Endometriosis Misinformation in the Media

There is a lot of misinformation circulating the Internet about endometriosis. Some of us are all too aware of this. But there is also misinformation about this painful, chronic disease circulating in the mainstream press by legit doctors of gynaecology. The same doctors who treat endometriosis are helping to fuel the misinformation cesspool. The mere thought of this is mind-blowing.

Instead of writing a long post explaining the current situation I will direct you to Chronichealing.com. Her post Media: Endometriosis Misinformation (Edited) will be able to fully tell you more than I can now. The comments on this thread are also VERY much worth reading.

After reading her post, please go to the webpage and e-mail the editor! Alone our voice is weak, but together our voices are mighty.

Speak Up!

You may have noticed – posted somewhere in your doctor’s office or in the hallway at your local hospital or clinic – a poster about being your own health advocate.  Speak Up™ is part of an initiative from The Joint Commission to “urge patients to take a role in preventing health care errors by becoming active, involved and informed participants on the health care team.” Help prevent errors by being aware and active in your health care!

• Speak up! - Take a notebook with you to your appointments. Write down questions and concerns and ask them while you’re there. Ask about all directions and how medications should affect your body.
• Pay attention! - Question the treatments and procedures you are getting. Never assume that doctors are always right. Doctors are human, and humans make errors. If your health care providers don’t double-check, make sure you insist they do!
• Educate, EDUCATE, EDUCATE! – Learn all you can about your illness. Learn about the treatment and medical tests you can expect, and about the worst and best outcomes. Be informed!
• Ask for an advocate – Find someone you can trust and put it in writing. Make it legal.
• Know your medicines – Medication errors are too common. Know the ones you take and your doses. Have it written down and keep a list on you for when there’s emergencies.
• Use a quality health care facility  – Know the care that you are receiving is coming from a top-notch facility. After all, you wouldn’t take your car to the kid down the road who got an A in shop, so why would you go to a below par medical facility?
• Participate – Your health care should center around you, so be an active participant.

Endometriosis & Suicide: a post for awareness

Endometriosis is an invisible chronic illness. It’s invisible because it’s internal; it affects our inner most organs, our ovaries, uterus, fallopian tubes, and pelvic cavity. It can slither around to our bowels and invade our bodies – a noxious, vile demon on a painful destructive warpath. And the only outward signs we have to show the world of our illness are our laparoscopic scars and tears.  If we’re lucky, we find a wonderful surgeon who can remove the tissue and place us on a treatment that successfully keeps it at bay, giving us relief for sometimes years at a time. But there is no cure, and we know this. Oh, how we know this.

And too often we may find ourselves curled up on our couches in the middle of the night, crying into our throw pillows, hugging heating pads to our tender stomachs desperately waiting for the pain medicine to work. Too often, some of us bleed ourselves into anemic conditions, requiring even more medication to make us feel normal. And all of this – this surviving with an invisible chronic illness that no one else but those who have it, is exhausting.  

Because our husbands, our boyfriends, and even our non-endo friends, cannot relate to our pain, we can sometimes feel isolated by it. The pain from endometriosis and the side effects from hormonal medications can wreak havoc on our careers and relationships; and the surgeries, which can sometimes be many and costly, cost us to lose work, lost time from loved ones and daily activities, and possible social stigma. The only ones who truly understand how someone with endometriosis feels is someone else who has endometriosis.

As someone who has endometriosis and has had it for years, I find that I am getting an increased number of searches for “endometriosis suicide” and “endometriosis and suicide” very alarming. Never should your pain be so bleak that you feel your only way out is through suicide. If you, or someone you know, is considering suicide (because of endometriosis pain or any other reason), PLEASE seek help! The number to call is: 1-800-SUICIDE

When I was a teenager my cousin committed suicide. She left no letter and no reason. But it wouldn’t have matter if she had. The devastation left in the wake of her suicide left holes in the hearts of many family members who still cannot look at her picture without tearing up – and it’s been over ten years.

That is why I am writing this post today to urge anyone searching “endometriosis suicide” to seek help. Anyone who believes the pain is so intense they can no longer live with it – call 1-800-SUICIDE. If you’re newly diagnosed with endometriosis and fear you will never have children, do not lose hope! There are many women with endometriosis who are not infertile. But, if you have endometriosis and have struggled with infertility and are losing hope, please check out these resources:

RESOLVE - Stepping Stones - ASRM: Mental Health Professional Search

SUICIDAL THOUGHTS OR TENDENCIES: CALL 1-800-SUICIDE

Swallow your GnRH treatment?

Some with endometriosis may be prescribed gonadotropin releasing hormone’s (GnRH) to combat their disease growth. While there is literature touting the benefits and negatives of GnRH agonist therapy, as well as a plethora of personal accounts to be found on-line as to both, this post will not discuss either.

There has always been a few major drawbacks to GnRH agonist therapy (and not even taking into account side effects). GnRH agonist’s are often very expensive and require either hefty out-of-pocket expenses, or waiting for insurance approvals. I’ve heard of one popular GnRH, Lupron, costing one woman $1,000 a shot without insurance. Considering this medication is taken either at three-month intervals for six months at a time, this would have cost her $2,000. GnRH agonist’s are also subcutaneously delivered medications, which means given in a shot form. People may have a fear of needles. Also, because of the delivery system, it can only be administered by a clinician (unless prescribed in the daily form for fertility treatment).

So, how about a pill form GnRH? Avoid the needle and the trip to the doctor every 1-3 months for your injection. Sound good? It sounds rather swell to Soligenix, the makers of a Lipid Polymer Micelle (LPM™). This new technology allows for GnRH agonist medications like Soligenixs’ Leuprolide to be delivered orally.  According to the press release on their website:

Soligenix has received a European patent which addresses its Lipid Polymer Micelle (LPM™) technology for the improved oral delivery of drugs. The issued European patent, EP 1460992, entitled “Stabilized Reverse Micelle Compositions and Uses Thereof” covers lipid structures (reverse micelles) that promote the intestinal absorption of peptides and other sensitive drugs that cannot otherwise be given orally. (Soligenix, Inc.)

Patents are pending for this the Lipid Polymer Micelle (LPM™) technology in the United States.

But I wonder, will Soligenix merely use this new technology as a platform to reach more endometriosis patients with their medication? Or, will they use this opportunity to lower the cost of GnRH agonist medications both reaching more patients and aiding a burdened health care system beholden to wealthy drug companies? One can argue that by lowering the cost of the medication they can reach more patients, thus increasing their overall profit margin. And while this may be smart marketing – I’m not a marketing major – will Soligenix do it? Or, will doctors begin pushing yet another drug onto already frustrated endometriosis patients. But now, instead of fending them off with “but it’s a shot and I’m just not ready for that!”, or, “it’s a long acting shot, I don’t want that in my system!”, they can retaliate with it being an easy to swallow pill that we can stop at anytime. Or, will this be a once a month pill, or once every three-month pill like? And if that’s the case, should we assume it will be more expensive because of its ease of use promise?

Right now, there are too many questions left unanswered. Yet, the fact that a company was ingenious enough to develop and patent a method to orally deliver a medication such as a GnRH agonist is impressive. As I previously stated, this post is not for defending or refuting GnRH’s. You may love them or hate them. They do have serious side effects and if one is considering using them one should weigh all the evidence, do their research, and make their own choice based on their personal medical needs. Some people experience horrific side effects with GnRH agonist’s – some lasting for years after stopping therapy – while others swear by the medication and wish they could take them continuously. Knowing how your body reacts to medications is vital in chosing which medicinal therapy to employ for your battle with endometriosis. And that is a decision that should be made between you and your doctor.

Drug Withdrawal

How well does your doctor know the symptoms of withdrawal from the medications he or she has you on? How well do you know them? How well do they know the uncommon symptoms of your medications?

I recently became all too aware of how little my neurologist knows about the uncommon symptoms of withdrawal from one of the medications he has me on . I was taken off the medication, and this was done in a very safe and very common schedule. There should have been no complications, or at least that my doctor was aware of. But then, four days later, I had to have my medication restarted. But why?

I was stepped off over a three-day period, as is customary for this medication. My dose was significant but not extreme. But still I had an unusual side effect from my body experiencing withdrawal. It took four days and a trip to the emergency department to figure this out as the withdrawal symptom is not one my doctor had ever seen. Having experienced this once before when I ran out of my supply and my pharmacist and doctor’s office had a communication problem which resulted in me going 24 hours without my medicine, helped the doctor and the emergency department determine that the cause of my unusual systemic reaction was indeed the medication (for a while we believed it was a reaction to the H1N1 vaccine). I was urged to begin taking said medication again, and within 2 doses I began showing improvement. After 24 hours, I was beginning to feel semi-normal again. And after 48 hours of being back on the medication, I was my old self.

The systemic reaction was a whole body nerve type itching without rash that extended from the top of my head to the soles of my feet. Benadryl with Atarax was tried to abate this with no help. We are giving my body a couple months back on the medication and then doing a very, very slow tapering.

This just reminds me of how we need to be vigilant in regards to how medicine interacts with our bodies. The medication I’m on, and was taken off of, is a powerful muscle relaxant. My body has become accustomed to it and, when it was withdrawn too suddenly – despite the time frame being the norm for medical standards – my system reacted negatively. These reactions should be documented, and I am confident my doctor has done so after he learned of mine. If new reactions to medications are not documented and circulated, then clinicians are still in the dark and must rely on the outcomes of drug trials.

Protected: Physical Therapy – an update

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16 with endometriosis: a reply

I received this comment on the post Stage of Endometriosis and felt it much better to address the answer in this fashion. The comment follows:

I am only 16 and i have endo. I am always in a lot of pain and i have been given birth control in order to control my endo.It always make me feel so sick. Im not really even sure if it is a very serious problem and the docs have made me feel kinda stupid about it.
Any advice? – jess73

This is not the first time I have received a comment like this, and unfortunately because of the nature of this disease, I am sure it will not be the last. But, because of the overwhelming frequency, I felt making an example of this comment – thank you very much to jess73 for asking it – would be more fruitful for those who stumble upon this blog in search of answers.

First, let me tackle the birth control and endometriosis band-aid enigma. Jess73, and all the rest of us endometriosis patients, have or will learn at some point that medical science is at a loss as to what exactly causes endometriosis. Yes, they don’t know. And because they don’t know, they don’t really know how to fix it. They throw hormones at it, struggling in vain to quench the fire that feeds the implants (“quick! grab that hose of Lupron and suppress her estrogen with chemicals, there’s endo growing on that ovary!”). They slice and dice and burn and excise until our abdomens shun bikinis and begin to look like a battle has been waged with mini nuclear warheads on its surface; our belly buttons deformed from the bloodshed.

And the doctors’ first line of hormonal attack: birth control pills. Those little multi-colored, hormone packing pellets work for some and are intolerable for others. Yes, some with endometriosis swear by them. They would never be without them! They take the 4-month-on packs and relish in the glow of no periods and pain. But for others with endometriosis, a rather large portion of us I’m afraid, those tiny pucks may as well be pure poison because they bring nothing but toxic nightmares into our lives. Anything from migraines to constant bleeding and pain to violent mood swings to the woman who is hormone sensitive. Some people are lucky and get one bad symptom, and perhaps they can live with it and stick it out for a while on the BCP rollercoaster, but others hit the jackpot and life becomes unbearable.

Birth control pills can make you feel very sick. They are loaded with nasty, unwanted side effects. Anyone on any medication should familiarize themselves the with side effects. If a strange and new symptom is lingering, check it out and see if it’s something you can live with or need to see your doctor about.

Next, jess73, as to your doctor situation… you have two things working against you. In one corner, you have endometriosis. In the other corner, you are 16. Many doctors, especially males, can’t even begin to fathom how painful endometriosis is. Endometriosis is literally a silent life sentence because you feel you are living a life sentence without parole and you have no one to talk to because no one understands. Internal chronic diseases are extremely difficult for someone to connect with unless they have it too.

And finally, and not least in any way, endometriosis is very important! It’s important for it to be treated while you are young. As you age, endometriosis will continue to grow. If this grows on the fallopian tubes and ovaries, it can cause fertility problems. It’s vital that, if possible, endometriosis is dealt with before marriage and children are discussed.

Paper Review – ‘A call for more transparency of registered clinical trials on endometriosis’ PART ONE

In Volume 1, No. 1, 2009 edition of the medical journal Human Reproduction a debate paper debuted titled: A call for more transparency of registered clinical trials on endometriosis. This was published by Sun-Wei Gou of Renji Hospital, and the institute of Obstetric and Gynecological Research; Lone Hummelshoj – Secretary General of the World Endometriosis Society; David Olive of the Wisconsin Fertility Institute; Serder E. Bulun of the Division of Reproductive Biology Research, Department of Obstetrics and Gynecology at Nortwestern University in Chicago, IL; Thomas M. D’Hooghe of the Department of Obstetrics and Gynaecology, Leuven Fertility Center in Belguim; and Johannes L.H. Evers of the Division of Reproductive Medicince, Research Institute GROW at Maastricht University Medical Center in the Netherlands.

I was searching the databases one day when this article appeared. Thankfully, Sun-Wei Gou was generous enough to provide a copy of the piece for me to review as my database did not allow me access. But why did this article catch my interest?

If you are a regular reader, or were especially around in March, then you will know how adamant I, and other endometriosis bloggers, have been about the need for clear transparency when it comes to endometriosis drug trials. We spoke about this in length when a certain endometriosis organization refused to disclose their donor list, or release their research findings – even to the very participants they sought to recruit for their studies. Nevertheless, this review came across my radar, and of course I had to review it.

While reading this debate piece, during the researcher’s opening statements, the following section of text grabbed me: “…more efficacious therapeutics, preferably with improved safety and cost profiles are sorely needed (Nothnick and D’Hooghe, 2003; Fedele and Berlanda, 2004). (p. 1)

In their opening, the researchers discuss how the current medicinal management in use for endometriosis is under par for patients’ pain symptoms, and how the current – and popular use – of continuous use birth control pills is not an effective treatment for endometriosis or endometriosis pain.

Could gynecologists be referring patients to continuous use birth control treatment, and other treatments, because of the lack of new treatment options? This could very well be the case. But we must ask why, with all the money being funneled into drug research trials why has there yet to be a new drug breakthrough for endometriosis. The researchers post this question, as well.

According to the review, because of the secrecy surrounding clinical trials, the US Congress became involved in an effort to regulate and draw these billion dollar funnel holes into the light. In November 1997, Congress enacted Section 113 of the Food and Drug Administration Modernization Act and this created the website ClinicalTrials.gov, a website where researchers are encouraged to list drug trials. Some medical journals followed along and announced that they would not publish research that had not been previously registered with website such as ClinicalTrials.gov. Then ten years later the World Health Organization follows with their website. Since then, Congress has revised the parameters in which ClinicalTrials.gov operates within the scope of the FDA to improve safety measures for drug and medical device trials.

According to the writers of this article, the importance of ClinicalTrials.gov, and sites like it are that the:

… data will be available to the public within 12 months of trial completion or within 30 days of FDA approval (or clearance) of a new drug, biological or device. Clearly, the pressure is mounting for more transparency of all clinical trials, to the benefit of those who research disease pathogenesis, and ultimately to those who suffer from conditions such as endometriosis. (p. 2)

As medical bloggers, patients, activists, etc, we can take an active part in these clinical trials by watching them from formation to completion. We can make these drug companies accountable. Because, as I will get to later in this review, the alarming fact is that a large portion of these clinical trials – these expensive clinical trials – are seen through to completion with no research date being published for peer or public review. I will get into that in depth later in the review, but for now, let’s discuss current endometriosis research numbers on ClinicalTrial.gov.

The researchers conducted their own search for ‘endometriosis’ on the website at the time of writing the review, but I wanted to do a more updated search. Mine was conducted on November 5, 2009 in the afternoon. My search for the term ‘endometriosis’ pulled 73 studies, 24 of which were open. The rest were either completed or not actively recruiting. Out of those 24, at the time, there were only 2 that pertained to a particular endometriosis drug or treatment.

PART TWO will continue next week…

Chronic Illness:finding a new “normal”

I just read a post on another blog that inspired this blog post. The topic was about how, once you are diagnosed with a chronic illness – this one was endometriosis, you are forced to find a new “normal.” There is no returning to the life you were accustomed to pre-diagnosis, pre-pain and discomfort. There is no denying you are a changed person.

Chronic illness scars you – leaves battle wounds on your heart, and on your psyche. It permanently changes the way your look at life and those around you. And if you are not careful to realize how blessed you are that your illness is “chronic” and not “terminal”, your pain will become a bridge that divides you from those who love and care about you. You will regret not being able to do the activities you once could. You will regret having to adjust to a new lifestyle. Depression will eat you. Anger will manifest in your core. And no one will want to be around you. There you will be, isolated, with your illness alone to keep you company.

In order to persevere, we who suffer with chronic illnesses must learn to create a new “normal.” This new normal must not shut out those who loves us. This new normal must not discriminate against the “healthy ones” who can’t understand our pain. This new normal must try to fight with every cell in our bodies against the stigma that comes with “chronic illness”. This new normal must take a firm stand and say “we are chronically ill, not chronically lazy, not chronic hypochondriacs, or chronic attention seekers! And we will not accept ignorance and discrimination anymore!”

At least that’s my “normal.” My normal doesn’t take any crap from any doctor, nurse, clinician, or bystander. And as long as I stick with that normal, I feel good. I feel balanced. There is no depression or anger. There is no regret over things I can’t do. I may push myself too far sometimes, but I suffer for it when I do. I realized I couldn’t be happy unless I pushed myself once in a while. But everyone is different. And that is fine. Everyone needs to find their “normal” and then be content with it.

In other news: My review of “A call for more transparency of registered clinical trials on endometriosis” – Debate Paper published in the journal Human Reproduction, is in the works and should be up by the end up weekend – if not sooner. Keep and eye out for it!

Article – “Overpriced Poison?” UPDATED

This article popped up in my Google Alerts this morning and I couldn’t resist reading it. It discusses a couple women’s reactions to Lupron. A must read for anyone contemplating taking that drug, for sure!(PT1) Overpriced Poison? and (PT2) Overpriced Poison?