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3Aug

Endometriosis: Silent, Yet Deadly

Endometriosis affects one in ten women around the world, yet little is known about the cause of this debilitating condition which can also render its sufferers infertile. I spoke to experts and victims to shed light on a neglected and potential killer of women in their prime.

Adeliade DamoahAdelaide Damoah is an artist of Ghanaian-British heritage. However, she has not always been a full time artist. Damoah was doing well in her career in the pharmaceutical industry until endometriosis, a much misunderstood and little-known medical condition forced her to take a break. Compelled to give up her profession due to the incapacitating condition she was battling, Damoah redefined herself through her art when her illness became the basis of a mind-blowing series of heartfelt paintings, depicting her pain in a kaleidoscopic form. The negativity of her experience became the catalyst for her artistic expression.  Today, Damoah is making a name for herself in the art world with her unusual artwork, which she also uses to raise awareness about endometriosis.

However, many women are not fortunate enough to be in Damoah’s position. Based in the UK, she has access to some of the best healthcare in the world, providing treatment that will help reduce the crippling pain endometriosis inflicts on its sufferers.

In other parts of the world, the stark difference is that they are still waking up to the devastating effects of endometriosis. Described as a condition where tissue similar to the lining of the uterus (the endometrial stroma and glands, which should only be located inside the uterus) is found elsewhere in the body. Its lesions can be found anywhere in the pelvic cavity, ovaries, and fallopian tubes and in rare cases, inside the vagina, bladder, even in the lung, spine and brain of its sufferer. Its most common symptom is pelvic pain but it could also have devastating implications for those affected, including infertility. At present, it is estimated 30 to 40 percent of women affected by endometriosis may not be able to have children.

Dr Krina Zondervan, a genetic epidemiologist and fellow at the Wellcome Trust Centre For Human Genetics (WTCHG) and The Nuffield Department of Obstetrics and Gynaecology (NDOG) Oxford, England. She is currently leading a multidisciplinary research group working on understanding the epidemiology of endometriosis: its prevalence and impact across the world. Zondervan said: “In many countries, the condition is hardly recognised and many women never get a diagnosis. We know very little about the onset of endometriosis. What we have seen is that women who are more exposed to menstrual bleeding over their reproductive life time seem to have a slightly increased risk of endometriosis.”

Lone Hummelshoj is the chief executive of the World Endometriosis Research Foundation (WERF.) Founded in 2006, the WERF is based in the UK and the first of its kind in the world. It is currently working with 32 centres in 20 countries including, Egypt and Nigeria on the African continent. Its aim is to foster research into endometriosis in order to improve knowledge and treatments in the hope that one day, no woman is crippled or prevented from having children by the disease. It also anticipates a time when endometriosis can be prevented.

A former sufferer, Hummelshoj explains that she suffered for 22 years and it took 11 years to get diagnosed and five surgical procedures to rid her of endometriosis. While there are no known causes for endometriosis, she adds that one of the reasons it takes a long time to diagnose the condition is because “many women do not realise for cultural or societal reasons that distress with menstruation for example is abnormal. Discomfort is ‘normal’ but ‘distress’ is not. This means that most do not seek immediate medical help until the use of over-the-counter medicine has been exhausted. The second delay at primary level is that primary physicians dismiss menstrual distress or other cyclical pain and forget that the pain could be due to endometriosis. Hence, there is an added diagnosis delay before women are referred to a gynaecologist.”

According to Hummelshoj, in most countries, developed or not, endometriosis is still not well known at all and many millions of women suffer in silence and do not know that there may be treatments. Professor Hany Abdel-Aleem works at the Department of Obstetrics and Gynaecology, Assiut University Hospital, Egypt. He is a collaborator with the WERF and a participant in a new study recently commenced by the Foundation to assess the direct and indirect effects of endometriosis on society and women. He says to his knowledge, there is no documentation in Egyptabout the number of women who suffer from endometriosis. Hence, its prevalence among women in the country is unknown. However, he encounters women with the condition when investigating infertility and cases of chronic pelvic pain

Dr Bukola Fawole is a consultant obstetrician and gynaecologist at the University College Hospital, Ibadan, Nigeria. Like Abdel-Aleem, Fawole is also a collaborator with the WERF and champions the Foundation’s research in the country. He said: “The study is the first research initiative in Nigeria and the principal goal is to sensitise colleagues about endometriosis.” Fawole says endometriosis has not received sufficient research attention among the African population and there is lack of understanding about the existence of endometriosis in Nigeria. “The reason is primarily that of ignorance on the part of healthcare providers. The training here does not give due cognisance to the condition. It is sad to note that many a woman with the chronic pelvic pain for instance would have passed through several doctors (while) being treated for pelvic infection.”

He adds that there is lack of support for women affected by endometriosis in Nigeria. Due to the lack of understanding of endometriosis in women, misdiagnosis is rife in most cases. Dr Fawole gives the example of  “a 17 year old, who had acute lower abdominal pain and went to a private practice; she was misdiagnosed and one of her ovaries, removed. However the pain persisted until endometriosis was later diagnosed by his team. Its social impact on her life is that she was forced to quit school and encouraged to get married by her family as part of intervention for the debilitating pain.”

At present, most researchers agree that endometriosis is exacerbated by oestrogen. Hence, treatments currently available for the disease aim to manage the production of oestrogen in the sufferer’s body in order to relieve her symptoms. Though the WERF is currently undertaking a study to determine the socio-economic cost and impact on the lives of endometriosis suffers, Hummelshoj says the foundation understands that “some women with endometriosis either cannot work or need to reduce their working hours. Chronic pain also has an effect on relationships, and we do hear that relationships break up due to the illness the woman suffers from.” Dr Fawole adds that “Where infertility is involved, marriages may break up and social life may be none-existent.”

Hummelshoj,  Zondervan and Fawole agree that the emotional, mental and physical pain endured by sufferers of endometriosis cannot be measured because “emotional and mental pain is so personal and it varies from woman to woman.” But they hope the study by WERF will shed more light on this area.

Zondervan says in order for women in different parts of the world to gain a better understanding of their situation, they need to be informed and empowered with the right information. She added: “We need to raise awareness first, and then train gynaecologists with the specialist skills required diagnosing and surgically treating the disease.”

Zondervan’s point of view is reiterated by Fawole who believes the best way of helping women inAfrica to understand the disease is by “Essentially creating awareness among the populace and to sensitise them about the common symptoms that may be suggestive of the condition, so they can seek care. African scientists must also begin to take interest in the condition and align with colleagues outside the continent in research into the condition. Ultimately, our health systems will have to invest in health technology that will avail our women the necessary care for this condition.”

 

This article first appeared in the July  edition of the New African magazine.

Images: Adeliade Damoah by Ola Shobawale

Artwork by Adeliade Damoah.

Hummelshoj,  Zondervan and Fawole by WERF.

 

 

 

 

 

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18 Responses to “Endometriosis: Silent, Yet Deadly”

  1. Iola says:

    Wow, Belinda, you’ve done it again! Having recently (2 months ago) been diagnosed with endo myself, today I came away from my first follow up appointment and frustrated. It is not only in Nigeria where ignorance prevails amongst supposed healthcare providers, doctors over here are just as bad, if not worse seeing as they have access to education and resources to better equip themselves with knowledge yet fail to exhaust these tools. I’m not having a rant here (okay, maybe a little, but here goes) having had two close friends who both suffered with endo, one battled through the pain and went on to be blessed with two beautiful, healthy children, the other tragically ended up flying out to a specialist surgeon in the States where he performed a hysterectomy, she was only 26 years old at the time. This same friend sought consultations from the UK’s leading gynaeocolgist, but it wasn’t until she started alternative (Chinese) treatment that she really felt some relief from the constant pain, but by this stage it was too late. I’m not totally disregarding western medicine, but I get extremely frustrated when they nonchalantly discard the very basics, namely our diets, as having a profound affect on feeding certain ailments. Primarily, only through my two friends and further confirmation from informative websites such as http://Www.endo-resolved.com have I learnt that cutting out certain foods, namely SOYA (the number one culprit- and to think I’d been drinking soya milk everyday for a few years thinking I was being healthy!), dairy, wheat and gluten- all of which increase prostaglandins , which increases oestrogen, the hormone which plays havoc with endo. Doctors, whose job it is to feed us pills and other suppressive drugs, fail to tell us the basic ways we can heal ourselves or at least ease symptoms by changing our diet. One thing remains apparent, as echoed above, greater awareness and education is vital. Thank you for doing your bit towards this process. God bless you xx

  2. Belinda Otas says:

    @ Lola, thanks for your openness. Believe me, someone who reads this will be grateful. We are often very private about our health for reasons that are totally understandable. I have a lot of respect for anyone who breaks the silence because that’s one way we can help each other. Glad you found this helpful. keep going, take good care of your body and beat this sucker. Bless you real good. xxx

  3. Oluchi Ogwuegbu says:

    Thanks Belinda for this article. Right on point, as usual.
    I’ve known many girls who (im now sure) were/ still are suffering from this ailment, who have been advised to get married early to ‘stop’ the pain and some others who havent even been diagonised properly and are still in pain.
    I guess we have to keep reading up and reading up so we dont get weighed down by sickness… Merci bien.

  4. Belinda Otas says:

    @ Oluchi, thanks for your feedback. It is a sad situation to say the least but marriage is not the answer. Medical care and the right one is the best approach. The misconceptions on some health issues kills sufferers faster than the disease and this is one of such, where a bad remedy leads to heaven knows what. We have to keep reading up and speak up. I think because we are ashamed or embarrassed to talk about our health challenges, many of us suffer even more…that’s another taboo, we must break.

  5. Deborah says:

    Thanks for this article Belinda

    Ignorance is truly a disease!

    I agree with Lola about the lousy doctors we have here.

    I do not think “we” are ashamed nor embarrassed to talk about our pain, what I think is the fact that “we” are not used to talking about a lot of things helps us remain ignorant, but keep on believing in witches and wizards (since that’s the primary course of unexplained illnesses in Nigeria for example) it being the general topic and everyone has his or her opinion, there their knowledge is beyond the horizon…

    What has marriage got to do with it? how can being married make it any better! Help me out!

  6. Belinda Otas says:

    @ Deborah, thanks for your comment and insight on topic…I say we are shamed because of the fear attached to anyone knowing you have to deal with a condition they don’t understand…the shame comes from the fear of what they will say/think/the stigma…that’s what makes us afraid and embarrassed to talk about it, which as you note, stems from ignorance…I have been there, see and hear it all the time….

    As for marriage helping out, I have no idea either, just crazy…

  7. safe says:

    Hi, been having debilitating menstrual pains since i started seeing my period, all the doctors i visited gave me pain relievers, just last year the pain grew worse and extended to my lower back, and for the first time i was admitted into the hospital and placed on drip about three months ago.I did an ultrasound and the doctors said they suspect ENDOMETRIOSIS,but i havent done laparoscopy to confirm it. I am in my mid- twenties, am not yet married and the doctors say probably if i get married and conceive the pain will reduce. But before then can you [lola] please send the names of the chinese herbs your friend took to relieve her of her pain ,through Belinda to me, cos i am almost useless to myself and my place of work..or is their any gynaecologist anyone can refer me to that can do a proper check up on me cos i want to have my babies when i marry..Thanks.

  8. Belinda Otas says:

    Hi Zsefiya, sorry to hear about situation. I am sure Lola can give you some tips as to the natural remedies you could look into. Sorry, I don’t know any as I am not affected by this condition and as such, cannot advice you.
    Lola, pls, are you able to help?
    Thanks,
    Belinda

  9. Iola says:

    Hello All,

    It’s great to see the comments. The stigma is more so rife within black communities – why we are like that, Lord only knows! We are only suffering ourselves, families and (possibly) our existence.

    To Zsefiya – So sorry for the delay. I am not due to see my naturpoath / acupuncturist until the end of the month and so won’t know the full names until then. I’ll be sure to pass on the details to Belinda when I do, however, I would advise you to firstly assess your diet. There are many common factors relating to diet which causes more pain to endo suffers. The internet can be rather confusing, but there are a few useful site:
    (previously cited) http://www.endo-resolved.com/diet.html
    http://relieveendometriosis.com/foods-to-avoid-on-an-endometriosis-diet/
    http://www.womens-health.co.uk/endo6.html

    I would advise you to definitely seek consultation from a Chinese herbalist or a naturopath. There are so many out there so best to go on recommendation or maybe reading online reviews. If you need any support (I’m not an expert and still learning myself) I will be happy to help if I can. First and foremost try to remain stress free. Yoga is great for that and there are certain poses which are good for endo women to practice.

    RE Marriage – yes, the idea is that when you marry, and conceive, this will relieve the symptoms of endo…so men, it seems, do have their uses after all! But the greatest love is self love, so until then…:-)

    All the best, and God bless, Iola x

  10. Belinda Otas says:

    Thanks Iola for this detailed response. Zsefiya, I hope this helps and answers some of your questions.

  11. Stacy Giovanni says:

    Endometriosis can only be successfully remedied through surgery. Old persons should avoid conceiving too to help reduce the risk of this disease. ,’;*’

    Regards http://www.healthmedicinelab.com/wolf-spider-bite/

  12. patience ovueke says:

    iI HAVE BEING A SUFFERER OF THIS ENDO FOR THE PAST 10YRS. LIVING WITH THE PAINS IS NOT AN EASY THING. THANK GOD I WAS TOLD BY A FRIEND TO OPEN THIS WEBSITE THAT I LL FIND SOMETHING GOOD THAT LL BE HELPFUL TO ME. PLS CAN U SEND ME THE CENTRE ADDRESS HERE IN NIGERIA SO THAT I CAN COME FOR TREATMENT. I HAVE SUFFER IN THE HAND OF MANY DOCTOR WHO CLAIM THEY KNOW THE CURE BUT AT THE END NOTHING GOOD COMES OUT IT. FROM PATIENCE OKIEMUTE OVUEKE
    DELTA STATE
    NIGERIA

  13. Belinda Otas says:

    Will have to check for a centre and get back to you. So sorry to hear bout your situation.

  14. FOLA says:

    Pls I have severe endometriosis for 15 years now. It seems to be getting worse every day I hv tried several natural herbs and it seems not to be working. Can Lola tell me where she got her own treatment in Nigeria pls it’s urgent.

  15. Belinda Otas says:

    Hi Fola, thanks for reading and your comment. Iola is not based in Nigeria. However, if you send me an email via my website, I can forward it to her. Hope this helps.

  16. Debbie says:

    pls am with the same problem for yrs now but I need to make babies pls help

  17. Denise says:

    Article is do on point. Thank you! I’ve been suffering since college. My family is from Nigeria and they don’t want to talk about it. I just saw this other article and it’s not just Nigerians who csnt talk about it.

    http://m.huffpost.com/us/entry/5986690?utm_hp_ref=tw

  18. Belinda Otas says:

    I am sorry to hear about your challenges. Hope you are able to get help. There is an Endo centre in Lagos and Abuja, have you tried them?

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