It’s hard to say when my story started, as the effects of Anorexia stopped my periods just as they had started when I was 11. I was then forced on to the pill a few years later when my menstrual cycle came back, by a very dismissive gynaecologist. At the time I was struggling with extreme mood swings leading up to and during my period, which resulted in multiple suicide attempts. I believed and still believe this to be PMDD but I was told ‘it’s just an American term, it doesn’t exist’. My periods were also extremely heavy to the point that I had iron deficiency, was fainting, bleeding through my clothes and in a hell of a lot of pain. But I thought you could trust the professionals and so just accepted ‘nothing was wrong’, especially as there is a history of heavy and painful periods in my family, with one member having to have a hysterectomy but ‘wasn’t sure why’.
I ended up being on the pill for 4 years straight. I went back to the doctors several times with concerns my symptoms weren’t improving but I was just put on another pill. At this point I decided I didn’t want to be on it anymore and it unmasked a lot of other problems. My belly started to swell to the point I couldn’t breathe, I was losing control of my bowels, covered in rashes, constantly collapsing, had reoccurring ‘UTIs’, extremely fatigued, in debilitating pain, having even heavier bleeding and bad clotting which all led to me being bed bound for weeks at a time. At first I thought it was the effects of coming off of the pill but when it never improved, I went back to the doctors. They referred me for an ultrasound and I ended up being misdiagnosed with PCOS and then back to them deciding nothing was wrong, maybe IBS. I know my body and knew this wasn’t right so I went back to the GP multiple times begging for help. The female health lead practitioner physically shoved me out the door saying I was wasting her time, I needed to grow up and she didn’t ‘want to fall in to the trap of tests’ which apparently I ‘still won’t be happy with even if they were arranged’.
I also went down the route of seeing a dermatologist as I believed the rashes were linked to my hormones. However, I was told it was just my genes, general eczema and I’d never improve, but to just keep layering topical steroids on it as that was ‘the only option’. When I expressed my concerns on this, I had a letter written to my GP from them saying I ‘need psychiatric help’. By this point my mental health was deteriorating very quickly, I felt like I was going crazy, no one was listening so I started to believe what the healthcare ‘professionals’ said about me- ‘it’s all in my head’, ‘it’s just anxiety’, ‘I’m too young’. I felt very alone and that there was no hope, no point. I found it put a strain on my relationships too- there was less reason to trust I wasn’t well when professionals are saying the opposite and it led to a lot of arguments. I couldn’t stay in a job because I was constantly sick, but I thought I was just lazy. My passions and hobbies became harder to do with the little energy I had. I was struggling to keep any motivation as I felt I had lost everything.
As a last resort, I went through private healthcare. The first lady I visited was very unhelpful and quite rude. However, I was then recommended a different specialist, who I saw in December 2022. As soon as I met him, I felt at ease, I felt heard, I felt validated. I broke down in tears because someone was finally willing to help. Endometriosis was his suspicion and so he booked me in for a laparoscopy in February 2023. Meanwhile, he prescribed me the Yasmin pill to start when I had my next period, in hopes to manage my bleeding and symptoms until then. I was also given strong pain meds to tide me over. Unfortunately, the cocktail of medication made me very poorly over Christmas but for the first time I felt hopeful, I was in safe hands.
On the 22nd February 2023, I was officially diagnosed with Endometriosis and Adenomyosis. The Endometriosis that was present at the time was excised and the Mirena coil was fitted during my surgery. The tears of relief returned- the perseverance was worth it, I knew my body, I was right. However, I found the aftercare to be lacking. The first thing I was told when I woke up was to ‘cheer up, others have it worse!’ and that I should ‘be happy I’m now cured from surgery’, which of course is a very frustrating misconception for a CHRONIC condition. I wasn’t warned about the emotional side that would occur in the recovery time due to the anaesthetic, that I would find going to the loo hard, that I shouldn’t sleep on my side. Instead, I was given a time period I should be recovered in which put a lot of pressure on me. I felt guilty I wasn’t at the stages they said I should be at certain weeks and that I needed more rest. I was told to exercise more, eat certain things and I’d feel better- but I didn’t, I felt worse, especially coming from a historic over exerciser and restrictive eater. I felt very overwhelmed, I kept blaming myself, thinking I’d done the wrong thing because I wasn’t ‘healed’ with what they said would work. But there is no ‘one size fits all’, one bodies needs are not the same as another. Take the coil for example - for me, it didn’t work so I had to have it removed after 6 months of trying, whereas it can be very helpful for other people.
After finding the Mirena didn’t work, my belief of hormonal eczema was validated by my gynaecologist. He believed my body doesn’t cope well with withdrawal of oestrogen so since then I have been back on the Yasmin pill but taking it with no breaks whatsoever, which I would say does work for me. Though it frustrates me the only option I am given is something that stops my body functioning naturally. Furthermore, I trusted my gut and stopped using steroids and after a long battle of TSW as a consequence, my skin finally cleared.
I am now 19, soon to be 20 and am almost at the one year post surgery mark. It’s difficult to say where I am at with my Endometriosis as it is currently being masked by other conditions I am struggling with, but there are a lot of things I have learnt. I am now an ambulatory wheelchair user, which took me a while to accept, but if a mobility aid is going to improve my quality of life, why wouldn’t I? We know our bodies best, so always trust yourself and advocate for the help you deserve. Never ignore what your body is asking for, it is incredibly clever so give yourself the rest you so desperately need and stop pushing through to please others, because you’ll only make yourself more poorly. If someone doesn’t accept this or you find yourself constantly ‘proving’ your illness to them, they’re not worth wasting your precious energy on. The real ones will want to help instead of seeing you struggle. And don’t feel bad if you’re on a ‘different path’ to those around you, your body is going through so much every day. I always say how me just surviving is my job, and that is more than enough. You are not a burden on anyone, your chronic illness is a burden on you.
