Arianna and Michael (Arianna) – #5 January 26, 2002

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For just over a week now I’ve been suffering from this annoying pain on my left side and lower back that steadily got worse. Not only that but I kept running to the bathroom even if I only drank a thimble full of water. I suspected a kidney infection.

I finally made an appointment with the doctor and I saw her yesterday morning and guess what…I’ve got a kidney infection. I went in, did a urine sample, the receptionist dipped the stick in it and asked if i was expecting my period any day now. I said nope not for another 2 weeks, and she said oh hmm, I said I’m susceptible to high protein levels. The doctor came in, looked at the stick, asked where the pain was, said “Yup you have a kidney infection” She wasn’t happy about me waiting an entire week but she understood why I had done it.
She’s given me a course of Macrobid to take for 7 days. She hopes I won’t have an allergic reaction to this stuff. She also ordered me to drink lots of cranberry juice. I wanted to laugh since that’s what I’d already prescribed for myself. :o)
I guess I’m going to have to not ignore any pain that I do have, especially if I realise it’s not endo pain. Oh well…Live and let Learn as they say.

Danielle’s Story about Endo on the Lung

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It was 3 years ago now when i started finding it hard to take a deep breath and swallow. I put it down to the fact i had a bad cough and that i also smoke.

It was a few months later when i first coughed up blood which scared the hell out of me. I then realised that there was definitely something wrong and it wasn’t all down to a cough. I went to see my doctor who told me i had a chest infection and prescribed me antibiotics. he also sent me for a chest x-ray just to be sure. Results of my x-ray came back as clear and so i presumed it was just the chest infection. A month later from the 1st episode i coughed up blood yet again and went back to the doctors who sent my phelgm away to be tested. I still hadn’t realised that this was happening only when i had my period. My phelgm came back clear and by this time i had coughed up blood once more. The doctor then wanted to send the blood i was coughing up away and so i did this waiting a month at a time. this time the results came back with an infection and i was prescribed the correct antibiotics. Yet again the same thing happened, i coughed up blood and this time i noticed i was on my period and that it seemed roughly 4 weeks between each episode. I went back to my doctors again and i explained about it co-inciding with my period and he mentioned to me endometriosis although he stated this was extremely rare. He wanted me to go away and keep a diary for 3 months which i did and sure enough on the 1st day of my period i would cough up blood. My doctor referred me to a chest specialist who carried out a CT scan which showed up nothing. He then performed a broncoscopy which is a camera down my throat into my lungs to see any abnormalities and they found a patch of endo on the tubes from my throat to my lungs. I then had to be referred to a gynaecologist for my treatment. Ihabe now finished my treatment of hormone therapy and i feel worse now than when i was coughing up blood. My throat feels constantly raw and i still find it difficult to breathe deeply and swallow. I seem to pick up colds and coughs really easily and i feel physically run-down. My whole body aches, even brushing my teeth is an effort and i’ve been back to my doctors who are saying i have stress??????? I don’t have a lot of pain occassionally i get cramps in my chest but they are more irritating than painful. The chest specialist did mention to me the possibility of cutting part of my lung away or freezing the affected area but i havent heard from him since.

I hope this helps sorry its so long-winded. There is very little info out there on endometriosis in other parts of the body and i never knew if my symptoms were due to endo or something else. I’m relieved to find that its not all in my head and that the symptoms are real.
By Danielle Parker

More Information on Lupron

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Lupron Depot interrupts normal menstruation and the production of estrogen.

The absence of estrogen reduces the growth of endometrial tissue. In some cases, Lupron can shrink the implants and provide significant relief from pain.

This medication creates a pseudo-menopause. Even though most women stop having periods during treatment, occasional spotting can occur. If you continue to have regular menstruation after your second injection, you should notify your physician. You could also experience hot flashes, headaches and vaginal dryness, which are menopausal symptoms.

A reduction in estrogen might also cause a reduction in bone mineral density. Once treatment is stopped, this is partially or completely recovered.
©Abbot Laboratories, Limited LUG/4A01 – April 1998

Information About Lupron

This article contains information on Lupron that I have gotten from the Inserts that came with my first Lupron shot.
From the Patient Information Insert that came with my Lupron shot:

-it is for intramuscular use only

-it comes in 3.75mg (1-Month slow release) and 11.25mg (3-Month slow release)

-it’s limited to women 18 years of age and over

-the proper use of Lupron Depot:
-very important your physician checks your progress at regular check-ups

-you might get a local skin reaction: itching, redness, burning and/or swelling at the injection site; the reactions are usually mild and disappear within a few days; if they persist or worsen, tell your physician

-you might get hot flashes; if they continue and make you feel uncomfortable, tell your physician

-if you develop: severe bone pain, severe hot flashes, heavy sweating, severe pain in the chest or abdomen, abnormal swelling or numbness of limbs, persistent nausea or vomiting, rapid heart beat or nervousness, contact your physician immediately


if you think you might be pregnant, contact your physician immediately

-always remember to:

-check with your physician or pharmacist before taking any other medications, including non-prescription (for colds, nausea)

The above information was from the Patient Information insert distributed by ABBOT LABORATORIES, LIMITED October 1999
From another Information Insert that came with my Lupron shot:
Lupron Depot is also known as leuprolide acetate for depot suspension; this is a synthetic, nonapeptide analog of naturally occurring gonadotropin-releasing hormone (GnRH or LHRH)

-it acts as a potent inhibitor of gonadotropin production when administered properly

-it exerts specific action on the pituitary gonadotrophs and the human reproductive tract

General Warnings from the Insert:
-isolated cases of short-term worsening of signs and symptoms have been reported during initiation of Lupron therapy

General Precautions from the Insert:
-those on Lupron therapy should be assessed on a regular basis by their attending physician

  1. Changes in Bone Density
  2. Changes in Laboratory Values during treatment: Plasma Enzymes, Haematology, Lipids,
  3. The safety of re-treatment as well as treatment beyond 6 months with Lupron has not been established.

Adverse Reactions:
-body odour, flu symptoms, injection site reactions, palpitations, syncope, tachycardia, dry mouth, thirst, appetite changes, anxiety, personality disorder, memory disorder, delusions, insomnia/sleep disorders, androgen-like effects, alopecia, hair disorder, nail disorder, ecchymosis, lymphadenopathy, rhinitis, ophthalmologic disorders, conjunctivitis, taste perversion, dysuria, lactation, menstrual disorders

-mood swings, including depression, have been reported as physiological effect of decreased sex steroids

-the following symptoms have been reported by patients while using this medication, but the relationship of the symptoms to Lupron hasn’t been established

-symptoms consistent with fibromyalgia (joint and muscle pain, headaches, sleep disorders, gastrointestinal distress, and shortness of breath)

The above information was from an insert that was distributed by ABBOT LABORATORIES, LIMITED July 1999

Arianna and Michael (Michael) – #4 January 13th, 2002

Right – Time for another entry – this months difficult period is finally over – seemed to go a bit faster this month…

I think it went faster as I was less involved due to Arianna’s depression with her period this time- it has meant she has been very quiet compared to normal – makes it very hard to know what she is thinking as she becomes very withdrawn – she also snaps a lot – not a big issue for me. However i feel her family bear the brunt of it – especially since my little miss becomes very stubborn in some opinions and hates it when she feels peoeel are intruding on hr space.
Unfortunately I cannot do very much for her at this time – maybe it will improve when she comes over – if not I am sure we can come to some sort of compromise 🙂

She worries about my reaction needlessly really and she tends to worry about coming to england due to all the unknowns we have at the moment – however I believe all will be ok and we will resolve all !!

Thats all for now

Mike

Pain Assessment

Pain Assessment & Management in the New Millennium
Understanding Pain

Pain, without question, is the most common reason individuals seek medical attention. It is estimated that nearly 50 million Americans are partially or totally disabled by pain, and 45% of all Americans seek assistance with pain at some point in their lives.(1) Some researchers are now even referring to chronic pain as a “disease unto itself.”(2)
Whether acute or chronic in nature, “pain” is defined by the International Association for the Study of Pain as “an unpleasant sensory and emotional experience associated with actual or potential tissue damage.” “Acute” refers to pain which has been caused by an injury, illness or surgery, responds well to pain management interventions and lasts less than 6 months. Acute pain generally disappears when the cause has been treated. Chronic pain, on the other hand, may last 6 months or more. It is a persistent state that is usually associated with a long term incurable or intractable medical condition or disease. Approximately 9% of the US adult population suffers from chronic, non-cancer related pain; the majority of which have been suffering an average of 6 days a week for over 5 years.(3)

Emotional and Physiological Effects

Pain may include a range of distressing emotional and physical sensations, including aching, tightness, stabbing, burning and/or numbness. Signs and symptoms of pain vary from each individual, based on the patient’s specific maladies.

Unrelieved pain has a wide spectrum of negative effects, including interference with mobility, sleep and daily routine; impairment of concentration and cognitive abilities; a loss of enjoyment of life; feelings of social isolation and inability to relate to others; conflicts in marriages or close relationships; and feelings of anger, fear, resentment, depression and anxiety. Physical effects include impaired mobility, GI and pulmonary functions; increased metabolic rate; decreased immune response; delayed wound healing; loss of appetite; nausea; and fatigue.

Pain can impair every aspect of an individual’s life.

Women Hurt Worse

According to scientific reports, women are more sensitive to pain and require stronger doses of pain medication. Scientists believe that these differences are linked to genetic factors.(4) Additional study into this area has shown that women respond differently to pain due to the activation of different brain circuits than male counterparts. Some researchers believe that “over time, men evolved with the ability to block pain of trauma, i.e. spear points and lion bites, while women, who were not traditionally exposed to hunting and fighting, have grown to become more attuned to visceral pain like childbirth.”(5)

Assessing Pain

The Joint Commission on Accreditation of Healthcare Organizations…

(the “Joint Commission”) standards assert that individuals “have the right to appropriate assessment and management of pain.”(6) Pain assessment is most often measured through the use of scales. Examples include the 0-10 Numeric Pain Intensity Scale, as designed by the Agency for Healthcare Policy and Research in 1992. This scale rates pain from 0=no pain up to 10=worst possible pain. Another scale used by some practitioners is a simple descriptive scale, with captions reading, “no pain, mild pain, moderate pain, severe pain, very severe pain, worst possible pain.” Still another, the Wong-Baker FACES Pain Rating Scale, uses descriptive cartoon faces to allow patients to pick the one they most relate their pain with. Faces range from happy to very sad.

Coping & Management

“Management” refers to a comprehensive approach to obtaining pain relief. The patient, in association with her physician and healthcare professionals, determines an effective management plan to keep her symptoms at a minimum and regain her quality of life.

Pain management can be achieved through varied methods, ranging from alternatives to opioids. Alternative techniques commonly used include relaxation, imagery, medical massage like shiatsu and reflexology, hydrotherapy, homeopathy, music therapy, touch healing, hypnotherapy, magnet therapy, herbalism, reiki, aromatherapy, diet/nutrition, supplements, ayurvedic medicine, acupuncture/acupressure, yoga, exercise regimens, TENS units and biofeedback. Psychological counseling is often incorporated into a patient’s pain management program to relieve anxiety, anger, fear and other emotional aspects of pain. Over-the-counter medications and non-narcotic prescriptions like NSAIDs (Non-Steroidal Anti-Inflammatory drugs) are also used for pain management and relief. Finally, narcotic prescriptions are used alone or in conjunction with other therapies to treat a patient’s pain.

According to the Joint Commission, the following levels of care should be adopted when treating pain patients:(7)

Level 1: Mild Pain
Initial choices for treating mild pain include NSAIDs, aspirin and acetaminophen.

Level 2: Mild to Moderate Pain
Choices range from non-opioid to combined non-opioid / opioid. Opioids may also be used alone as therapy for patients no longer responding to or tolerating non-opioids.

Level 3: Moderate to Severe Pain
Opioid analgesics are vital to the management of moderate to severe pain. Long-acting opioids are most advantageous for maintaining round-the-clock pain control while requiring fewer medication dosages.

Continued Lack of Relief

Unfortunately, in spite of medical advancements and a growing list of pain treatment options, pain management has improved little over the last several decades. Pain remains largely undertreated and seemingly ignored by the medical community, including at hospital level. One NY State study of pain control in surgical patients revealed that the majority of patients did not receive pain relief as recommended in federal standards issued in 1992 by the Department of Health and Human Services’ Agency for Health Care Policy Research.(8) Medical experts have even stated that the weakest and most severely ill patients, including children and the elderly, get inadequate relief for the intense pain of serious surgeries, injuries or prolonged/terminal illnesses. Additional reports show that during an office visit, physicians will frequently fail to treat, or even discuss, a patient’s pain.(9)

There are several reasons for the continued inadequate treatment of pain from both patient and practitioner standpoints, including:

Lack of Communication: patients who are not directly asked, and even some who are, often fail to speak up voluntarily about their pain for fear of appearing non-compliant or being viewed as “a bad patient,” having trepidation that they may be labeled a “drug-seeker,” and being concerned about having to take painkillers.

Physicians often fail to inquire about a patient’s pain level because of several deep-seated obstacles in the medical education process, including:

Lack of training: studies have shown that poor physician training, particularly in pain assessment as well as management, significantly impedes adequate treatment. Most medical schools typically offer their students little education in pain management. Indeed, in two studies, physicians delayed giving morphine to a dying patient until the prognosis narrowed to “6 months left.” This pain management “strategy” was practiced despite the physicians’ knowledge that morphine is required to treat severe cancer pain.(10)

Concern over adverse effects: fear that a patient will have a serious physical reaction to a substance has historically made physicians reluctant to administer and prescribe high doses of painkillers.(11)

Fear of scrutiny: in today’s polemical society, some physicians worry about being placed under investigation by State or Federal agencies – or even by a patient’s family – for writing alleged “excessive” prescriptions.

And then comes the Pandora’s Box of fear regarding opioids.

Tolerance, Dependency & Addiction

Opioids all work to relieve pain in the same fashion; by attaching to opioid receptors on nerve cells, thereby causing a decrease in the transmission of pain impulses to the brain. Opioid medications all differ in strength, duration of action and side effects. In addition, no two patients are alike and therefore differ in reactions to the same drug.

One of the biggest impediments to pain relief is fear of addiction. While some believe that addiction and dependence are problems in pain patients treated with opioids, substantiated facts show that these fears are greatly exaggerated. For instance, in a review of the records of 11,882 hospitalized patients treated with opioids, there were only 4 cases of addiction in patients with no addiction history. It is further believed that opioids “depress respiratory function and are too dangerous to be dosed safely.” Research has shown that in reality, while respiratory depression is indeed the chief hazard of opioid use, clinically significant respiratory depression rarely occurs in patients in pain for whom doses of opioids are appropriately prescribed.(12)

Tolerance: refers to “a decrease in the effect of a drug in response to repeat exposure. All opioid medications are capable of inducing tolerance.”(13)

Dependence: a “physiologic state in which abrupt cessation of the opioid results in a withdrawal syndrome. Dependency is an expected occurrence in all individuals using opioids for therapeutic and non-therapeutic purposes. It does not, in and of itself, imply addiction.”(14)

Addiction: addiction in the context of pain treatment with opioids is characterized by “a persistent pattern of dysfunctional opioid use that may involve any or all of the following: adverse consequences associated with the use of opioids; loss of control over the use of opioids; and preoccupation with obtaining opioids despite the presence of adequate analgesia.”(15)

It is further noted, “…individuals who have severe, unrelieved pain may become intensely focused on finding relief for their pain. Sometimes such patients may appear to observers to be preoccupied with obtaining opioids, but the preoccupation is with finding relief of pain rather than using opioids per se. This phenomenon has been termed ‘pseudo-addiction’ in the medical literature.”(16)

Risks & Side Effects of Opioid Maintenance Therapy

As with all medication, opioid therapy entails a number of risks including sedation, possible liver or kidney damage if taken chronically, constipation, insomnia, decreased libido, itching, depression, loss of menses, urinary frequency, urgency or retention, muscle spasms, fatigue, GI disturbances such as nausea or vomiting, edema, weight fluctuation, headaches and withdrawal syndrome.

The most common symptoms of withdrawal syndrome are an increase in pain, general aching, cold sweats, restlessness, tremors, dizziness, nausea, vomiting and diarrhea. The syndrome can be

stopped by resuming opioid medications. If you anticipate the discontinuation of any opioid, the dose should be gradually tapered to avoid or lessen this withdrawal syndrome.(17)

The Oxycontin Controversy

Originally met with international support the year of it’s launch,(18) Oxycontin is making the news again; this time with a reputation as the latest “street” drug.

Oxycontin is a unique form of oxycodone. It is extremely effective for time-released opioid pain control in both cancer and non-cancer pain patients. Oxycontin is the only oral oxycodone that acts for a full 12 hours to relieve pain, making it the longest-lasting form of oxycodone to date. It also contains no aspirin or acetaminophen like its competitor products, which may be potentially toxic in maximal daily doses. Analgesic onset occurs within 1 hour in most patients.(19)

Oxycontin has been hailed as a “miracle drug” by chronic and acute pain patients everywhere, in a society where pain has generally gone undertreated. Unfortunately, the drug has now been nicknamed “the poor man’s heroin” because of it’s cheap price on the streets. Some have even called the illegal distribution of Oxycontin an “epidemic.”

When Oxycontin is broken, crushed and inhaled or injected, as is the method of ingestion by abusers, it is potentially lethal. In two states alone, at least 90 people have died as a result of Oxycontin abuse.(20)

Despite success stories associated with the drug, the bad publicity is taking its toll. Some pharmacies are so afraid of being robbed that they won’t even carry the drug and an Alabama lawmaker is drafting legislation that would ban it altogether, except in cases of terminal cancer.(21)

To make matters worse, some physicians are even being accused of cashing in on this and other pain relievers. In one instance, investigators cracked a pain management clinic that was a front for one of the largest narcotic-selling operations in the Midwest. Oxycontin was prescribed in half the cases for which the physician who ran the clinic was charged. The physician pleaded guilty to engaging in a pattern of corrupt activity, forfeited his medical license and was sentenced to 3 years in prison. In exchange, prosecutors dropped 46 counts of drug trafficking against him.(22)

These unfortunate developments have resulted in patients with true, intractable pain being unable to receive Oxycontin. One State Department of Professional and Financial Regulations has even urged “extreme caution” and issued voluntary guidelines for physicians and pharmacists when prescribing or filling prescriptions for Oxycontin. Physicians have been recommended to use special prescription forms that cannot be copied; use numbers followed by words to describe the quantity and strength of medication; specify on the prescription the name of the pharmacy selected by the patient for controlled substance prescriptions, as well as the patient’s insurance plan; and to fax a copy of the prescription to the selected pharmacy, when feasible, for authentication.”(23)

Joining the War Against Pain

In order to overcome problems faced by patients and physicians alike in pain management, specialists are calling for enhanced pain management education in medical school, as well as implementing new reimbursement categories for pain among insurance companies. California is breaking ground in this area, addressing the needs of it’s residents by passing legislation to make pain the “5th vital sign” to be assessed and recorded along with temperature, pulse, respiration and blood pressure. California also makes medical license renewal contingent upon completion of education in pain management. It is hopeful that other states will soon follow suit.

If you or someone you love suffers from pain, chronic or acute, it is important that you become an educated patient. Understanding why you have pain is your first step to treating it. Finding a physician who allows you to be a partner in your healthcare is equally as important. Communicate what you are feeling: if your doctor doesn’t ask, volunteer the information. To assist you in your communication with your health professionals, keep a pain journal…when pain occurred, what you were doing at the time, how severe it was, what alleviated it and when it abated. Take your medications as prescribed. Finally, in appropriate instances, learn what definitive measures may be taken to alleviate your pain, i.e. surgery.

If you are a caregiver, educate yourself about your loved one’s condition and offer help in various ways, like helping them maintain their pain journal, running errands, picking up prescriptions, etc.

Certainly, pain management is possible. However, more attention to this matter is needed by both patients and physicians alike in order to provide significant relief to those in need, to afford patients freedom from disabling pain, to allow patients to become more physically active and socially productive, and most importantly, to allow those in pain to lead a more fulfilling life.

For more information:

To report a complaint about a Health Care Organization to the Joint Commission on Accreditation of Healthcare Organizations:
http://www.jcaho.org/compl.html

The National Foundation for the Treatment of Pain:

American Pain Foundation:
http://www.painfoundation.com/

American Chronic Pain Association:
http://www.theacpa.org/

American Society for Action on Pain:
http://www.widomaker.com/~skipb/skiphome.htm.html
Copyright (c) by Heather C. Guidone. All Rights Reserved. Do not Reproduce Without Express Permission From Author.

Arianna and Michael (Arianna) – #4 January 13th, 2002

Okay well the dreaded period is over…thank god! I’ve still got a bit of pain and such but it’s almost over. Still having some issues with lactating, but right now my biggest concern is that I was a total monster with PMS this time and I’m depressed.

Not quite sure if it’s the endo causing the depression or if it’s cause I’m worried about how my life is going to turn out in regards to when I’ll get to be with Michael permanently, but something sure has me depressed. I’m not as affectionate as I normally am and I can’t seem to get past a few things, I just seem to be throwing myself into my course work and staring at a computer screen. Well I guess that’s enough of this journal entry since it seems to be straying from the endo side of things. Wonder what Michael will post in response to this?

Misty’s Endo Story

My Endo Story

by: Misty Fout


In the Winter of 1994, I gave birth to my youngest daughter by c-section. I had so many female problems with her. My blood pressure shot up sky high and was rushed into intensive care which including becoming toxic. When she was delivered after 26 hours the doctor and anesthesiologists came to my bedside and told me that something was wrong. They wanted to admit me to the Hospital. I was not in the state of mind to answer and my husband at the time said “no”. Well, needless to say I came home and was still suffering problems from delivery. I had to be put on blood pressure medications.

A few years past in the summer of 1997 I became very ill after I delivered my second child (she was also by c-section and including tubes tide). He also, cut the nerves to the ovary to try to stop the pain, but it was still there. I laid in bed three weeks out of a month with pain shooting in the abdominal area. I called my obgyn and he took me in to his room, but to only diagnose me with Gas. After a couple years passed I became more demanding of my obgyn to go in and take a look. Even though his mid-wife all along kept telling him that I had endometriosis. So, In 2000 I got my first lap done. He found nothing and I just started crying because I felt hopeless of finding out where the pain was coming from. I did a little bit of researching on the net about this disease his mid-wife was telling me about. The symptoms were almost the exact thing I was feeling. So, I took my pictures and compared them with others on the net. Unexplained red rash was on it and apart of the ovary was uncovered (didn’t have the white coating on it). I then found me another doctor the beginning of 2001. It didn’t take but one week to get into surgery, and come to find out I had Endometriosis in stage I with the paracolonic gutter ablivated with adhesions. Including was a chocolate cysts that had been leaking (same ovary that was uncovered). By this time the cyst was so large that it was bigger then the ovary itself. However, it was not removed during surgery. I was put on a medication to decrease the size. The pain and torture my first obgyn let me go through was a nightmare. My current obgyn said “You need a hysterectomy”. I told him “No!”. Which only being 25 years old I feel its way to soon yet. He put me on Synarel and it did work but, I suffered severe sore joints. He never tested me for bone loss. He then put me on Danocine. He never did any type of liver check either. There supposed to check your liver and your possible bone loss while on the medication. While I was on it, it was a total nightmare because my blood pressure shot up for the first time in a couple years. I felt sick all the time. I decided to just go off of it and I have never felt better being off the medications, but still have my pain and symptoms but, I don’t hurt after I have my period for a week.

I have been suffering from pain in the lower back, back sides, hips, leg shooting to knee, joints sore, abdominal swelling, painful bowel movements and frequent urination and uncontrollable leakage. I have also lost the feeling in my left leg and this only starts when I start ovulating to the end of period. I am currently seeing a neurologist to see what this is from. One of my doctors seems to think that its due from the adhesions effecting the nerve endings. I have been experiencing mild headaches that lasts for a couple days (never had this experience) and I have had the same cold for 6 months. The cold seems to get better with medication but when I get off of them it comes back. I was told by the EA that it could possibly be Autoimmune dysfunction. This is only the beginning of fighting back. I know this disease can be very depressing. I have a history of depression.


There is nothing like to know something like this is in your body and your body tells you everyday “there is a battle”. I’ve walked your road and I know how you feel.

Post Traumatic Endometriosis Syndrome

hink I might be suffering from “Post Traumatic Endometriosis Syndrome.”
The DSM-IV classifies “Post Traumatic Stress Syndrome” as having the following criteria:

The person has experienced a traumatic event that involved actual or threatened death or serious injury, or a threat to the physical integrity of self or others, and the person’s response involved intense fear, helplessness, or horror;

The traumatic event is re-experienced in specific ways such as recurrent and intrusive distressing recollections or dreams of the event;

Persistent avoidance of stimuli associated with the trauma or numbing of general responsiveness;

Persistent symptoms of increased arousal, such as hypervigilance or irritability;

Duration of the disturbance is more than one month; and

The disturbance causes clinically significant distress or impairment in functioning.

I can’t find any classifications in the DSM-IV for the following, more specific criteria:

The person has experienced a traumatic event such as Endometriosis, in which she sustained repeat surgeries and/or ineffective medications, to which her response involved intense fear, helplessness, horror and suffering in silence;

The traumatic events of life with her incurable disease is re-experienced in specific ways such as recurrent and intrusive distressing recollections or dreams, such as memories of surgery and/or ongoing or previous pain associated with the disease;

Persistent avoidance of stimuli associated with the trauma or numbing of general responsiveness, such as the avoidance of normal social interaction, for fear of having a “pain attack,” or avoidance of such settings as baby showers and the like, for fear of having an emotional breakdown due to one’s own infertility;

Persistent symptoms of increased irritability, due to living in chronic pain and having such symptoms summarily dismissed on a regular basis by healthcare providers and loved ones alike;

Duration of the disturbance is more than one month, sometimes even more than 15 or 20 years; and

The disease causes clinically significant distress or impairment in functioning.

I qualify for almost all of the above criteria. Anyone else? Having not been able to find a suitable classification for this disorder, I have now begun calling it “Post Traumatic Endometriosis Syndrome.” It fits.

Rarely do I share such personal introspection on my private battle with the disease, for I fear to do so would show a crack in my armor of hope. I have been Endometriosis-free for nearly 3 1/2 years – physically. Mentally, I still live in the shadow of the dragon, fearing that it will someday return. Like a bad dream, my memories of how it was to live everyday in pain and emotional anguish haunt me. It further saddens me to see so many women still suffering, even in this day and age of supposed medical miracles. Where is the CURE?

I wonder if I will ever be truly free from the encumbrance of this disease? Thanks to a wonderful specialist, I am physically disease-free, and what’s more, I won my 6 year battle over Endometriosis-related infertility, having my miracle child before succumbing to a complete hysterectomy. I beat my Endometriosis!

So why am I still worried about an illness that should be nothing more than just a fleeting memory?

I may be “well” of Endometriosis, but the disease has made a lasting mark on my body – and my soul. The residual post-Endometriosis problems I deal with now are negligible compared to my 15 year battle against stage 4 disease…but they remind me that I am only but one step ahead of Endometriosis at all times. People often ask me why I still frequent the online Endometriosis community spots and why I have dedicated my life’s work to raising awareness and providing education about the disease, even though I am “well.” The truth of the matter is, I feel if I do not continue my efforts, then I discontinue my fight against the disease altogether.

“Post Traumatic Endometriosis Syndrome” or not, I intend to see this battle through to the end, resting only when the disease is eradicated from all of our lives for good. Join me in the war against this enigmatic illness – arm yourselves with knowledge, hope for the future, and the assuredness that our time of victory over Endometriosis will come one day soon.


Copyright (c) by Heather C. Guidone. All Rights Reserved. Do not Reproduce Without Express Permission From Author.

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