Sunday, 23 March 2014

Your stubbed toe still hurts

With the pain returning, I'm abruptly debilitated - unable to cook, clean, shop, barely able to walk. I'm reeling with the generosity and help of my friends. I idiotically put pine essential oil in a hot bath and ended up not with soothing heat for my swollen stomach, but burning all over, and too sore to shower or to wash the bath and start again. I bewailed my idiocy on Facebook - and a friend nipped over, made me tea, and cleaned my bath. Another friend messaged twice to ask what she could get me from the shops and went shopping for me. Another came to spend the afternoon with me and support my arm so I could have a short walk in the sun. And then, "I feel rougher than a badger's bottom," says a friend who's ill, "But I can't complain when you're suffering so much."

Oh yes, you can. My endometriosis doesn't magically make everyone else pain-free and illness-free. (If it did, I'd take it on the chin and celebrate; at least it would be for something.) Your flu is still awful. Your period cramps still suck. Your stubbed toe still hurts. My pain doesn't cancel yours out nor does it dwarf it.

I recognise the sincerity and generosity behind that thought: the recognition, even: and I appreciate it. The reverse can be horrific. A friend who's recently lost her husband was given some coping tips by a woman who said they'd really helped when she lost her dog. Sorry, what? You're comparing the loss of a pet to the loss of a husband? You don't do that. But it's not the other woman's grief that the friend objected to, just the comparison.

You can't compare pains. Sometimes people do, trying to find a place from which to relate to something they have no experience of. "Housebound? That must be really difficult, I spent a couple of days on the sofa with flu and it was so frustrating not being able to go out." That's well-intentioned and can be tactless (especially if they make a direct comparison). I try, in those cases, to respond to the intention, which is empathic. I can't expect people to know what endometriosis is like or to know what my experience of it is like, so if they're looking for an in to understanding, fair enough. If it's a very poor in, I can try and explain more, if they want.

But most people, in my experience, err in the other direction, so this is just to say - it doesn't matter how much pain I'm in, your pain still hurts too. And thank you.

(Apologies if the writing here is less articulate than I might wish. Sometimes the endo bit really does sabotage the writer bit.)


  1. I just stumbled onto your blog while looking for information about "progesterone dominance" which doesn't seem to exist. I changed my search to progesterone sensitivity and here I am. I've read your posts on progesterone intolerance and everything that goes with it and it is like reading the story of my life. I am f49 years old and have be not tolerating progesterone for 40 years. Until I got on the peri-menopausal
    carousel, I could tell to the minute I underwent my monthly chemical swing (usually on the 17th day of my cycle). I would immediately feel angry, hopeless, paranoid, anxious--out of control. Then, eight days later, the switch would flip and I'd be back to normal, though worse for the wear.

    Any hormonal tweaking the doctor prescribed (the mini pill, progesterone cream), caused me to fall into depression. Recently, I was put on progesterone to stop uterine bleeding to do fibroids, and all was sort of well for a couple of weeks, then I was thinking about harming myself, convinced that I was nothing and useless and that the rest of my life would consist of watching the next 20-30 years of prime time TV and then dying (I'm still not convinced that's not true), but I stopped taking the progesterone yesterday and I already feel quite a bit better.

    My entire menstruating life, it has felt like climbing up a flight of stairs only to be knocked all the way down to the bottom every couple of weeks. I would bet everything I own that my PMDD/progesterone intolerance has had a huge, negative impact on employment history and my relationship history. Being a different, emotionally tortured person one week of the month no doubt effected my ability to sustain initiative to get promoted in jobs or have the emotional wherewithal to sustain many relationships. Either that or I'm a lazy bastard, but that wouldn't explain all the yelling and crying. I have been on an strong cocktail of psychoactive drugs for depression for years (with Prozac thrown in for PMDD), but it never really helped from ovulation to menstruation.

    I am scheduled to have a hysterectomy due to my bleeding problem and I will have my ovaries removed because my mother had ovarian cancer at around my age and because the hormones have to go and my doctor agreed to take them out. I hope that this improves the situation--maybe I can even lighten up on my antidepressants.

    Well, I've rambled, but I am so happy to have found your blog and thank you for putting into words the hell I have gone through for all of these years.

    I have heard how painful endometriosis is and I wish you relief from the pain you are suffering. Thank you so much for writing while you are going through it. You are a warrior!

  2. Hi, MKR. Thanks for your comment and I'm so sorry about how much you've suffered with this. I hope you've read the other comments on the progesterone-intolerance articles: a lot of women talk about similar experiences, including the destruction it can wreak on relationships, and knowing that other people have been through the same is painful but reassuring: you realise it really isn't just you.

    I'm *not* a doctor so I can't advise on a full hysterectomy, but I do advise checking on one thing. If you're considering having your ovaries removed, find out whether you'll need to take an HRT that includes progesterone! The Brief introduction to progesterone intolerance includes referenced info that you can give your doctor. It may also be worth giving them the "spotlight on..." symptom posts: educating doctors about patient experience is always useful.

    Thanks too for your good wishes. I'm very sore at the moment and that really does help.


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