I have always grown up being different, but it never really phased me until I got into high school. I had a growth spurt when I was nine, so by the time I was eleven and going to high school I had grown three times quicker then I should have. Instead of looking eleven I looked thirteen and I was already 5”7, not to mention developed. Due to this growth spurt, I had also started my period at eleven and had endometriosis, although I hadn’t known that back then.
For anyone that doesn’t know what endometriosis is, it’s where the lining of your womb comes away, but instead of all coming out with your period it sticks to your organs. It comes with the most horrendous pain such as back pain, legs pain, hip pain, severe bloating, constipation, extremely heavy periods, and infertility, to name a few. This meant no swimming on holidays, or sun bathing in a costume. and no going to the beach and relaxing. At the time, I thought the symptoms I had were what every women had, and I just put it down to heavy periods.
It wasn’t till I got to sixteen that I realised I needed help. The doctors never once investigated, or considered that it might be endo, so instead they stuck me on birth control. Over the next five years I tried every contraceptive going, and not a single one worked. By the time I was twenty-three I’d had enough, especially since by that point I was experiencing every single symptom possible. On top of this, I had also been diagnosed with hypothyroidism; this conditions often means I am extremely tired, and experience hair loss, brittle nails, weight gain and much more.
I had to fight for someone to listen to me, as all I kept getting told was ‘you’re fine, you’re just over weight and tired’. One of the worst symptoms of endo was being in pain during sex and after sex, which meant I would spend days in bed feeling like I had been run over. This then meant my relationship at the time began slowly dwindling away, as he didn’t understand and would only be so sympathetic.
I couldn’t cope any more. I was struggling to work, and having to drive around all day trying to find a toilet every half hour was exhausting. I would have to wear pads the size of nappies and change myself a minimum of every two hours. Trying to prove to work and explain why I was ill was always horrible, as they just didn’t get it which made the situation even more stressful: they even asked for my hospital letters as they didn’t believe me, so in the end I left and spent a year out trying to cope.
Back then, I never wanted to go out as I couldn’t fit my bloated belly into anything, and I would literally turn white and nearly pass out every day. In the end I went to the doctor and just cried and screamed until I was referred privately, because the NHS were not interested. This was not my first referral, as a year before this I was seen because all my symptoms were similar to cervical cancer, and due to my age I was refused a smear with the NHS. After I saw my consultant about my endo I burst in to tears, because he was the only person to listen to me after twelve years of being ignored; even the consultant didn’t understand how I had been surviving all that time.
I was diagnosed with stage three endometriosis. Two weeks later I was in having surgery and was operated on for four and half hours. The endometriosis had rotted on to my organs as a result of being left for so many years. After my operation… I can’t even explain how ill I was; I thought I was going to die. I have never been in so much pain. Since then, I have been medicated with something called Zoladex injection as well as a tibolone tablet. This drug stops my brain producing oestrogen (therefore no period), though the only down side is I get early menopause with hot sweats, but I couldn’t care less: I have my life back!
Two years later I am still on the drug, and about to find out if my bones have thinned, as like all drugs they have side effects; but then, should I come off of it I would be back to a life of pain. One of my biggest hurdles for me was my mental health, as I didn’t realise how much all this would affect me, especially after my operation. I felt like a let-down as a woman, as my chances of getting pregnant were reduced.
The biggest worry for me was fertility, because with endo some women never conceive, where as some do after a while; it’s a guessing game. Another moment I was scared of in particular, was having to explain to a new boyfriend about my situation. I want to let all the ladies out there know its ok to be scared when meeting someone new, but I’d recommend that you just be up front about it. My boyfriend, who I am with now, has been amazing and always looks after me. As soon as we had been on a couple of dates, I told him, simply because I saw a future with him and I couldn’t not tell him with all the symptoms I get.
This also helped me then get over being embarrassed about my illness in other aspects of my life. I am now very open about it, and will talk freely about my experience. Through this I have helped other women who have contacted me after experiencing the same symptoms.
I started a new job in July, and was up front with the manager: I told her I had endo because my injections are every 4 weeks (I didn’t want them to think I was sneaking off). I also knew I would have to come off of the drug at some point and would have to tell them. To my surprise my new manager had it to! I felt so reassured, and glad I was up front: many had people told me to lie in case they wouldn’t hire me, but honesty is the best policy.
Living with one invisible illness is a struggle, so trying to adapt with two has been tricky, but I’m finally getting the hang of it. Ladies remember that you are strong, and even when you feel weak, or feel that you haven’t achieved anything that day, that’s ok! Even if just getting up to have a shower or brush your hair is all you do in the day, that is an achievement.
People who don’t have endo or thyroid issues will never understand the pain and extreme tiredness. They may not feel sympathy for you, but it’s your body and you look after it however you want to. Never feel guilty for resting and chilling out; when I am exhausted, all I do is sleep and that’s what works for me. One the days when I do have energy, I never take it for granted and I don’t sleep in. I do things I would never normally do, and I truly make the most out of my time because I never know when I will feel like that again. I also changed my diet to vegan as lots of people had recommended it, saying it has helped with endo flare ups.
I know my journey in life will be a struggle, but I am a fighter and I will find a way of making sure I live my best life. If fertility becomes an issue there are always other means, so I’m determined to keep positive about that too. My top tips for coping with pain would be heat pads, feminax express, rest, hot baths, and massages. If you think you have any of the symptoms I have described, please go and visit your GP and ask for an internal scan for endo, or a blood test for your thyroid.