Category "Libby Hopton"

Director and Producer Shannon Cohn announces the premier screening of her documentary film Endo What? this April 13th at the Delaney Street Theatre in San Francisco.  Please join Dr. Andrew Cook and Libby Hopton, Director of Research & Evidence Based Medicine, as we gather with a group of esteemed panelists to answer questions on Endometriosis, and discuss issues relating to public awareness of this disease. Don’t miss your chance to view this important film which includes heartfelt stories from patients and insightful commentary by world renowned Endometriosis experts and leaders in the field.  Tickets are available on the Endo What? website at  http://endowhat.com

Announcing ~  Special 25% discount on tickets when you enter VitalHealth on the tickets page !  Special thanks to Shannon Cohn for this discount offer for all of our patients and Facebook fans ! 

Congratulations to Director and Producer Shannon Cohn, along with her production team : Patricio Cohn, Producer and Cinematographer, and Arix Zalace, Producer / Editor for this fine production.  We would like to extend a special thank you to the women in this film who so bravely and generously shared their stories and personal experiences. These testimonies have contributed greatly to the core content and are truly instrumental in depicting the impact of Endometriosis on women worldwide.  

 

 

 

The Endo Patient’s Survival Guide, co-authored by Dr. Andrew Cook, Libby Hopton and Danielle Cook, is the essential patient’s companion to living with and overcoming endometriosis and pelvic pain: from seeking help and getting an initial diagnosis to navigating treatment options and achieving optimal relief and wellness.

The guide is now printed and available for order on Amazon.com

Endo Guide cover FINAL1

 

I just love bowel preps! ~ Said nobody ever

The purpose of the pre-operative bowel preparation is to cleanse your intestinal tract so that it can be safely operated on. While this process is unpleasant to endure it is absolutely necessary in minimizing the risk of complications during bowel surgery.

There are several bowel preparations on the market. Some involve drinking large volumes of laxative drink while others combine a single laxative drink with an enema solution or oral tablets. The prep may be combined with a low fiber diet during the days that precede it, and on the day of the prep (the day before surgery), you will be required to follow a strict diet of clear liquids only. Whichever method you are given, be sure to follow all instructions carefully.

Tips on getting through the bowel prep

  • Eat lightly the days prior to the prep. This should make cleansing your intestines a little easier.
  • Some patients find the prep drink difficult to palate because of the unpleasant taste. Allowing it to cool in the fridge or packing it in ice in the sink may make the drink that little bit more palatable.
  • To get the unpleasant taste out of your mouth, follow-up the prep drink with something pleasant tasting such as broth, a hard boiled sweet, or chewing gum (but be sure to keep to the dietary instructions provided by your physician).
  • Drinking the prep through a straw can help reduce contact with your taste buds as the liquid passes through your mouth.
  • If you feel nauseous try alternating between a pleasant tasting liquid, such as broth, clear fruit juice, and ginger ale, and the prep. Ginger is good against nausea. Either sipping ginger ale or sucking on boiled ginger candy may help. Another trick is to compensate and counteract the unpleasant taste with something pleasant smelling, such as scented candles or a handkerchief sprayed with your favorite perfume. Lavender scents are good against nausea and can help boost pain tolerance (such as intestinal cramps).
  • Be sure to remain hydrated during the prep. Drink plenty of clear fluids throughout.
  • Once the cleansing process begins, use wet wipes instead of regular toilet paper and apply topical non-prescription hemorrhoid cream, which contains a local anesthetic and will numb the area. This will help prevent soreness and discomfort.
  • Once the prep begins to take effect you may start to experience intestinal cramping. Applying a heat pad or ice pack may help sooth this pain.
  • Provide yourself with pleasant distractions – reading materials, puzzles etc. to tide you over during the prep.
  • Lastly, remind yourself that many have gone before you and that this is the last hurdle before a surgery that will hopefully provide you with ongoing relief from your pain. You can do it!

Remember, this is the last hurdle before a surgery that will hopefully provide you with ongoing relief from your pain. You can do it!

The typical medical treatment for endometriosis provided by most OBGYNs consists of manipulating a woman’s hormones, primarily her estrogen and/or progesterone levels. The rationale behind this treatment is that estrogen tends to stimulate the growth of endometriosis and progesterone is believed to balance or stabilize the effect of estrogen. In a very simple example, one can think of estrogen as fertilizer for the lawn and progesterone as the lawn mower. The goal of medical treatment of endometriosis is to increase the ratio of progesterone to estrogen (progesterone-only treatment), decrease the amount of both estrogen and progesterone (combinational birth control pills) or to eliminate estrogen from the body (GnRH agonist treatments such as Lupron and Zoladex).

Unfortunately, all hormone therapies commonly employed to treat endometriosis are fairly crude and are frequently associated with unacceptable side effects, making these medications difficult to tolerate. Some patients find the side effects even more debilitating than the symptoms of the disease itself. Hormone therapies do not provide a cure for the disease, are only effective in a portion of endometriosis patients, and even when this treatment option provides relief the results are typically short-lived and symptoms return. Furthermore, hormone therapies are not appropriate in patients presenting with infertility or who are trying to conceive. Even use of a GnRH agonist such as Lupron that causes a temporary medical menopause is frequently ineffective in managing endometriosis as endometriotic tissue itself can produce its own source of estrogen, allowing it to remain active and symptomatic despite the treatment.

When should hormone therapies be considered?

If hormone therapies are only temporarily effective in some patients and do not make the endometriosis go away nor necessarily stop the disease in its tracks (treating the symptoms but not the disease), why are they so commonly prescribed?

When a patient first presents with pelvic pain, and in particular period pain, the doctor and patient face a dilemma: How long should her symptoms be managed symptomatically (via medical therapy) and at what point should more invasive treatment options be considered (such as laparoscopic surgery) to actually diagnose and treat any underlying disease? On the one hand the patient wants to avoid unnecessarily invasive treatments and the risks associated with surgery (albeit minimal,) yet on the other hand she also wants to get to the root of her problem so that it can be effectively treated and she can get on with her life. This is obviously a very personal decision that needs to be made based on the severity of symptoms and the individual needs and priorities of the patient. Importantly, however, the patient needs to be informed of her options so that she can play an active role in the decision-making process.

Prescribing hormone therapies requires limited expertise and is a treatment option that is readily available to all. Surgery, in contrast, may require a level of expertise that most OBGYNs do not have. Moreover, if a patient is presenting with erratic and painful menstrual periods, a prescription of birth control pills may lighten, regulate and shorten her periods, easing her pain. It is when a patient keeps returning to her doctor complaining of the same symptoms despite trying different hormone therapies or cannot tolerate the side effects, that it is time to consider other treatment options.

Adenomyosis

A condition that is common among women with endometriosis is adenomyosis. Adenomyosis is when endometriotic tissue is found within the muscular walls of the uterus. Typically these areas of rogue tissue are scattered diffusely throughout the muscular uterine walls and so are not amenable to surgical removal. Endometriosis patients who also have suspected adenomyosis may find that some of their pelvic pain persists despite endometriosis excision surgery. While surgery to destroy or sever the nerves that innervate the uterus may help reduce this residual uterine pain, in most cases the only curative surgery for adenomyosis is hysterectomy (removal of the uterus). Obviously, many women will not be a position to undergo hysterectomy because they wish to retain their fertility. In these patients, conservative management of the chief symptoms of adenomyosis (pain and abnormal uterine bleeding) with hormone therapy provides an important alternative.

Pre-operative ovarian suppression

Another example where hormone therapy may be appropriate is in managing pain in patients who are waiting for surgery. For example, a teenage patient who plans her surgery during her school vacation so as not to disrupt her studies may benefit from hormone therapy to manage her symptoms and help her function in the mean time. Importantly, however, it is best that the patient is not on ovarian suppressive therapy shortly before or at the time of her surgery as this can hamper the surgeon’s ability to visualize all areas of disease. Ideally, all ovarian suppressive therapy should have be discontinued 6-8 weeks prior to surgery.

Should hormone therapies be prescribed following surgery to prevent recurrence?

If a patient has undergone the complete surgical removal of her endometriosis and her pain has been resolved there is no clinical indication for continued use of hormone therapies (other than for contraceptive purposes). Post-operative hormone therapy has not been found to reduce the rate of symptom nor disease recurrence. Recurrence of endometriosis rarely occurs following the complete excision of the disease regardless of whether the patient follows up surgery with hormone therapy.

Post-operative ovarian suppression following cystectomy

Some surgeons recommend post-operative hormone therapy following endometrioma (cystic ovarian endometriosis) removal (cystectomy) with the hope that ovarian suppression will reduce the risk of recurrence of the endometrioma(s). Research into this, however, has been inconclusive. Another reason for post-operative ovarian suppression following endometrioma removal is to give time for the ovary to heal before ovulation recommences, which might otherwise cause additional pain during post-operative healing.

Further reading

For more information on different types of hormone therapy, common side effects and their efficacy in treating endometriosis and adenomyosis,, check out Dr. Cook’s in-depth patient guide to hormone therapy treatments.

 

Adequate management of pain is paramount in women with endometriosis, due to the chronic and debilitating nature of this painful condition. The type of treatments offered will depend on the type of pain, its severity and duration, and the specific needs and wishes of the patient.

What can be done about my pain?

Our aim is to offer permanent relief and resolution of pain through surgical and non-surgical interventions (excision surgery, nutritional counseling, pelvic physical therapy etc.). In some cases, however, short-term or ongoing pain management is required to allow our patients to function. Not all sources of pain can be resolved by therapeutic intervention and in some cases definitive treatments, such as hysterectomy for uterine disease, may not be desired due to a wish to preserve fertility. Instead, ongoing palliative management in the form of prescription and non-prescription drugs and interventional pain management (nerve blocks, pain pumps and catheters) may be required. Interventional treatments may warrant the specialist expertise of a pain-management physician who will work in close coordination with the rest of the patient’s healthcare team.

Non-prescription (over-the-counter) pain medications

Common non-prescription pain medications used by pelvic pain patients include Acetaminophen or Tylenol and non-steroidal anti-inflammatory drugs (NSAIDS) such as ibuprofen and naproxen, which suppress inflammation. Care needs to be taken to not exceed safe daily dosages of pain medication and, in particular, when combining different non-prescription and prescription drugs. It is important for your safety that even over-the-counter medications are disclosed and carefully discussed with your doctor when considering pain management options.

Prescription pain medications

Prescribed pain medications include prescription NSAIDS and narcotics. Narcotics can be short acting (e.g., hydrocodone, oxycodone and hydromorphone) or long acting (e.g., morphine and long-acting oxycodone). Narcotic pain medications work by slowing down or stopping the signals from the nerves to the brain. The choice of narcotics prescribed will depend on whether your pain is acute (such as post-operative pain) or chronic (ongoing pain).

Pain-narcotic contract

If a patient receives prescription-narcotic pain management, she will be required to enter into a pain-narcotic contract which specifies what she can and cannot do while taking prescription-narcotic pain medications. All members of her healthcare team are aware of this contract and regular meetings are held among the staff to discuss and monitor the patients who are receiving prescription-narcotic pain management.

Interventional pain management treatments

Interventional pain management treatments for long-term pain include pain pumps (an implantable pain-management device), spinal cord stimulators (pain catheters), trigger-point injections or nerve blocks (temporary numbing injections to painful areas or overly sensitive nerves), and radiofrequency ablation (RFA), where targeted nerves are “stunned”, offering more prolonged relief than nerve blocks.

At Vital Health we offer an array of options to both resolve your pain and to manage acute and chronic pain. We firmly believe that no woman should suffer from pelvic pain and we strive to provide optimal relief to each and every patient who comes to us for help. Even when a patient suffers from intractable pain that does not respond to surgical and non-surgical intervention, ongoing pain can be managed with a variety of palliative approaches, offering hope, relief, and restoring your quality of life.

Diagnostic laparoscopy is a form of minimally invasive abdominal surgery that is performed to investigate potential sources of pelvic pain and infertility. During the procedure, the inside of the pelvic and abdominal cavities are carefully inspected for any abnormalities, such as endometriosis and adhesions. Diagnostic laparoscopy is typically performed under general anesthesia [1] and is commonly combined with therapeutic laparoscopy to treat any disease that is found.

What happens during the procedure?

First of all, the patient is put to sleep, her airways are intubated, her vital signs monitored and her bladder emptied with a catheter. The surgeon then performs a pelvic exam to check for any abnormalities. If a bladder condition is suspected (such as interstitial cystitis) a cystoscopy may be performed (the bladder is slowly filled with saline solution and a small camera is inserted to inspect the inside of the bladder for abnormalities). If abnormalities are suspected involving the inside of the uterus a hysteroscopy may be performed (a small camera is introduced through the cervix into the uterus to inspect the uterine cavity and obtain biopsies). An instrument called a uterine manipulator is then inserted through the cervix and into the uterine cavity. The uterine manipulator enables the surgeon to adjust the positioning of the uterus within the pelvis enabling complete visualization of the pelvic structures. Endometriosis often involves the tissue between the uterus and the large bowel (referred to as the Pouch of Douglas or the posterior cul-de-sac). In order to inspect this area during surgery, the uterus needs to be elevated forward.

After the placement of the uterine manipulator, a hollow needle is introduced to the pelvis through a tiny incision and the pelvic cavity is slowly insufflated (inflated) with CO2 gas. Normally the pelvic structures all rest together. The use of gas provides more space within the pelvis, separating the various structures and enabling visualization by the surgeon. Three small incisions are then made in the patient’s lower abdomen (these incisions are sufficient for both the diagnosis and treatment of endometriosis). One incision is made in the umbilicus (the belly button) and two are made beneath the bikini line, one on the right and one on the left. [2] After surgery the scars where these incisions were made will fade in time until they are barely noticeable and will be fully concealed by a bikini. A trocar (a cylindrical sheath through which the instruments are placed) is inserted through each incision. The laparoscope is introduced through the umbilical trocar (the trocar that is inserted through the patient’s belly button). A laparoscope is a thin fiber-optic tube with a camera integrated at the tip, which is connected to large video monitors so that the surgeon can inspect the inside of the pelvis. Surgical instruments are introduced through the other two trocars. These instruments may be used to grasp and move the pelvic structures, to irrigate (clean) surfaces, to suction (remove) free fluid from the bottom of the pelvis, and to dissect (separate) organs and structures that are fused together by adhesions (scar tissue) to allow the surgeon to inspect all surfaces.

The entire pelvic cavity is carefully examined with the tip of the laparoscope held close to the surface of the peritoneum (a thin layer of tissue that cloaks the pelvic structures). This enables the surgeon to detect any abnormalities, no matter how subtle. The pelvic structures, including the appendix, intestines, and diaphragm, are carefully examined for possible disease and adhesions. Any abnormalities in the appearances and consistency of the uterus are noted.

What are the challenges in identifying all areas of endometriosis?

The inside of the body is not like an empty room (where it’s easy to see if there is anything on the floor or walls). Instead, there are a lot of folds and nooks and crannies, and the search for endometriosis is more like trying to find a penny amongst a bunch of wadded up, unfolded cloths. With endometriosis, very small, difficult-to-see lesions can cause excruciating pain. When the end of the laparoscope is very close to the tissue, the laparoscope magnifies it. But this also decreases the area that is seen, similar to the effect of looking through a telescope or a set of binoculars.

A surgeon must be very thorough and meticulous, and use a systematic approach in looking for endometriosis. He or she also needs to understand the many different appearances of endometriosis, and work with an excellent pathologist who does not overlook mild endometriosis. The visual appearance of endometriosis is highly varied: The lesions can be dark, pigmented lesions, similar to a blood blister, or clear, vesicular lesions, appearing like miniature water balloons. It can also look like specks of salt or even leathery scar tissue. Some endometriosis is hard to see, but if the proper time and magnification are used, it can be found. In addition, scar tissue in an endometriosis patient should be considered and treated as endometriosis until proven otherwise.

The pathologist is an unseen and largely unappreciated member of the endometriosis team. If the pathologist is not meticulous in his or her examination of the tissue, then endometriosis will be missed, and the feedback to the surgeon will be false. Worst of all for the patient, the surgeon will leave endometrial lesions behind because the pathologist has incorrectly told the surgeon that this appearance is not endometriosis, when in fact it is. I work with a physician whom I believe to be one of the best endometriosis pathologists in the country. He has a lot of respect for endometriosis, and is very meticulous in looking for the disease. He takes extra steps in preparing the tissue, which helps to maximize the chance of finding all the endometriosis that is present.

Will diagnostic laparoscopy be proceeded by therapeutic laparoscopy?

After the pelvis has been carefully examined, the surgeon then proceeds to surgically treat any areas of suspected disease. The process of treating any abnormal findings is referred to as a therapeutic laparoscopy. Diagnostic and therapeutic laparoscopy are typically combined, although some surgeons first perform a diagnostic laparoscopy to assess the severity of the disease and then either plan in a further surgery to treat the disease or else refer the patient to a specialist. Dr. Cook always diagnoses and meticulously treats all areas of abnormal tissue during the same one procedure.

What happens once the surgery is complete?

Once the surgery is complete, the instruments and trocars are removed, the abdomen is carefully deflated and the incisions are glued or sutured closed and small dressings are applied. The patient is then taken to recovery and closely monitored. Anti-nausea and pain meds are provided via IV to keep the patient comfortable. Following surgery Dr. Cook admits his patients overnight so that they receive optimal management of their post-operative pain. During the first hours following surgery you may feel groggy and tired and your throat may feel sore from the intubation tube. The fatigue may last for some days to several weeks, depending on the length of surgery and your physical condition prior to surgery. In most cases any post-operative pain is well managed by the IV, PCA pump and orally administered pain medications while in hospital and the pain medications prescribed following discharge. Residual gas from the surgery may take some time to dissipate, causing temporary shoulder tip pain but usually resolves within a few days. Likewise, the incision sites may be tender and bruised for the first week or two after surgery but will recover in time. Slowly you will find yourself returning to your normal activities. The length of recovery will depend on the patient’s general health as well as on the extent of surgery that has been required.

Dr. Cook and his team carefully follow up all surgery patients to make sure they are comfortable and recovering well. If any concerns arise, the Vital Health team is on hand to help you.

How effective is a diagnostic laparoscopy at identifying endometriosis?

In the capable hands of an endometriosis specialist diagnostic laparoscopy is a highly accurate method of identifying any abnormal tissue and confirming the presence or absence endometriosis. Surgeons who are less familiar with endometriosis, however, may fail to recognize subtle areas of disease and may misinterpret the clinical significance of dense adhesions (which to a specialist is often a sign of significant underlying invasive disease). An unfortunate outcome is where a patient with endometriosis is incorrectly told by her surgeon that she does not have the disease, further delaying correct diagnosis and treatment. It takes a trained eye to recognize endometriosis in all its forms and make an accurate diagnosis. It is therefore important to request that your surgeon documents the surgery by taking photos and/or providing you with a complete digital copy of your procedure on DVD. This way, you can seek a second opinion if you suspect disease has been missed. Ideally, it is best to find an endometriosis surgical specialist to conduct your surgery. Dr. Cook records all of his surgeries and provides his patients with comprehensive surgical photos and a complete copy of the procedure on DVD on request.

Dr. Cook and his team performing a diagnostic laparoscopy.

Notes

  1. Occasionally patient-assisted laparoscopy (PAL) will be performed, in which the patient is awake during the procedure and can guide the surgeon to the source of her pain. PAL may be indicated if previous laparoscopic surgery has failed to identify and resolve the patient’s pain.
  2. In patients with symptoms suggestive of diaphragmatic endometriosis an extra incision may be required in the upper right quadrant of the abdomen (just under the right rib margin) in order to fully visualize the right side of the diaphragm behind the liver.

Pelvic floor dysfunction (PFD) is a common condition in women with endometriosis and other pelvic pain conditions, and occurs when the muscles that form the pelvic floor have tightened in response to chronic pelvic pain. Even after the original source of pelvic pain has been resolved, PFD persists as an acquired or secondary source of pelvic pain. In severe cases, the patient suffers from pelvic floor spasms, which can be excruciating and make intercourse impossible. Other common symptoms are pain and/or difficulty emptying the bladder or bowel and painful intercourse. Pelvic floor dysfunction can affect all the organs in the pelvis, including the urinary, genital, and bowel systems, and can have further reaching effects on the body (coordination, alignment, breathing, and mobility).


Pelvic Floor Dysfunction is a common condition in women with endometriosis and other pelvic pain conditions, and occurs when the muscles that form the pelvic floor have tightened in response to chronic pelvic pain.


Once a woman’s endometriosis has been successfully removed during surgery and healing is complete, if pain persists, she may be assessed for PFD and referred to our specialized pelvic floor physical therapist. Most physiotherapists lack the training and expertise to treat pelvic pain and pelvic floor spasm. If you are seeking relief of PFD it is important to find a practitioner who understands the specific needs of women with endometriosis and who has experience and training in treating PFD.

What happens during pelvic floor physical therapy and how does it help?

Chronic pelvic pain can affect body posture, muscle tone and alignment. Muscles may become shorter, tighter and misaligned due to the perpetual responses of the body to pelvic pain. The role of the pelvic floor physical therapist is therefore to train the patient to relax her body and restore balance and alignment. While the pain emanates from the pelvis, the effects of chronic pain are far-reaching due to the role of the pelvic floor in core activities such as movement and coordination. Effective physiotherapy may need to involve muscle groups throughout the body.

Patient history

Pelvic physical therapy begins with a thorough patient history. In her own words, the patient tells her story about living with endometriosis, her pain and the treatments she has endured. She is also asked to recant any other incidents in her life history that might have jolted her pelvis, such as a previous skiing accident.

Biomechanical and musculoskeletal assessment

The next step is a biomechanical and musculoskeletal assessment; the therapist observes how the patient moves and walks, her posture and breathing, where her core areas of pain are, and takes note of the over all condition of her muscles (strength, coordination, alignment and contraction).

Relaxation skills

Following this general assessment the therapist focuses on relaxation skills. Massage is directed at loosening and relaxing muscles and relieving abdominal and pelvic pain. The patient is then directed in self-massage and relaxation exercises, which she can continue at home.

Physical examination

Next the therapist performs a thorough physical exam to test overall body flexibility and mobility, paying particular attention to the hips and possible joint malformations, the sites of abdominal scars and the motility of the internal pelvic organs. The physical exam comprises both an external and internal exam. During the internal exam, the different layers of the pelvic floor are assessed to check muscle spasm, tone and mobility, tissue rigidity and pain trigger points. While some patients may feel uncomfortable, internal work is essential in order to access the core muscles and tissues involved by PFD.

Retraining of muscles

Pelvic muscles that have been identified as tense and in spasm are then “down trained” by teaching the patient the difference between tensing and relaxing these muscles. This can be achieved with the help of biofeedback sensors placed on the muscles, so that the patient can see her pelvic muscle activity fluctuate on the biofeedback monitor.

Home exercises

To improve flexibility and stretch tightened muscles, the patient will be instructed in stretching exercises, focused on opening the hips. The patient may also be instructed in vaginal dilation exercises to be performed digitally or with a home-dilation kit to further mobilize tissue within the pelvis. Further exercises will focus on core strength, and trunk and spine flexibility. Once pain and mobility improve, the patient will be retrained in basic movements such as walking and standing without tensing the pelvic floor and to improve pelvic-girdle coordination. The patient will be instructed in gentle exercises to restore coordination and mobility, such as basic yoga and Pilates, gradually building up over the course of 6 to 12 weeks.


Pelvic floor physical therapy helps chronic pelvic pain sufferers to retrain and recalibrate their bodies, reversing the harmful effects of ongoing pain on the body. The goal is to improve (sexual, bladder and bowel) function, co-ordination, core strength and to relieve pain.

Adenomyosis is a condition of the uterus in which endometriotic tissue is found within the muscular walls of the uterus. Adenomyosis can be focal or diffuse. Focal adenomyosis also referred to as an adenomyoma, is when a tumorous growth of endometriotic tissue forms inside the muscular uterine walls. More commonly, however, diffuse areas of endometriotic tissue are dispersed through the uterine muscle, most often affecting the posterior (back) wall of the uterus, which can become thickened as a result.

What are the symptoms of adenomyosis?

Adenomyosis can result in abnormal uterine bleeding (typically heavy and prolonged menstrual flows) and/or severe uterine cramping – “killer cramps.” Sometimes adenomyosis may not cause any symptoms at all. Patients who suffer from adenomyosis often report severe centralized cramping pain that worsens during the menstrual flow and may radiate up to the belly button and/or down to the lower back and into the buttocks and thighs. One reason why pain may radiate is because the uterus is innervated by nerves that run along the uterine ligaments, which lead upwards toward the umbilicus and downwards to the lower back. Some patients have such severe uterine pain that over time they develop second-degree burns over their abdominal area from the prolonged use of heating pads in an effort to sooth their debilitating cramps.

Are endometriosis and adenomyosis related?

There does appear to be a strong association between these two conditions. A subset of women who suffer from endometriosis will also, unfortunately, have adenomyosis to varying degrees and often a clinical challenge in resolving a patient’s pain is to successfully differentiate between the symptoms of endometriosis and adenomyosis. This is why it is important that your doctor assesses both the uterus and the tissue around the uterus separately in order to discern the source of your pain.

Can anything be done about adenomyosis?

Several treatments for adenomyosis are available, both conservative (organ-preserving) and radical (organ removal). Conservative treatments include pain management with non-prescription and prescription pain medications and the use of hormone therapies to suppress the menstrual cycle and either shorten or temporarily stop the menstrual flow. Sometimes a surgical procedure called a presacral neurectomy (PSN) will be performed to sever the nerves that innervate the uterus with the aim of alleviating uterine cramping. This procedure may not be especially effective in patients with adenomyosis however as the disease may result in localized inflammation that extends beyond the uterus itself, affecting surrounding extra-uterine tissues. A PSN has no effect on these surrounding tissues and therefore a portion of the patient’s pain may persist despite the procedure. A PSN also has no effect on abnormal uterine bleeding. In those patients who do not have future plans for fertility or who have completed childbearing, a hysterectomy may be considered. Hysterectomy is the only definitive (curative) treatment for diffuse adenomyosis. If a patient has an adenomyoma (focal adenomyosis) it may be possible to surgically remove the adenomyoma, rather like one might remove a fibroid, while preserving the rest of the uterus. This will depend on the size of the adenomyoma, it’s location and on the skill of the surgeon.

How is adenomyosis diagnosed?

The only definitive method of diagnosing adenomyosis is by obtaining a biopsy of the diseased tissue and having a pathologist inspect it under the microscope for the presence of endometriotic tissue. While this may be readily possible if a patient has an adenomyoma, in the case of diffuse adenomyosis, obtaining a biopsy of diseased tissue may not be feasible until after hysterectomy (it would be akin to searching for a needle in a haystack). Endometrial biopsies may confirm a diagnosis of adenomyosis in some cases if the biopsy is sufficiently deep but failing to confirm the diagnosis via this test does not exclude adenomyosis and this is not a routine test for adenomyosis but may be undertaken to exclude other possible causes of abnormal uterine bleeding. In most cases, the diagnosis is suspected based on the patient’s symptoms and on the findings from imaging studies (ultrasounds, CT and/or MRI). Sometimes the uterus may be found to be enlarged and have a “boggy” consistency during laparoscopy, raising a suspicion of possible adenomyosis. If diffuse adenomyosis is subtle, however, it may not be apparent on imaging nor at surgery. The absence of any telltale signs should not exclude adenomyosis as a possible source of uterine pain and the patient’s debilitating uterine symptoms still need to be addressed.

Can adenomyosis affect women of any age?

Adenomyosis is often considered to be a disease that primarily affects middle-aged and older women (30s onwards), especially women who have previously given birth. This bias could, however, be due to the fact that usually only women who have completed their families undergo hysterectomy for the treatment of their uterine pain. Given adenomyosis can almost always only be confirmed via biopsy following hysterectomy, this inevitably leads to the impression that the disease only affects women who have completed childbearing. Furthermore, the symptoms of endometriosis may often overshadow the symptoms of adenomyosis in the early course of the disease, giving the impression that its onset is later. In reality, however, both endometriosis and adenomyosis can affect women of any age, including teenagers.

Endometriosis can cause an array of symptoms that differ from individual to individual and may worsen over time.

What are the common symptoms of endometriosis?

  • Severe pelvic pain: The pain may be cyclical (worsening around the menstrual flow and ovulation) and/or non-cyclical in nature (constant throughout the cycle). Women describe a burning, throbbing, stabbing pain in different parts of their pelvis. This pain can be even more severe than labor pains and post-operative pain.
  • Pain with sex: Endometriosis can cause pain with deep penetration. This is because the area of tissue just beyond the end of the vagina is commonly affected by the disease, making it exquisitely tender and sore.
  • Pain with urination and bladder pain: If disease is present involving or near the bladder this may result in bladder pain/sensitivity and pain on emptying the bladder. Another common cause of bladder symptoms is interstitial cystitis, a condition that frequently co-occurs with endometriosis.
  • Pain with bowel movements: Endometriosis involving the lowest part of the colon (the rectum) may result in pain with bowel movements during menses (or during the whole month long).
  • Pain prior to bowel movements: Endometriosis involving the colon may result in pain just prior to bowel movements.
  • Cyclical rectal bleeding: If bowel disease has invaded into the bowel wall, the patient may experience cyclical rectal bleeding.
  • Bloating: Bloating may result from the inflammatory response to endometriosis involving the pelvis and bowels.
  • Nausea and vomiting: This may be a symptom of severe pain, of the effect of inflammation on the gastrointestinal tract or more specifically could be a symptom of invasive small bowel disease. Acute vomiting can be a symptom of small bowel obstruction, a rare but serious complication of endometriosis demanding emergency medical intervention.
  • Constipation and diarrhea: Endometriosis near or involving the bowel may result in IBS-like symptoms.
  • Fatigue: Severe fatigue is a non-specific symptom of endometriosis. It is a common symptom experienced by sufferers of chronic illness and pain.
  • Infertility: It has been estimated that 40% of women with endometriosis struggle with fertility problems. Around 20% of women in a healthy population will experience infertility, meaning that in those with endometriosis the risk of fertility problems is doubled. Infertility may be due to adhesions that result from the disease process or from the effect of the disease on the intrauterine environment; endometriotic tissue releases chemicals that may hinder conception and implantation.
  • Shoulder tip pain: Less commonly, if a patient has diaphragmatic endometriosis, she may present with cyclical right shoulder tip pain. Diaphragmatic endometriosis is relatively rare.

Importantly, while endometriosis is associated with a range of symptoms the most common symptom is chronic pelvic pain. You do not have to experience all of these symptoms to have endometriosis. If you are experiencing debilitating pelvic pain this is not normal. It is your body’s way of communicating that something is wrong and you should seek the help of a doctor who is familiar with treating endometriosis and pelvic pain.

How do symptoms differ between patients?

While some patients are relatively symptom-free except for certain times of their cycles (menstruation and ovulation), others are debilitated by pain each and every day of the month. Many women experience a gradual worsening of symptoms over time, both in severity and in the duration of symptoms i.e., the number of days per month they are affected. A common myth is that endometriosis only affects a woman during her period – while this may be the case for some women, for most patients the pain affects them both during and outside their period.

Is endometriosis “just” monster cramps?

Endometriosis is not “just” monster cramps. Severe cramping during the menstrual flow is, in fact, more commonly associated with another gynecological condition called adenomyosis. Adenomyosis is where endometriotic tissue is found inside the muscular walls of the uterus and can cause severe cramping and heavy menstrual bleeding. Adenomyosis often co-occurs with endometriosis and for this reason the symptoms of the two conditions are frequently confused with one another.

Endometriosis does not, however, cause uterine cramps nor abnormal bleeding; these symptoms point to a problem with the uterus whereas endometriosis affects tissue outside the uterus.

What is the impact of these symptoms on a woman’s life?

The symptoms of endometriosis can be truly devastating. They can impact upon all areas of a woman’s life rendering her unable to function.

Teenagers with endometriosis may find that they are forced to miss one or more days of school each month while those in employment may find they are struggling to hold down a job due to the need to take leave on a regular basis for severe pelvic pain. Non-prescription pain medications may fail to alleviate the pain and prescription pain medications may only offer partial relief. Maintaining a sexual relationship may be difficult if not impossible due to severe pain during sex. Pelvic pain may interfere with social events and plans and may prevent a woman from partaking in physical exercise. Understandably, over time the symptoms of endometriosis can lead to social isolation, financial difficulties, relationship breakdown and severe emotional distress. Clearly, it is a disease that needs to be taken very seriously and treated effectively as soon as possible to restore a woman’s quality of life.

If you think you may be suffering from endometriosis, don’t suffer in silence. Take your symptoms seriously by talking to your doctor.

Dr. Andrew Cook and Libby Hopton are awarded the 2014 Carlo Romanini Award by the American Association of Gynecologic Laparoscopists (AAGL) for best video on endometriosis. The winning video was presented at the 43rd AAGL Global Congress in Vancouver, Canada, 2014. The surgery demonstrated the complete excision of full-thickness bladder endometriosis.

 

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