Face Making

Artist Gwenn Seemel’s bilingual blog about art, portraiture, free culture, and feminism.

Raising awareness about endometriosis

2010 . 08 . 11 - Comments / Commentaires (22)

- -—[version française]—- -

Well into the 19th century, cancer was believed to be a venereal disease by many people and no one ever admitted to having it. Today, we all know that cancer isn’t contagious and we’re proud to race for a cure. It’s time for endometriosis to enjoy the same level of public awareness as cancer.



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(22) Comments / Commentaires: Raising awareness about endometriosis

-- Allie -- 2010 . 08 . 11 --

Mine manifested in having a bruised and swollen bellybutton!  They found uterine cells in there - one part of endometriosis is that the cells that line the uterus can escape the uterus.  Usually they attach to the outside of the uterus, contributing to the pain, but sometimes they go elsewhere, the bellybutton in my case and as far as the lungs in others.  No word on any long term effects of this yet, but I’m pulling for you, Gwenn!

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-- Gwenn -- 2010 . 08 . 11 --

It’s a disease with so many potential forms—I find it fascinating and terrifying.  I am so sorry for you and your bellybutton, but happy to be able to connect with you about this!

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-- Jeanne -- 2010 . 08 . 11 --

Hi Gwenn!

Kudos to you for generating awareness about endometriosis! 

Speaking out publicly about endometriosis can be quite intimidating at first.  The struggle you described (balancing professional interests with the desire to increase awareness of endometriosis and/or sorting out why one does/doesn’t feel comfortable speaking about it publicly) is a very common one.

I wanted to clarify a couple of points referenced in the video.  Cancer is not more prevalent than endometriosis.  (In my personal opinion, it just seems that way because endometriosis awareness is so utterly, profoundly behind cancer awareness).

An estimated 89 MILLION women and girls worldwide have endometriosis! “This makes endometriosis more common than AIDS and more common than cancer”, as per Ohio State University Medical Center.  (Source: http://bit.ly/PyjDP)

Shocking, isn’t it?

That 89 million number is actually a conservative statistic.  Some sources cite upwards of 100 million.  However, I cite the conservative estimate.

I was shocked a couple of years ago when a fellow endometriosis patient threw this Ohio State Medical Center data at me.  I was flabbergasted when I saw endometriosis numbers compared with other conditions.

Having lived with endometriosis for 28 years now, I was first shocked and then angry to begin to fully comprehend just how prevalent endometriosis is (knowing that it does not have a fraction of the awareness that cancer or AIDS have).

It actually lit a fire under me to work even harder on endometriosis awareness.  It underscored the need for it.

Endometriosis can cause a myriad of symptoms.  While the ones you mentioned (painful periods and painful intercourse) are certainly common, there are a whole host of other symptoms that can affect endometriosis patients.

Some patients may have no symptoms at all and proceed to have a laparoscopy to determine the cause of their infertility… only to be diagnosed with endometriosis.  For some endometriosis patients, infertility is the only symptom. 

Infertility in and of itself has now been classified as a disease.  In the case of endometriosis patients, infertility can be a symptom. 

Thank you SO MUCH for your courage in speaking out about endometriosis!  Awareness is so badly needed.

Jeanne

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-- Jenn -- 2010 . 08 . 11 --

Gwenn,

Thank you for your video! I have also recently begun to speak and write about my experiences with endo. It takes courage and strength to raise awareness for endo. It is so encouraging to see another women speaking out for our cause.

Jenn

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-- Amanda -- 2010 . 08 . 12 --

Gwenn,

this is a beautifully honest and heartfelt video and a perfect way to begin spreading awareness of something that can affect your life in so many ways, emotionally and physically! Thank you so much for taking the time to produce this video and for finding the courage within you to speak out about this: it is a difficult thing to do, to admit to having something that very few people are aware of or want to talk about, but it does get easier, I promise! It took me many years to start talking openly about my problems but once I started I found that it became easier the more times I did it because of the fact that for every person that dismisses you and acts like it isn’t a big deal there is another person out there who will embrace you with compassion and want to know more!

Amanda xx

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-- Ginnie -- 2010 . 08 . 13 --

As always, you are an amazing and courageous woman.  Take care, Gwenn, and all the best to you.

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-- Tahnya Hyer -- 2010 . 08 . 26 --

Hey Gwenn,
Like we talked about in the short time in Wisconsin,  You are doing exactly what you should do.  In my case, I didn’t want children, so I said get this done, take this out of me!  I was in pain, was sick of pain medicine and my doctor was wonderful.  This was after they tried putting an IUD in to try easing the pain, however but during the course of that I passed out because I never had a child.  Enough of a story - I believe in you and if you ever need to talk, just give me a call or email me.  Love, Tahnya xoxo

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-- Jeanne -- 2010 . 08 . 26 --

Hi Gwenn,

I just saw the note from Tahnya and thought it was worth noting that there is no cure for endometriosis. 

Tahnya, I am very sorry for your pain!  Endometriosis can be a brutal disease (physically and emotionally). 

I just think it’s imperative for people to understand that a hysterectomy is not a cure for endometriosis.  I know too many people who have had a hysterectomy only to go on to have more endometriosis problems afterwards.

Tahnya, I’m sending positive energy your way!  I think it’s awesome the way you are offering support regarding this challenging illness.  smile

Take care,

Jeanne

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-- Tahnya Hyer -- 2010 . 08 . 26 --

Thank you Jeanne for adding that note, as I had forgotten to add that.  I also wanted to add that the hysterectomy was no cure either.  I am still having problems even 2.5 years later.  This is a great website, with all of these people adding different information together.

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-- Jeanne -- 2010 . 08 . 26 --

Thank you Tahnya, for clarifying that having a hysterectomy did not act as a cure for your endometriosis. 

I’m so very sorry to hear that you’re still having problems.  :( 

It really is wonderful when people pool their knowledge, isn’t it?

Take care,

Jeanne

P.S. Thank you, Gwenn, for starting the conversation on this important topic!

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-- Jill -- 2010 . 08 . 27 --

Thank you. Great comments ladies. I have to say that I have never had anyone ever give me one ounce of compassion when I have said I have endo. (except for one friend at work) I work as a school librarian and have hid my illness for 20 years now. Each time I have tried to tell anyone at work, they shut me down. I also have I.C. and no one has ever heard of that. I sometimes feel really alone and alienated from all my healthy co-workers. I think that most people with endo just can’t work after a certain point so we don’t meet them at work or they are too afraid to say anything due to the fact that it deals with periods and women’s organs.
I agree we need more media coverage. I would love to see us accepted like cancer patients or heart disease. It is sad too that the treatments have not improved. 20 years ago, they pushed me to try Lupron and that is still one of the main “treatments” despite the harsh side effects. I worked while receiving the shots and it was the worst time of my life. The doc told me that work would be no problem with it but looking back, I should have been on reduced work or off altogether. I am hoping Menopause will help me regain my life. I recently started Bio-Identical hormones and I am hoping it helps. Best of luck to everyone!

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-- Jeanne -- 2010 . 08 . 27 --

Jill,

I have lived for endometriosis for 28 years and with interstitial cystitis for 18 years.  (I have other chronic illnesses too).  I’m now 41. 

If you ever need an ear, I’m here.  I have loads of friends online with both endo and IC.  You are NOT alone.  If you click my name, it will take you to my blog.  I’m connected on Facebook and YouTube with fellow endo and IC patients (in addition to the fellow patients on my blog itself).

Sending positive energy your way!!!

Jeanne

P.S. We are using the endometriosis awareness petition to try to deal with the media issues you referenced.

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-- Gwenn -- 2010 . 08 . 27 --

All your stories make me feel less alone.  Thank you for sharing them!  Together we can make endometriosis understandable.

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-- Jenny -- 2010 . 08 . 29 --

@Gwenn,

Bonjour from the Anglo-Quebecker that I am raspberry I always appreciate French people who speak English (around here we’re kind of seen as freaks sometimes lol)

First off let me say congratulations for sharing this video…I wish I could do the same on my blog but due to other information I share on it I have to be careful (I’m a teacher…wouldn’t want a student or parent to know EVERYTHING)
I hope you will continue to talk about this condition which as my buddy Jeanne pointed out, is far too common and yet totally misunderstood.

I’m 28 (well almost 29 really eek!) and was diagnosed officially in Feb 2009.  I have stage 4 endo that has fused my uterus and my colon together.  Thought I should mention this as colon-endo is very serious and also quite common.  It tends to also lead to misdiagnosis of other conditions such as IBS and Crohn’s disease.  I have also been trying to conceive for 2 1/2 years.  It’s a terrible circle I’m in pain physically which sucks but also a lot of emotional pain (which I have to say I’m proudly dealing with through therapy!).  I am currently about to start my first round of in-vitro.

I personally believe that it’s my duty to tell the people in my life about my problem…whether it makes them uncomfortable or not….the way I see it, their discomfort is nothing compared to the pain!  I recently shared with my two friends/coworkers a lot more details of just how bad it can get and they we’re incredibly supportive.  I think part of the “standoff” attitude is not so much that we’re talking about “lady parts”...I think it’s fear.  They realize this is something that could happen to them (or that they may already have it) and so they try to ignore it…much like cancer patients, eh?

Keep up the good work.  Beautiful artwork btw…I may ask you for some advice for teaching my students art!!!

@Jill
I can’t believe that people we’re this mean to you!  I’m so sorry to hear that.  I don’t know if you’re in a HS or Elementary but being a primary teacher, I’m surrounded mostly by women.  I find this makes for a more open environment about these sorts of things.  Of course I also live in a pretty open-minded community.  All I can say is that you’re definitely not alone and as I said to Gwenn, share your story regardless…who knows if it’s the push someone may need to get a diagnosis???

@Jeanne-as always love you and thanks for connecting me with so many other amazing women!

((hugs)) to everyone

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-- Gwenn -- 2010 . 08 . 29 --

Salut Jenny!

Yes!  I think you’re right on about female friends worrying that they have the disease.  Soon after my diagnosis, I discovered that I could talk about endo only with my partner and with my two close male friends. 

Meanwhile, my female friends either changed the subject when I brought it up or simply evaporated from life.  I quickly realized that I had too many of my own emotions to deal with and that it wasn’t worth taking on theirs right away.  I allowed some space and time to grow between us, and bit by bit we’re reconnecting. 

And please ask about art stuff anytime! 

Bon courage!
Gwenn

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-- Aideen -- 2010 . 08 . 30 --

Dear Gwenn,

First and foremost kudos to you for trying to drive more awareness around this condition. I was diagnosed a year ago and I have to admit I am still very lost and often in pain.

However, I do not like the way you have made this comparison with cancer. My sister had cancer when we were growing up and thankfully she overcame it rather than vice versa. Cancer is something that is often fatal and 100% more terrifying, if you live everyday with someone who has cancer you may actually consider yourself lucky. Endo is a problem and it is difficult but there are ways to cope, many ways so lets look to those instead of making comparisons.

Many Thanks

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-- Gwenn -- 2010 . 08 . 30 --

Hi Aideen,

I refer to cancer only as an example of how successful we have been in the last 150 years at overcoming prejudices and misunderstandings about that disease. Everyone knows what cancer is now, and I’d like it to be the same for endometriosis.  That’s all I said.

Best of luck and bon courage,
Gwenn

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-- Philippe -- 2011 . 02 . 21 --

Que dire,
je n’ai pas su comprendre la vidéo et pour cause je ne comprend pas l’anglais!
Qu’a cela ne tienne en lisant les commentaires par le biais d’un traducteur en ligne j’ai pu comprendre qu’il étais question d’une maladie de laquelle vous souffré et dont je n’avais a ce jour jamais entendu parler, ce que je trouve inadmisible a une époque ou la communication et la transmission de l’information est si rapide.
Je suis un homme mais pas insensible, et ne peut dire que je vous comprend parce que je vis avec ce problème, néanmoins je voulais vous dire que je suis a l’écoute et que je vous soutien dans votre épreuve et votre combat.
De par mon expérience des maladies vécues, j’ai fait face a l’indifférence voir au rejet du fait d’être malade. Je ne resterait donc pas indifférent a ce que vous vivez et je vous remercie de le partager. Si je peut être d’une utilité pour informer a mon tour, ce sera avec joie que je le ferai.
J’ai un site et pourrais y inclure une rubrique de sensibilisation(en français) avez vous des adresse de site de sensibilisation et de soutien que je pourrais renseigné( en français de préférence mais aussi pourquoi pas en anglais) et si un jour vous refaite cette vidéo en français j’y incluerai l’url.
Bon courage et continuer de partager sur ce sujet avec nous

Philippe

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-- Gwenn -- 2011 . 02 . 28 --

Tu as raison, Philippe.  Je vais faire une vidéo comme celle-ci en français!  Autrement, pour en savoir plus sur l’endométriose, il y a endofrance.org.

Et merci!

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-- Sara -- 2012 . 06 . 29 --

Hi Gwenn,

Well done on telling your story. I was diagnosed with stage 4 endo (the worst it can get, so my Dr said) at age 19. I’m now 23 and doing well. I haven’t ever felt shy or ashamed about having endo and in fact I have found that the more people I speak to about it (women in particular) the more common it is. I usually get responses like “oh my friend has that” or people end up talking about their own challenges with their reproductive systems.

I am surprised to see that out of all of the comments on this page no one has spoken about treatments aside from what is prescribed by doctors.

Personally, Dr’s have put me through hell with different kinds of hormone treatments and by simple not believing me or not caring when I presented with different symptoms. The only solace I have found is through looking at the disease and learning about it holistically. I mean things such as changing my diet (eliminating wheat, sugar and mostly diary- especially the week prior to my period) has decresed my period pain significantly.

Other things like reflexology and reiki have helped me too. I also get a lot of back pain with my period and have found that getting regular chiropractic adjustments help as well.

I agree there is not enough awareness about endometriosis. I particularly think that there is not enough awareness about how the symptoms can be managed in ways other than brutal hormone treatments and regular surgery. In Australia we had a large organisation that worked primarily on Endo, but my understanding is that it has disappeared over time due to lack of funding. My mother is looking up at setting up a new one in the near future.

I hope your struggle eases soon. Keep doing your amazing artwork, I think being creative is extremely therapeutic to the body, mind and soul.

Sara

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-- Gwenn -- 2012 . 06 . 29 --

Thank you Sara for adding your story and experience here! 

And yes, I’m certainly with you on taking the more holistic approach to healing.  Hormone treatments are brutal and they certainly don’t work for me.  The stress of having obsessive thoughts about death (which is what hormones do to my normally non-suicidal brain) doesn’t seem to help in managing the growth of endometriomas for me…!

Recently, I read Bob Flaws’ Endometriosis, Infertility, and Traditional Chinese Medicine and I was struck by how Chinese medicine describes endo.  The Chinese view of the disease acknowledges a few different kinds of imbalances which can lead to what Western medicine simply calls endo.  And this multiple-imbalances view seems to more accurately reflect the very different expressions of endo in different women as far as I can tell.  In any case, from what you said in your comment, I thought you might find the book interesting.

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-- Sara -- 2012 . 06 . 30 --

Thanks Gwen,

I had heard about Chinese medicine being another alternative, hadn’t done much research into it though. Will definitely take a look at that book.

Thanks a lot smile

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