life-consuming illness.

Mentally, endometriosis really takes its toll. I remember thinking, why me? Haven’t I suffered enough?

I have had horrific days mentally. I have experienced pain and loss and got through it, and I think of myself as mentally very strong, but endometriosis has a way of getting hold of you mentally and physically.

There have been times when I’ve been so riddled with pain and fatigue that I felt like every bit of hope and determination had been drained from me.

I take my hat off to every woman dealing with this condition. You are forced to be so strong just to get through.

What was your journey to diagnosis like?

Frankly the experience was awful. I had appointments with so many doctors, was put on pill after pill. I had blood tests and took iron tablets to compensate for heavy bleeding.

With each new gynaecologist I saw, I remember hoping that the next one would give me a magic pill and everything would be ok, I’d have my life back again.

Endometriosis is a very lonely condition

Sadly, that never happened. I was frequently told I just had bad periods and should just take painkillers and the contraceptive pill. Then I tried the implant, then the injection.

Contraceptive injections stopped my periods but not the pain, and eventually I had to stop having them. I remember feeling like I was losing control all over again. My periods returned and I’d have one every 21 days for 10 to 14 days at a time.

How did you eventually get your diagnosis?

I went to see an amazing gynaecologist called Dr Jones. He really listened and understood me and together we began to try different treatments. When none of these worked, he said he thought it could be endometriosis.

Dr Jones performed a diagnostic laparoscopy and found large amounts of endometriosis. This was my diagnosis, after 15 years of suffering.

I was told I would need surgery, but I put it off for some time because I’d had such a bad experience with hospitals.

My dad died when he was only 47 due to a mistake made during surgery. It was a routine operation, he was awake, but an inexperienced surgeon severed the main artery to his heart, causing him to bleed to death.

As you can imagine, the experience was incredibly traumatic and distressing for me. I had lost my best friend and I had lost my trust in medical professionals.

Luckily, I met Dr Edi-Osagie and everything changed.

What treatment have you had and how was the experience for you?

I have had extensive excision surgery, which was performed by Dr Edi-Osagie and his team.

I went to The Alexandra Hospital and from the moment I walked in everything ran so smoothly. I could not have asked for better. I was informed of everything, treated so well, really looked after. Every need was catered for.

During surgery, I had my pelvic wall removed, cysts removed, endometriosis nodules removed. I had my bowel shaved as there was endometriosis on it.

Endometriosis was also removed from my urethra, my pouch of Douglas (rectouterine pouch), behind my womb and over my ovaries and pelvis. The surgery also involved ovarian drilling to help with my PCOS.

I felt so reassured during my recovery. I remember waking up to a lovely man talking to me. He fetched me a heated blanket because I was shivering, and helped me sip a little water.

Dr Edi-Osagie made me feel safe. After my last experience in a hospital, when I lost my dad, that was exactly what I needed. The team at The Alexandra Hospital did an amazing job and I will forever be thankful.

Why did you decide to be so open about your experience?

I had no one to speak to about endometriosis. It’s a very lonely condition, no one understands it, so many people underestimate it, seeing it just as painful periods. It comes from ignorance, but it’s so, so difficult to deal with.

I have my own Instagram account where I documented everything regarding my operation, even pictures. If you are not too squeamish, take a look!

I wanted to show girls and women like me that there is hope, there is light at the end of the tunnel, you just have to choose your hospital and your clinician wisely. Only settle for the best – what’s best for you. Health is so important. You only get one body and you need to love and care for it.

Do you have any advice for women who have (or think they have) endometriosis?

Get checked and do not stop until you have answers. If you need to, book a private consultation. It is so, so worth it.

Find an amazing surgeon and go and see them, get checked and never ever doubt the power of knowing your own body!