Light at the Endo the tunnel

Today, I thought I’d share more about my experiences so far whilst trying to work out what’s wrong with me, and one of the best pieces of advice I’ve ever received from a medical professional.

“Don’t take ‘no’ for an answer, you know that there’s something wrong with you, you know that your pain is real.  Stand your ground and make them listen to you”

– A nurse from Guys and St Thomas Hospital walk-in centre

She had no idea how much I needed to hear these words.  Over the past 5 1/2 years I have had countless doctors tell me there’s nothing wrong with me, and that the pain I’m feeling is completely normal.  After all this time, someone didn’t brush off the pain, they listened to me.

My first encounter with what I now know is potentially endometriosis was aged 17.  It was the first time I had ever felt pain this agonising and intense, and I was completely unprepared for it.  Unfortunately, I was standing at the top of the garden steps when this happened, and the pain caused me to faint down the stairs.  Luckily there were only 3 steps otherwise my injuries could have been much worse!  I’ve been left with scars on both of my shins, but apart from some temporary bruising at the time, I came away pretty much unscathed.

Since then I have struggled with period pain, and it has been getting increasingly worse.  I started getting more pain when I wasn’t on my period, and it developed to the point where I spent more of my time with pain rather than without it.  This was the first time I spoke to a doctor about it.  I was 18, and a fresher at university, and I did not have enough courage to stand up to the doctor and say that there was something wrong with me, and that they needed to help me.  Instead, when they said it was just period pain and prescribed ibuprofen I went along with what they said.

During the course of my degree the pain got worse and worse.  It wasn’t just confined to my uterus anymore, I now also had bad lower back pain and hip pain.  I became heavily reliant on my microwaveable heat packs and found them to be much more effective than the ibuprofen suggested by doctors.  I did go back to the doctors as the pain increased and spread during the first and second years of my degree.  I then moved down to London to complete my industrial placement year.  I was having the most amazing time and loving my job (even though I still used my heat packs more than once a day), until my hip pain became unbearable.

In January 2015, the pain in my left hip increased dramatically and I had to go to a walk in centre at Kings College hospital.  By this point, I was so frustrated by the pain and by the lack of help from the doctors that I had turned to doctor Google, and decided to find some potential explanations.  There was only one potential diagnosis that covered every symptom I was currently suffering from: Endometriosis, however I was also open to the possibility that not all of my symptoms were related to the same issue. At this point the symptoms I was experiencing were:

• Severe menstrual cramps

• Severe hip pain

• Severe back pain

• Pain during sex

• Fatigue, this prevented me from doing a lot of things I should have been able to do at 20 years old

• Depression and apathy

I knew that everything I was experiencing was not right, but when speaking to doctors they refused to link my symptoms together.  This led to me being on crutches for 3 weeks after my trip to the walk in, and believing that I had pulled something in my hip. Following the treatment plan did not relieve my hip pain much, however the prescription of Naproxen and Co-codamol did provide relief when the pain was at it’s worst, and allowed me to get off the crutches.

When I went back to university to finish my final year, my depression got much worse.  I think this was because I felt as though, after a year of working, I was going backwards not forwards.  I also found myself getting exhausted with less exertion, and as a 21 year old I found that going on a night out in freshers week would wipe me out for the next two days.  I went back to the doctors multiple times during my final year, and although I suggested Endometriosis to each different doctor I saw, they still said that there was nothing wrong with me.  They blamed my symptoms on a combination of period pain, growing pain (at 21?! really?) and pressure from final year.  I really struggled during this year, because not only did I not want to be in uni (I missed being in London, being able to do all the amazing things in the city, and being with my boyfriend and friends who all live there) but the workload for final year was very intensive.

Despite struggling through final year, I managed to come out of my degree with a 2:1 and secured myself a job before graduating.  I felt so productive, and determined that everything would be much better now that I was moving back to London.  I managed to convince myself that the doctors were right, that there was nothing wrong with me, and all the symptoms previously listed were just my body reacting to stress.  It wasn’t long after moving that I realised the doctors were definitely wrong.

Although my new job was everything I wanted it to be and more, I found that I still had a strong apathy to life and any suggestions my boyfriend and friends had for things to do. I decided it was time to really push the issue with a doctor earlier this year, when my emotions hit an all time low, I had multiple days when I was unable to get out of bed and I was in so much pain that I was unable to go into work.

On Friday 31st March 2017 I went to the walk in centre at Guys and St Thomas’ Hospital (GP appointments are like gold dust! Especially when you’ve just moved, and the GP is taking their time processing your registration with the surgery) and had the most positive medical experience to date.  First I saw the Nurse Practitioner.  I described my symptoms to her, and before I could even suggest Endometriosis, she did it for me.  She then proceeded to tell me to push it with my GP, and make sure that they didn’t brush it under the carpet – as they have a tendency to do this.  I then went to see the walk in GP, who again listened to my symptoms and said he was sure I have Endometriosis.  He then proceeded to tell me all about the different treatment options to keep the pain at bay, and also about the diagnosis procedure.

Although he was unable to refer me to a gynaecologist (this has to be done by my registered GP), he talked me through everything, including what to say at my GP appointment to ensure that they referred me and took my pain seriously.  He also gave me a prescription of Mefenamic Acid to help with the pain.  it was so refreshing to know that I was being taken seriously, and that this wasn’t all in my head.  I have my appointment with my GP to get my referral next week, so fingers crossed I leave this appointment feeling as positive as I did when I left the last one!

(Sorry for rambling on a bit – I promise all my posts won’t be this long!)