Ah, that old friend of mine. It’s with me when I’m feeling great, and when I’m feeling low. It’s with me when I’m at home, and when I’m at work; when I’m with friends and when I’m alone. It’s my constant companion.
Let’s talk about endo-pain: the chronic pain associated with endometriosis. Because it just so happens that, to the complete chagrin of us, the sufferers, endometriosis and pain, or shall I say, endometriosis and chronic pain, are inextricably linked.
According to the NHS – the free national health service in the United Kingdom – Endometriosis is one of the top 20 most painful medical conditions, somewhere between kidney stones, fibromyalgia – notoriously painful, broken bones, heart attack, and cancer.
And yet, so few people actually know about the condition – although public awareness is slowly increasing – and therefore have any idea about what women with endometriosis go through on a daily basis.
“Sorry, I can’t go out tonight”
“Nobody understands me!”
“I’m off sick again, and I’m really worried about losing my job.”
Hand up if you’ve been in at least one of the above situations. My hand is up! Both of them!
“I don’t know why you’re still in pain,” said no one less than my surgeon six months after two ‘successful’ operations to drain my Ovarian Endometrioma, (‘chocolate’ cysts on my ovaries the size of small apples) and remove the endometrial tissue from my abdomen. The surgeons all too often focus on the physical aspects of the disease, and sometimes underestimate the effects that living in chronic pain can have one the endometriosis sufferer. Apparently, my brain “had been rewired to feel the pain, where there’s none”, he said. But who knows?
“The pain is in your head.”
Or so we are being told again and again.
“You can’t be in that much pain.”
Our chronic pelvic pain is not only being dismissed, its intensity and the level of our suffering is being underestimated. Don’t you know the worst torture is a drop of water constantly falling on the same spot? Pain level of 4 that’s never eases can cause havoc with the sufferer’s physical and mental well-being.
Many of us resort to a life on Tramadol, Mefenamic Acid, or other painkillers, all of whose side effects can be harsh. Or we are put on an artificial menopause.
That’s what condemns women with endometriosis to dealing with the side effects of endo-pain AND the side effects of the drugs taken to deal with endo-pain. All that while being judged by the society. A triple whammy!
So, it was with extreme interest that I read the Scientific American Mind’s Special Report dedicated to PAIN and which included an article on Treating pain without pills. I thought it so relevant to us, that I felt it really important to cover its findings here in the context of endometriosis and pain relief.
What is pain and what is its impact on my life?
- “Chronic pain is defined as lasting more than six months but involves thought, emotion, attention, sleep, memory and social interactions.” 2
- Sources of pain: the origin of the chronic pain can vary, and includes Neuropathic Pain, pain caused by damage to the nerve tissue itself.
- Perception of chronic pain by the physicians: The pain is becoming increasingly seen as a “disease it its own right.”2 Chronic pain is now seen more as a condition affecting both the body and the brain. This opens up doors for broader treatment options rather than just those solely focused on drugs.
- Side effects of chronic pain: These are serious and include increased mortality, as well as an array of mental issues, such as depression and anxiety.
- The vicious circle of pain: The Vicious Circle of Pain means that chronic pain increases social isolation, and the social isolation in turn increases the levels of pain you feel.
6. The sufferer’s struggle: Have you ever struggled to explain to your surgeon, GP or physician how you were experiencing the pain? I certainly have. This often leaves us feeling powerless. Being powerless mean we’re less like to take action and do something about your pain.
This can also lead to CATASTROPHISING. Catastrophising is an extremely debilitating condition – from my own experience – which leads the suffer to feel so overwhelmed by the pain that they believe their pain is greater than it actually may be.
Endometriosis suffers frequently claim their pain is 10 on the pain scale of 1-10 ALL THE TIME.
The level of pain categorised as 10 means an ‘unimaginable, unspeakable’ level of pain that leaves the patient unable to move and unable to speak.
Catastrophising also leads to an intense focus on the pain.
“My husband doesn’t understand me. He just asked me if I wanted to go out with our friends next week / go on holidays / what I wanted for dinner. Doesn’t he know what I’m going through???!!!! He just doesn’t understand me! I’m in so much pain and all he thinks about is himself.”
Catastrophising can also lead to an overreliance on drugs.
“Only drugs can help me.”
But then frequently, even drugs don’t seem to help enough.
Is there an effective way to treat pain?
Effectively treating pain is possible and some great outcomes have been achieved for many patients. So, there’s hope!
The current thinking is that the effective treatment of pain should be tailored to each patient and involve a number of different approaches.
This means that in addition to or instead of drugs, therapy could involve cognitive-behaviour therapy, alternative therapies, meditation, yoga, or alternative therapies such as acupuncture.
How it works
This approach to treating pain works to “CHANGE THE PATIENT’S RELATIONSHIP TO THE PAIN, RATHER THAN LOWERING THE INSTENSITY OF THE PHYSICAL SENSATION.”2
Why it works
- This approach is based on Mindfulness Based Stress Reduction (MBSR). First developed, in the 70s, this holistic approach can’t treat the disease, but can help alleviate some of its symptoms and increase the quality of life.
- It helps the sufferer become more aware of what’s happening to them – giving them greater control over how they experience pain.
- The sufferer feels more in control, because they have been given more options as to how they deal with their pain.
- That recognition of the trauma of pain they’re dealing with, part of their life-limiting illness means that they feel heard.
- Individualised care allows them to feel like they’re being taken care of; they feel that their suffering is being treated seriously.
Learning to help yourself
Although there are specialist pain clinics, these may not be covered by your insurance, or could be prohibitively expensive, but there are simple steps you can follow to help yourself.
Start a Pain Diary, in which you record your pain experience as follows:
- Record the level of pain you’re experiencing throughout the day. The key here is to be very realistic about your pain level. If it’s 10, record it as such. But if you’re sitting at the doctor’s room, telling her your pain level is 10 right there and then, they’re not likely to treat your seriously. Be realistic!
My pain level is about 2-3 most of the time these days, increasing to up to 8 on occasions.
- Focus on a broad range of remedial treatments. In your Pain Diary, record all the different things you’re trying to do other than just rely on drugs to help yourself. Do you do gentle yoga when you can? Do you meditate? Do you ever listen to relaxation music? How about acupuncture, reiki, or reflexology? This will help show your doctor that you’re trying everything you can rather than just relying on drugs. Critically, it can actually help with the pain, as for example acupuncture, either does work, or has such a strong placebo effect that it should help allay your symptoms significantly to have an impact on your quality of life.
- Rebalance your experiences. Do this by recording your emotions. How are you feeling? Overwhelmed, isolated, misunderstood? Put it down on paper. Remember to also write down all the good things that are happening to you however small. It’s all too easy to focus solely on the negatives. You saw a cute dog on the walk? Write it down and seek out the small moments of happiness.
- Seek help. Is there a local Endometriosis Support Group you can join to meet people whose experiences will be similar to yours? Being part of a group can be a powerful way to reducing that destructive feeling of being alone. NHS offers free counselling so sign up to that!
- If your doctor doesn’t listen, seek a second opinion. Trying to manage your pain firstly, will allow you to communicate about it better.
Acknowledge that that these may be small steps, but understanding what you’re going through better and feeling more empowered to do something about it is important.
Importantly, and finally, understand that the pain is yours and you can’t always forever and always impose it on other people. They have their own lives. When my pain was most intense I struggled to care about my friends’ problems. Mine were so much bigger! Right? But that didn’t make me a good friend. Make it about other people sometimes. Rebalance your life.
I hope you have many no-pain or at least low intensity pain days ahead of you.
I wish you all the best on your journey. Remember you’re not alone. Take care of yourself. There’s hope for endo-pain sufferers.
- Pain: New ways to find relief without opioids. Scientific American Mind: May/June 2017: 28 – 35
Just wondering if anyone else has found cutting out animal products (essentially going Vegan, although for health not ethical reasons) helpful? I’ve been cutting down gradually and my pain and bloating have improved dramatically. The less I consume the better it gets, and if I’m naughty and have ordinary milk in my tea rather than soya, back comes the pain. Might just be me!? Thanks, Alison
LikeLiked by 1 person
Hi and thanks for taking your time to contribute. I have moved mostly onto a piscaterian diet (mostly vegetarian with some fish). Some say to avoid soya products as they can contribute to inflammation. Also, if you have iron deficiency aenamia, vegan diet can be very hard to maintain. What are experiences on that?
I must be lucky in that I don’t experience ill-effects from Soya, but unlucky in that I do from cows’ milk.
I’ve had my bloods done before and during attempting these dietary changes and nothing is amiss, or very different, however I do take a strong multi vitamin daily (I also suffer from ME/CFS which the vitamin helps).
It’s hard to say what might work for someone else, I was just wondering whether my findings were unusual?
I’ll bear in the mind the advice re soya, and see whether I experience any side effects if I up my intake – thanks for that!!
I’ve been mildly anaemic for years, the diet has had no impact on it one way or the other.
It’s such a mine field trying to figure out what’s best.
Thanks for your blog, it’s been a big help to me and no doubt countless others.
LikeLiked by 1 person
I definitely agree with you that a no- or low-meat diet helps. And whatever works, keep doing it.
The bloating, inflammation and arthritic joint pain for me comes from sugar. My GI doctor put me on a strict diet before my endo diagnosis and it helped, because I also had developed IBS . I lost a lot of weight too! Gluten free, dairy free, sugar free. It is called FODMAPS. Some veggies and fruits have higher levels of fructose , sucrose etc. different kinds of sugars, so I try to only eat the ones with the lowest amounts of sugars. When I cheat I feel the difference within hours. I have also developed terrible eczema which gets inflamed from the sugars. =(
I just came across this and I can completely relate! I have dealt with it for years, tried over 10 different kinds of birth control to help with the pain, but of course, no relief. So my gyno suggested the Mirena. I was very nervous about it as I really wasnt thrilled about a random object there. She also said she could go in and burn the endo off for the 2nd time. So, last April I had the laproscopy done and Mirena put in as well. I cant believe how well this has worked! Ive not had a period since last April and I dont get that excruciating pain. I will have slight cramp here and there but definitely nothing like before! I hope you find some relief! 💙