I went to see my specialist this weekend, and at first I thought it wasn’t too bad news- I mean, the words hysterectomy and abnormal cells weren’t used, so that’s pretty good for anyone who sees a regular gynaecologist. He showed me the photos from my September laparoscopy which were pretty disgusting to say the least, and told me that they burnt and cut away all that they could, but some of it is too deep to operate on- it’s next to my kidneys, so operating would be risky. From what he told me I gathered that burning it away would only help pain during sex, and I’d rather have working kidneys than completely pain-free sex, so I didn’t ask him to operate. But now I’m wondering, did I do the right thing? I don’t understand this disease despite reading up on it for about two and a half years. I’m scared. What if the endo spreads to my kidney? What if burning it away will get rid of the exhaustion I am feeling right now? I don’t know what to do.
He’s also recommended that I go on Qlaira, a new expensive combined pill, because I’m still getting periods on Cerazette. Has anyone tried this? I’ve used combined pills in the past which I bled through, but my doctor said it was the best.
Sixteen months on from my full diagnosis, I am feeling much more stable. I know my triggers, the medication I should take, why I feel certain ways and, more importantly, how to actually keep my life normal.
I’ve improved so much since last year and learnt that just because I’m feeling ill, I don’t have to give up. I didn’t miss a single day off work for endometriosis last summer and I managed to hand in all my coursework this term happy in the knowledge that I could easily see some of my essays getting a first, even though I was in pain writing them. I am loving my degree and learning to prioritise. I’m relaxing and recovering at my parents’ house now for Christmas and feeling and looking much better.
Thanks to everyone who has been so supportive since I started this blog. My inbox is full of messages, which was so amazing when I had my second laparoscopy, and thanks to everyone who’s trusted my advice.
Merry Christmas to all my followers, I hope your holidays are pain free, and if they aren’t, I hope you enjoy them anyway :)
My mom said to me when we were both upset today about my chronic illness, “sometimes I just have to think, at least you won’t die from it, at least it’s not cancer.” Bur that just made me think: if cancer is a death sentence, endometriosis, or any other chronic illness, is life in prison. It’s not going to cause our death but it’s probably going to haunt us until we die.
I’m scared of life after education; a life of relying on my own ability to generate income. I used to want to live in New York for a year, but at this rate I’d be spending thousands of dollars on medical bills if I ever emigrated. When you think about it, we have the same problems as criminals when they leave prison. We’re discriminated when we try to work, we can’t go to certain countries. We’re trapped.
The fact that I live in a world where being unlucky equates to being treated like a common criminal makes me sad. I’m sick of being hidden away from society. I’m sick of most people thinking that invisible illness just means that you have something that doesn’t really affect you, but I’m also sick of being terrified to tell potential employers that I’m ill in case they think I’ll ruin their business by never turning up to work. It’s a paradox.
I don’t tick disability on a job application form any more. Instead, I tell them in the job related questions section that the biggest setback I’ve overcame was being diagnosed and still fighting to succeed at life through my own persistence when doctors told me that all my pain was untreatable. If employers don’t want to hire me, that’s fine, because if anything, this illness has given me the mental strength to achieve success no matter what people tell me I can’t do.
Nothing against Movember or anything, but when is there ever going to be a women’s health month? Go into any gynaecological ward and you will see women who are pregnant/miscarried/having-their-womb-scraped-out/being-told-they’re-infertile, all crammed into beds next to each other (and let’s not go into how invasive it is to even get a smear test). I’ve been in a gyno waiting room for two hours before, waiting to see a doctor who scheduled me in for a serious operation after a 3 minute appointment, which I waited seven months to be slotted in to. Men’s health is important, and I commend Movember for being so innovative and successful, but women’s health is important too, and I can’t see a fashionable way to raise awareness for it. It’s not like we can grow out our usually-shaven hair without being viewed by society as undesirable.
I think that a lot more pain and heart goes into a relationship when you’re chronically ill. Not only are you not feeling yourself, let alone well, a lot of the time but you know it’s hurting your partner. You remember how it could be a bit of a pain when partners in the past had tonsillitis or whatever for weeks on end and you couldn’t see them. You remember how horrible it was to not be able to help them. But you knew that they would get better. When your illness is chronic, your partner has to deal with the fact that it will come back… sometimes daily. You won’t change.
I think it’s really hard for people to accept that your quality of life will just never be as good as their own, and nothing they do will change that. Some people feel like they’re not being treated with enough gratitude simply because their partner isn’t getting better after their efforts are helping. Sadly, being made a hot water bottle is as regular a thing as being made a cup of tea in our lives; the tenth time in a week isn’t going to make us hug you with joy. Sure, we’ll say thanks, but if we feel awful enough to need someone to look after us, the pain is a pretty big distraction from other people’s feelings. And let’s not even go into the fact that when you’re ill, you constantly feel like a burden.
It’s hard. It really is. But I trust that there is someone out there for me that will accept that I can’t hike up a mountain or be happy all the time.
I think I might have a bit of a phobia of giving over so much control to a surgeon and the idea of coming out worse in any way is really scaring me. Anyone want to message me some reassuring words about why I shouldn’t panic?
Imagine being stuck with a broken phone for the rest of your life. A phone that only receives and sends texts and calls properly 2 out of 3 times. Every time you explain this to someone, they either don’t believe you or see no point in contacting you. You lose communication from everything, slowly but surely, and the phone, although working one third of the time, seems to be useless.
Now, when you have a chronic illness, your body is broken. It makes mistakes. It sleeps through important appointments. It can’t walk a long way. It reacts unusually to ordinary foods, ordinary conversations and ordinary situations. But no-one else can see that. Sometimes it’s barely visible to the patient. Just like with the phone, people think you are over-exaggerating the amount your body is damaged, especially when they don’t understand your illness. They think you’re lazy, crazy, sensitive, fussy… or at least you fear people think that. It’s like being trapped somewhere nobody knows but yourself. It’s a lonely place and it has lasting effects on self-esteem and relationships.
The only way this can be helped is through education and understanding. No current government is going to put funding towards this, but the information is out there. If you know someone with an invisible illness; a friend, spouse,family member, employee, etc., do your research and remember you will never know what they’re going through but you can try to understand. A simple Google search can clear up a lot of misunderstandings. When someone has a broken body, it’s not just the physical aspects they have to deal with. Don’t leave them in isolation.