March 6, 2019

My Life with Endometriosis – Samara’s Story

Samara and Baby Ailani-137

Endometriosis is a condition that takes over the lives of 1 in 10 women in the UK. The condition occurs when cells, such as cells that line the womb are found in other areas of the body. Not only does Endometriosis cause severe pain, it can lead to infertility, fatigue and bowel problems, as well as feelings of isolation and depression.

Wessex Fertility patient Samara has suffered from Endometriosis from the age of 13, but wasn’t diagnosed with stage 4 extensive Endometriosis until over 4 years later. As part of Endometriosis Awareness Week, Samara has bravely shared her experiences with us, in the hope of raising awareness of this life changing condition.

First Symptoms

“I started noticing symptoms when I was about 13. I had not long started my periods and in between my periods I was getting horrendous stomach ache to the point I would be curled in a ball on the sofa and started missing school.

The pains became very regular and I started to suffer with dizzy spells & fainting. I also kept getting urinary tract infections. They were around one every one or two months. I went and saw the doctor and they referred me for an ultrasound and they said there was nothing medically wrong and that this is was normal period pains. Obviously being told this was really hard. When you are so young and in so much pain and missing school it really effects friendships and school work.

Things didn’t get better and I kept going back to the doctors with the same symptoms. They started trying me on different contraception pills from when I was 14. Each pill made me ill. I would either end up fainting while walking down the stairs, being sick or just generally unwell. I was also told that the pills aren’t recommended for someone so young so this could cause fertility issues in the future. That terrified me, but I didn’t know what to do!

Things just gradually got worse and no one would help me. My periods were dreadful. I would go months without having a period and then would spontaneously start and it would last for several weeks. This caused a a lot of anxiety when at school as I never knew if my period was going to start whilst at school or not.

I started suffering with severe depression and anxiety when I was 15. I missed a large amount of school and it really affected my friendships. None of my friends understood what I was going through and I didn’t know what was wrong so I couldn’t even tell them!

I was in so much pain and had such severe anxiety that I had to take Diazepam to go to my 16th Birthday Party and can’t really remember what happened. I ended up having to study for my GCSE’s from home because I couldn’t cope with going to school with the amount of pain, anxiety & extreme tiredness. I was so tired I would fall asleep whilst doing homework and wouldn’t be able to physically get out of bed in the morning.

The pains were so severe that I was on strong painkillers 24/7 and I kept getting UTI’s which made me feel so unwell. I started suffering with sickness and other symptoms and they said I had severe IBS. I would literally be hunched over in excruciating pain and couldn’t move. I was so scared because I didn’t know what was happening.

In August 2017 aged 16, I suddenly collapsed in pain at home. I had the most excruciating pain that I had ever experienced and felt severely sick and honestly thought I was dying. I called an ambulance and they took me to hospital. I was examined and they told me that it was just period pain like I always had and that there was nothing they can do. They booked me in for an ultrasound but wanted to send me home and wait 4 weeks for an ultrasound. I refused to go home as I was in so much pain and not even morphine was helping. They admitted me and the next day did an ultrasound. They said I had a 7cm Endometrial cyst that I was bleeding into and bleeding into my pelvic cavity. They did emergency surgery that day.

After the surgery things still didn’t improve. I went back to the consultant and she told me that I didn’t have endometriosis even though I had an endometrial cyst and that the pain was all in my head. As you can imagine at 16 it completely destroys you. Just when your supposed to be starting college and getting on with life, I was on really strong painkillers, in horrendous pain and in and out of hospital.

Things were so bad and no one would help me. We decided to go up to London and see a top consultant and he was a specialist in Endometriosis and a well known man. I was so hopeful that he was going to help me, but I was wrong. He told me that I was too young to have endometriosis and that I needed to be on painkillers and antidepressants for the rest of my life. That is the last thing you want to hear at 17 years old. I felt absolutely defeated and like giving up.

Diagnosis

But I didn’t give up and I kept searching and I’m so glad I did! In January I saw a consultant from Portsmouth who ran an Endometriosis clinic at the QA. As soon as I met him I knew he would be the one to help me. The first thing he said to me was to get an MRI scan. As soon as he said this I broke down into tears. I was so happy and relieved that for the first time we had a plan!

After having the MRI scan I got a phone call 5 days later saying I needed to come for my follow up. The MRI scan showed that I had stage 4 extensive endometriosis. I had more cysts, Endometriosis on my pelvic wall and stuck to my sides and everything was stuck together. I had it deep seated in my womb and more. He booked me in for Surgery in March. In a weird way I was actually happy. I finally had a diagnosis and we had a plan to try and help.

I had the surgery and have never suffered so much pain after a surgery before. I was told that it would take up to 6 months to see any improvement. My consultant also inserted the Mirena Coil in during surgery to try and keep the endometriosis dormant.

I ended up being on different types of morphine and anti-inflammatory drugs for ages and I was still in awful pain.

After going back and forth to my consultant we realised that the surgery hadn’t improved my symptoms. He said that it can be your hormones that cause you the symptoms rather than the actually endometriosis that has grown.

My next option was to try something called Zoladex injections. It was a monthly injection in my stomach that basically turns off all your hormones. To be honest, I got to the point where I didn’t care what they did. I just needed to be pain free. They said if this works then it is quite possible that a hysterectomy would be my best option. At 17 the last thing you expect to hear is the word hysterectomy. I also knew I wanted children and to know that that could be taken away from me was devastating. But it came to a point where it was either my quality of life or potentially having children in the future. I went ahead with the injections and for the first time I was pain free! But now came some decisions to make.

Fertility and IVF

So long story short, after having many discussions with my consultant and parents, I decided to have IVF with a Donor Sperm as soon as I turned 18. This way I could fulfil my need to have a baby and then if I needed a hysterectomy I would have no regrets.

I started IVF in January 2018 and in October 2018 my beautiful little girl was born.

Samara with baby daugther Ailani

I have had such a hard journey with getting my Endometriosis diagnosed and treated. It is such a horrendous and debilitating condition and there just isn’t enough awareness out there. Although my story has a happy ending, a lot of people’s don’t.

Endometriosis needs to be discussed in schools and for awareness to be more present in everyday life. It needs to be advertised in GP surgeries, Hospitals and on TV. There is help out there, but like my story shows, it can take a long time to find.

No one should have to go through such difficult times at such a young age. Or have to make such difficult decisions before you’re even an adult.”

For more information and support, please visit Endometriosis UK