3 years ago, despite struggling to gain weight my whole childhood/teenage years due to a fast metabolism/genetics I randomly gained a lot of weight and my stomach swelled. I was only 19. This was just before COVID-19 and as it started and I tried everything I could to get help as I knew it was abnormal. It didn’t matter what I ate or didn’t eat my stomach was huge and distended all the time. I felt like I was in agony most nights after eating small amounts. I had bowel issues as well and my stomach was a mess.
I was told many times over the phone it was ibs and nothing could be done. I even had a female doctor accuse me of pregnancy despite the fact that I had regular periods, was on it at the time and had no symptoms of pregnancy! I had been non-stop bloated for a year at that point if I was pregnant I’d have known. She refused to treat me and told me to take a pregnancy test. I was reduced to tears afterwards.
Fast forward a year and many useless telephone appointments later I managed to get a telephone appointment with an out of hours gp who told me she was concerned by the bloating and pelvic pain and got me booked in for an ultrasound.
I had the ultrasound in December 2021 and it took for me to ring up after not hearing anything for months (March 2022) to get my results. The receptionist told me the results were fine and no further action was needed. I called again a week later for blood results and asked the doctor about my ultrasound just to clarify. He told me it was abnormal and that they saw signs of adenomyosis. He said it wasn’t serious and had no impact on me. I felt like I’d still not gotten anywhere. I eventually spoke to another doctor on the phone a few days later as I was confused about all the contradictions and she told me they spotted adenomyosis and I needed repeats done.
I had another invasive ultrasound in April 2022 and in June 2022 I was diagnosed with adenomyosis. I was told that my uterus was oddly shaped and thickened. The doctor told me I had this condition and that’s it. No information, no support or anything. She told me I could be referred to the gynaecologist if I wanted? I agreed.
I got the letter through in June and was given an appointment for the end of January next year. Despite the diagnosis I still hadn’t had any answers about the bowel issues/bloating so I begged the doctors for a hormone blood test. They told me they’d ruled out conditions such as PCOS as my ovaries appeared healthy on the ultrasound but reluctantly agreed. A few days later I was phoned and told that I had all the signs of PCOS. Another diagnosis over the phone without any support or information. I asked about my fertility as that was my main concern and was told it should be fine.
I was left waiting for my gynaecologist appointment in January for some advice/support. Unrelated but I also had some asthma issues recently and after several attacks I was seen face to face by a doctor for the first time in 3 years. I was hoping to get some support as my asthma was so out of control that even 20 puffs of ventolin was doing nothing for me. I was constantly breathless. Instead of support I was accused of lying in regards to my inhaler use, he didn’t listen to a word I said and hurried me out the door. I was devastated at how I’d been treated. I’m still struggling to this day with my asthma (really struggle to catch my breath) but I’m too afraid to go to a doctor now.
I gained access to my medical records recently as I believed I wasn’t told enough about these conditions. My medical records showed that they found that I had a retroverted/anteverted uterus and extremely high prolactin levels in my blood, amongst other irregular hormones. I can’t believe I wasn’t told. Further research has shown that high prolactin is usually an indicator of a prolactinoma (benign brain tumour). Left undiagnosed can cause infertility, sight loss and can develop into cancer if there is a large tumour - amongst other symptoms. I wanted to contact the gp and ask for this to be taken seriously but I’m drained from chasing my issues up for years and not being taken seriously. The fact that they don’t seem bothered by something so serious is appalling. I’m grateful it isn’t cancer and I know people have it worse but it doesn’t take away from the fact that everything that comes with these conditions is chipping away at me bit by bit. You are supposed to be given repeat bloods and referred to an endocrinologist for treatment but nothing has been done. I’ve been left in the dark as usual.
Sorry for all of this rambling but the long story short is that to this day I’m suffering, I look like I’m 6 months pregnant every single day, my mental and physical health is a mess and to top it off I have barely had a chance to come to terms with the diagnosis of these two conditions before already having to contemplate another problem. I have no family for support, I only have my partner. I’m 22 years old and it’s incredibly lonely going through so many issues alone. Physically and mentally. I worry for my future health and fertility and I know my chances of conception are little to none. I just want one day where I feel healthy and alive again. Feels as though my world is crumbling and no one listens.
I don’t know how those doctors sleep at night
I can just feel the panic building...
