Tag Archives: march blogging madness for endometriosis awareness

Endometriosis Awareness Month: Where did March go?

March is practically over with. Isn’t it? 

Wow. 

Where did that go??

I remember in 2009, Jeanne from Chronichealing.com and myself were plastered on Twitter (#marchbloggingmadnessforendometriosisawareness) (can that win a prize for longest Hashtag, or what?). We were posting every day. Retweeting and being retweeted by the minute. Things looked promising for our quest to bring more awareness to this silent disease. 

And despite issues that forced us from using the Twitter medium, we really made some headway. 2009 was brilliant in that respect. Globally, endometriosis was getting a voice. And for those us of who have it, it no longer was being referred to as a mere painful time of the month issue. 

Since 2009, our voices are still being heard. Various media outlets have heard the call. They are doing stories and writing articles. But we still have a hurdle to jump over. Don’t we? 

I am still finding the occurrence of misinformation popping up in my Google feed. Women still leave messages on this blog on how they were misdiagnosed, under-treated, or ignored by the healthcare establishment. There are still uniformed or misinformed spouses, partners, co-workers, bosses, friends. 

In a time where we can connect globally via e-mail, Facebook. Twitter, Google+, blogging, and chat rooms, there are still women struggling alone in this. There are still loved ones clueless to help.

So I am leaving Endometriosis Awareness Month 2012 with a question, a question that will be addressed in my book. 

Where do we go from here? 

 

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Why we need awareness #7

There are but two days left in March, but the campaign to increase awareness and urge research into cause and elimination of endometriosis does not need to end. Our voices remain strong as we continue to band together – on-line and off. Regardless the media carrying out message, it is still being disseminated to the many millions of women world-wide who need to hear it.

With that being said, I am making this post (which, depending on my schedule could very well be the last one for March) pack a mighty punch. It will be fact ridden, and I promise you, validate what many women think about hysterectomy and failed endometriosis treatments.

The subject being discussed is the quality of life and sexual function in women post-hysterectomy. This is a very delicate subject, and for some, may be upsetting. If this is the case for you, you want to skip this article. On the other hand, if you have had a hysterectomy and are experiencing pain and depression and obtaining inadequate support from your health care provider, this article may give you the information you need to sway their opinion.

One night I was doing research and found the article I will discuss below. It caught my attention because a 35 year-old woman had e-mailed me the day before. She had chronic pelvic pain and decided on a hysterectomy. It was always assumed she had endometriosis, and adhesions were found, but no implants. 7 months after lap, she decided to have a hysterectomy. Her pain had caused her to go on medical leave from her job and she had had enough! She then found my blog 3 years post-op because the pain had never stopped. She had been tossed from doctor to doctor with no answers.

In a 2004 study published in the October issue of The American College of Obstetrician and Gynecologists, Dr. Katherine E. Harman, Cindy Ma, Dr. Georgine M. Lamvu, Patricia W. Langenberg, Dr. John F. Steege, and Kristen H. Kjerulff, the researchers state, “In the United States, more than 60,000 hysterectomies are performed each year; of these, 10% of women have pelvic pain as their primary preoperative indication for the surgery” and that of these 10% “22% of patients with pelvic pain before hysterectomy continue to have pain after surgery”.

I don’t find these statistics too surprising. I have heard from countless women – on a global scale – reporting the same. They had hysterectomy for unrelenting pelvic pain. Their endometriosis was being controlled. A few were just tired of living with ovarian cysts. But after the surgery, and the recovery, the pain remained. It returned. It was… there.

This study aimed to take a population sample of women experiencing pain and depression after hysterectomy. 1,299 women were included – women who had hysterectomy for pain resulting from benign conditions. I stress benign because one could expect depression in women having a hysterectomy for malignant conditions – such as cancer.

They measured these women on functionality, both at 6 and 24 months post-op. Measurements evaluated the “presence of pain, health-related quality of life, and sexual function”. Three groups of women were studied: (a) women with pelvic pain and depression, (b) depression alone, and (c) just pelvic pain.

At 24 months post-op, the women with preoperative pelvic pain and depression had “3 to 5 times the oddd of continued impairment of quality of life”.

What is not discussed in this article is the use of hormone replacement therapy during the study period. The participants were 18 years of age or older.

The authors note, “Gynecologic surgeons are appropriately concerned that patients who are struggling with depression and/or pain before surgery be at especially high risk for poor operative outcomes such as slow recovery, persistent pain, or developing new symptoms.” They conclude that performing a hysterectomy on women with pelvic pain and depression could actually do more harm than good.

From what I see, there has yet to be a long-term follow-up study concerning post-op hysterectomy health and function.

This study does focus on women who had depression and pelvic pain before surgery. And by doing so, may contain a bias towards the belief that women with depression have lower success rates for treatment. But one should ask, how many of the women’s depression was a result of the pelvic pain? This needs to be studied and quantified.

To me, this study read more like evidence to support the attitude some clinicians have with chronic pain patients – just pass them off.  

How does this article relate to “why we need awareness”? If you’ve stuck to this point, you deserve an answer. This article reinforces the depressed pelvic pain stereotype. It reinforces attitude that women with preoperative depression are more likely to be unresponsive or under-responsive to the surgical therapy. Having these prejudices and stereotypes circulating can lead to increased mental anguish.

I am not condoning hysterectomy for endometriosis in this post. That is something for the patient and her physician to discuss. I am not a doctor. I do not have the ability to condone hysterectomy; it is merely my personal belief that not all pelvic pain should result in hysterectomy.

Why we need awareness #6

Three years ago I sought the advice of a trusted, and seemingly competent, gynecologist. The pain was well over 20 on a 10-point scale, and like many women I’ve heard from over the years, I had “given up”. I was done! I wanted this busted uterus gone from my body. I wanted those blasted, estrogen producing ovaries out of my body. And I wanted, more than anything in the world, for this endometriosis to stop cursing me with monthly agony. I just wanted to be free from being chronically ill.

It was at the consultation when my physician’s nurse practitioner closed the door gently behind her and asked me, “is this really what you want?”

Of course it was! I begged for this! I pleaded and screamed and kicked my feet until I found a gynecologist who would do this surgery on someone under 40. Was this lady daft?

She must have taken my look of “wtf?!?” to mean I was unsure. Either that, or she just didn’t care. She was looking out for her patient and holding true to the first tenet of medicine  -“first, do no harm”.  I remember her heavy sigh as she took my hand in hers and said, “you should not get this hysterectomy.”

Who was she?!?! She had no clue about my pain. She had no clue how this affected my life. Then she said, “I have been where you are now and I have seen the other side. It is not one to walk down lightly.”

She proceeded to recount her experience with endometriosis. Her tale was strikingly similar to my own, and to many other women with the disease. Years of heavy, painful periods. Days spent sitting out of life, clinging to heating pads and pain reliever bottles. Treatments tried and failed. Being a spectator in ones own life.

She then told me that having a hysterectomy was akin to buying another used car when your previous junker has clunked out. With your current car, you know what you’re getting. You learn to know its noises, and how to get it started even when it makes that “put-put put ” sound or smoke bellows out the exhaust pipe. But when you trade it in – for a hysterectomy – there can come all these new problems – problems you couldn’t conceive of. And there is no Lemon Law. They can’t graft back in your ovaries – your uterus. There is no turning back. And you could awaken in that recovery room  a miserable mess. And she described the sudden loss of estrogen – like going 80 and slamming on the brakes.

And hormone replacement therapy increases the risk for heart disease and cancers. And one must weight the decision to have a hysterectomy with the possibility of life without estrogen.

I left her office that day confused. I took a long, hard look into my life with endometriosis. A very long look. And I came to the realization that my endometriosis – much like an old car – is predictable. I’ve lived with it for so long I know how it acts, when it acts, and how to mask it. I know what works, what doesn’t, and what my body will not handle. And I made the personal decision not to cross into the unknown frontier. No thank you Captain Kirk, but I will not be going boldly where others have gone before.

And I stress, this is a personal decision. Some cases may warrant a hysterectomy. This is something for you and your physician to work through.

But we need more awareness as to the myriad treatments available. I was told Nuvaring failed, BCP failed, the shot failed… time for surgery. They gave up and I almost gave up on my self.

Why we need awareness #5

March 2009 – Jeanne from Chronic Healing and myself banded together to increase endometriosis awareness. My contribution that month included posts such as:

Endometriosis = cancer?

The Stages of Endometriosis

Estrogen: Fuel for the endometriosis bonfire

A media awareness campaign began: My letter to Noah Kotch @ The Today Show

And Jeanne created a petition to increase awareness that continues to be signed. If you have not, please do sign this petition.  If you are a blogger, please consider adding the petition to your site. Please spread of the news of this post, all endometriosis awareness posts, and the petition through Facebook and Twitter.

Why do I point out what we did 2 years ago?

Despite our petitions and posts, incorrect information about how endometriosis is diagnosed and treated continue to be disseminated in the media. An appallingly dismal amount of research is being done into the cause of this disease. And women continue to be misdiagnosed by their doctors.

Search terms such as “endometriosis suicide” increase in frequency with little recognition from the health care establishment regarding the impact chronic pain can have on an individual. Chronic pain patients presenting with depression are sometimes treated for the depression and not the pain. This can create a vicious cycle in which the pain never ceases, goes severely under-treated, and the depression fails to respond to treatment and can worsen. This is when search terms linking endometriosis and suicide occur.

I should not have to use one hand, let alone two, to count how many people reach my blog every month using the search term “endometriosis suicide”. I should not have to read heartbreaking e-mails from women who are at the breaking point. Women who are turned away because of their pain, because of their need for answers. These women are fed up and tired of the “take this pill, give it 6 months, and call me if you’re still in pain” regimen. These women are tired of their bodies being cut on and disfigured because there is no final solution for this disease.

Their hearts break because of infertility. Their bank accounts run negative because of costly treatments and surgeries. There are stories of lost wages and termination because of excess time off.

But above all, the most common complaint I have found… “no one understands what I’m going through”.

All of that – that is why we need awareness. And we need it now more than ever.

Why we need awareness #2

This is the second post in my Endometriosis Awareness Month series: Why we need awareness. Unlike the previous post which focused on an account past to me from the patient, this post is personal. This post discusses my mother and her own battle with endometriosis.

There was never pain, she explains, just heavy bleeding. This bleeding caused hourly – if not more – sanitary napkin changes. This bleeding would last 7-10 days per month, cause dizzying anemia, and disrupted her life. With 3 young children, she explains, being preoccupied with hourly bathroom trips  for over a week was never convenient.

It was during the birth of her second child – via cesarean section – that she diagnosed with Stage IV endometriosis. She had her tubes tied –  the doctors claimed she couldn’t get pregnant again with Stage IV endometriosis, but my mother didn’t want to take chances. Her bleeding failed to improve. Her body refused hormonal treatments. The Pill gave her migraines. Norplant was not covered by insurance. Surgery was not an option because she was the sole breadwinner. She could not miss 6 weeks of work for an open laparotomy (this was before laparoscopy began being used).

A few miserable years later, she managed to get pregnant despite having her tubes tied. Apparently, she says, the endometriosis helped regrow one of her tubes. No one told her this could happen until she presented with-child.

After a repeat cesarean, it was discovered that her endometriosis had worsened and covered most of pelvic organs, including the cul-de-sac, had infiltrated to her bladder and covered a good portion of intestines. During surgery, her bleeding became unmanageable due to her “boggy uterus” (post-pathology report, it was discovered that she had adenomyosis as well). The doctors removed her uterus, right ovary and tube leaving the left intact.

While the bleeding stopped, she began getting abdominal pain. This pain, as she described it, was like shooting knives. She heard every excuse: “gas” to “adhesions” to even “it’s your nerves”. Finally, one day while at work, the pain became unbearable. Her blood pressure dropped and she fell unconscious. During exploratory surgery, it was discovered that the remaining ovary caused the endometriosis to regrow. That ovary was removed. My mother almost bled to death internally.

A few years ago, I was considering a hysterectomy. I was tired of the pain. I asked my mother, “Mom, do you regret having the hysterectomy?” She answered: “If I knew how it would affect my life, I would have reconsidered.”

Since having the hysterectomy, my mother’s life has flipped on itself. She no longer works outside the home. She experienced instant menopause at 32, when the final ovary was removed. She went through the hot sweats and mood swings. When time had passed and hormone replacement therapy would have been an option, she could not take it due to family history of heart disease. She was stuck in a very hard place.

Now, many years later, she suffers from anxiety, depression, fibromyalgia type pain, arthritis, headaches, dry skin and thinning hair, deepened voice, facial hair, insomnia (she has become dependant on Tylenol PM). The list, as she says, is just too long to type up. The most interesting symptom to note, though, is abdominal pain.

She notes, as well as I do, that sometimes hysterectomy is a must. In her case, the bleeding could not be contained. The surgery had to occur. Women with pelvic cancers – uterine, ovarian, and cervical – should follow their physician’s advice. But for everyone else, I will echo my own mother’s words (as well as my own physician’s), a hysterectomy may solve one problem but it’s going to open new doors. We don’t know what’s behind those doors, and it’s different for every woman. If you are considering a hysterectomy, please do the research. PLEASE ASK QUESTIONS. Second opinions are vital when considering life changing surgical procedures. DON’T HESITATE TO ASK FOR ONE!!!

March is Endometriosis Month!

March is endometriosis month…. and so it is fitting that I am writing this from my couch, with my trusty heating pad nestled cozily on my lap, right? It would also be fitting for me to write this while self-medicated on whatever I could get my hands on to numb the pain. Right?

Why is this the picture of endometriosis? A bed-ridden woman, clutching the heating pad to her stomach. Crying. Desperate. Alone.

Recently, I described endometriosis to a friend. I described the clinical aspects – not the reality. The clinical aspects, after all, are so clinical they become abstract – a random hodgepodge of symptoms. When we distance ourselves, as doctors often do, it’s just a text-book reading of bodily occurrences. I believe I had a doctor once sum this attitude towards endometriosis as, “you have some extra discharge during your period and possibly more cramps.” Wow, if only.

As I described to my friend how endometrial implants grow on places outside the uterus causing them to bleed along with your monthly cycle, her statement was, “well, that doesn’t sound good.”

As I described how this causes cramping and internal adhesions. Her response, “are you still able to exercise?”

The doctor (the countless doctors) – my friend – most of my family (as well as yours) – they don’t understand. And who can blame them? While I may see a list of symptoms for other invisible illnesses and sympathize with the afflicted (mainly, again, because I, too, have an invisible illness), I can never experience that person’s pain. I haven’t been there.

Yet, there remains that picture of endometriosis – the grimacing, crying woman. The broken woman. The woman sitting alone (alone because everyone she knows is out living life while she is curled up in pain). And while this picture may seem fitting – nay, even true at times with this disease – how does it help us?

I’ve heard from women – women with varying stages of endometriosis and symptom severity – and they, too, are fed up with this picture. They no longer want people to label them by their disease, by their pain. They no longer want doctors to label them “drug seeker” or “hypochondriac”.

They also no longer want to be alone in this fight. And thankfully because of this blog and the myriad number of women blogging about endometriosis this month, when they Google “endometriosis”, they won’t be alone.

This March, let’s change the picture of endometriosis. The saying goes: March comes in like a lion and leaves a lamb. This March, let’s be that lion. Let them – the doctors, husbands, boyfriends, friends – hear our roar!

Together, we are stronger. Together, we have a voice.

Jeanne’s Endo Blog New Post – Hysterectomy Story

If you’ve come across my blog and are contemplating a hysterectomy to help ease the pain of your endometriosis, I urge you to please check out Jeanne’s Endo Blog. She has a guest blogger who has posted her story today about her 20+ year experience of what it’s like post hysterectomy. If you’re sitting there thinking, “what’s this going to be like in 5,10, 15 years down the line?” Head over to Jeanne’s Endo Blog and check out this story. Please.

There are so many other stories just like it. My own mother had a hysterectomy at 28 – due to excessive bleeding from endometriosis and adenymyosis (the only reason my doctor says she’ll consider taking out everything now). Now in her late 40’s, she’s plagued with muscle fatigued and what I strongly believe is fibromyalgia. She lives on Tylenol and needs Tylenol PM’s to get any sleep. I hate to see what this is doing to her liver! She is still plagued with cramps and pulling sensations (most likely adhesions from multiple pelvic and abdominal surgeries including the hysterectomy). And she says she still gets hot flashes. But with her mother’s history of cancer, hormones are out of the picture. My mom tried them and couldn’t handle them so even if they were an option…  And my mom has had gallbladder problems for years. She has to watch what she eats and just two weeks ago she said it seems like she can’t eat anything anymore without it messing her up.

There is another woman I know who had a hysterectomy and is now experiencing suspected gallbladder complications, among other things. Is there a pattern here? Decide for yourself. Read Roberta’s personal story and decide for yourself. When I heard it I felt compelled to ask Jeanne if I could post something on my blog point to it because I couldn’t believe it! This woman’s story sounded just like my mom and the other lady I know! It was uncanny!

And while you’re over there, please take a moment and sign Jeanne’s petition for Endometriosis Awareness. We have been tirelessly trying to get more awareness and education for endometriosis this month, and Jeanne’s petition has been circulating for sometime now! Help us reach more people with facts and not myths!!

**MARCH BLOGGING MADNESS FOR ENDOMETRIOSIS AWARENESS **

Adventures in the Land of CPAP & Pain, Pain Go Away Don’t Come Back Another Day!

In which I speak about my adventure at the sleep lab last night with the CPAP machine, and then about how my glorious morning was rudely taken from me by Ms. Left Ovary shouting: “Hey, remember me?”

Continue reading

My letter to Noah Kotch @ The Today Show

This morning I was encouraged to write to Noah Kotch, Senior Producer of the The Today Show by Jeanne over at Jeanne’s Endo Blog. This was done, of course, in the hopes that I can appear on that program to spread positive awareness about endometriosis. My letter will follow below. I am asking if any of you reading this, if you are willing, if you would please write to him as well encouraging him to have me on the program. I don’t think there will be a problem referring to me as Endochick just MAKE SURE you include my FULL blog title and a link to it. I did this in the letter. This way he can connect it all back to the same person.  THANKS!

Letter to Noah Kotch

Dear Mr. Noah Kotch, Senior Producer:

You may not be aware that March is National Endometriosis Awareness Month, but it is. Endometriosis is an insidious pelvic disease that affects an estimated 89 million women world wide, and 5.5 million women in North America alone (Lindsay Fry, Endometriosis Assn, August 2010) . According to the Ohio State University Medical Center, endometriosis is more common than both aids and cancer. There is no cure for endometriosis, and women are left to suffer often in silence with the symptoms of this debilitatingly chronic disease. Doctors shrug women off and tell them they simply have a “bad period” or they get pumped full of hormones before they even get an accurate diagnosis. Doctors are hesitant to perform the surgery – a laparoscopy – to diagnose these women before turning them into hormone test dummies. Believe me, Sir, I was one of these women who had to undergo trial after trial of birth control pills and hormone shots before finally switching doctors and obtaining my diagnostic surgery.

I am writing to you today to ask for a chance to go on the air with Meredith Vieira to bring awareness to the nation about endometriosis. I am an endometriosis and chronic health advocate and blogger. You may find my blog here: Endometriosis: The Silent Life Sentence My blog is both a very candid look into what it is like live with endometriosis and other chronic illnesses, and varying articles about endometriosis.

March is about awareness for endometriosis; will you please help bring more awareness to the women and young girls who may be watching the Today Show and are wondering why their cramps aren’t subsiding with that Pamprin; why the heating pad isn’t doing anything for their back; why they are doubled over in pain; why they are cursing the day they were born… a woman.

Sincerely,
Endochick

Today Shows Email: TODAY@nbcuni.com

***MARCH BLOGGING MADNESS FOR ENDOMETRIOSIS AWARENESS***

Estrogen: Fuel for the Endometriosis Bonfire

bonfire

Excess estrogen is literally the fuel that lights the endometriosis fire, and makes new implants grow. This is why so many women who undergo a hysterectomy – in the belief that their pain will be abated – suddenly find themselves in agony again shortly after beginning hormone replacement therapy.  With hysterectomies, even with excisions of endometriosis on organs not being removed, there inevitably will be left behind some remnants of endometrial tissue or implants on organs where excisions are not possible. If estrogen therapy is begun too soon post-surgery, this will feed those implants. At least this seems to be the leading medical theory.

How then can we suppress estrogen? Progesterone. The goal of progesterone- only treatment is to lessen or eliminate the monthly period. We know estrogen stimulates the growth of endometriosis, even if you have had a hysterectomy.  But estrogen isn’t just found in a pill! It’s everywhere! In the bio-enhanced meat we consume, the plastics we use…. it’s everywhere.  If you give an endometriosis woman progesterone, it will shed the lining of her uterus without some of the side effects of estrogen.

Besides being a wonderful birth control alternatives for those who are estrogen sensitive, progesterone-only treatments starve the endometrial implants over time. As your uterine lining — or endometrium starves off — the endometrial implants will recede, as well.  This is how progesterone only endometriosis treatments like the Mirena IUC and medroxyprogesterone  (Depo-Provera) work.

If BCP pills are working for your endometriosis, great! But if they fail to starve off the growths, perhaps it’s time to look into progesterone only options. Why do I use the Mirena? Migraines! My migraines are estrogen sensitive – foods and meds! The Mirena has made my life livable again. If you are estrogen dominant, the Birth Control Pill is not a good option for you.  But you may say it’s even harder to avoid estrogen out in the world. After all estrogen derivatives proliferate our daily lives more than you might think. They are in:

  • Meat products
  • Dairy
  • Pesticide sprays that are sprayed on the produce we consume
  • Plastic products
  • Spermicidal condoms
  • Sunscreen

The list is really endless! There are two types of estrogen found in the environment – xenoestrogen and phytoestrogen. Xenoestrogen is man-made estrogen and this can cause havoc on the female and male reproductive system. The effects of xenoestrogen’s on reproduction gained notoriety in 1980 when there was a large chemical spill of DDT in Lake Apopka in Lake Apopka, Florida. See the page Xenoestrogen’s Cause Endometriosis by Dr. Elizabeth Smith for another example and more information.

Dichloro-Diphenyl-Trichloroethane, or DDT for short, is synthetic pesticide that was used during the World War II to control disease spreading lice and mosquitoes. Then in 1962, Biologist Rachel Carson published the famous book Silent Spring stating that DDT may cause cancer. As a result of the publication, in 1972, DDT was banned from the United States but is still in use as a pesticide in countries WE in-port fruit from! That’s right, you may be eating fruit laced with DDT on it unless you buy from an American producer. LOOK AT THOSE STICKERS!!!

But back to the xenoestrogens… scientists found that the alligator population was declining. There were not as many baby gators being born in the spring post-DDT spill. After studying this, they concluded that the xenoestrogens in the DDT had resulted in some of the gators being infertile.

Xenoestrogens are also found in the Bisphenol-A that had so much hype in the news recently. Not only is there cause for cancer, but the link to xenoestrogens and endometriosis makes me not want to nuke plastic! How about you?

Then we come to phytoestrogen – the plant estrogen. You may think if it comes from Mother Nature then it can’t be bad for me, right? Wrong. With endometriosis, it’s about picking the right phytoestrogen’s to feed out bodies and our wombs. Here are some you should avoid:

  • Coffee. Coffee is a phytoestrogen – and even decaf is out.
  • Red Clover Tea
  • Alfalfa Sprouts
  • Sunflower seeds
  • Pomegranates
  • Fennel
  • Licorice
  • Beer
  • Oregano
  • Verbena
  • Nutmeg
  • Turmeric
  • Thyme
  • Cumin
  • Chamomile
  • Cloves
  • Excess Soy

Now what do I mean by excess soy? Please see Dr.Weil’s article on this topic. He suggests that consuming soy products will help women with endometriosis, but that we shouldn’t consume over 40 mg. of soy isoflavones daily.

I, like others, have found that a diet rich in vegetables, fruits, whole grains, and lean meats has helped my endometriosis. I eat organic as much as possible to avoid things like DDT, and because I know those things were grown or bred in the best possible conditions for my optimal health and the environments. And in the case of animals, they were treated fairly, were not given growth hormones, or fed animal by-products.

Also, the above list of food consumed in small amounts is not likely to have a huge impact on your endometriosis. But if you are a chronic coffee or beer drinker, eat alfalfa sprouts or pomegranates frequently, you may want to consider not doing so and seeing if your endometriosis pain improves. Like everything in life, moderation is key.

****MARCH BLOGGING MADNESS FOR ENDOMETRIOSIS AWARENESS****