Getting a diagnosis...

I don’t know about you ladies, but I am fed up. I am extremely fed up of the fact that as women, we have to research our own health and come armed with explanations for our health when we go to see a Doctor to start our path to receiving an official diagnosis. I am fed up that because we are women, there is a level that we aren’t taken seriously and are dismissed as ‘just being women’, ‘women’s issues’ and it needs to be taken seriously, something needs to change!

I was seen by multiple doctors across the years and they dismissed my symptoms as being a woman and just trying to do too much. I was put on the hormonal contraceptive pill at the age of 14 due to extremely heavy and painful periods and have been on hormones ever since. I do not know how my body works by itself and that has really started to worry me recently. I have read multiple studies that this won’t affect me in future, but at the same time, I have also read other studies that say completely the opposite – that it can alter the way my body should naturally react to things. I will be investigating this in further detail and writing up my research in a later article. Personally, I just want to live more holistically and naturally, not relying on synthetic hormones constantly, but that’s my personal choice. Anyway, I digress, back onto diagnosis and my own journey to achieving an official diagnosis…

My pain got worse and worse until I was 24 and had just got back from a year in Canada. I went to my Doctor and he said he was going to start tests for Endometriosis, he is the first person who told me about this condition and I was shocked – I had never even heard of it!

I finally felt hope that there could be an explanation, the problem was I was moving up North the following week so wouldn’t be able to start tests in my hometown. I did however start my own research journey and went DEEP into rabbit holes!

I moved up North and was hopeful, that now I knew of this condition in a lot more depth that I would be able to join a Doctor’s surgery and could pick up where I had left off down south - Oh how I was wrong! Cue losing my records etc and many, many painful phone calls with multiple people. At this point, the pain had gotten a lot worse and I was regularly unable to sleep, calling in sick to work and making excuses to get out of social events. I wasn’t in pain every day, probably every 3 days, for around 24 hours was when it was really bad. I kept going to the Doctors with numerous symptoms – fatigue, constipation, painful sex, horrific cramps etc and kept saying that my old Doctor thought it could be Endometriosis and they laughed at me many times, even when I went in in floods of tears, begging for help. I went back to male and female doctors to see if that helped and still had the same reaction:

'this is just being a woman', 'you're tired because you're trying to go to the gym and maintain a full-time job', 'it's IBS', 'it's gluten intolerance' 'maybe it's because of the weather' ‘You’re just doing too much’ – ironically, this had been the slowest my life had been!

I kept fighting to get tests taken and again they kept coming back normal. I went into a very dark space and had some very dark thoughts as I just wanted it to stop. I genuinely believed it was all in my head and thought I was going crazy, I remember just sitting on my bed crying to my boyfriend saying ‘It must be me, it must be all in my head’. This was hard for him to watch, unable to take the pain away.

I then got very lucky when my parents moved up here and we moved in with them. I signed up to their Doctor and at the time I had recently just had the coil inserted. Jesus – I actually thought that the coil was digging a hole in my insides, the pain was so bad I felt like I was going to pass out! I called the Doctors for an emergency appointment, they said they had one in half hour and I ran out of work! I walked into her office, described the pain I was in on a daily basis, how much it was ruining my life and she said yep, I think it’s endo. She then kickstarted my journey to get surgery for it. A year on and I was lucky enough to be under the care of an excellent gyno who performed excision surgery via laparoscopy in August 2019 and removed the endo from my left ovary. Once I came around he also informed me that due to how inflamed the womb looked, he said it shows Adenomyosis, but that I shouldn’t worry as my fertility still seems to be great. I know how lucky I am that I was able to have my endo removed very early on and my heart goes out to all of you who have struggled for so long and suffer which much bigger complications.

My diagnosis journey took me down a very dark path. I was appalled at the treatment that I got because I was a woman and the mental toll it took on me, making me think I was going crazy is not OK. I know it is a very small minority who do, and I appreciate Doctors and NHS staff are overworked, underpaid and crazy busy, with 10 mins per patient, but putting people’s health – predominantly mental health – at such risk really doesn’t sit well with me. I feel that each doctor’s surgery should have a women’s health professional in their ranks, someone who has specifically trained in the minefield that is our bodies. I know this is all a dream, but how great would that be?! To actually laugh at someone who is in pain and knows that something is not right (no one knows you better than yourself!) I think is unacceptable. I have heard from many people who say they are embarrassed to go to the Doctor's as they have had a bad experience that was written off as 'being a woman.' I am a relatively strong person, but what if I wasn’t? What if I had a history of mental health? What if this pushed me over the edge along with the pain? I have read stories where women have been searching for a diagnosis for so long, have been in pain for so long, have been made out to feel like it’s in their head for so long that they have sadly taken their own lives. We’re living in the 21st century – this should not still be happening!!!

Unfortunately, the stats are horrible – an average of 7-11 years for a woman to be diagnosed with endometriosis, 50% of women who have PCOS aren’t being diagnosed and many other conditions are being diagnosed as others, such as IBS – it’s just because the symptoms are similar. We need more women’s health specialists in the world. There has to be a way for this to change and I am all about this website being a platform for women to share their stories, to make a change and if anyone is a trailblazer, who is involved in research about solutions for women’s health diagnosis – please do get in touch – we’d really love to hear from you all!!!

What’s your diagnosis story? Are you still searching for one? Please comment below or message us directly – we love to hear from you all x

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