There are so many things that are difficult about endometriosis: the length of time to diagnosis, the difficulty in adequately expressing the pain symptoms, and the fatigue involved in fighting the pain and carrying on with normal activities despite agony. I would have thought that it would be painfully obvious if you see a friend who is doubled up in agony that you bend over backwards for her but some aren’t so lucky.
On twitter I’ve met a number of women who are lucky enough to have fantastic support of family and friends – we have a non-stop supply of hot water bottles, as well as prescription anti-inflammatories and painkillers. We stay in bed safe in the knowledge that our household chores are being taken care of for the day. We are given the time and space we need to recover.
However, not all are so lucky. For those who suffer with us, I know that our pain may seem a nuisance: there she is again, folded into the corner like a Chinese fortune cookie. She’s unable to take care of herself again and it’s a nuisance to have to pick up the pieces all over again. Because we are not bleeding profusely from the eyes, it is not obvious to the rest of the world what our pain can be like. In short, it’s all too easy for others to think that we’re lazy, self-centred or attention-seeking. Please let me assure you, as much of a nuisance it is for people we live with, it’s worse for us!
Endometriosis, if I haven’t said it enough, is a chronic illness with no cure. I am one of the lucky ones: I manage my pain so that I’m only in agony for two days per cycle. Because I run my birth control pills together, I only have a period once every 8 or 9 weeks. Despite my careful management, my pain scores between 8 – 10 on the Mankoski Pain scale for two full days each cycle. For those of you who are unfamiliar:
Mankoski Pain Scale
0 – Pain Free
1 – Very minor annoyance – occasional
minor twinges. No medication needed.
2 – Minor Annoyance – occasional
No medication needed.
3 – Annoying enough to be distracting.
Mild painkillers take care of it.
4 – Can be ignored if you are really
involved in your work, but still
distracting. Mild painkillers remove
pain for 3-4 hours.
5 – Can’t be ignored for more than 30
minutes. Mild painkillers ameliorate
pain for 3-4 hours.
6 – Can’t be ignored for any length of
time, but you can still go to work and
participate in social activities.
Stronger painkillers (Codeine,
narcotics) reduce pain for 3-4 hours.
7 – Makes it difficult to concentrate,
interferes with sleep. You can still
function with effort. Stronger
painkillers are only partially effective.
8 – Physical activity severely limited.
You can read and converse with effort.
Nausea and dizziness set in as factors
9 – Unable to speak. Crying out or
moaning uncontrollably – near delirium.
10 – Unconscious. Pain makes you
Endometriosis is an illness. None of us have asked for this. Believe me, if there were even a hint of a cure, I would seriously consider allowing myself to be one of the guinea pigs to try it!! That’s how desperate I am – and I’m one of the lucky ones who has had a successful surgery and only suffer a few times a year. Sign me up! Plug me in! Give me that drip! Open me up again and give me that cure!!
Is it little wonder that the incidence of depression is high for women who endure endometriosis. Would you be able to cope if you were told that you would have to endure 8 – 10 pain for a couple of days each month? Would you be able to cope if you were told that pain that makes you projectile vomit is merely “in your head”? How about waiting for years for a diagnosis? I waited 22 years for a diagnosis, is that remotely acceptable? Is it acceptable to get a diagnosis, not after all my pain but after miscarriages and infertility? Is it acceptable to endure surgery to achieve a diagnosis? (Of course not! It’s the Bloody Dark Ages!!) Would you want the support of family and friends after you were told that the pain isn’t in your head but there is no cure and you will endure pain on a regular basis for the rest of your life?
It’s little wonder that I left my first husband, who was as much use as a chocolate teapot with medical issues. It’s little wonder that I’ve endured depression. Since then I’ve surrounded myself with tender, understanding friends and family. My pain is endurable now. I consider myself extremely lucky. I just wish the rest of us were as well…
Take care of your sanity as well as your physical symptoms, ladies! At least we endosisters understand your pain.