Thursday, 13 March 2014

The Silence on Endometriosis


Bringing an end to the silence on endometriosis


Wearing a yellow ribbon for endometriosis this March. 


March is international endometriosis awareness month. Yesterday, Thursday 13th March 2014, marked the first ever world march to raise awareness of endometriosis. You can check it out here. People in over fifty-three cities around the world took to the streets to inform and educate people about a debilitating illness that one in ten women will face in their lifetimes. Often mistaken for normal menstrual cramping, endometriosis can go undiagnosed for years, with devastating repercussions later in life.

The silence on endometriosis is intimately linked to the silence on menstruation, perpetuating a culture of shame that affects the health and freedom of women in the developed and developing world.

As another International Women's Day passes, I have been getting together with South African wordsmith and advocate Estelle Jobson, board member and Director of Special Projects, International Relations, for the Endometriosis Association here in Geneva, Switzerland, to interview her about her work. The Association is based in the United States but does work internationally. 




'If we can raise awareness and general knowledge of symptoms, we can make a difference. People know so much about multiple sclerosis, about diabetes. So, why do they know so little about endometriosis?'
Estelle Jobson 


You may be familiar with the work of American scholar, Dr. Brené Brown, whose work on shame and vulnerability is renowned worldwide. You can watch her on TED here. Dr. Brown proposes that
shame is the intensely painful feeling that we are unworthy of love and belonging. It's the most primitive human emotion we all feel - and the one no one wants to talk about. If left to its own devices ... shame can destroy lives.

You put the same amount of shame in a petri dish and you dowse it with empathy, you've create an environment that is hostile to shame. Shame cannot survive being spoken. It can't survive empathy. 

Furthermore, if shame can be voiced, it can be transformed into something incredibly powerful. The first bit of advocacy I shared with Opening Lines almost four months ago was a piece on the human trafficking awareness-raising activities of Nepali NGO, POURAKHI. Founded and run by returnee migrant workers, POURAKHI have taken awareness raising into their own hands to protect others from the pitfalls of unsafe migration. These women set shame and stigma aside to put their negative experiences of human trafficking to positive use, protecting others from pain and mistreatment. You can read about this work in Human Trafficking: Learning to Listen.

Estelle's work with the Endometriosis Association follows a similar thread. The organisation was founded by endometriosis sufferer, Mary Lou Ballweg, thirty-four years ago. In the same way that Estelle became extremely knowledgeable following her diagnosis, Mary Lou now co-authors medical articles with scientists on endometriosis and orchestrates important research. The Association has a research program with the Vanderbilt University School of Medicine in Tennessee, looking at triggers of inflammation and ways to reduce the chances of passing this illness on to offspring. 

The Association shares their literature with medical professionals working in the field and patients alike. They have a range of brochures written for patients, translated into over thirty languages. The Association endeavours to translate into languages where there is limited literature available for women, as well as into languages where there is greater availability. It aims to reach those women who are told that they have this illness but are sent home with nothing to read, nothing to inform themselves, no way to broker this bad news. 

Coordinating and updating these brochures takes time and energy and relies on specialist doctors familiar with the illness working on these translations. As the Association is a non-profit organization, many are working in a voluntary capacity. Estelle has worked on the Association's stand at the annual ESHRE medical conference in London, Rome, Istanbul, and another congress in Montpellier. She is looking forward to the next ESHRE event coming up in Munich this June. This entails three days of talking to health professionals in multiple languages from 8am to 6pm, in each case trying to gauge their understanding of endometriosis, their level of awareness, and their attitude towards the illness. 


percorso


Estelle describes her experience of coming to terms with her condition as percorso, the Italian word for the path one is on.  Her mission to educate and inform other women springs from her own experience. She told me the story of when she was first diagnosed with endometriosis. As her doctor had given her no literature on the subject of the illness she had been diagnosed with, she went to a book shop to buy her own. 

'I was so ashamed and upset by the process, I couldn't look the cashier in the eye. I wanted to hide the book in my bag so no one would see I had it with me. That's where you start,' she said, 'with this feeling of stigma, shame and ignorance, of being alone in your illness.'


Here is Estelle with that same book in Geneva this 2014. She recommends literature available at the Association's website, here.



As part of our interview, I asked Estelle to tell me a bit about her percorso, her journey from diagnosis to advocacy. We talked a bit about the challenges Estelle has come across as an advocate so far.

In my work as an endometriosis activist, I have encountered a lot of stories from women who were dismissed when they reported their pain, told that perhaps they need anti-depressants, that they're not coping. Some have been completely misdiagnosed. I have known women given medicines for completely different illnesses, women who have been told to have hysterectomies, but hysterectomy is not a cure for endometriosis, and neither is pregnancy. There are women who have been told by doctors that getting pregnant will take their illness away. What happens when you get pregnant is that the endometriosis goes into abeyance, in a sense, and if you’re breastfeeding, quite often, the return is delayed. But certainly pregnancy is not a cure for endometriosis, and giving birth to a child should certainly not be a cure for an illness.
There's a lot of myth around endometriosis that’s shot through by a kind of low-grade misogyny: that women are complaining about this thing that is really their lot in life and that they are drawing undue attention to themselves. Then, of course, because symptoms are a private thing, pain with sex, pain with urination, pain with menstruation, these are not 'nice' things to talk about. For some women it's really hard to talk about them. There are all sorts of social and cultural taboos around menstrual health. In the West, there are fewer. There are cultures in which a girl will only go to a gynaecologist when she’s married - those organs affected by endometriosis only become valid when they are ready to produce offspring. But really, we should be monitoring our reproductive health if you have symptoms way before you get married, long before you're sexually active. There are some girls even as young as eight or ten who have symptoms of endometriosis. Every year that passes with it being unrecognised, and not on the radar, there is lost time and schooling, and damage to internal organs that cannot be undone. The best thing we can do is move away from these taboos and have endometriosis on people's radars from a young age: move away from the idea that menstruation hurts and that it should, and that a part of being a woman is suffering. 
You have to develop a thick skin. The women who manage their illness the best are the ones who get information, join support groups, ask questions, read, prepare to challenge their doctors or keep looking until they find one who understands, and it’s very demoralizing. You have to keep drawing upon these wells of inner strength. One step forward, two steps back. And you hear things that make the mind boggle. How many women I've heard from who were told, ‘You can’t possibly be in that much pain.’ People are asking for hard-core pain medication and being accused of narcotics abuse. It's almost like there's a deep-seated suspicion that women don’t have anything better to do than make a fuss. I know very well from my own experience that if you're feeling good and able, the last thing you want to do is go and spend your time and money fabricating an illness in a doctor's room.
 My doctor said recently that women with endometriosis are often seen as very 'difficult' patients. He knows that they are difficult because they are unwell and have been unwell for a very long time, have suffered a lot. It has affected their life, their sexual life, their working life, relationships, reproductive life, everything. (A short film on endometriosis made with doctors in Geneva is available in French, here). 

When did you become an advocate?


I joined the Italian Endometriosis Association not long after my diagnosis. There was an active support group in Rome. We met once a month, everyone had a slightly different story to tell, of what they’d done, what medicines they had tried or not tried, fertility issues, whether they had had children, adoption, tried IVF, etc. Being part of that group boosted my morale tremendously. I started to learn about my illness. I learned that endometriosis is part of a whole area of research on environmental poisoning, the phthalates, dioxins, toxins that have ended up in the food chain, products we are applying to ourselves that are poisoning us and can trigger inflammatory illnesses, like endometriosis. This is part of a greater discourse on environmental pollution and epigenetics, which are both topics I’ve become very interested in now.

The question I asked myself in the beginning was what had I done to deserve this, what bad thing had I done to my own body? Now I’ve moved away from that to ask, 'What are we doing to our environment that we set up conditions that can trigger irrevocable illnesses?' 
That's when I started to do some volunteering at a medical conference for the Endometriosis Association. I offered to volunteer for them at conferences, and that’s what I’ve been doing every year since. In time, I was invited to become a board member and given the portfolio of International Relations.  




What are the problems surrounding the diagnosis of endometriosis? 


What’s important for people to know is the standard diagnosis time is six to twelve years. Some people take up to twenty years. These are key years of your life, your early twenties, thirties. Some women even get it in their teen years, missing out on formative schooling years. These are the years that form your life and the relationships you choose and family planning choices you make, your career choices. A lot of women lose out because they are spending time and energy hunting for a diagnosis, and are debilitated by the illness they don’t necessarily know they have. It’s not that life rolls along smoothly until you get that diagnosis. You struggle throughout that time to get answers and to keep your life on track.


Was there an earlier time you should have been diagnosed?


I was diagnosed when I was thirty-six, and symptoms started when I was thirty, symptoms which should really have been recognised by doctors. But what I think would have been more important would have been to have had endometriosis on my radar in my teen years, when I learnt about menstruation. Now if I look back I can see that I had symptoms in my teen years. I had, sometimes, not always, quite severe period pains, which was considered quite normal. 'Deal with it,' the doctor said, 'take some painkillers, get a hot water bottle.' In fact, there’s been some quite interesting research on dysmenorrhea by Dr Karen Berkley and how that preps you for a life of pain. (You can read a great article from Karen here). We think pain should be tolerated, accepted, and seen as normal for teenage girls. Perhaps endometriosis should have been on my radar. I couldn't necessarily have had a diagnosis then, but I should have known about it. That’s partly why there is this work being done raising awareness of endometriosis, so girls can say, 'I've heard about that, maybe I have that, I want to read about that'. Perhaps they can even go to doctors themselves and explain their symptoms, instead of it being pulled out of a hat by some expert years later: a condition they've never even heard of.
I should have had it diagnosed in my twenties. I had spastic colon, really extreme irritable bowel and digestive issues, which is typical of endometriosis, one of the standard symptoms. Even then somebody could have said, 'Ok, we think this is spastic colon, but put endometriosis on your radar.' Between thirty to thirty-six years old I had some very distinctive symptoms, that if someone described to me now I would say 'There is a pretty good chance you have endometriosis, look into it.' If we can raise awareness and general knowledge of symptoms, we can make a difference. People know so much about multiple sclerosis, about diabetes. So, why do they know so little about endometriosis?


How can girls differentiate between a normal standard of period pain and symptoms of endometriosis? 


There may be some pain with menstruation, in and around and before, but that pain should not be debilitating. Women should not be missing school, they should not be missing out on their lives. The pain should certainly not be excruciating. Menstruation should be a normal part of life. The statistics are that ten to fifteen percent of women have endometriosis, and in societies where there is a lot of environmental pollution, those statistics are said to be higher, twenty percent when there are higher levels of dioxins in the food chain.

I know there are growing fears in medical circles of internet self-diagnosis, but do you believe that educating and informing young women about endometriosis could actually create a constructive dialogue between doctors and patients?


Yes, that could be productive. I’ve heard of a lot of women who had endometriosis, but at an early stage were told it was nothing, just normal. In fact that happened to me, I was told, 'Oh, no problem, that’s standard.' But it’s not. One of the key giveaway symptoms of endometriosis is pain with urination and pain with bowel movements and before I had a bowel movement, I had a short spell of intense pain. I had to sit down, I would faint otherwise. So I went to my doctor who said it was nothing. Now I know that it was probably peristalsis pushing against a large clump of endometriosis (an endometrioma in my ovary, in this case). I thought I had nothing to worry about, even though it was debilitating when it happened, and if it would happen when was walking in the streets, it would leaving me holding on to the railing, not wanting to faint on the street. So I chose for a while not to worry. Now, if someone tells me that happens (which doesn’t happen terribly often, being that people don't talk much about their bowel movements!), I would say that it can be endometriosis, it can be peristalsis pushing against a lesion of endometriosis or it could be endometriosis on the bowel. 

Could you tell me a bit about your experience of living with endometriosis?

If I was to answer right now, it would be that my experience is pretty rosy. I’m in the hands of an endometriosis specialist and I’m very informed. I've read five or six books about endometriosis, I'm taking medication that slows down the process and I just had surgery six months ago, so I’m in a really good spell. This is all at the end of a long path of dealing with doctors who knew a lot less, getting to a specialist who really knows what he’s doing, whom I found through the endometriosis 'Sisterhood', as we call it. Through this network we can ask, 'Is this doctor unfriendly, uninformed, or someone who knows about our cause and will care for us and about our wellbeing?" 
That's how I am now. In good hands.


But it's not how I’ve always been. I’ve had six years of a lot of pain. If I look back to my twenties I was tremendously successful, productive, winning scholarships, had two jobs, was studying at night, publishing articles, doing community work, and able to exercise. Then in my thirties, everything started to slowly drop. My baseline dropped lower and lower and lower as a result of endometriosis, at first as a result of not being diagnosed and then of not being in the hands of really good doctors.

How does a woman with endometriosis typically handle her condition?

She organises her life around her cycle. So if she’s able to predict it, she’ll arrange not to do certain tasks, socializing, sports, she might not be able to exercise. So she’ll arrange to do her more serious work during the first three weeks of the month, and count on being sick in the last week, making no promises to anybody over that time.  
What I felt over the years was that I was forced to totally change my relationship with my body. This is a very difficult process psychologically, because before you might take your body for granted. You might think it’s working with you, like you can control it, you can make it what you want it to be, beautify it, hone it, train it, but with endometriosis it’s almost like your body is working against you. It's having a big disabled child to look after: you have to take it to the doctor, feed it properly, manage it, spend all your time and money on looking after this big child which is your own body.
There’s a theory called a spoon theory, something that people who live with chronic pain talk about, almost an analogy. Imagine you’ve got twenty spoons every day that you can take away. You’ve got to make it to the end of the day. You take a shower, that takes a spoon, it takes energy. You go to work, that takes energy, every chore takes energy. You’ve got to say no to things, you’ve got to say no, and people don’t understand that necessarily. You’ve got to say 'I can’t do that, I’ve only got two spoons left and I’ve got to get home and put some food in my face. That’s going to take up my last two spoons.' It’s how people deal with chronic pain. You only have a certain output and you have to eke out the day on that pain tolerance.
I found a lot of comfort and strength in meeting other women who suffered from the same thing, as it destigmatized it for me, because in the beginning I felt very stigmatized and ashamed. I didn’t know other people, I was the only one in my family. It was a difficult and long process. As it went, I had to change things in my life. I had to change the sport I did, I had decreased mobility, I couldn't stand or walk much. I had to really choose to what I would devote my standing energy to. I had limited energy. I devoted that to getting to work and back, to doing my groceries. If I was invited to parties, I would just have to sit in the corner on a chair because I couldn’t stand up, so I’d look like I was sulking. Sometimes just managing fatigue, even if you have painkillers and other strategies, it’s just exhausting, so that’s what it's like for a lot of women with endometriosis. Simply bending down to pick things up, vacuuming is excruciating, carrying things, picking up a child – I would do it occasionally, but the thought of it on a regular basis was exhausting.


Do you think that affected your approach to motherhood?

I had chosen before I had endometriosis not to have children, so for me that was not a big issue, but for most women that’s possibly the biggest issue. Because it affects one’s fertility. Around forty percent of women with endometriosis never conceive, and if they do, they may have a difficult time of it. Sometimes they have miscarriages, and preterm birth, and sometimes there is a fear that she will have a girl and that girl will have endometriosis too, which happens. It can run in families. From my point of view, I was childfree by choice, I just knew I couldn’t do it. I can’t do heavy housework, I can’t do heavy lifting, can't carry heavy things and those are parts of being a mother.

How does endometriosis affect you financially? 


I’ve spent fortunes of money on operations and seeing doctors. I’ve lost income,  and turned down positions that come up that I just don’t have the energy to take. I can’t do work travel. I got this feeling that I’m paying now all the money that I should be saving for my old age. I’ve had quite severe endometriosis, I had stage four 'deep infiltrating endometriosis', needing several surgeries. At the same time I’ve had a working life, stable relationships. I've made friends with wonderful women who have endometriosis. And I've lost all sense of stigma. I can talk about it to anyone.
But for some women, things just completely fall apart because they are so disabled by their illness and by years of not getting the care they need, by not having the right diagnosis.





How does the pace of medical progress affect sufferers of endometriosis? 

The silence about endometriosis is more troubling. A good number of people don’t know about it. Percentage-wise, a lot more women have endometriosis than people have MS. For the numbers of women that have it, its surprisingly poorly understood and documented. There is no cure for endometriosis to date, only compromising 'treatments', some of which are intolerable to certain women. We take pain pills, we take hormones, we have operations, we 'adapt our lifestyles', but we desperately need a cure. We need to root for research to be funded to find us a cure. 



Four months worth of medication, taken daily, costing hundreds of dollars. This is not medication that all women can afford.



Endometriosis lives off oestrogen. Oestrogen is what we need for our bones, our skin, our heart, our gums, our hair, and for ovulation. Typically, when an endometriosis sufferer brings her oestrogen level down, her condition improves. The medicine Estelle takes serves to reduce the oestrogen in her body so if there's endometriosis anywhere in her abdomen or pelvis, the growth will be slower.

One interesting point Estelle raised was the idea of guilt, of penance, of wondering what she had done in her life for her body to betray her.



Why me?

Even if you're the biggest atheist in the world, the question still rises: what did I do to deserve this? I had a very traditional Protestant upbringing with the belief that if you are good and responsible, you'll be rewarded, and if you're not, you won't be. In moments of great pain, this is a difficult mindset to escape. Of course there are health conditions that are self-induced. If you drink too much you might get cirrhosis of the liver, or gout. If you smoke, you might get cancer. Then part of me thinks 'You did it to yourself.' I didn't do this to myself, yet my suffering is intensely personal. It's a combination of bad luck, epigenetic chance, environmental poisoning, and who knows what, something that happens in utero, while your abdominal pelvic cells are forming. 
There are a lot of theories for why people get endometriosis. Nobody has very clear answers, the mystery is frustrating. I remember asking myself, 'Why me? Why none of my sisters? Why no one else in my family? Have I been singled out? Am I marked?' 
There is also the matter of explaining. I've become quite immune to it, but in the beginning, when I was trying to explain to somebody what was happening, I felt embarrassed, ashamed, and very disappointed by their lack of comprehension. But now I go on the assumption that people are uninformed, and that they will still say unhelpful things like, 'Oh but you're better now'. 
It's a process, of educating yourself, and educating those around you.


I would like to end with the opening lines of Estelle's Letter To Madame (Right) Ovary, written after her oopherectomy, the surgical removal of her right ovary. Writing this piece was part of what Estelle described as a process of completely rediscovering her body following her diagnosis. A Letter was translated into Italian and won a small writing competition before being performed as a dramatic monologue in Rome, Italy.



'To the dear late Madame Right Ovary,

When you were here, alive and pulsing, I overlooked you. No, worse! You were dismissed as a harbinger of trouble, an omen of flux and flow. As for those eggs you dispatched, I took a dim view: eggs, sent to bewitch giddy sperm, those clouds of tadpoles I fended off throughout my twenties. And ovary, you and I know that very thing a single career girl doesn’t need is an untimely pregnancy... '





I'm wishing Estelle the best of luck in her campaigning this 2014. If you are living in Geneva, The University Hospital of Geneva and the Association Suisse de Soutien Contre l'Endométriose are holding a conference entitled, 'Reconnaître et traiter l’endométriose en 2014' (Recognise and treat endometriosis this 2014), on Wednesday 19th at 5pm in support of endometriosis awareness raising month. Details can be found at HUG's website, here



Thanks for reading, and if you know anyone who could benefit from this article, please share with email, Twitter or Facebook using the tabs below.


15 comments:

  1. I live in the US. I am an endo-sister. How can I help? I am a HUGE believer of the need to awareness. I was not diagnosed by a Dr or a nurse despite my endless efforts for over 7 years to find out what I knew was seriously wrong with me ... numerous doctors and visits to the ER, dismissal after dismissal. Finally a friend diagnosed me - my co-worker a fellow travel specialist with no medical education other than being an endo patient herself. She had no shame of talking about it, she helped me find a specialist and possibly save my fertility. She had no shame of talking about it ... I want to scream to all four winds. Please help me help others. Thank you! Raquel DeRichs

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    1. Hi Raquel, thanks for reading and for sharing your own experience. Your friend sounds like a wonderful person. If you get in touch with Estelle at endo.activist@gmail.com she can help you start raising awareness.

      I understand that this condition is extremely difficult to cope with and the need for awareness is felt by both doctors and patients. I asked a friend of mine who just started practicing this year, Dr. Helen Young, for her experience of endometriosis so far. She said this:

      'My experience of endometriosis is that doctors find it very hard to treat.It can be a really debilitating condition and has significant psychological and emotional aspects to it. Some doctors are really good at acknowledging this and managing patient expectations. Some can be very insensitive and are really poor at managing the depression and fatigue that can often be associated with endometriosis.

      Patients really vary in their views on treatment some are really keen on having surgery, others want to try hormones and pain killers first.

      The strange thing is that the severity of disease in terms of the amount of tissue found in the wrong place doesn't always correlate to the severity of symptoms patients experience.

      From a scientific point of view it's really interesting - we don't really know why it happens. There are a few theories but nothing that has been proven. I imagine this can make it harder for patients to understand their condition and come to terms with it.'

      Good luck on your endo journey, Raquel. Wish you all the best, Helen

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    2. Hello Raquel,
      You said it yourself, you got help from a fellow endo patient, after numerous disappointments from doctors/ER, and so on. By talking and sharing your story, telling other women, you are already going to contribute to breaking the taboos and silence and perhaps help somebody self-diagnose, when the had never heard of endo. I talk to friends w teenage daughters who have started menstruating and ask if their daughters complain of pain. (Just in case, in their family, it is seen as normal.) I also think it can help to become a paid-up member of a patient organisation, such as the Endo Association and then to offer yourself as a volunteer. Get involved, offer to write something for the newsletter, to help at info/awareness events. Ask your library to order the endo books, for their shelves. Find endo sisters in your city and connect. One thing leads to another, as did this. With me blabbing about my condition, Helen got interested and asked to interview me. Now we've got people from all over the world reading this article. I really believe in one thing leading to another. There is a lot going on in the facebook support groups.
      Best wishes and healing
      Estelle

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  2. What an excellent article. Which does exactly what it is about, begin to educate. Thank you Helen and Estelle. I wish you luck and a painfree future Estelle.

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    1. Thanks, Cathy, for reading and sharing your thoughts.

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  3. Thank you Helen Patuk for the time and effort you've put into writing this excellent article and to Estelle Jobson, for being such an articulate and forthright subject. As a male, it's given me insight and understanding about a problem that does not directly afflict me. I hope your article gets widely disseminated and read by many.

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    1. Thanks for your thoughts, reader, that's great to hear.

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  4. Excellent interview, Helen! It's something I know very little about, but it's something that will be very relevant to a friend of mine who's been seeing various doctors about related symptoms, and finding them really very unhelpful. I'll be sure to pass it on!

    Now I'm going to go look up some of those other articles you've mentioned! Much love xxxx

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    1. That's good to hear, Cait, I hope your friend can find answers soon. Lots of love back to you xxx

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  5. I am profoundly moved by the lucidity of this presentation. I recognize Estelle's courage, determination and perseverence in the presence of an exhausting and painful medical condition. I'm aware of the coherence and clarity of the presentation. From Estelle's Mum

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    1. Thanks for your words and for bringing up such an inspiring daughter, Estelle's Mum!

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  6. Thanks, Mom! If you had not set us the good example, I might not have had the courage to stomp forth into the intimidating realm of medicine and read those darn books myself (including, for example, 'Laparoscopy Made Easy', for surgeons) and say, 'Well, this service from doctors just isn't good enough, something must be done'. So thanks for setting the example!
    E

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  7. Great interview, Helen, and great courage, Estelle!

    I still find it shocking that endo is so prevalent and yet so invisible. Perhaps the shame is society's - even in the 'developed' world, we are so prudish about the natural functions of women's bodies that we can't even talk about normal menstration, let alone discern when menstruation isn't the normal, tolerable sort, but the debilitating sort that doctors shouldn't just dismiss.

    Keep going with the educational campaign, Estelle - it's important work!
    Megan

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    1. Thanks very much, Megan, I think a lot of the invisibility around endometriosis is encouraged by an outdated reluctance to talk about menstruation. Estelle is indeed doing incredibly important work!

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  8. I am so grateful for this article. And for the information and links within. The thought I'm suffering from Endometriosis appeared in my mind already several years ago. But when I asked my doctorS for help I was told there is nothing wrong with me and eventually got sent for Psychosomatic Physiotherapy.. So now everyone thinks I'm just a whinging weakling. I'm going to start reading up on everything you mentioned here and educate myself. starting with changing my diet today. THANK YOU!!!!

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