#i went out to the pharmacy in -20 weather and didn’t buy myself a treat which i was proud of

[rosamundpkes]

had to make brownies today just to feel a little joy thanks to the forty billion evil news alerts i got

[these-eyebrows-are-not-even]

Pain, Pain, go away, please come back another day

I have decided to start off the first Thursday of the month with a personal piece, the aim is for it to be like a confessional; I start the month fresh and we dive into all kinds of things during the rest of the month.

I don’t think of myself as any different than most 23 year olds apart from the fact that I have a tendency to write stuff down. For me the thing that sets my life apart is the pain I experience. Sometimes it’s for consecutive hours which lead to consecutive days or sometimes it could be as little as thirty minutes. My first memory of this pain is when I was 15 and sitting in my GCSE French Class. I remember sitting there in so much distress, I couldn’t focus, I was worried I was going to faint. My teacher sent me to the nurse’s office and I hardly remember walking there because of the pain. I was given a painkiller and a hot water bottle and laid there till my mum came and collected me. A friend had dropped off my stuff as I left class for the day and I went home. We were meant to go out for a birthday dinner that night, but my mum said “you’re too tired now, even though you’re no longer in pain, you’ll just be too tired to enjoy it” and she was right.

And then she told me about her pain and the painkillers she used to help with it. The system was you take co-codamol (codeine-paracetamol) and you take that every 3hr 30 so that you’re overlapping between doses — that way, you are ahead of the pain. But that isn’t enough. So you take ibuprofen too, as it’s a different formula to paracetamol so they can be taken together. So you take co-codamol and ibuprofen whilst having a constant hot water bottle. That’s what I did, sometimes it worked and other times the pain still came through. I got used to taking painkillers and pretending I didn’t want to cry because of it. I got used to having painkillers on me or running into drug stores to buy them. For any medical or pharmacy student out there reading this, I get that you’re worried about my kidneys, liver and stomach but I don’t know what to tell you.

When I moved to Maastricht, I had begun taking the pill constantly. Although I still felt pain on the pill, at least it wasn’t as bad when I had my period. There are two incidents I remember. The first was I was coming back from the supermarket with my weekly groceries and all of a sudden I was in so much pain that I just sat down on the pavement, I couldn’t walk. I debated how many minutes it would take for a friend to come get me and if I could walk the last ten minutes home. I finally got up and walked home crying in pain.

The second happened early on in my current relationship. I took my boyfriend to a house party and we were standing in the hallway by the stairs chatting with people and planning to move on to somewhere else soon, when all of a sudden the pain hit and I sat down on the stairs and prayed it would end. It didn’t, I told people I felt tired and would actually just go home. It was an easy walk back to my house but I could barely stand so me and my boyfriend walked to the bus stop. We got on the bus and he was trying every tactic to distract me from the pain that is consuming me. We get back to mine and walk up the 4 flights to my room. I lay down on my bed defeated and he had to undress me as I couldn’t even sit up to undo my jeans.

I suffer from debilitating cramps, I have crawled around my house not able to stand, I have been unable to shower with the pain and unable to sleep. I take far too many painkillers than recommended by medical professionals and I used to drink whilst taking them. But I don’t know what else to do.

My mum had endometriosis and after years of callous remarks and patronisation she was finally taken seriously. I didn’t want my story to be like my mum’s and so last year I summoned enough courage to go and see a doctor about it. I got referred to a gynaecologist and after an ultrasound and listing my symptoms I was told “I think you have endometriosis”. I got referred for a laparoscopy and got one in January this year. It is a minor key hole surgery where they examine the organs inside the abdomen and is the only way they can diagnose endometriosis and conditions like it. An incision around 1–1.15cm is made in your belly button and a tube is inserted through the incision. Carbon dioxide gas is pumped through the tube to inflate the abdomen. Inflating it allows the surgeon to see all your organs more clearly and gives them more room to work. A laparoscope is then inserted through the tube. The laparoscope relays images to a television monitor in the operating theatre, so the surgeon can clearly see the whole area. Further incisions can be made to check fertility or to remove any growths or scar tissue in the area. After the surgery, some of the gas remains in your body and drifts around so you may feel back pain and are very gassy as well as bloated. Apart from that, you may feel cramps and vaginal bleeding. It takes around 5 days to recover and bending, carrying heavy things etc is not advised as you don’t want to open the stitches. You also have to wear compression socks, in order to prevent blood clotting and I put them on straight after surgery and wore them in the days after. Bonus fact, sneezing is incredibly painful and holding a pillow around your stomach is very helpful in cushioning the pain (pun not intended). Two weeks after surgery you can have sex again however, that does not necessarily mean you want to. After the surgery I felt slight body dysmorphia because of the scarring and swelling that had occurred, which was mentioned in the helpful NHS pamphlet I was given! More information: https://www.nhs.uk/conditions/laparoscopy/

My mother had the same operation many times and it was almost the exact same when she had it more than 20 years ago. She was the one who told me about the sneezing trick with a pillow! As a society, we have progressed medically in some areas so much, it is unrecognisable. However, for women’s health and women’s reproductive health, it is even hard to say that progress has been made at all.

After the surgery, I was told they had found nothing: I was fertile and there was no reason for the pain. They would book an appointment with me to discuss pain management options.

When the first period after my laparoscopy was pain free, I thought somehow I had been cured. But every one after that has been just like before and I still have random pain.

When talking with a friend about this she said “Planes fly through the air, thousands of them daily, carrying people across oceans and deserts and mountains, defying laws of gravity and weather. When a plane crashes, a full review is conducted and answers demanded despite the fact it defies so many things to even just take off. Despite it all Society cares about plane crashes. However, it takes 7–8 years for a woman to be diagnosed with endometriosis, for her pain to be taken seriously. Thousands of women suffer pain daily and the cause is easily researchable with all our technology but unlike the planes, society does not care about women’s pain”

And she was right. Society does not care about my pain or the pain of any other woman for that matter. That saddens me and it makes me angry. I would like to be in less pain and I don’t think that’s a big ask. I would still be happy with period pain but just at a more normal level of pain as I know my pain scale is messed up.

I would like not to have to decide between writhing in pain as I try and give my internal organs a break or taking the drugs and still ending up writhing in pain

I know they say I am fine but I know this pain isn’t normal and I know this isn’t the life I or other women deserve.

I also know that I’ll probably have more laparoscopies and that this was just my first.

I also know that if I do have endometriosis or a similar condition such as Polycystic Ovary Syndrome (PCOS), that by the time they find it and treat it, I could be infertile, and that if society cared about my pain, something would have been done sooner. Society cares about my fertility but it does not care about the factors which alter it. If a woman became infertile due to reproductive conditions such as PCOS not being diagnosed early enough, the blame would fall on her for not seeking help sooner and not on the medical professionals who withheld help .

This may seem like an angry or bitter article but right now, I mainly feel sad. I feel sad because I know I’ll have to keep pushing for statistically 8 years and keep taking painkillers and saying things like “oh I think I’ll just take a seat” when a painful cramp hits and I feel weak.

I also want to say to every single woman out there, I am here to support you and here to continue fighting with you for medical professionals to take our pain more seriously and get the money allocated to needed research. We shouldn’t have to live with this pain.