Can you describe it?

Over the last few weeks, as I’ve met new people, I’ve been asked to explain what endometriosis is like. So I’ve tried explaining it and I don’t do a great job of it. So I’ve decided to write it down so more people can understand what women with this condition need and also perhaps to help other get diagnosed. It took me over 15 years from my first flare-up before I was diagnosed. I don’t want others to wait as long as I have and go through endless scans (which don’t show endometriosis) and being told the only thing to help it the pill. 
I’m frequently asked by the medical profession to describe it. Very often I’m met with an unsympathetic response and a misunderstanding of the pain I’m in every single day. There’s still a belief in the medical community (in my experience) that if you’ve been lucky enough to have borne children then it can’t be that bad. The condition does cause infertility and, until recently, that was why the diagnosis came about. But now far more is known so why are the medical professionals still so unknowledgeable about this? It’s distressing that even the specialists in this particular field are still the dark. Even now I have just come home from a gynaecologist appointment where he tells me I’ve tried all three medications he can use for me. Yet again I’m told that nothing more can be done. I ask about a hysterectomy and he’s surprised. Again I’m treated as if I don’t know my own body. Again I’m treated like a hypochondriac. I’m on the verge of tears as I say how the pain is every day and not just around my period. Again I’m told a letter will be written to the local hospital to see what they will do. Again I wait. Again I plead that my quality of life is suffering. Again I’m made someone else’s problem. And again, as I ride home, the tears spill as I feel helpless and the cold wind dries their streaks onto my face. One day someone will truly understand. I remain optimistic that this chronic illness will be, somehow, laid to rest.

It’s not just pain, other symptoms abound and, unfortunately, are often missed. Exhaustion, depression, food sensitivities, issues related to nearby organs such as bowel and bladder etc etc etc. One frustrating issue that arises from endo is pain after intercourse. Whilst other women it the world lie there in a state of post-orgasmic bliss, in stark contrast, I sometimes end up in the fetal position no matter how pain-free the time before has been. My poor husband looks on helplessly and feels terrible and that it’s all his fault. Of course it’s not. But that doesn’t stop it ruining the post-coital intimacy. This, therefore, can affect libido as well. On an endo Facebook forum the women regularly talk about how to improve their sex lives. And also, from this site, I’ve heard tell of men leaving their partners because the women don’t want to sleep with them due to pain. What utter b@§!€*¥$!!! But I’m lucky. My husband wants me to be happy and is wonderfully sympathetic to all aspects of my plight. That’s called love, I believe.

Unfortunately endometriosis is still widely unknown and carries the same stigma that other unseen illnesses do. People think the pain isn’t that severe and that we’re just making a fuss. Although recently endo was on a list of the top twenty most painful health conditions to have. 

I’m going to try and describe it. So here goes.

What’s it like?
For women that’s a simpler question as I answer that the pain is like excruciating period cramps. Not quite the same but very similar.
A better description is that it feels like someone has reached a hand inside my abdomen and is playing around in there. Squeezing and pulling my insides. Pinching and punching, kicking and hitting, like pummelling my kidneys. Stamping on my bladder. Doing a tap dance on my uterus. And using my ovaries as punching bags. Sometimes the pain is manageable with painkillers. I take painkillers 7 times every, single day to keep mine under control and so I can function. Sometimes even those don’t scratch the surface and I cannot move. I literally cannot move. My legs hurt, the pain has migrated upwards and downwards. My legs, abdomen, lower back and upper belly all hurt at once. I have trouble walking. I can also liken it to the early stages of labour but again that doesn’t help the male population understand. I think if I punched you in the kidneys every 30 minutes and every day as hard as I could you might understand. I hope to whatever worldly powers exist that you never do experience it. I want your empathy and sympathy and understanding but not at the cost of your health too. I just want you to understand that this isn’t just once a month for me. It is every single day.

What do you do to help?
  • Yoga - this helps me soothe my body and my pain and work out the tension that arises from constant pain.
  • Wheat/heat packs - for pure pain relief 
  • Take painkillers seven times a day
  • Restrict my diet - certain foods exacerbate symptoms. I have a dairy and wheat intolerance due to endo.
  • Take expensive supplements - these help me balance my hormones and increase my energy levels.
  • Crochet - scientifically proven to be good for the brain and mental health.
  • Acting - I love it so it helps, a good distraction.
  • Singing - as crochet. Plus I love it. It helps me be more aware of my body too.
  • Eat chocolate - this one I am NOT giving up. It’s my treat for getting through the day.
  • Knowing when to rest (I’m still learning that one).
It’s about balancing the mental and physical. If I can manage to keep my brain happy I’ve won half the battle. 

What can you do about it?
  • Have a hysterectomy 
  • Restrict my diet even more
  • Try even more medications
  • Go to endless appointments 
In short not very much. Even hysterectomies don’t work in severe cases. Apparently my case isn’t that severe but the pain I’m in is. (The reverse can happen too - you an have severe endo but no symptoms.) My husband is tempted to phone my gynaecologist and describe my quality of life. He says that is more important than anything else. He calls me his hero because I manage to get out of bed every day, I manage the school lunches and school run, I manage to prepare dinner, I even go out sometimes and he knows that my love of the performing arts and crochet helps me beat this thing. Positive mental attitude.

So I keep smiling. Because I’m lucky. I have a husband who loves and supports me and helps me in my condition. I have wonderful children and I count my blessings that I was able to bare them myself. My family and friends are so important too. I am very lucky, I’ve found some friends here who are very understanding and sympathetic and don’t mind if I cancel coffee dates on them at the last minute or say I need a rest day. My family from afar send me good wishes and love and that honestly helps. If I didn’t stay positive I’d be in a heap on the floor most days. Some days it gets me, sure, but most I win. I’m it fighting my body. My body hasn’t done this on purpose and it would be a far happier body if endo disappeared. So my body and I are working together. We keep going. I bargain for a weekend full of rehearsals and it agrees provided I also give it then two rest days and maybe a bit of crochet. We are still learning together. But we find a way. I’ll keep smiling like Mr Ray

top twenty most painful health conditions