We MUST Persevere

Endometriosis — just like any chronic illness — is a battle; however, the battle with the E beast is unlike standard issue military battles, where generals shuttle troops along the field, call in ballistic strikes from continents away, or rely on media coverage and polling data to determine the next course of action. No, the war with endometriosis is a never ending. Even with the natural decline in estrogen and implant death that comes after menopauses, the emotional and internal (and sometimes external) physical scars remain.

And for the menopause-thru-hysterectomy units, these women have fought their own vicious battle. A battle fraught with early menopause and hormonal supplements. Some women weather the battle better than others, while many return from the war wounded and unrecognizable from their former selves. Depression. Migraines. Lack of a sex drive. Pain. 

We women with endometriosis command the front lines. In our daily lives we are bosses, teachers and police officers… We are important members of a constantly moving, ever-present society. We must be on 24/7, and often pain gets in the way. And yet, when we dare ask for reinforcements, we are pegged “seekers.” Or worse, this daily battle we fight is in our heads. 

Doctors shrug off our pain and downplay the war waging in our pelvis’s. They toss a new strategy to keep the battle going — antidepressants, NSAIDS… the list is endless. But until a covert mission (i.e. a laparoscopy) is ordered, doctor’s won’t invest in the battle. And getting a doctor to sign off on that mission can be near impossible — at least until you’ve exhausted their mini attacks without success.

Even with spy data confirming enemy presence, a doctor will sometimes be cautious in their approach. I’ve heard from various women with Stage IV endometriosis and their doctors prescribe a course of birth control. Only. Two of these women hadn’t had their endometriosis removed during the original laparoscopy. 

Some will say that the endometriosis war is a series of hellish battles. And I would agree. There is the daily battle. It’s wounds are depression, isolation and anguish — beyond the physical symptoms. There is the battle to diagnosis. It’s wounds are frustration (navigating the healthcare system is a daunting tasking — arm yourself with education and backup), powerlessness (doctor’s can be overbearing — remember, they work for you) and uncertainty (new medications come with side effects — keep a journal). Then there is the battle of knowing. It’s wounds are denial (even if you’ve been searching for this answer, it’s normal to question the diagnosis), anger (your body has failed you; doctor’s may have taken years to diagnose you or are suggesting a treatment you’re not comfortable with; or they believe you’re infertile), bargaining (this one applies to endometriosis patients who experience infertility, especially), depression, and finally acceptance.

But the thing about battling a chronic illness is that it’s never ending. And so are the stages of grief. Even once you’ve accepted it, you may find yourself angry that a new treatment failed; or bargaining for another surgery when the doctor insists it won’t help.  

Regardless of where we are in the war, one thing is certain: We MUST persevere. 

We must press for further research and back scientific endeavors searching for a cure. We must write our political figures and insist on protective legislation. We must stand firm and say NO to doctors when we feel uncomfortable about a drug or surgical treatment. We must feel empowered.  

We must win this war. 

Trigeminal Neuralgia Attack

Lightning ripping across my face. The red-hot burn, sizzling in my jaw. The tic that’s tacking it’s way from inside my ear to the corner of my eye…

This description fails to capture how severe trigeminal neuralgia pain can be.

Trigeminal Neuralgia “is a chronic pain condition that affects the trigeminal or 5th cranial nerve, one of the largest nerves in the head.  The disorder causes extreme, sporadic, sudden burning or shock-like face pain that lasts anywhere from a few seconds to as long as 2 minutes per episode.  These attacks can occur in quick succession. The intensity of pain can be physically and mentally incapacitating.” (National Institute of Neurological Disorders and Stroke)

I have been living with this condition for years now. It’s been had been 7 months since my last attack. Then yesterday morning, while I was heading into the breezy spring weather, the familiar shock of anguish rippled from my ear to my jaw. Rapid, and I held my breath, yet it returned. Repeatedly, the waves of gripping sharpness coursed through the right side of my face.

I’m on day 2 of this attack. I have no guarantee how long it will last, or when it will reduce in severity. I wish I knew. My diet is consisting of soft, mushy foods so I don’t have to chew. And my talking is being reserved by vital and urgent replies. Those who are familiar with my usual chatty self find it both troubling and relaxing not to have me yapping.

My Baclofen was increased. This pains me because it took nearly a year to convince the Neurologist to decrease my dose. I put in so much time and effort only to feel like a failure. The trigeminal neuralgia wasn’t really gone, it was just hiding, waiting to jump out and bite my bum when I least expect it. 😦

The worst thing about this disorder is the unknown. I never know when I’m going to get a flare up. I never know how bad it will be or how long it will last. And being that way, it seems to have the upper hand. And I hate this! I hate living in fear during and right after an attack.

Or losing sleep…

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!!!

Why we need awareness

I was speaking with a health care professional last night. This is a woman I know, yet she is oblivious to the world of endometriosis.

I was retelling her an actual endometriosis patient story that was once e-mailed to me. This woman was in her very early 20’s. She had no children and was not in a serious relationship. After a laparoscopy, she diagnosed with Stage IV and advised to have a complete hysterectomy. She was advised to abstain from hormone replacement.

Two week post-op, this patient was admitted to the psychiatric ward, full-blown hysterics, and suicidal. Two weeks prior, she had been a happy and productive person. She held down a job, despite her illness. And even maintained solid friendships. She was in no way an isolated person. Yet, post-op, she began to retreat more and more as menopausal symptoms emerged. Her hot flashes turned into insomnia. She no longer ate at decent times… and that turned into not at all.

After the standard 72 hour hold, she was placed on antidepressants and estrogen. When she contacted me, it had been 4 years post-op. She was still taking antidepressants. She could no longer hold down a full-time job and worked now only part-time. Because of this she had to move back in with her parents, a move that took her 2 states away from her network of friends.

Despite the staging of her endometriosis, at the time of laparoscopy, her symptoms were rather mild. She reported mild pain the day before her period (4 out of 10), 8 of 10 during her cycle, and bloating after. Over the counter medication had been sufficient and work loss was minimal. She only had the laparoscopy because her cousin had similar symptoms but was having trouble conceiving. Her cousin’s endometriosis was mild (the patient couldn’t recall but believed it was Stage II), and was treated with laparoscopic removal. Fearing difficulty having children down the road, this woman decided to take pre-emptive measures.

After telling this story, silence followed on the phone line. Had I lost her, I wondered. Just when I was about to check my connection, a shocked voice says, “I had no idea hysterectomy isn’t a cure for endometriosis.” This is a front line health care worker.

How can we expect patients to know this when there are health care workers still oblivious?

This, my endo sisters, is why we need more awareness. We need the correct awareness. The peer-reviewed research. The search for the truth.

And speaking of awareness and finding the truth, I urge you to read the post on yellow washing over at Chronichealing.com.

Who pays for medical mistakes?

My project this week for class was to prepare a PowerPoint presentation presenting a real scenario in which error or negligence occurred in the medical setting. This was to reflect the economic impact of the situation. Normally I do not post my presentations on here. They usually focus on administrative garbage no one on here would care about. However, this presentation focuses on a patient having surgery for endometriosis. As you will see, the situation wasn’t grave (no wrong site surgery), but still affected the patient both financially and emotionally.

In situations like these, who pays? The hospital or the patient? As we discussed as a class, it’s too often the patient and the insurance company at a loss. The system needs to change.

Enjoy the presentation.

*This PowerPoint and all other content on this site are property of the author. Written permission must be sought before using anything from this site.

weekppt

The #endo Diet

I was just looking through something that hit my e-mail, something that reminded me of all those miracle diets we always hear about. You know the ones – the “grape fruit diet” types. But this one was a book based on something called the Endometriosis Diet. I’ve heard a LOT about this diet from other bloggers, and people on Twitter, but have never really looked into it that much. So I gave the link a quick look and one of the women who had claimed to have used the book and had followed the diet gave a run-down of what the diet eliminates. It sounded exactly like what my fellow #endo sufferers have spoken about. They claimed that eliminating wheat, dairy, soy, caffeine and alcohol from their diets, has dramatically decreased their pain, bloating, etc.

I’ve noticed since going meat-free, eliminating all but 1/4 cup lactose-free fat free milk in my cereal a day of dairy, and not really eating many wheat products, and not drinking/eating caffeine or alcohol, my symptoms have really been controlled. But not just that! I’ve found it much easier to lose weight – weight loss so far at 50 lbs! I’m looking healthier and feeling healthier. My skin is vibrant. I have more energy, and my chronic conditions don’t seem to be as much of a hindrance as they were a year ago. This may be because of the weight loss, but that, I feel, is in direct correlation to the change of diet. And, yes, it’s drastic! Many people have told me they couldn’t eat how I eat. And when I stray, I pay for it. But it’s worth it to have my pain be less.

I’m not endorsing any particular book, though. I’m sure we can all share our own recipes and find plenty on-line for free. But if anyone knows of a book that’s helped them, go ahead and leave it in a comment for others.

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?”