By Jandra Mueller, DPT, MS, PHRC Encinitas
This past month was Endometriosis Awareness Month. It was very exciting to see how many more individuals and providers were sharing amazing information about this disease that affects such a large percentage of our population. This was not always the case, and it is a sign we are moving in the right direction. Although there is more discussion around endometriosis, there continues to be a vast knowledge deficit about what this disease actually is, the symptoms associated with it, and how to properly assess and treat endometriosis. Despite our forward progress, it is disappointing to see information that we in fact do know about this disease, continuing to be part of the conversation. Based on the many people we treat, and those that have asked us questions, we thought it would be helpful to address some of the most common questions we are faced with as providers. Our hope is that this resource provides you with validation that your array of symptoms are likely not normal, or perhaps, this resource will be shared with others who are struggling, or may have been dismissed in the past.
One of the most important aspects of being a specialist in this field, is to understand what endometriosis actually is. Probably the most common question asked is What is endometriosis? When reading posts online, listening to lectures, podcasts, or reading articles, this is always defined at the very beginning.
Frequently Asked Questions
#1 What is endometriosis?
Answer #1 Endometriosis is a disease where cells that are SIMILAR TO endometrial cells (the cells that line the uterus) are found outside of the uterus. The important difference is that these cells are NOT the same cells that are found in our uterus. This has been an important piece of information in better understanding this disease. The most common theory for endometriosis has been retrograde menstruation (where menstrual fluid reflex through the fallopian tubes into the abdomen and pelvis where they cause a myriad of symptoms, most commonly painful periods and a common cause of infertility.)
Interesting fact: retrograde menstruation is thought to occur most of the time, so why are only ten percent affected?
Because endometriosis cells are NOT endometrial cells. Sampson’s theory of retrograde menstruation may at BEST provide one reason these cells may be present outside of the uterus. What it does not explain is how these cells shifted from an endometrial cell to an endometrial-like cell, if that is even how they got there in the first place. These cells are affected by estrogen which is why many symptoms start around puberty and may improve during menopause, and why men are rarely affected.
Although many have thought that endometriosis is a “gynecological” disease, ongoing research is currently showing that endometriosis is more consistent with an inflammatory disease.
#2 Is endometriosis an auto-immune disease?
No, endometriosis is not an auto-immune disease. Although many with endo do suffer from autoimmune diseases, endo itself is not. Autoimmune diseases occur when the body attacks itself. This is not what is happening in endo, in fact, in some ways the opposite is true.
#3 What are the symptoms of endometriosis?
What most people know of as the classic symptoms of endo are painful periods and infertility. What many people do not realize is that endometriosis is an inflammatory disease that can cause symptoms across a number of different systems. Listed below are a number of other symptoms associated with endometriosis. Surprisingly, some people do not have painful periods or infertility, but present with these issues instead.
**It is important to remember that these symptoms can be due to a variety of other reasons that have nothing to do with endometriosis and working with an educated practitioner to understand how these symptoms may or may not be related is highly recommended.
- Digestion – IBS type symptoms including constipation, diarrhea, or both. Abdominal bloating, abdominal pain, small intestine bacterial overgrowth, discomfort with eating, and painful bowel movements (dyschezia).
- Urinary – pain with urination (dysuria), urinary urgency, and urinary frequency. Some may call these symptoms “Interstitial cystitis.”
- Myofascial – pelvic floor dysfunction or pelvic pain, painful sex (dyspareunia), back pain, hip pain, or more profuse generalized symptoms throughout the body, many get diagnosed with having fibromyalgia.
- Psychological – endometriosis increases one’s risk for developing anxiety and depression.
- Immune system – endometriosis can be correlated with other auto-immune diseases, although endometriosis is not an auto-immune disease itself.
- Pelvic floor dysfunction – majority of those with endo have pelvic floor dysfunction which can result in pain and contribute to urinary, bowel, and sexual dysfunction.
- Other – brain fog, fatigue, right shoulder girdle pain, shortness of breath, or coughing up blood during your period. These last few symptoms are related to thoracic endometriosis syndrome – the most common extra pelvic site where lesions may be found and are usually around the time of your period, where as pelvic endometriosis can present with symptoms at any point in the menstrual cycle, although typically begin around your period.
#4 My doctor said I do not have endometriosis because of ___________ (fill in the blank):
- My periods aren’t painful enough
- Nothing shows up on imaging
- My pain is throughout my cycle not just during my period
- My periods aren’t heavy
- They didn’t see anything during surgery
- I don’t have infertility problems
Answers:
- Not all women with endometriosis suffer from pain as their primary symptom or experience pain in the same way. If there are enough symptoms present, a well educated practitioner that specializes in endometriosis can help you create a proper plan of care which may or may not include surgery, but your symptoms are real and they will help you to understand the cause.
- Imaging often does not show endometriosis. Depending on who performs the imaging and who is reading it, there may be indications of endo, such as pulling of organs or improper placement of the organs. The gold standard for diagnosis is laparoscopic surgery ideally with an experienced excision specialist.
- Classically endo is described as painful periods, but many describe symptoms worse around ovulation, or just before their periods. It may start out just around your period, but may progress into more frequent episodes. The lesions themselves are innervated and are pro-inflammatory and can cause issues outside of your period.
- Endo is commonly thought of as an ‘estrogen dominant’ disease. While estrogen is a mediator of endo, it does not cause endo. While many do report heavier periods, there are a significant number of those that do not have heavy periods.
- This is a big one and one of the hardest to conceptualize. The last thing you want to hear is “we didn’t find anything,” coming out of your procedure and unfortunately, this happens all the time. The issue is this, your typical OBGYN has learned about endo of course, but has not had the opportunity to do in-depth training about this complex disease. It is not their fault – they are delivering babies, handling vulvar infections, doing routine PAPs, among so many other things. That does not mean you cannot find a good doctor that does all of these things, but it is harder to find one. Endo presents in a variety of forms and different doctors use different techniques in how they search for endo. They take different approaches on what they define endo as. For example, fibrotic endo which is often found later in life, or after going on hormonal suppression meds, may appear white or scar-tissue like, just different than the classic lesions and it is not said to be endo, but it may be causing dysfunction.
#5 Do I still need to be on birth control after my excision surgery?
Answer:
This is a tricky question because every person is different. Your doctor should review with you what they would recommend. While birth control is not a treatment for endometriosis, it is often used to help with symptoms (for some it does) and some surgeons will recommend something after your surgery to help delay the need for another surgery depending on what they see and your personal case. I do advise you to ask your doctor questions, especially if you’ve had bad experiences in the past – what are your options? Is it absolutely needed and why do they believe this is the right choice for you? This should be a discussion between you and your doctor, and if it is the right thing, ask what your options are regarding them and voice any hesitations or concerns you may have.
#6 I had an excision surgery by a vetted doctor, my endo symptoms are back, could this be endo again?
Answer:
Unfortunately, this is a possibility. This does not mean that it is for sure endo – especially if other areas have not been fully ruled out or treated such as pelvic floor dysfunction, GI issues, diet, and lifestyle factors. We still have a lot to learn about this disease, we know genetics and inflammation are involved, and this is a great place to start exploring. Prior to the onset of recurring symptoms have you back-tracked on your diet and lifestyle because you were feeling good? Did other health concerns pop-up or were there ongoing stressors that were not dealt with? This is not an exhaustive list of reasons, nor may any of these reasons be the source for you. It is best to have a conversation and workup with your doctor to explore next steps.
#7 My doctor recommended a hysterectomy, I thought endo could not be treated with a hysterectomy?
Answer:
It is correct that a hysterectomy won’t do anything for endo. However, if it is suspected that you have something called “adenomyosis” it may be recommended as this IS a treatment for adenomyosis. Adenomyosis is sometimes referred to as a close relative of endo. It is essentially endo in the muscle layer of the uterus. The majority of women with adenomyosis also have endo, though not all do. If this is the case, the choice to get a hysterectomy is a big one and depends on many factors including future fertility. If fertility is not a concern of yours – meaning, you already have children and do not want more, or, your pain is so debilitating and you have tried everything (including excision of endometriosis), or just have contemplated other options of fertility and you and your doctor have decided this is the best decision for you, then yes, a hysterectomy in addition to excision of endometriosis (if present), would be a valid treatment option.
#8 I have been told that pregnancy is a cure for endo, does this work for everyone?
Answer:
No. While there are people who become pregnant (because they wanted to become pregnant), and their symptoms improve during or after their pregnancy, we should be thrilled – for them. This should in no way be considered a recommendation for others experiencing endo. First, some people cannot get pregnant because of endo, some do not want to be pregnant (now, or ever), and many people do not get better with pregnancy. Yet, this is still something that continues to be suggested (I heard it just the other day!).
#9 How should I prepare/what should I expect after my lap?
Answer:
This is a great question, and we recently wrote a blog that you can read called “What to expect after laparoscopic surgery for endo: Part 1.” Of course, we are here to answer your questions and are happy to help. If you are seeing a pelvic floor physical therapist, ask them about any local resources they may have. If you have not seen a PT yet, please start there. If you need help in finding someone to work with, we also offer digital health sessions to answer your questions, and help you find resources as well.
Need more resources? Check out our Endometriosis Resource list for blogs, videos, specialists and more.
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Are you unable to come see us in person in the Bay Area, Southern California or New England? We offer virtual physical therapy appointments too!
Virtual sessions are available with PHRC pelvic floor physical therapists via our video platform, Zoom, or via phone. For more information and to schedule, please visit our digital healthcare page.
In addition to virtual consultation with our physical therapists, we also offer integrative health services with Jandra Mueller, DPT, MS. Jandra is a pelvic floor physical therapist who also has her Master’s degree in Integrative Health and Nutrition. She offers services such as hormone testing via the DUTCH test, comprehensive stool testing for gastrointestinal health concerns, and integrative health coaching and meal planning. For more information about her services and to schedule, please visit our Integrative Health website page.
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FAQ
What are pelvic floor muscles?
The pelvic floor muscles are a group of muscles that run from the coccyx to the pubic bone. They are part of the core, helping to support our entire body as well as providing support for the bowel, bladder and uterus. These muscles help us maintain bowel and bladder control and are involved in sexual pleasure and orgasm. The technical name of the pelvic floor muscles is the Levator Ani muscle group. The pudendal nerve, the levator ani nerve, and branches from the S2 – S4 nerve roots innervate the pelvic floor muscles. They are under voluntary and autonomic control, which is a unique feature only they possess compared to other muscle groups.
What is pelvic floor physical therapy?
Pelvic floor physical therapy is a specialized area of physical therapy. Currently, physical therapists need advanced post-graduate education to be able to help people with pelvic floor dysfunction because pelvic floor disorders are not yet being taught in standard physical therapy curricula. The Pelvic Health and Rehabilitation Center provides extensive training for our staff because we recognize the limitations of physical therapy education in this unique area.
What happens at pelvic floor therapy?
During an evaluation for pelvic floor dysfunction the physical therapist will take a detailed history. Following the history the physical therapist will leave the room to allow the patient to change and drape themselves. The physical therapist will return to the room and using gloved hands will perform an external and internal manual assessment of the pelvic floor and girdle muscles. The physical therapist will once again leave the room and allow the patient to dress. Following the manual examination there may also be an examination of strength, motor control, and overall biomechanics and neuromuscular control. The physical therapist will then communicate the findings to the patient and together with their patient they establish an assessment, short term and long term goals and a treatment plan. Typically people with pelvic floor dysfunction are seen one time per week for one hour for varying amounts of time based on the severity and chronicity of the disease. A home exercise program will be established and the physical therapist will help coordinate other providers on the treatment team. Typically patients are seen for 3 months to a year.
What is pudendal neuralgia and how is it treated?
Pudendal Neuralgia is a clinical diagnosis that means pain in the sensory distribution of the pudendal nerve. The pudendal nerve is a mixed nerve that exits the S2 – S4 sacral nerve roots, we have a right and left pudendal nerve and each side has three main trunks: the dorsal branch, the perineal branch, and the inferior rectal branch. The branches supply sensation to the clitoris/penis, labia/scrotum, perineum, anus, the distal ⅓ of the urethra and rectum, and the vulva and vestibule. The nerve branches also control the pelvic floor muscles. The pudendal nerve follows a tortuous path through the pelvic floor and girdle, leaving it vulnerable to compression and tension injuries at various points along its path.
Pudendal Neuralgia occurs when the nerve is unable to slide, glide and move normally and as a result, people experience pain in some or all of the above-mentioned areas. Pelvic floor physical therapy plays a crucial role in identifying the mechanical impairments that are affecting the nerve. The physical therapy treatment plan is designed to restore normal neural function. Patients with pudendal neuralgia require pelvic floor physical therapy and may also benefit from medical management that includes pharmaceuticals and procedures such as pudendal nerve blocks or botox injections.
What is interstitial cystitis and how is it treated?
Interstitial Cystitis is a clinical diagnosis characterized by irritative bladder symptoms such as urinary urgency, frequency, and hesitancy in the absence of infection. Research has shown the majority of patients who meet the clinical definition have pelvic floor dysfunction and myalgia. Therefore, the American Urologic Association recommends pelvic floor physical therapy as first-line treatment for Interstitial Cystitis. Patients will benefit from pelvic floor physical therapy and may also benefit from pharmacologic management or medical procedures such as bladder instillations.
Who is the Pelvic Health and Rehabilitation Team?
The Pelvic Health and Rehabilitation Center was founded by Elizabeth Akincilar and Stephanie Prendergast in 2006, they have been treating people with pelvic floor disorders since 2001. They were trained and mentored by a medical doctor and quickly became experts in treating pelvic floor disorders. They began creating courses and sharing their knowledge around the world. They expanded to 11 locations in the United States and developed a residency style training program for their employees with ongoing weekly mentoring. The physical therapists who work at PHRC have undergone more training than the majority of pelvic floor physical therapists and as a result offer efficient and high quality care.
How many years of experience do we have?
Stephanie and Liz have 24 years of experience and help each and every team member become an expert in the field through their training and mentoring program.
Why PHRC versus anyone else?
PHRC is unique because of the specific focus on pelvic floor disorders and the leadership at our company. We are constantly lecturing, teaching, and staying ahead of the curve with our connections to medical experts and emerging experts. As a result, we are able to efficiently and effectively help our patients restore their pelvic health.
Do we treat men for pelvic floor therapy?
The Pelvic Health and Rehabilitation Center is unique in that the Cofounders have always treated people of all genders and therefore have trained the team members and staff the same way. Many pelvic floor physical therapists focus solely on people with vulvas, this is not the case here.
Do I need pelvic floor therapy forever?
The majority of people with pelvic floor dysfunction will undergo pelvic floor physical therapy for a set amount of time based on their goals. Every 6 -8 weeks goals will be re-established based on the physical improvements and remaining physical impairments. Most patients will achieve their goals in 3 – 6 months. If there are complicating medical or untreated comorbidities some patients will be in therapy longer.