endometriosis

Blog #12: New Drugs – Dr Albee’s Recommendations for Doctors & Patients Evaluating a New Drug Therapy

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THE RISK /BENEFIT RATIO

It is prudent to have a good idea of the risk/benefit ratio of virtually everything we put into our bodies. Think of foods, supplements, skin treatments, tattoos, and the like (for example, I do not use artificial sweeteners because I believe that the long-term risks are too high).

Drug therapies are no different and should be evaluated on the basis of a thorough evaluation of this ratio. Don’t forget that this ‘ratio’ should be personalized for each patient based on other coincident illnesses, medications in use, activity levels, compliance capabilities, tolerance for side effects, etc.

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As a patient looks to establish a risk/benefit ratio, it is also important to consider the source and quality of the information being used. In general, the greater the number of confirming sources the better. The more independent the source of information is from those who stand to profit from widespread use of the drug, the better also.

BENEFITS

First I would like to remind the reader of the general classifications of potential benefits from drug therapy for patients with endometriosis:

  • Symptom Control: As we know, the symptoms of patients with endo are many and varied. Symptoms are those things that make us aware of the underlying disease. Things like anti-inflammatory drugs, muscle relaxants, pain relievers, etc. are all used to reduce symptoms. It is not expected that they will make endo regress or go away.
  • ‘Disease’ Control: The ‘disease’ is the presence of endometrial glands and stroma in locations outside of the uterine lining. Certain drugs may have value in some patients because there is no evidence that the endo is advancing while the patient is on the drug and symptoms are not worsening. In my previous blogs on treatments, you will find some of these drugs listed in the category referred to as ‘suppressive medication.’
  • ‘Disease’ Regression: If a drug causes the ‘disease’ to be reduced in volume, I label the benefit as ‘disease regression’. Certain drugs have been able to show reduction in endometrioma size during treatment (again, I refer you to my ‘treatment blogs’)
  • ‘Disease’ Eradication: If a drug makes endometriosis actually go away, it would be in this class. I am not aware of any convincing data that documents endometriosis disappearing due to the effects of a drug. To my knowledge, this claim can only be made by surgical techniques.

The first step in evaluation a new drug is to be sure you know which of the above benefits you should expect.

RISKS

  • Potentially Serious:
    • Drug Reactions: Any individual may have a unique reaction to a drug. These reactions may be mild or serious (i.e. life-threatening). The FDA makes an effort to note (in the package insert) any potentially serious drug reactions that have been experienced. The problem is that package inserts are not updated as often as I think they should be when events occur that have not previously been observed.
    • Drug Interactions: Each time a new drug is marketed for general use, there begins a growing list of drug interactions. Drug interactions are untoward and often unexpected effects of the drugs when taken together. These drug interactions may negate the effectiveness of one or both drugs, and they may cause a variety of new health issues for the patient. In some cases it may take months or even years for these interactions to be recognized.
  • Side Effects:
    • When a drug is ingested for a specific benefit, it is common to experience other things that are not beneficial. For example, taking a strong iron supplement often leads to an upset stomach. Side effects can be minor irritations or significant impacts on quality of life.
  • Ineffectiveness:
    • Drug treatments are considered successful even when there is a significant failure rate. It is wise to know the failure rate when considering the risk/benefit ratio.

As an exercise, let’s pick a new drug chosen by the FDA to ‘fast track’ called ‘Elagolix’ (currently in ‘phase 3’ clinical trials) and come up with a risk/benefit ratio.

Elagolix is a GnRH antagonist. Drugs in this group work at the level of the pituitary gland in the brain to reduce or stop the natural process of ovarian stimulation (gonadotropins are normally involved in signaling the ovary to begin to mature an ova [egg] for ovulation and to signal the time of ovulation). This down-regulation of ovarian activity normally reduces estrogen production. In theory, the reduced estrogen secretion reduces stimulation to all estrogen sensitive cells including but not limited to endo.

Expected benefits:

  • Daily non-menstrual pelvic pain and daily dysmenorrhea (menstrual cramps) are the two most commonly evaluated symptoms. In a New England Journal of Medicine study (conducted by authors I know and respect), a dose related improvement in these two types of pain was documented at intervals up to 6 months. At the higher dose of Elagolix roughly 75% of patients reported a clinically significant reduction in menstrual cramps and roughly 50% reported a significant reduction in non-menstrual pelvic pain. If the lower dose was used, improvement in both categories was less.
  • A possibly unique benefit (that is unproven) is the ability to use Elagolix to gain symptom relief at doses that do not result in bone loss. Bone loss is an expected consequence of both GnRH agonists and antagonists.
  • Serious drug reactions were not reported in 872 women.

Risks:

  • We do not know if the disease progresses in some despite the improvement in symptoms.
  • Studies of other GnRH antagonists give no evidence that the disease is eradicated.
  • Side effects were reported in roughly 70% of patients. Most of these are those expected from estrogen deficiency and include: hot flashes, headache, sleep problems, mood swings, and joint pain.
  • 5-10% of study participants discontinued the drug before the end of 6 months due to an ‘adverse event’.
  • No data on long-term use is available. My personal experience is that soon after drugs in this class are discontinued, symptoms return.
  • If the diagnosis of endometriosis has not already been established by a surgical observation, it is possible that the wrong disease is being treated. The incorrect presumption that endo is present then leads to mistreatment and the consequences.

To sum up the risk benefit ratio of Elagolix based on available data, I would say that Elagolix is an as yet mostly unknown drug that has a moderately good chance of reducing an endo patient’s non-menstrual pelvic pain and dysmenorrhea. Its benefits are in the ‘symptom control’ group. Side effects should be expected and can be significant. The treatment is temporary, and is not expected to eradicate the underlying disease. Long-term follow-up of patients who have used Elagolix is not available. Drug interactions and effects on fertility are not known for this specific GnRH antagonist.

OK! Get busy before you put anything into your body and figure out your personal risk/benefit ratio.

Disclaimer: any and all material(s) presented herein are offered for informational purposes only. Such material is not intended to offer or replace medical advice offered by your personal physicians or healthcare professionals. No information herein should be considered as party to any doctor/patient relationship. All contents herein are © copyright by Robert B. Albee, Jr., MD except where otherwise explicitly noted. All rights reserved. This material may not be reproduced or utilized in any form, including electronic or mechanical, photocopying, recording, or by any information storage and retrieval system except for personal or teaching use with prior permission. Thank you.

Blog #10: Endometriosis & Pain

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We might think that endometriosis (‘endo’) pain would be something that every sufferer could understand in the same way. Unfortunately, this is not the case. Endo pain is multi-factorial and different for each patient. So, when a person says, ‘I am experiencing pain from my endometriosis’, other sufferers might assume that they know exactly what is being experienced. The truth is that pain from endo is often unique to the individual experiencing it.

One undesirable result of associating one specific group of symptoms with the diagnosis of endo is that this can lead to a delayed diagnosis – or no diagnosis at all, thus prolonging suffering and increasing the likelihood of disease advancement.

The factors influencing the type of pain a patient experiences include:

  • The location of the endometriosis lesion(s)
  • The amount of inflammation around the lesion and the blood supply to it
  • The proximity of the lesion(s) to local nerve supply
  • The organs affected by endo (peritoneum, fallopian tube, ovary, bladder wall, bowel wall, ureteral wall, vaginal wall, etc.
  • The presence of adhesions in the area
  • The presence or absence of prior pain in the same area
  • The concomitant use of medication including but not limited to:
    • Anti-inflammatory agents
    • Narcotic agents
    • Muscle relaxants
    • Seratonin modulating drugs
    • Ovulation suppressing medications
  • Physical activity
  • Application of heat and/or cold
  • Any practical or psychological benefit (whether the patient is aware of it or not) that the patient receives by way of ‘being in pain’
  • Anger and resentment that results in muscle tension

It is a daunting task to try to point out every type and location of pain that endo sufferers might feel and why it occurs in the way that it does, but I would like to try to describe some of them. If your specific situation does not seem to be adequately covered, send me an email and I will try to cover it as I have an opportunity.

TYPES OF PAIN

CHRONIC ACHE: See above example. I often think of nerve involvement or internal pressure when I hear this complaint.

COLICKY:  This pain is a slowly building and then residing pain. It is often associated with lesions on/in/or close to the wall of the intestine. As the bowel wall dilates to allow passage of gas/liquid/solid material, the lesion is variably impacted.

MENSTRUAL: Abnormal menstrual bleeding, clotting and cramping, etc. can be associated with several different causes. Endo is one of them. We will discuss other causes for difficult menstrual periods at a future time. Here it is important to know that other diagnoses should be considered as well as endo when trying to understand unusually difficult menses.

BLOATING: Usually means that for one reason or another, the transfer of gas/liquid/solid through the intestine is slowed and the bowel diameter is increasing. The patient is essentially ‘pregnant’ with a dilated intestine.

SHARP/KNIFE-LIKE/TEARING: May occur if blood is released into the abdominal cavity and irritates the peritoneum, or if muscle, containing lesions of endo, is stretched or moved. Sharp pain is also reported when any area of endo receives direct pressure such as the vaginal wall lesions during intercourse.

PAIN LOCATION

Pain occurring from above the knee to the mid chest still only covers about 95% of the locations that have been reported.

Pain location is certainly dependent on disease location and the nerves close by, but it is also dependent on the proximity of the lesion(s) to nearby organs and the impact of the lesion(s) on the natural function of the organ involved. For example:

A lesion at the top of the vaginal wall may not cause any pain in a resting situation, but may make sexual intercourse extremely painful, because intercourse puts direct pressure on the site of the lesion. A patient might say, “It only hurts when I have sex.”

Or, a lesion on the bowel wall in the area of the rectum may cause an ache when there is a need to have a bowel movement, and extreme pain (‘I faint every time I have to go to the bathroom’) as someone tries to have a bowel movement. Yet, after defecation, this individual may feel fine.

Or, a lesion on the surface of the ovary (or an endometrioma inside the ovary) may cause extreme pain around the time of ovulation. This person’s pain may gradually increase after menses and actually go away when the next menses finally starts (when the ovary returns to its resting size).

Or, a lesion in the posterior pelvis close to the local nerve supply may cause a chronic low back pain that never seems to go away.

Pain from ureteral involvement may mimic urinary obstruction symptoms, and pain from bowel wall lesions may cause distension of the entire abdomen.

The well-described scenario of painful menstrual cramps and backache is certainly very common and may even be associated with menstrual nausea and vomiting, but it is very important to understand the many other symptoms that may be caused by endo so that the diagnosis gets consideration.

INFLAMMATION

Inflammation is defined as ‘the reaction of tissues to injurious agents’ and ‘may be associated with redness, swelling, pain, tenderness, and heat.’ Inflammation commonly causes pain.

Endo lesions may have surrounding inflammation or they may not. Some lesions seem to be tolerated by the body without any surrounding reaction. We know that this is true because we can see at the time of surgery obvious differences in the surrounding tissue reaction when inflammation is present.

Endo lesions without inflammation may cause no pain at all. For example,  endo may be diagnosed by the surgeon at the time of an unrelated surgery (think appendectomy). When asked post-operatively, some have had no symptoms what-so-ever.

PROXIMITY TO LOCAL SENSORY NERVES

Sensory nerve supply is not uniformly distributed throughout the body and particularly the floor of the pelvis. One side of the body may actually be different than the other. Mesenteric fatty tissues have a different configuration of sensory nerves than the utero-sacral ligaments. As a result, lesions located far from nerve bundles may have little or no effect on pain.

ORGAN INVOLVEMENT WITH ENDO

Ovaries, fallopian tubes, intestinal walls, ureters, vaginal walls, and bladder walls are all vital organs that function independently in the lower abdomen and pelvis. When the function of one or more of these organs is impacted by the presence of endometriosis, it may cause pain. See above for examples of the different types of pain that might occur.

ADHESIONS

Adhesions are created when the body reacts to injury. They may be fine, filamentous webs, hard dense white bands, or glue-like attachments that extend from one structure to the other. Adhesions may form around areas of endo or occur after surgery to remove the disease. Whenever these attachments limit the free mobility of and organ, they are likely to cause pain.

A HISTORY OF PAIN IN THE SAME AREA

When someone has had severe pain in a specific area in the past, sensitivity in that area may increase. I do not understand the scientific reason for this to occur, but I believe it is real – not imagined.

USE OF CONCOMITTENT MEDICATION

First of all, I would like to make a plea for personal vigilance in the use of medication and supplements. In my experience, health care professionals and pharmacists do only a fair job of anticipating medication interaction. The best and safest way to add any medication is to first research it for yourself. This can be done online at various sites like https://www.webmd.com/interaction-checker/default.htm.

Narcotics, muscle relaxants, anti-inflammatories, and serotonin modulating drugs can all impact the pain a patient experiences at a given point in time. Because their mechanisms of action are different, healthcare professionals may use them independently or sometimes in combination. In each category, prolonged regular use of the drug may encourage a psychological dependence; therefore I advise extreme caution with regular professional re-evaluation when prolonged pain therapies are being used. Additionally, both narcotics and muscle relaxants may induce a physical addiction/dependence requiring medical attention.

Drugs that suppress ovulation may reduce pain by inhibiting the natural increase in ovarian size that occurs during the natural ovarian cycle. The secondary effect of minimizing estrogen/progesterone ups and downs may also reduce pain by reducing menstrual flow (or causing menstruation cessation altogether). We will talk about the mechanism of action of other drug therapies in a different blog.

HEAT & COLD

Heat tends to increase circulation to tissues and can be a great aid to healing; however, it may be associated with localized swelling in the tissues. This can be increase discomfort.

Cold tends to reduce blood supply and reduce swelling. It may also tend to relax tense muscles.

Alternating heat/cold therapies is a well-known method for enhancing healing and controlling pain, and is appropriate for endo patients.

See also my note about avoiding extreme heat on the abdominal wall. I have seen many cases of fat dystrophy from intense heat used because of disabling abdominal pain.

PHYSICAL ACTIVITY

As noted previously, physical activity may or may not increase pain. Movement of tissues containing lesions/cysts surrounded by inflammation often makes exercise uncomfortable. However, there is great individual variation and there are some who are able to exercise without pain.

It is rare that anyone needs to avoid exercise if it causes no pain (perhaps large ovarian cysts require caution), and in general, I think exercise when possible is a strong positive.

NEUROGENIC PAIN

Neurogenic pain is defined as pain due to dysfunction of the peripheral or central nervous system, in the absence of nociceptor (nerve terminal) stimulation by trauma or disease.

It is difficult to know how often neurogenic pain occurs in endo patients, but there are times when I suspect that this is the origin of pain. For example, I excise endo from a patient who has suffered for years secondary to misdiagnosis and ineffective treatments. She returns with the same pain that she has reported in the past. Yet, at a second-look Laparoscopy, there is no endo and there are no adhesions to explain the pain.

SECONDARY BENEFITS FROM BEING IN PAIN

I should not neglect to mention that psychologists/psychiatrists tell us that pain may be experienced when there is no obvious cause. Sometimes, the cause is present, but we just can’t find it. Sometimes, the presence of pain allows the avoidance of specific “undesirable” activities (work, sex, travel, physical exercise, etc.). In the latter situation, we labor to solve the wrong problem by looking for a pain source when none is going to be found. I advocate a thorough search for pain sources, but I try to also look for secondary benefits from having pain. Often the individual involved has no conscious awareness that the presence of pain is achieving another benefit in her life.

ANGER & RESENTMENT THAT RESULTS IN MUSCLE TENSION

This is probably not something that you would expect an expert on endo to be including in his blog, but I think that it may have value to a few individuals.

Anger (of any type and from any source) causes increased muscle tension and increased gastric motility amongst may other physiologic responses in the body. If there is a place in the body that is injured or inflamed, it will be particularly sensitive to surrounding increases in muscle tension. Those endo patients with GI symptoms may see their symptoms increase around times of significant anger.

Stay tuned for more on endometriosis, coming soon!

Disclaimer: any and all material(s) presented herein are offered for informational purposes only. Such material is not intended to offer or replace medical advice offered by your personal physicians or healthcare professionals. No information herein should be considered as party to any doctor/patient relationship. All contents herein are © copyright by Robert B. Albee, Jr., MD except where otherwise explicitly noted. All rights reserved. This material may not be reproduced or utilized in any form, including electronic or mechanical, photocopying, recording, or by any information storage and retrieval system except for personal or teaching use with prior permission. Thank you.

BLOG #7 QUESTION: ARE THERE ANY ‘ALTERNATIVE THERAPIES’ THAT MAY HELP?

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Disclaimer: The help I offer in this post is based mostly on observation of my patients whom I have had an opportunity to manage  and interact with over an extended period of time. I do not have any scientific evidence to support the conclusions I have drawn, and you should be sure to consult your individual provider(s) for personalized management.

DIET:
I recommend a diet emphasizing two components. First, your diet should reduce plant and animal sources of estrogen and estrogenic substances. Animals treated with ‘hormones’ to enhance animal growth rates and size may possibly contain estrogenic stimuli to existing endometriosis. There are also plant sources of ‘isoflavones’ and ‘phytoestrogens’ that may have the same potential effect. Think soy products, yams and the like.

Secondly, your diet should be of the ‘anti-inflammatory’ variety. There are a wide variety of these diets available to you online and I encourage you to look them up. The purpose of this component is to reduce the body’s inflammatory response to endometriosis. In theory, a reduction in the inflammatory response to areas of ‘endo’ might slow adhesion formation, swelling, vascular engorgement and micro-cellular influx.

SUPPLEMENTS:
The list of supplements my patients have tried is too extensive to discuss in detail here. However, I would like to mention:

Fish oil (be certain it is pharmaceutical grade): is a good source of omega-3 fatty acids. The anti-inflammatory benefits of omega-3s are well documented. Also, I prefer fish oil in liquid form. If your GI tract does not object, I would gradually increase daily intake up to 2 tbsp/day. Be sure to clear this with your regular doctor before initiating.

The B Vitamins:  are important aids to the metabolism of estrogens, and may also help in the conversion of fatty acids into the beneficial forms of prostaglandin.

HERBS:
I have followed many patients who have used herbal preparations on a regular basis and reported a better quality of life. Try them cautiously for intervals of time off and on to determine their value for you personally. Check with your primary care physician before initiating and be sure to rule out any interactions with current medications you may also be taking.

ACUPUNCTURE:
I have observed an inconsistent response to acupuncture in the patients that I have managed. Yet, I would suggest a trial for anyone anxious to see if pain relief or pain reduction can be achieved. I have never had a patient who tried acupuncture and had their endometriosis “disappear;” however, I have suggested it to patients as a means of possibly improving quality of life until ‘gold standard’ treatment can be obtained.

FloralHOMEOPATHY:
For many years I have shared an occasional ‘endo’ patient with a Homeopath in Atlanta for whom I have great respect. Most of these patients have ultimately chosen ‘gold standard’ treatment. Yet, I can think of several who have bragged on their experience with homeopathy and wanted me to recommend it to others. By all means – give it a try. I have never cared for a patient whom I thought was injured by homeopathy, although, I have managed a few who wish they had not delayed surgical excision of all disease.

AROMATHERAPY:
For help with massage, calming, and meditative approaches, give it a try.

 

 

MASSAGE THERAPY:
Massage therapy comes in many forms, but I have observed many patients who have received benefit from one technique or another.

‘Pelvic floor’ physical/massage therapy can be an important adjunct to the gold standard treatment of ‘endo.’  Thankfully, it is not required by all patients. I will discuss pelvic floor changes in patients with endo in a later blog. For now, let me just state that after endometriosis is removed, the spasm in pelvic floor musculature may persist. A good pelvic floor therapist can usually reverse these changes over a period of time if there are no other ongoing reasons for this muscular spasm.

Caution: deep pelvic and lower abdominal massage is of some concern in specific situations. Yes, I do believe that deep massage is necessary in many kinds of back, hip and shoulder pain to achieve muscle relaxation, but if a large ovarian cyst is present, there is a small risk of cyst rupture. This happened to one of my patients who was attempting to delay definitive surgical treatment. She experienced an immediate increase in pain at the time of the massage and required an emergency Laparoscopy.

HEAT/COLD APPLICATION: COLD!
In my experience, most people suffering from an acute exacerbation of their pain benefit most from application of cold as directly to the area as possible. Cold tends to reduce blood supply and thereby reduce localized tissue swelling. Remember that ‘refrigerator cold’ is usually fine. ‘Freezer cold’ can be too cold and can actually create frostbite. Be careful.

HEAT/COLD APPLICATION: HEAT!
Heat can improve blood supply and speed healing where inflammation and swelling have occurred. Again, please be careful. Extremely high temperatures (such as achieved when a person puts a hot washcloth over the abdomen, covers it with a plastic moisture barrier, and then places a heating pad on top of that) can cause a permanent skin mottling in the area due to “fat dystrophy.” This is due to fat degeneration under their skin. Sadly, for some, the pain they experience with endometriosis is so intense that they choose a treatment that by itself is painful and destructive. They tell me ‘it is better than doing nothing.’

Alternating between cold and heat is a technique used for centuries to aid healing.

I will discuss my observations regarding pain relief approaches in a blog to come. Stay tuned!

Disclaimer: any and all material(s) presented herein are offered for informational purposes only. Such material is not intended to offer or replace medical advice offered by your personal physicians or healthcare professionals. No information herein should be considered as party to any doctor/patient relationship. All contents herein are © copyright by Robert B. Albee, Jr., MD except where otherwise explicitly noted. All rights reserved. This material may not be reproduced or utilized in any form, including electronic or mechanical, photocopying, recording, or by any information storage and retrieval system except for personal or teaching use with prior permission. Thank you.

BLOG #6 – QUESTION: HOW SHOULD I FIND A TRUE EXPERT TO TREAT MY ENDOMETRIOSIS?

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Relative to most physicians who have not had gynecology-specific advanced training (such as an ‘Ob/Gyn’ residency), all gynecologists should be considered as general experts in endometriosis care, but with varying degrees of experience. Here are some hints to help you find the expert among the experts:

Start by doing your research!

  • If you know women who have been treated for ‘endo’, ask them about their experiences with specific doctors.
  • Google “‘endo’ experts” in your zip code, state, and geographic region to establish a list of possibilities.

Visit on-line ‘endo’ sites such as:

Acquaint yourself with valuable ‘endo’ advocate resources such as:

  • Nancy Peterson & Nancy’s Nook for Endometriosis on Facebook
  • Endometropolis on Facebook
  • World Endometriosis Research Foundation on Facebook
  • caseyberna.com
  • salliesarrel.com
  • EndoIreland on Facebook

Ask your regular gynecologist if he/she knows of anyone in the area specializing in treating patients with endo. Be sure that they understand that you are seeking to be treated by what we term LAPEX – Laparoscopic Excision, the gold standard, if that is appropriate for your situation.

Look for gynecologists demonstrating evidence of advanced surgical training.

  • Member of the AAGL (formerly known as the Association of Gynecologic Laparoscopists)
  • Certified as ‘ACGE” by the AAGL
  • Certified as ‘COEMIG’ (Center of Excellence in Minimally Invasive Gynecology) by Surgical Review Corporation
  • Establish a list of prospective doctors to evaluate further

Unfortunately, a broad and vastly mistaken assumption exists that all surgery for endometriosis is performed by surgeons of similar experience and skill. This completely overlooks the wide disparity that actually exists and does not address the issue of completeness in removing all disease at the time of surgery, ignoring the excellent results of truly skilled excisionists with adequate experience in recognition and total resection. Finding a true specialist can be critical.

When choosing your physician, consider the following:

  • Do not be afraid to see multiple doctors. The time and money that you spend will be rewarded in the end if your ‘endo’ is successfully treated. Traveling for appropriate ‘gold standard’ treatment is common because referral centers and/or true endo specialists are not found in every state.
  • Look for a doctor that is interested in you and will spend the time you need answering your questions. If you feel that your doctor is too busy, he/she probably is.
  • Make a list of questions that you would like answered by the doctor and/or his/her staff in order to help your selection process. See my suggested list of questions below to select the ones that you believe are appropriate for you.

Dr Albee’s list of questions intended to help you find the expert among experts:

  1. Do you prefer to treat ‘endo’ patients by surgically excising the disease – or by suppressing the disease with drug therapies?
  2. Do you believe in complete excision of all ‘endo’ in most cases?
  3. If you believe in surgical excision, do you remove all abnormal peritoneum or just what you think is ‘endo’?
  4. If you believe in surgical excision, can you do it Laparoscopically (this is ideal)?
  5. Do you send all tissue to the pathology department for evaluation and confirmation?
  6. How many patients have you treated by surgical excision in the last 6 months? (high volume is important: 0-2=small experience base, 3-12=worth considering, 13 or more=great experience and dedication)
  7. If you find invasive disease involving the urinary bladder, bowel or ureter, how do you proceed? (‘stop and refer to specialists’=acceptable, ‘stop and organize team to accomplish removal of all disease’=better, ‘proceed to treat the areas using available specialists on-call’=best)
  8. Do you provide your patients with complete record copies including operative reports, pathology reports and photographs?

Knowledge is power and when it comes to picking your doctor, deciding whether or when and which surgery is right for you, fighting for excision and adopting practices and lifestyle adjuncts that you can do for yourself as a partner in your own care, you are your own best advocate.

Stay tuned for Dr Albee’s thoughts about alternative medicine approaches, palliative measures, nutrition and lifestyle for the ‘endo’ patient!

Disclaimer: any and all material(s) presented herein are offered for informational purposes only. Such material is not intended to offer or replace medical advice offered by your personal physicians or healthcare professionals. No information herein should be considered as party to any doctor/patient relationship. All contents herein are © copyright by Robert B. Albee, Jr., MD except where otherwise explicitly noted. All rights reserved. This material may not be reproduced or utilized in any form, including electronic or mechanical, photocopying, recording, or by any information storage and retrieval system except for personal or teaching use with prior permission. Thank you.

Blog #3 Delaying Definitive Treatment: When, Why & Who?

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16_9210501799.jpgIt may be reasonable to delay the ‘gold standard’ (‘definitive’ treatment) in some cases. These include:

1. THOSE UNDERGOING OBSERVATION WITH OR WITHOUT SUPPRESSION
Particularly in young patients who experience symptoms suggestive of ‘endo’, I often observe them over a period of time (6-18 months). I may do this if they are managing their pain without narcotics, and their physical exam and pelvic ultrasound are normal without subtle findings suggestive of ‘endo’ (subtle findings to be discussed further in a later blog). I often suppress ovulation with a low dose oral contraceptive if tolerated well by the patient. During the interval of observation, I want to rule out other potential causes of the symptoms, and carefully monitor the trends in the patient’s pain levels, other symptoms, and any changes on examination or ultrasound.

2. INFERTILITY
Although fertility rates increase (in our data) after ‘excision’ in all but stage 1 patients, I advise practitioners to work with ‘reproductive endocrinologists’, and make the decision to advise surgical excision jointly. We will discuss the rationale for delaying surgery in certain infertile individuals in a later blog. However, it is true that I have delayed ‘excision’ in patients in order to continue a specific infertility treatment on a trial basis.

3. ASYMPTOMATIC PATIENTS WITH DOCUMENTED ENDOMETRIOSIS WHO ARE CLINICALLY STABLE
The patient that presents with documented ‘endo’ but is clinically stable is a candidate for delaying ‘excision’ if they can be followed by an experienced ‘endo’ doctor. They must be careful to report changes in symptoms, and have office reevaluation at 6 month intervals. The doctor must be one that actively looks for any indication that the endo is advancing. A thorough history and careful examination are important to recognizing signs of progressive disease. Ovarian suppression is certainly an option in these individuals. Postmenopausal patients (with known ‘endo’) that are asymptomatic are in this group, and are slightly more at risk if on hormone replacement.

4. PATIENTS THAT HAVE HAD ENDOMETRIOSIS SURGERY RECENTLY THAT WAS NOT ‘DEFINITIVE’
Many patients are referred to an ‘endo’ specialist after a diagnostic surgery, or a surgery that left endo behind. They may need time to evaluate benefits from the surgery just performed, or additional time to plan for a ‘definitive’ surgery that may have additional risks.

5. PATIENTS WITH CO-MORBIDITIES THAT MAY INCREASE RISK
Important to the decision to perform any surgical procedure is the ‘risk’ to ‘benefit’ balance. The existence of other diseases, conditions, and genetic factors can significantly increase surgical risks. The decision to avoid or delay surgery is best made by each individual and her doctor after taking into account the possible increases in risk due to a ‘co-morbidity’. See also: Surgical Risks: What’s the Big Deal?

STAY TUNED FOR MORE TO COME!

Disclaimer: any and all material(s) presented herein are offered for informational purposes only. Such material is not intended to offer or replace medical advice offered by your personal physicians or healthcare professionals. No information herein should be considered as party to any doctor/patient relationship. All contents herein are © copyright by Robert B. Albee, Jr., MD except where otherwise explicitly noted. All rights reserved. This material may not be reproduced or utilized in any form, including electronic or mechanical, photocopying, recording, or by any information storage and retrieval system except for personal or teaching use with prior permission. Thank you.

Blog #2: My Suggested Treatment Plan

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In most cases, I favor treating patients definitively (I will list the exceptions to this recommendation in following commentary).

This means that I recommend all endometriosis is completely excised from the body. Up to this point in time, the only way that I am aware of that this can be done is by surgical excision. While I favor doing this Laporoscopically (using small umbilical and accessory ports for instrument insertion), this treatment can also be done by laparotomy (open incision). The energy source used for excision is best left to the experience and confidence of the surgeon, but I use the carbon dioxide laser as my energy source (why will be the discussion of another blog; see also http://centerforendo.com/dr-albee-on-excision).
china6There is one critically important aspect of excising all disease that is often overlooked by surgeons. Subtle ‘endo’ can hide in peritoneum that looks atypical, but does not have one of the ‘classic’ appearances of ‘endo’. In order to have low recurrence rates, surgeons must not leave any disease behind. This means that the surgeon must be committed to removing abnormal/atypical peritoneum even when it does not have a ‘classical’ appearance. For more on this discussion, refer to one of my academic papers on the subject: https://www.ncbi.nlm.nih.gov/pubmed/18262141.

Definitive treatment in my experience is the most effective treatment because it:

– Results in the longest intervals of time before retreatment is required (our data continues to indicate that 80-85% of our patients are currently free from any clinical indication of recurrent ‘endo’);
– Results in a significant improvement in ‘quality of life’ and pain reduction scores on follow-up surveys; and
– Fertility rates improve in stage 2, stage 3,and stage 4 cases after excision

The emotional burden of being told that you have an incurable disease is enormous. I do not tell patients that I am going to cure them, but I do tell them that if they have any more ‘endo,’ they will be the exception and not the rule (understanding that not all pelvic pain is the result of endometriosis and there are often comorbidities which also need to be addressed). Please note my above figure on our percentage of clinically disease-free patients after excision.

In following blogs, I will discuss the current objections to definitive treatment, and the reasons that I feel it is not more commonly used. But up next, let’s talk about ‘when I do not recommend definitive treatment.’ Stay tuned!

Disclaimer: any and all material(s) presented herein are offered for informational purposes only. Such material is not intended to offer or replace medical advice offered by your personal physicians or healthcare professionals. No information herein should be considered as party to any doctor/patient relationship. All contents herein are © copyright by Robert B. Albee, Jr., MD except where otherwise explicitly noted. All rights reserved. This material may not be reproduced or utilized in any form, including electronic or mechanical, photocopying, recording, or by any information storage and retrieval system except for personal or teaching use with prior permission. Thank you.

Blog #1 July, 2017 “The Great Treatment Debate:” first, lets define some important terms…

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Let’s use two large treatment categories:

  1. Definitive Treatment
  2. Non-definitive Treatment

‘Definitive Treatment’ includes all treatments intended to completely remove all areas of endometriosis.

  • Laparotomy with excision of all areas (using the technique and energy source chosen by the surgeon)
  • Laparoscopy with excision of all areas (using the technique and energy source chosen by the surgeon)
  • Hysterectomy/Oophorectomy only if all areas of ‘endo’ are also completely removed at the same time
  • Possible future techniques using external energy sources to remove ‘endo’

‘Non-definitive treatment’ includes treatment options intended to control the disease.

  • Observation: is really not in either category, but is still a ‘non-treatment’ choice if a patient’s diagnosis is uncertain, examination is normal, and pain is easily manageable
  • Disease Suppression:
    • Simple ovulation inhibition
    • Progesterone therapy
    • Anti-estrogen therapy
    • Advanced ovulation inhibition resulting in medical castration
    • Aromatase Inhibitors
  •  Disease Reduction:
    • Laparotomy with removal of some, but not all, ‘endo’
    • Laparoscopy with removal of some, but not all, ‘endo’

The standard treatment for ‘endo’ today has not changed significantly during my professional career. This approach is predominately ‘non-definitive.’ It begins with simple suppressive treatments, using stronger suppressive treatments when pain or infertility persists, and may include surgery with some disease removal, then ultimately leads to hysterectomy when the disease remains uncontrolled.

Sadly, I see many of these hysterectomized patients who actually needed only to have their ‘endo’ actually removed – excised – to achieve a satisfactory quality of life. Even worse, if all ‘endo’ is not removed at the time of hysterectomy, pain may continue despite the absence of the uterus or even ovaries if the patient is placed on hormone replacement (basically a good idea in the castrated woman of premenopausal age).

Why has the non-definitive treatment of the disease remained standard? Blog #2 will continue this discussion, along with my approach to treatment. Stay tuned!

Disclaimer: any and all material(s) presented herein are offered for informational purposes only. Such material is not intended to offer or replace medical advice offered by your personal physicians or healthcare professionals. No information herein should be considered as party to any doctor/patient relationship. All contents herein are © copyright by Robert B. Albee, Jr., MD except where otherwise explicitly noted. All rights reserved. This material may not be reproduced or utilized in any form, including electronic or mechanical, photocopying, recording, or by any information storage and retrieval system except for personal or teaching use with prior permission. Thank you.