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

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 #11: HYSTERECTOMY…WHEN AND WHY?

This article addresses hysterectomy in common benign (not cancerous) disorders, with emphasis on the role of the procedure in endometriosis.

uterus_xs_27232026Technically speaking, the surgical treatment of  endometriosis rarely requires removal of the uterus (see prior article on ‘the Gold Standard‘). Lesions of ‘endo’ are less common on the uterus, and superficial (serosal) uterine endometriosis can be excised without removing the uterus itself. The primary objective of surgical treatment should be the complete excision of each and every endometriosis lesion. The secondary objectives are the removal of adhesions and restoration of normal anatomy if at all possible (predicated on the degree of irreversible destructive change already present).

BUT…

The majority of patients are even more interested in pain relief and quality of life than the technicalities of the surgical procedure. Each patient has a unique clinical expression of her disease. This clinical picture is made up of how she feels, where she hurts and when, and her doctor’s observations and examination results. Special tests (like ultrasound, CT and MRI scans, etc.) may add to this picture.

If the ‘gold standard’ surgical treatment of Laparoscopic Excision (LAPEX) is performed and all endo is removed, but the clinical expression of her surgically treated disease remains a problem (despite the successful removal of all endometriosis), the treatment is a failure in the mind of the patient.

In my experience, the overall success of LAPEX in reversing the clinical picture of a patient’s endo is about 80%. This figure is based on our patient follow-up efforts regarding quality of life, any ongoing pain issues, and the frequency and outcomes of any subsequent surgical procedures for persistent pain.

WHEN IS HYSTERECTOMY OFFERED?

In my practice, the patient has always made the decision herself to have the uterus surgically removed, usually after my consultation and often additional  consultations. In these patients, I have advised them to consider hysterectomy, because there is evidence that they have additional uterine disease (e.g. adenomyosis) that is part of their clinical picture. Although we may have removed their endo prior to hysterectomy, we have not removed all of their sources of pain. Here are a few examples:

  • Adhesion Recurrence: in advanced stage patients, the surgical removal of all endo can leave many injured areas that must heal. The ultimate objective is that each treated area heals completely and independently (i.e not joined to any other structure). The greater the number and size of the areas treated, the more likely it is that tissues will be conjoined in the healing process. The recurrence or new formation of adhesions can cause pain very similar to the pain caused by the endo that we have removed. If these adhesions significantly involve the uterus, repeat surgery may be required for pain relief (about 25% of my stage 4 patients), and of this 25%, a few will choose to have the uterus removed so that it can no longer be encumbered by adhesions.
  • Adenomyosis: some patients have secondary problems in addition to endometriosis, such as adenomyosis. From Latin, this term literally means ‘gland in muscle’. If endometrial glands are present in the uterine wall interspersed amongst the smooth muscle fibers normally found in that area, it is called ‘adenomyosis’. If you look at the holes in a common sea sponge, you get a visual idea of what I am referring to.  Adenomyosis can cause severe pelvic pain and uterine cramping. Sometimes the degree of pain is intolerable, and the patient may choose hysterectomy. I will blog more about adenomyosis in greater detail in the future, so stay tuned.
  • Fibroids=Leiomyomata Uteri: fibroid tumors (usually benign growths of encapsulated muscle in the uterine wall) are typically treated conservatively, but recurrence after conservative treatments (hormone suppression, uterine embolization, myomectomy, etc.) or very large fibroids may require a hysterectomy. This of course can be a problem independent of endo, but I have treated endometriosis and performed a hysterectomy coincidentally at my patient’s request on a few occasions.

There are a few other indications for the consideration of hysterectomy for benign disorders, but this gives you the general idea.

FINALLY…

It is critically important to point out that hysterectomy does not cure endometriosis. Each lesion of the disease must also be removed. I have operated on literally dozens of patients who have not only had their uterus removed but also one or both ovaries, only to have the untreated areas of endometriosis that were left behind previously continue to cause pain and ultimately require another surgery to remove the remaining disease.

Hysterectomy may be an option for an indivdual, considering the unique nature of her personal case, after careful and informed discussions with her physician. Stay tuned for the next blog!

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 #9: A Time for Gratitude

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As we approach the end of the year, I would like to say ‘thank you’ to two people who make it possible for me to stay involved in the care of women with endometriosis.

First, I would like to thank Dr Ken Sinervo. Ken makes it possible for me to continue to see patients at the CEC. This is due to his generosity. When I remember the things that I was teaching Ken, I smile as I consider the things that he could now teach me.

Second, I would like to say thank you to Heather Guidone. Heather is the most knowledgeable person that I know in the field of woman’s healthcare. She not only knows ‘endometriosis’ care, but she knows virtually everyone who cares. This is not only in the area of ‘endo’ treatment, but also in the area of public awareness.

Ken and Heather –
Thank you.

Dr Bob

Stay tuned for more from Dr Bob on the pain of 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 #8: What Are the Consequences of Delaying the Diagnosis of Endometriosis?

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Retrospectively, most endometriosis (‘endo’) patients tell me that their symptoms began in their teenage years. Yet, most gynecology practitioners believe that a surgical diagnosis and treatment of endo during the teenage years should be avoided if possible and considered only as a last resort. I have outlined the reasons for their hesitancy to treat using Laparoscopic Excision – or what I have coined ‘LAPEX‘ – in detail in Blog #5. Fears of disease recurrence and adhesion formation are particularly strong motivating factors in young girls.

BUT…the consequences of delaying diagnosis and treatment of endometriosis can be enormous. Let me start with the consequences I believe are the most overlooked:

Personal embarrassment leading to a declining self-esteem and loss of self-confidence

  • When the professional evaluation of pelvic pain does not reveal a diagnosis and diagnostic Laparoscopy is not done, a patient’s hope in feeling better is diminished and over time self-esteem suffers. Young girls in this situation often believe that they must be ‘wimps’ because they hurt and nothing really seems to be the matter. Parents begin to wonder the same thing and ultimately communicate this to their child even though they are not intending to. School nurses can add kind words but no solutions, and girlfriends (who are not troubled by any similar issues) further magnify the psychological impact of the disease. Anxiety and depression are not uncommonly diagnosed and treated as time goes by in these undiagnosed individuals.
  • I have seen many practitioners resort to treating anxiety/depression with medication in young girls that really only need an accurate diagnosis and treatment of their endometriosis.

Narcotic Dependence

  • Chronic pain from endometriosis may be intense and relentless. Narcotic use in endo patients is understandably common. In our studies, a well done LAPEX has an over 80% chance of resulting a significant improvement in quality of life.

Disease Progression

  • The rate at which endo advances is extremely variable. I have observed many patients over years with no clinical evidence that known endo progressed. However, the slow march of increasing disease severity occurs all too often in untreated patients.

Progressive Adhesion Formation

  • The presence of untreated endo often results in progressively increasing adhesion formation around the lesions and/or endometriosis cysts. As adhesions increase, it is not unexpected that pain will increase – and then pain control subsequently becomes more and more difficult.

Increased Infertility

  • Establishing when a patient became infertile is almost impossible, but we know that infertility rates increase as the stage of the disease progresses. I believe that our best chance to preserve fertility is to diagnose and remove endo as soon as other diagnoses have been ruled out.

Life Change

  • The failure to diagnose and treat endo can result in life change. Pain from endo may require curtailing physical exercise. It may impact study habits secondary to the reduced ability to concentrate. Gastrointestinal symptoms may alter dietary habits impacting a healthy nutritional status. Pain during sex can destroy relationships and marriages. These are just a few examples of life changes that I have observed.

My conclusion is of no surprise to anyone. We need to train more gynecologic surgeons dedicated to patients with endometriosis and skilled in LAPEX.

Stay tuned! Meanwhile, be sure to also check out:
Is Endometriosis All in your Head?

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?

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 #5 QUESTION: IF ‘COMPLETE EXCISION’ IS THE GOLD STANDARD FOR ENDOMETRIOSIS TREATMENT, WHY IS IT SO UNCOMMONLY OFFERED?

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Following is a list of factors that negatively impact the use of ‘complete excision’ to treat endometriosis.

Most Gynecology (gyn) training programs continue to teach that ‘endo’ is a chronically recurring disease regardless of any form of treatment. Of course, my own experience using complete excision – LAPEX – is that after a carefully performed LAPEX, less than 10% of patients have a subsequent surgery during which endo is diagnosed and pathologically confirmed.

This teaching that endo is a chronically progressive disease in spite of treatment mistakenly leads gynecologists to believe that any surgical treatment short of removing all pelvic organs (ie. hysterectomy, tube and ovary removal) is a waste of time, energy, and resources, and that conservative surgery (like LAPEX) requires a surgical risk that does not have a long term benefit.

Gynecology resident doctors have only limited opportunities to treat endo during residency training programs. Furthermore, exposure to surgical treatment is often limited to patients with stages 3 and 4 disease who are requiring removal of uterus, tubes or ovaries. To my knowledge, there are no gyn residency programs teaching their residents the LAPEX surgical procedure. If a gyn surgeon wants to learn to excise the disease Laparoscopically, he/she must seek out post residency training, usually as a Fellow at a center of expertise like ours (Center For Endometriosis Care). This additional training needs to include delicate dissections of endo and scar tissue around bladder, ureter, intestines and beyond.

Even when these skills have been mastered, surgeons may face invasive endo in organs and need to remove segments of intestine, portions of the bladder wall, or a section of ureter. If specialists are not immediately available to assist the gyn surgeon, the case may need to be prematurely interrupted in order to assemble a team of appropriate specialists to complete the necessary surgery.

Therefore, if a gyn surgeon is encouraged to see for him/herself if results (like the ones I can attest to after decades of experience) can be achieved in their hands, it is not a simple substitution of an alternate surgical procedure – special training is necessary.

The lowest rates of recurrent endo are reported when the surgeon removes all abnormal/atypical peritoneum. If the surgeon relies on his/her visual expertise in recognizing endo, some of the disease is likely to be left behind resulting in incomplete excision. Obviously, recurrence rates will be higher in this situation, and this leads to underestimating the value of complete excision. In one of our own published studies, we found that complete excision required removing all atypical peritoneum, because atypical peritoneum frequently contained microscopic endo (I will also discuss this further in a future blog).

In endo cases with extensive disease, there is a valid concern that LAPEX will create adhesions in the internal excision sites as the patient heals. However, adhesions also form when the disease is left untreated or simply suppressed by drug therapies.

In Blog #3 I discussed circumstances that I feel allow for delaying definitive surgery. If quality of life, infertility or pelvic masses do not require disease excision, it may be reasonable to suppress endo using simple ovulation inhibition, and follow the patient closely. However, in my experience, it is best to remove all disease via LAPEX and then if necessary treat the adhesions as required subsequently. Using this plan, follow-up surgeries were significantly less complicated because there was no more disease. When adhesion treatment is not complicated by endo, I found success rates to be significantly higher. The important thing to remember is that adhesions may be a problem in endo patients with or without surgical treatment. Avoiding LAPEX offers no guarantees that adhesions will not progress.

Misleading information is being provided to gynecologists regarding the effectiveness and safety of strong drugs that are bringing in literally millions and millions of dollars to the manufacturers. If the information that the manufacturers provide is not read very carefully, the reader may conclude that a drug generally controls endo, that it can be used for an indefinite amount of time, and that the side effects are easily tolerated by the majority of patients. In my experience, these are inaccurate conclusions for all except oral contraceptives.

Finally, there is no financial incentive to learn excisional skills or to perform long surgeries painstakingly excising every bit of endo and all atypical peritoneum. In the majority of cases, insurance companies/government programs pay the same amount for a simple Laparoscopy (such as a diagnostic Laparoscopy with removal of an ectopic pregnancy) as they do for a 4-6hr meticulous, complex LAPEX. Additionally, if the surgeon takes 15-30 minutes to remove an appendix because it contains endo, he/she is paid nothing because “most appendectomies are incidental.”

When each of the above factors is taken into consideration, I think it is easy to understand why the ‘gold standard’ of treatment is the exception and not the rule. Only in highly motivated surgeons do we find this treatment available today. The good news is that we are making progress in the training of more surgeons qualified and motivated to treat endo definitively.

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.

Treatment Schematic #4

 

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 #4: My Treatment Plan AS A Flow Chart

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

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.