Dysmenorrhea, my DISORDER.

I don’t know where to start,  I am exhausted and emotionally unstable right now so excuse my disorganised exhaustion riddled rant!!

When people talk periods, I have to laugh. I try to say nothing as it is impossible to explain what a ‘period’ is to someone like me. It is completely disabling. The worst thing imaginable which mentally and physically has nearly killed me.

I have a menstrual disorder known as severe dysmenorrhea. This is a condition where for often an unknown reason, women suffer extreme pain when having a period. There are many different types but for me, the period is the least of it. The condition is not treatable, and not even manageable.

To even explain what happens is difficult. So let me just explain what happened this particular week, and luckily I am on annual leave so am not having to take time off work, which is one thing as it is embarrassing and when they write on your return to work paperwork; ‘abdo pain’ or ‘women’s problems’ it is completely belittling, humiliating and no one understands. It isn’t JUST A PERIOD. What a waste of a week off!

I was up and about feeling fine, and suddenly I feel an excruciating stabbing pain in my lower abdomen. I fall to the floor and realise it is happening, I am about to get a ‘period’. This is not a common occurrence, as my periods are so severe I shouldn’t have them, as they often hospitalise me. I take the pill now every day with no breaks, this is my doctors way of attempting to treat me, this time. But sometimes every few months it will happen, this time probably due to me taking my pill a few hours later than usual. Ridiculous I know. So I am now in excruciating pain, unable to get off the floor. It then spreads to my back where it feels like someone is scraping my lower spine with a scalpel. Whilst stabbing me in the ovaries. I think I am going to be sick. I then get aching pain up and down my inner thighs. I immediately start sweating from all the pain and try to crawl to the bathroom where I can curl up on the floor, ready to be sick and feel the cold floor. But I can’t move, my legs hurt and are like jelly. I lay there for about half an hour until the pain seems to reduce. This is what I call a ‘contraction, yes, just like labour! These will come and go like contractions, with constant pain in between but sometimes long enough for me to get off the floor. But getting off the floor is a risk as this could cause another one. I lay there for a while crying ‘post contraction’ and another one comes, at this point it is too painful to cry. At most I scream a bit. I am sure I am going to be sick but I cannot move. The pain in my back is sometimes worse than that in my abdomen. I stick my knuckles so hard into my lower back to try and help, I have always done this even though I often bruise from doing it so hard, but the counteracting pain is so bad inside me that I don’t even realise I am causing this bruising. After about an hour or so I get up and quickly grab everything I need ready for the next contraction, which I can already feel coming. I make a hot water bottle and grab my phone and return to the bathroom just in time for another contraction. I am holding this boiling hot water bottle to my lower abdomen whilst forcing my knuckles into my back, rocking furiously in the fetal position. It is quite horrific to see and for those who have been through it with me, were very scared and often have called an ambulance. I explain this is ‘normal’ but they can never accept it. After the next contraction passes, I am utterly exhausted, covered in sweat and now freezing, I have no energy. I have burnt my stomach and my thighs with the hot water bottle, not that I realise I am doing it. This will go on all day and night now for days, on and off severe contractions with intermittent lower but still serious amounts of pain, but enough to crawl.

This time, is what I would call a ‘good time’, and ‘not a real one’ as I often say to my friend Alice. A real one, I have vomited. I have passed out from the pain, exhaustion and dehydration, as these go on for days and days, I struggle to eat or drink, and I do not sleep. I cannot get off the floor, I cannot sit on a chair or sleep in a bed. I have to stay curled up on the floor rocking and screaming, crying when I have the energy. When I have breaks from the contractions, I still have a pain of about a 4 or 5 on the pain scale. Now i’m a nurse and those who know me… (Alice, sorry I often rant to you about peoples version of the pain scale!!)… know I do not like the pain scale or scoring, and do not take it lightly. I have seen people walking, talking, on their phones and eating telling me their pain is a 10. DONT GET ME STARTED. My 4 or 5 is probably agony for you, but I have experienced such horrific pain that if I can talk, its a 4 or 5. Without the ridiculous means of contraceptions I have tried, a ‘normal period’ would go on like this for up to 10 days, easing off towards the end. I have been admitted to hospital several times due to pain and exhaustion. This is the part that really annoys me. At this point I need fluids, I need pain relief, I need anti-sickness, I am in more pain then you could possibly imagine, too much pain to even cry, too much pain to talk, and every muscle in my body is now in agony due to tensing and rocking full on for days, and I am exhausted and dehydrated, I have sweated out everything I have, bruised myself with my own knuckles and burnt myself. I have contemplated suicide during these times when my pain is at a 10 and I cannot take any more, when I have no energy left in me to rock, when my knees hurt from the floor. So when I am admitted to A&E, don’t you dare record me as having ‘period pain’, do not subject me to hours of waiting due to being admitted for ‘period pain’ and do not treat me like a bed blocker. If someone had cancer or COPD, you would give them anti-sickness and pain relief immediately to manage their condition, why is mine any different? I didn’t ask for this, and it is not self inflicted. I am not an alcoholic, I am not a bed blocker, I am here because at this point suicide is a serious option and my body cannot physically take any more, luckily suicide only crosses my mind for about 1 minute before the pain takes over and I cannot even think about anything any more other than the pain, and couldn’t get off the floor to do anything about it if I tried!! One time, after an admission and too long a wait when pain management is supposed to be a priority, someone finally saw to me and wanted me to LIE FLAT so they could examine my abdomen, because, you know, pain this severe couldn’t possibly just be period pain. Well 1) I know my body I have had this condition over 10 years and I am telling you it is, 2) I cannot lie down, I am struggling to even stay on this bed I feel so sick and need to be on the ground and 3) IF YOU THINK IT IS SOMETHING MORE SERIOUS WHY LEAVE ME HERE HOURS. Luckily, I am given a cocktail of drugs. The usual ‘placebos’ as I call them, paracetamol and ibuprofen, along with some other goodies including tramadol. Now tramadol doesn’t help with the pain so much as it knocks me out meaning I do not have to be awake through it. Finally some relief for my body. When I wake up I know the muscle pain from days of tensing and rocking will be so horrific/

Some answers to questions you may have. Yes I have been tested for many things which can cause dysmenorrhea in some people. I have not got ovarian cysts, I have not got endometriosis, I do not have a vitamin deficiency, yes I have had my thyroid checked, I have had blood tests and an ultrasound. No obvious cause in my case, it just happened. When I was young I was told I may grow out of it, nope. I had low weight and did not eat enough, the doctor thought this could be a contributing factor. I have now put on weight and have a perfectly normal BMI. But alas, still a mess! I obviously have taken all those pathetic excuses for drugs, feminax, paracetemol, ibuprofen, been on tranexamic acid. Meh. I have tried all types of contraception, sometimes at the same time, to try and see if they will help or ease it. Various pills, the implant, the coil, depo injection. Consequently, my hormones are a mess. Now I am a redheaded leo as it is, no need to add more hormones to that equation!

How do you explain any of this to someone when they say, oh, you had period pain. Or, you took time off because you were on your period? I feel ashamed and I shouldn’t. Dysmenorrhea is not just period pain. I cannot even stand to see period pain in the same sentence as dysmenorrhea, to me it is like comparing a chest infection to having COPD, you have no idea. Fuck your period pain. and fuck your chest infection. It is completely life limiting. My hormones are a mess all the time. If I want to change contraception I would have to book time off work to do this as I know full well it would equate to a period. I have currently managed to get it down to about two ‘real ones’ a year, with a few ‘half ones’ in between, you know, the ones which are excruciating but I do not think about killing myself.

So why can I not have anticipatory meds? I have stolen tramadol from my mother before (sorry mum) to knock me out. It is the only thing that has helped in any way, not from relieving pain, but just knocking me out, sometimes. Other people with more long term recognised conditions get them, but I don’t, why? Because its only ‘period pain’. To put it into context, I have only known one other person who suffers from dysmenorrhea, not as severe as mine, she was never hospitalised, however she had 2 children and said her dysmenorrhea was worse than childbirth. So just imagine for those of you who have had children, going through the pain of childbirth monthly, with no child at the end of it, and nobody being able to manage it, or tell you why it is happening, or treating you with any empathy at all. Being scrutinised and belittled. Would you be expected to work through childbirth?! Impossible. So instead I put my body through hormonal hell in the hope I don’t get a ‘period’, and if I do I have previously lied to employers about my absence because they JUST DON’T GET IT. That is, when my mum or partner hasn’t rung them because I am in hospital or unable to talk from screaming!

I am now coming to the end of my first week of dysmenorrhea this year, so I am exhausted, emotionally and physically, in so much muscle pain, mentally drained, hungry, thirsty, and I cannot stop crying! I feel lifeless and pathetic, and really angry.

I would like to apologise to everyone who has had to deal with me whilst I go through it, I can be damn horrible but its only the pain talking. I love you all.

Thank you to everyone who has been through all of this with me now and in the past, and been so supportive.

 

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