Syl Freedman: "Dear CNN, there is NO 'absolute cure' for Endo."

If you’re suffering from Endometriosis or experiencing symptoms, always seek medical advice from your doctor for diagnosis and treatment options.

Syl Freedman suffers from endometriosis – and is a campaigner for better awareness and treatment options for women. She was furious when she saw a news report on CNN about Lena Dunham’s experience with endometriosis – so she wrote to the network to set the record straight… 

Dear CNN, Nadia Kounang and Dr Scott Sullivan,

Last year, my absolute hero, Lena Dunham, did something incredible for Endometriosis. She got the world talking about it. Dunham announced that she’s been forced to pull out of the promo tour for her hit TV series GIRLS due to an Endo flare-up. I was heartbroken for Lena. But, as the Co-founder of EndoActive – an Endometriosis Activism Group – I was grateful and proud that she had shared this information on social media and thrilled that the media had picked up on it. Any publicity for Endo is good publicity, right? Wrong.

I am absolutely horrified by what you, CNN, have published. You had not only an opportunity to report on an under-publicised, insidious disease that is destroying lives and desperately needs to be taken seriously, needs attention and needs funding but you had a responsibility to report factual, evidence-based research supported by compassion, care and a positive message.

To my horror and the horror of the thousands of women I represent, you have grossly missed the mark and published instead an unsavoury, chauvinistic, factually incorrect, medically and morally irresponsible piece of writing that helps no one and in fact undoes so much of the hard work that EndoActive and so many others are doing daily.

Before I go on I have to alert everybody that a hysterectomy is NOT a cure for Endometriosis, as Dr Sullivan has claimed. Quote from the article follows:

To Nadia Kounang, your work is simply lazy. Regardless of the fact that the doctor you interviewed is sexist and ill-informed, you should’ve been cross-checking with other organisations. Then you would’ve realised that half of what you’ve reported is senseless and untrue. I’m sure you’re a good person with good intentions and I want to believe that you thought you were doing a good thing with this article. But I see no evidence of investigative journalism, no attempt at checking facts and no interest in representing the sisterhood.

As a woman, women in your family and friendship circle WILL have Endometriosis. You at least got the stats right with prevalence… sort of… so don’t you owe it to those women in your life who are suffering to use your power responsibly? Suffice to say you absolutely blew it and for them, I am so sorry. I truly hope that you rectify your mistakes by writing the best god damn article on Endo and getting as much publicity for it as you possibly can. I would be more than happy to help.

To Dr Scott Sullivan, to think that you are advising and even encouraging women to undergo yet another surgery to remove their reproductive organs because that will CURE them of disease makes my blood run so hot if it landed on you it would sizzle. To think that you are an Associate Professor at a Medical University teaching students fills me with dread.

I am almost at a loss for words with you but only because I have so many choice ones I don’t know where to start. I feel sickened that you have the type of power that you do. I am devastated you were chosen to comment. I pray that you read all these comments and absorb them. The last thing we need is for outdated myths about Endometriosis to be perpetuated.

I have issues with the entire article, if you can call it that. What you claim to be true is unbelievably damaging.

But among the many foolish things you said, Dr Scott Sullivan, this is one of the most misleading: “Surgery can be used to remove the cells. However, the only absolute cure, said Sullivan, is a hysterectomy.”

Thanks to the barrage of comments on CNN’s Facebook page in the last 24 hours, this quote has been changed to “Surgery can be used to remove the cells. For some of the most severe cases, hysterectomy may be the only cure, said Sullivan” which makes me wonder, who is lying here?

Firstly, there is NO “absolute cure” for Endo. Hysterectomies may relieve the symptoms of Endo for some women. Fact. For others, it does not help. I have read thousands of women’s stories. Many of them have been told that a Hysterectomy will cure their symptoms. After going through with the surgery, they are devastated to find that it has not helped.

The University of Maryland Medical Center states that, “Hysterectomy, the surgical removal of the uterus, may be recommended in severe cases of Endometriosis, but it does not necessarily cure the condition.”

Doctor Sullivan, I would like know, if a woman has Endometriosis on her diaphragm or her liver or her lungs, how exactly would she be cured by the removal of her uterus? Perhaps you have lost touch with your patients but I have not.

This week I talked to a woman whose life has been ruined by having a Hysterectomy as it caused her Pudendal Nerve Entrapment. She was unable to sit down for 2 years. Her story is not uncommon.

This morning, a woman emailed me telling me she had a hysterectomy at age 36. “I wonder where I can get information on Endometriosis 40 years on?”, she asks me. 40! Years! Later! She is still suffering and still searching for answers. Worse still, doctors are dismissing her. They don’t believe her pain or that it is related to Endo. THIS WOMAN IS 76 YEARS OLD!

It is frightening how many women are told by doctors that their Endo will be cured if they a) have a baby or b) have a hysterectomy. THIS IS NOT TRUE! There is no ‘cure’ for Endometriosis and what relieves pain for one person may not work for another. There are however lots of different treatments that can assist with pain and having a multidisciplinary approach to pain management is fantastic and helpful. Most people don’t understand this so let’s inform them!

Then there was this… "For those who don’t want to use birth control, they can use medicine that actually shuts down your body’s hormonal access. “But then they feel like they’re menopausal. They feel dry, lose sex drive," said Sullivan.”

By way of not mentioning any other side effects you seem to be saying that the most significant effect of medication to treat Endometriosis on women is that, “They feel dry, lose sex drive,”. This is insulting and sexist at best.

Reading that makes me SO pissed off! Sure, that may be a side effect of some medications for some women. But you and Nadia have left out the heart – you’re missing the point.

Compared to the agony, infertility, inability to work or go to school or socialise, the cost, debilitating effects on mood, heavy bleeding, digestive disorders, migraines, chronic fatigue and SO many other things that prevent us as women from living our lives and achieving our full potential… Having a dry vagina and a low libido is a relatively minor problem (by comparison) and I dare say a typically pig-headed, chauvinistic male thing to place the most importance on. Do you think women who cannot sit or stand due to pain, who soak their bed sheets in blood each night, who can’t get a degree… Do you think their biggest concern is that they can’t get wet? I will tell you right now that it isn’t.

There are young girls not going to school. Saying that women younger than 30-40 aren’t affected is completely false. There are teenagers and young women taking their own lives because of Endo. There is heartbreak and relationship breakdown over infertility. Women and girls are living in pain and missing out on life. Why did this piece of information even make it into a relatively short article when there are so many more critically important things to say that are simply left out? A bigger risk with certain medications in my opinion is their effect on mood and happiness.

So much is left out of this article and so many other things deserve a mention. CNN had a chance to raise some serious awareness about Endo but they blew it. A much needed but sadly wasted opportunity.CNN, I do hope you delete this article and write a well-researched one or better yet, a series on Endo like the Guardian has done so beautifully. A huge thank you to Lena Dunham for doing such a great job of raising awareness.

For those of you searching for up to date, evidence-based information and research on Endo from 13 of Australia’s top specialists plus great advice on how to manage your pain from someone who actually has Endo (that’s me) then head to EndoActive’s website and grab our DVD on Endometriosis.

Sincerely,
Syl Freedman
Co-founder EndoActive Australia & NZ

Mamamia's Endo Awareness Week, curated by Founder of EndoActive Syl Freedman, shines a light on a disease suffered by one in 10 Australian women. To read more from Endo Awareness Week, click here. If you'd like to find out more information on Endometriosis, Syl's story or Endo Active, visit endoactive.org.au and keep up to date on their Facebook page.