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Inspiring Interview: Amber


 

Q: Tell us about you?
What health conditions do you have and how have they affected your life?

From a young age, I suffered with my periods. Each month my Mum would receive a call from my school asking to collect me because I was in debilitating pain. After missing so much school, my Mum decided to book me in to see my GP. At just 14 I was put on the contraceptive pill to "manage my periods" - Little did I know this would only mask everything for years.


I decided to come off the pill when I was 19 having been on it for so many consecutive years. I became pregnant when I was 20 with our miracle little boy & had a happy pregnancy.



After my son was born & my periods returned, they became increasingly painful, however each time I raised this with my GP at that time she would tell me that "some cope better than others" and I just supposed she was right.

Just before our son turned two, we decided to try for a second baby to complete our family. I fell pregnant within a few months of trying. When I was around 8 weeks pregnant, I was brought to my knees with pain; a pain I'll never forget.

My husband rushed me to A&E where I had blood tests that showed my HCG Levels were still high & I was booked in for an emergency scan. We were hopeful, desperately hopeful, only to be told our baby had passed away when we went for our scan. Our hearts were broken.


Once we felt ready, we decided to try again, however after almost 9 years of trying we are still yet to find our rainbow. Numerous Doctors over the years have told me that it is by miracle that I fell pregnant on both occasions & carried our son full-term; when I call him our little miracle it's because he truly is.

My periods continued to be horrific; heavy with large clots & significant pain in my right side & lower back in particular. I fought for years to be heard & was finally sent for an internal scan in 2017 & referred to the gynaecology department where I was booked in for a Laparoscopy.

Here my Consultant found severe Endometriosis. As frightened as I was, I was so relieved to no longer feel like I was going mad. However, I was naïve to think that this surgery meant I was somehow cured, unaware at this point that Endometriosis is incurable & can only be managed.

Six years on and I have since had three more surgeries to treat Endometriosis, losing my right ovary in the process. I am currently on my Consultant's waiting list for my fifth major operation.

After my third operation in 2020, I began to experience widespread pain throughout my body; everywhere feels bruised & sensitive to touch (even clothes touching my skin!).

I was referred to the Pain Management Team who, after several tests, recently diagnosed me with Fibromyalgia.


Aware that I have high anxiety which can in turn affect the central nervous system & consequently add to this pain, I decided to start Cognitive Behavioural Therapy to help me find techniques to manage my worries in the hope that this will contribute to managing my pain.

 

If you're interested in learning more about Ava's diagnosis' please click the boxes below for further information:


Endometriosis

Endometriosis is a condition where tissue similar to the lining of the womb grows in other places, such as the ovaries and fallopian tubes.


Click Here

Fibromyalgia

 


Q: What has been your biggest challenge, or hardest thing you have had to come to terms with, since your diagnosis?

My biggest challenge has been feeling the need to justify my illness.


Despite the scars, both Endometriosis and fibromyalgia are invisible illnesses (invisible unless you look close enough!).



There was a time when I was honest with my family & closest friends, however, it wasn't long before I started to notice the eye rolls or sympathy (but unsympathetic) hugs. I felt like a burden, so I decided it was easier to smile, pretend, & make my circle small.

I am often guilty of walking around with a smile on my face despite how bad of a night I may have had or the pain I'm suffering. It's often easier & I've perfected my mask.



 

Q: Despite your challenges, what keeps you going and brings you joy?

My husband & our little boy - They are my reason for everything & bring me the most joy.


I love reading; it's one of the only times I completely switch off from my own life & fall into the character in the book I'm reading.


I love swimming; it's one of the only times I feel almost pain-free.


I love being outside; there is something about the sound of natures music - the waves crashing against the rocks & the leaves crunching under my boots.




It's these un-materialistic little things that bring me the most joy; life is for living, in whatever way you can best.

 

Q: What is an achievement your most proud of since being diagnosed?

In 2020 I underwent three major operations in the space of 11 months to treat Endometriosis.


Despite my workplace at the time being incredibly supportive, I was more concerned about not letting them down than I was focusing on my health so I decided to give my job up.

I instead found a job that enabled me to work from home which was great for me physically, however it had a big impact on my mental health where I soon struggled to leave the house at all unless I was with my husband.


This year, a job opportunity came my way and I decided to apply for the position. I never believed I would be asked to interview, let alone be given the job. I excitedly accepted the job, only to then be told that I required further surgery...I guessed it just wasn't meant to be.


I went in to speak to my new workplace and apologised, explaining I'd have to refuse the offer. They asked me why and I was completely transparent, to which they replied "we will fully support you if you wish to still join us". I cried on the spot, I couldn't imagine someone having that much faith in me.


This has been a huge achievement for me. I not only overcame my fear of something new, but I also challenged my anxiety by being completely open & honest about my condition.

 

Q: If you could write a note/small letter giving advice and hope to your past self, what would it say?

Hey you. Don't give up, OK?


I can't promise it gets better, but you fight - Stand strong & advocate for yourself.

Keep your circle small. You don't need to justify yourself to anyone; those who truly care will see - Your illness isn't invisible, not if they look close enough.

Wear your scars proudly; they tell your story of how incredibly brave you are & will continue to be.

Understand that you can have a kind, soft heart & not be deemed as weak; saying no to protect your own peace is absolutely OK.

While your illness may feel like it dictates every aspect of your life, it does not define you - You are you.

You are loved so incredibly much; don't ever forget that.

Be gentle with yourself, always.















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