Lj Powerhouse and Jandra Mueller of PHRC: IG Live Endometriosis Q&A

By Lj Powerhouse & Jandra Mueller, DPT, PHRC Encinitas

In December 2020, PHRC physical therapist, Jandra Mueller joined Lj Powerhouse on Instagram for a LIVE Q&A.  It was awesome to answer all of the questions you asked and we were bummed we couldn’t get to all of them! Here is a re-cap as well as answers to many of the questions that were submitted that we did not get to. If you would like to watch the actual IG Live, you can do so on Lj’s Instagram page! Find more info about the feature image at the bottom of this blog!

 

Before we launch into the robust Q and A discussion, if you are pelvic floor physical therapist there is still time to register for Jandra and Britte Gosse’s online continuing education course, Be a Warrior for the Warrior! It is on January 23 and 24th  and attendees will be awarded 15 CEU hours! We have two medical experts, endometriosis excision surgeon Iris Kerin Orbuch, MD and Author of the Period Repair Manual, Laura Briden, ND, joining the course for a unique opportunity to REALLY learn how to best help women with Endometriosis. To register please click here.

 

Now, here is the Q and A from last month’s IG Live:

 

1. How do you know if a PT will be adequate to treat the after effects of endo? 

 

You can look at their qualifications or ask them how they treat endo – do they provide both external and internal techniques and how much time do they spend at each appointment and how frequently are these patients seen? We know that endo is complex and multiple areas need to be treated and this takes time. So if for example, they have 30 min appointments and you can only get in every few weeks, this may not adequately meet your needs. Do they only focus on internal work or do they do external work? Some people are limited in how many trained pelvic PTs are available to them. Looking to find PTs trained in more advanced manual therapy techniques like myofascial release and visceral mobilizations can be an option. When trying to help someone find a provider, I check the Institute of Physical Art’s provider list first.   

 

1. How is IC and Endo really related?

 

They are both inflammatory visceral pain conditions, therefore, they often exist together (correlated) but one doesn’t necessarily cause the other. The biggest connector between these two conditions is the central nervous system, essentially the organs “talk to each other” and make one more sensitive to different inputs or “flare” symptoms. Many people can relate to certain scenarios: if you’re constipated, you have a urinary urge. If you have menstrual cramps, you may feel a bladder urge. Sometimes urinating lessens menstrual cramps. Sometimes urinating makes you feel less bloated, the organs can sensitize each other. Many women feel they have multiple issues, really, when we look at this way, the symptoms are overlapping. The biggest cause effect relationship I see regarding IC and endo is when it comes to vestibulodynia. Many of those with endo are put on birth control, then develop hormonally mediated vestibulodynia, which often creates the urinary symptoms we see in “IC.” So, really it’s not endo creating the “IC” but the birth control used for “treatment” in endo that caused it. I would say that not everyone diagnosed with IC has endo, but a large majority of those with endo get diagnosed with IC. There are other situations too, like SIBO and gut issues that can connect the two conditions as well. 

 

1. How to navigate endo without ever having a laparoscopic surgery?

 

This is a great question for many reasons! Not everyone wants to or can have the ideal surgery (excision) because of costs, proximity of a qualified provider, etc. So, identifying and addressing all the possible pain generators and contributing factors is key to managing your symptoms, regardless if you have surgery or not. This usually means working with a holistic or integrative practitioner or a team of providers and addressing diet, lifestyle factors, stress, central nervous system issues, hormonal imbalances, and myofascial contributors to your symptoms. For some, they may be able to significantly reduce their symptoms to a level that is tolerable to them and may opt out from having surgery. It is important to note that treating endo (or at least starting the process) using a conservative approach, and all the pain generators, prior to having surgery will more than likely benefit you when, and if you choose to, have surgery. I see a lot of people that go straight into surgery without having done some treatments prior to surgery or at least starting the process and not all of them have a great response, even with an excellent surgery, and they are left feeling like surgery didn’t work, but that is not necessarily the case. The really bad side to this is that they continue to seek surgery because they feel this was the issue. 

 

1. Can IC be due to endometriosis?

 

We have to be careful with saying that one causes the other, they are overlapping visceral (organ) pain disorders and can often affect each other. Again, going back to the root cause of IC may explain the association with endo. There are often multiple issues that are relating the two, including the central nervous system and the gut. 

 

1. Is it possible to have endo without heavy periods? 

 

Yes, women with endo can have light, regular, or heavy periods. Classically, endo is characteristically known for painful periods, something we call dysmenorrhea, but because there is often estrogen dominance, many women will experience heavy periods as well (estrogen builds up the lining of the uterus, which we shed during menses) and women with endo are often low in progesterone (that’s another topic). A good example of this is that women on birth control have lighter periods, which aren’t actually periods, they are pill bleeds or withdrawal bleeds, but many of them still have pain because of the endo. The other thing to think about is that they may have endo and adenomyosis. Adenomyosis and endo are not the same thing, although they can coexist. Adenomyosis is where endometrial tissue invades the myometrium (the muscular layer of the uterus) and has many of the same symptoms as endo and is known for heavy periods and clotting. 

 

1. Is birth control actually the only way to treat endometriosis? Ir isn’t helping me at all. 

 

No, birth control cannot treat endo. The only thing that can actually treat the lesions is surgical excision or removal of them. That being said, you can treat the symptoms in a variety of ways, one of them is birth control. However, this is usually causing hormonal suppression and is a band-aid, and a dirty band-aid. It often only treats symptoms for a certain amount of time and wreaks havoc on the gut causing GI disorders, anxiety, depression, nutrient deficiencies (and the ones that actually help you with endo). It also doesn’t help everyone, and the same type for one person may not work for the next person. It is simply a medical treatment that can be used for symptom reduction only. This is one thing that ACOG gets accurate and specifically states – it is NOT a treatment for endo. Other meds may actually be better suited for symptom management with less side effects.

 

1. What exactly is happening in our body during a flare up? 

 

When people are having an increase in symptoms, we need to figure out why. Because pain generation and visceral pain syndromes have many causes, we need to look and see if there is an acute reason for the flare up, like an infection or acute tissue injury or if it is the result of the central nervous system being sensitized. These can often overlap as well. An example of an acute peripheral injury would be a UTI or yeast infection, this may ramp up menstrual pain, pelvic pain, urinary pain and should be addressed with the right medical treatments and pain should improve. An example of a central pain generator would be increased stress, like COVID, which creates some physiological response, usually involving cortisol, and the nervous system becomes more sensitive to any input – touch, chemicals, inflammation and then generates a response (increased menstrual cramps, body aches and pains, UTI-like symptoms, pelvic floor tightness, etc). In this case, treatments directed at calming the nervous system, like meditation and mindfulness, deep breathing, etc., will help us increase our threshold or resiliency, increase our natural opiate receptors and thus, reduce pain/symptoms. It is tricky, because these are almost never separate and one input may cause a reaction locally, and centrally. That same UTI (peripheral generator) may cause feelings of distress and worry, maybe because you’ve been symptom free for so long, that then your central nervous system ramps up and sensitizes your muscles, your pelvic floor, and your GI system. This situation is much more common. 

 

1. How do you get diagnosed with endo? 

 

The gold standard for diagnosing endo is through laparoscopic surgery, biopsy and histological confirmation. This means that after a biopsy is taken, it is sent to a lab where a pathologist will inspect it and look for signs that are consistent with endometriosis. However, if you work with a highly skilled specialist (an MD/ND) they can offer a clinical diagnosis based on your history and symptoms and treat you AS IF you had endo so that you can begin to feel better sooner vs. later. This still does not ensure that you actually have endometriosis and this is where it gets tricky because endo can look like many things. It is also super important to remember that a diagnostic surgery will not always mean a therapeutic surgery (excision). Of course, working with a trained excision surgery, you shouldn’t really have to worry about that! 

 

1. Can I get diagnosed without surgery? 

 

You may receive a clinical diagnosis and start treatments that may be beneficial in symptom improvement, and this is actually ideal because it may give you a better outcome post-operatively. But you still cannot be truly diagnosed with endo without surgery. What is really cool, is that there is starting to be research looking at some factors in our blood that may be able to diagnose you without surgery, but that is not happening right now and more funding needs to be generated to study this more in depth. 

 

1. Is there a correlation between endo and weight?

 

There is not enough research at this time to correlate BMI and endo; although, there is some evidence to suggest that there is a higher incidence of endo in those with a low body mass index. More research is needed in this area and it appears to be pretty complex. Because endo is an inflammatory condition, you see more association in endo with other health conditions like high cholesterol, high blood pressure, and cardiovascular disease which you also see in obesity. I will be honest, I was a bit surprised by learning this, but after thinking about it, it also made sense. My thoughts on this are that those with low BMIs may have issues related to undereating, hormonal imbalances, nutrient deficiencies, other chronic illnesses that may result in disordered eating and food avoidance (if you have SIBO you know!) and this may promote more stress on the body, stress can really bring out the symptoms in those with endo and strain the body and the nervous system. I know for me personally, many of my symptoms showed their face after a very stressful time period and it was very difficult to get them under control until I had a surgery (however, I fall into an average BMI). 

 

1. I’m a Depo, but I’m still in pain. Should I think about surgery at 18?

 

This is a difficult question to answer without more context. So some general thoughts about surgery at a young age. First, different birth control methods have different results in different individuals and we know that birth control is not a treatment for endo, but may have a role in improving symptoms. The choice to undergo surgery is a personal decision and many things should be considered like do you have access to a trained specialist, do you have the financial means if they do not take insurance? Do you have many other pain generators that may be causing your symptoms? Aside from birth control, there are many other non-surgical interventions that can be beneficial for reducing symptoms and birth control has its own side effects that can cause issues. Same with surgery, if all the pain generators are not being addressed, surgery itself may also not result in a pain-free life. 

The benefit of having a good surgery at a young age, especially if there are not a lot of confounding factors are that you’ve taken care of one of the most important pain generators at a young age and may have not had to undergo so many medical procedures or treatments that may in the end, make you worse or cause other issues. Addressing this in adolescents and young women in their 20’s may mean a significantly improved quality of life, and for some improved fertility. 

 

1. What’s the relationship between endo and PFD? 

 

The majority of women with endometriosis have PFD, approximately 70-87% and some studies suggest 90%. And PFD is one of the most common findings in many of the other visceral pain conditions like IBS and IC. In “IC/PBS” one study showed that 85% of women had at least one trigger point and 67% had 6 or more. That’s a lot! 

 

1. Is CBD legit for pain management? 

 

This is an area that definitely needs more research, especially because of the regulation of CBD products. There is a lot of debate around the use of isolated CBD vs. the whole plant, meaning you need a tiny bit of THC to activate the CBD to make it effective. This topic is largely debated and I think before we can make any definitive statements, more studies on isolated CBD need to be performed. As of now, the research that is out there is studying the whole plant, not isolated CBD. Clinically, I see a mix of results in those that use isolated CBD products, maybe it truly works, maybe it is placebo, maybe it is because of the grade or quality of the product. I think it is important if someone finds something that works for them, it doesn’t matter why.

 

1. Which CBD based products do you recommend if any to help with endo? 

 

I want to be careful about recommending specific products to the general public, if you’d like more info you can contact us. However, because I am in CA and CBD/THC is legalized for both recreational and medical use, I simply provide education regarding what the evidence states (see question above). When it comes to supplements in general I give the same advice. The FDA doesn’t regulate supplements or CBD. I am able to have accounts with high grade suppliers that offer products not always available to the general public because they are often at higher doses than you can find at the store, because supplements can be quite powerful and also interact with different medications or cause an effect in someone with a certain medical condition. These companies that offer products like CBD, are probably more optimal than you can find the store. They also usually have more checks in place to ensure you are getting a quality product, this is also true of other suppliers. For example, I do have a product I have access too, from one of these suppliers that has third party regulation. Their CBD products are small batches and come with a unique batch number on each bottle, you can go to a website where you can actually check the specific bottle for purity, potency and authenticity from a third party provider. 

 

1. Is it connected to peritoneal cyst? I have/had both.

 

Women with endo can develop peritoneal cysts for a couple of reasons. Inflammation and injury to the peritoneum (like a laparascopic surgery, excision, biopsy, ablation) can lead to formation of these cysts. They are commonly found in premenopausal women, because they are usually related to ovary activity, with a history of previous abdominal or pelvic surgery, trauma, pelvic inflammatory disease, or endometriosis. But just because you have endo, doesn’t mean you will necessarily get these. 

 

1. Can endometriosis flare ups be mistaken with interstitial cystitis flare ups? 

 

Yes, because these are overlapping inflammatory visceral pain conditions and often have the same mechanism to cause pain. 

 

1. What’s life like for a severe endo case post hysterectomy: pain, relapse, quality of life?

 

This depends, we need to know what else is involved, who the surgeon was, what type of procedure was done and if they did excision at the same time. We’ll talk about some of the stats in the next question. In regards to quality of life, I think it is important to know the age of the woman and to make sure that they are working with their medical providers to ensure they address education regarding bone and heart health and mental health if having a total hysterectomy where their ovaries are removed, especially if they are young. Also having a conversation about HRT, diet, exercise, and lifestyle habits sooner rather than later. Hormones play a key role in our overall health, not just gynecological health.

 

1. Statistics of successes with hysterectomy, ablation, excision and orilissa? 

 

Hysterectomy: It is important to remember that the studies looking at these techniques don’t always report if excision surgery of the lesions was also performed and to differentiate which type of hysterectomy is being performed. This makes a huge difference in the outcome. Clinically, I have seen young women undergo hysterectomy without excision surgery. A hysterectomy with no oophorectomy showed a high rate of occurrence (62%), 6 fold recurrence of pain and 8 fold risk of re-operation. Total hysterectomy showed much less rate of recurrence, around or less than 10%. 

 

Excision vs. Ablation: A meta-analysis in 2017 showed that compared to ablation, excision surgery had a significantly greater reduction in symptoms of dysmenorrhea and dyschezia (painful bowel movements). Dyspareunia (painful sex) showed a non-significant benefit with excision, and one study showed a significant reduction in chronic pelvic pain with excision at one year post-op. There are studies that show improvement in symptoms after ablation, and these studies show that it is often in the cases of superficial disease, which may be why some women still feel better after ablation. Unfortunately, unless the lesion is excised and tested, you cannot confirm the lesion is superficial or deep. There are specific areas in the body that they have studied that more often are consistent with deep vs. superficial lesions though. 

 

Orillisa: Before addressing the numbers and stats regarding Orillisa, it is extremely important to note that many studies I’ve looked at that report outcomes are reviewed by, or funded by AbbVie. This means that there is HUGE bias in reporting and the results should be taken with extreme caution. Here they are…with regards to Orilissa, a study conducted in 2017 demonstrated an improvement in dysmenorrhea in 46-76% of women depending on the dose given (high vs. low) and about 50-55% in non-menstrual pelvic pain, again, depending on the dose given. They also reported that there were no concerns regarding safety. Stats 101 you learn to read research articles and look for bias that may invalidate studies, when there is a conflict of interest like there is here, it is very hard to not question the accuracy of these results especially when you see the effects clinically…. One study that I found was not funded or reviewed by AbbVie and this was their concluding statement: 

“Among the new drugs investigated, late clinical trials on gonadotropin-releasing hormone (GnRH) antagonists and aromatase inhibitors (AIs) have demonstrated the most promising results. For this reason, elagolix, a new GnRH-antagonist, recently received the approval by the Food and Drug Administration (FDA) for treating pain associated with endometriosis. Other drugs with innovative targets have been identified, but the majority of these compounds have only been evaluated in preclinical studies or early clinical trials. Thus, a further extensive clinical research is necessary to better elucidate their pharmacologic characteristics, their efficacy, and safety for the treatment of this benign chronic disease.” 

 

At first I thought, great! And then I realized, the studies they were referencing, were probably the ones that I found that involved AbbVie 🙁 

 

1. Hormonal suppression yes or no? (After surgery)

 

But why? If you treat endo properly – a proper surgery and all of the other factors involved, why put the band-aid back on? We have to remember that hormonal suppression is only directed at symptom reduction, this is clearly stated by ACOG. So, this question depends on many factors. First, what kind of surgery did you have? Ablation or excision…or, hysterectomy? If you did not have a proper surgery that eradicated all of the endo, you still may have symptoms and thus MDs may suggest to follow surgery with some sort of hormonal suppression. Ideally, if you have an adequate surgery, and have addressed all of the pain generators, you have a lower risk of endometriosis recurring. Because there are many theories of how and why endo develops, including stem cell theories, there is a chance that endo may come back, even with the best surgeon. Many new research studies are really looking into this and the connection between the gut and endo. Specifically, how the immune system (which the gut plays a very large role in) fails to prevent endometrial implantation and growth. So, really looking at those factors and addressing them appropriately will give you the best possible chance endo will not recur. 

 

1. Why does Vulvodynia correlate with endo endometriosis? Any ease on either? 

 

There are several ways these two are connected. This can be because of hormonal therapies, our nervous system (remember these are considered overlapping visceral pain syndromes), infection and inflammation, and vascular congestion. There are many of the same things present in both. This doesn’t necessarily mean that one causes the other, especially in the case of women with vulvodynia, these women do not always have endometriosis. However, I would say that many women with endometriosis have some type of vulvodynia. In my practice I often see vestibulodynia, which is a subtype of vulvodynia, and can often be caused by the use of hormonal birth control. To treat them, it is important to work with a professional trained in these conditions to help you identify the underlying cause, so that appropriate treatment is started. Depending on the cause of vulvodynia, the treatments vary. 

 

1. How can I make sure I get an accurate diagnosis? 

 

Work with a specialist that is trained in endometriosis and ideally performs excision surgery. Do your homework and be your own advocate. There are resources online like Nancy’s nook that provides extensive resources for patients to receive accurate information. Previously this was a facebook group (and still is) and they now have a website for those not on social media. You may have local support groups that also have information in your local areas and lists of doctors with feedback from others on the types of treatments they have been offered and their experience with that particular provider. Just remember, an accurate diagnosis means a surgery with histological confirmation. But it doesn’t mean that you cannot start with a clinical diagnosis. I would also caution that these groups are really great and provide a lot of support, especially if you’ve felt alone in this journey. It can be helpful to get guidance from others going through the same thing, but every situation is different and not everyone is truly informed, so if you are part of a support group, still please do your own research. Nancy’s nook is great because it’s not a support group in the sense that you can share what happened at your doctors office, but a place to provide accurate information for those suffering from endo. 

 

1. How can I make sure my doctor is up to date on the latest research and best treatments? 

 

Do your homework. One of the things I love about women with endo is that this population is probably one of the most knowledgeable about their condition out of any condition that I treat. Sadly, this is usually because of the failure to get an accurate diagnosis quickly, or anything that will help their symptoms. I would recommend starting with Nancy’s nook and reviewing their doc list of who is trained in endometriosis excision surgery in your area. Many of these doctors have undergone specific training on their own to provide the best care possible and as of now, endometriosis care is not a recognized medical specialty under ACOG. Boo!

 

1. Is it common for scar tissue to adhere to the bladder and cause pain after voiding? 

 

Endo can be found on the bladder and cause this symptom, yes. But, so can many other factors like pelvic floor dysfunction, chronic pelvic pain, vestibulodynia, infections, GI issues, etc. Urinary tract endometriosis (the most common being bladder endo) is a type of deep infiltrating endo that has been described in 19-53% of women with DIE, but it represents only a small percentage (1-2%) in all women with endometriosis, so with this being said, it may make sense to look at other causes of this symptom, but definitely is important to keep in mind, especially if you haven’t had a surgery by a trained specialist. 

 

1. How do you know when to seek diagnosis vs just treating symptoms? 

 

This is complex and varies in each case. If you have tried many treatments that are deemed therapeutic and have good supporting evidence and still have symptoms, it makes sense that surgery is a good next step, by a trained surgeon in excision of endometriosis. We know that removing the endometriosis AND treating all of the underlying pain generators is the best way to reduce symptoms. The way that I explain it to my patients is that we need to identify and treat all of the pain generators and if the lesions are a pain generator, we have to treat that too so that this cycle can stop. I think where many people get frustrated are that they haven’t really identified all the generators or have had effective treatment for them (including surgery), but think they have, and want to give up or are just so overwhelmed by all of the information out there and which direction to go. One of the key things I feel is necessary is to really address lifestyle factors like your diet, stress levels, sleep, and gut health. 

 

1. Had excision but still having low abdominal tenderness (maybe uterus) during ovulation. I want to know what to do about that. 

 

I would look at other factors of inflammation and hormonal imbalances. If you have underlying gut issues, estrogen dominance, nutritional deficiencies, etc. Also myofascial issues can contribute, so finding a PT that does myofascial release or visceral manipulation would be a good starting point. It is always possible that there is scar tissue from the surgery, but starting with the above suggestions would be ideal. 

 

Again, thank you to everyone who joined the IG live! It was great to answer your questions and hopefully provide some insight into what you may be living with. For all the PTs and PTAs out there wanting to learn more about how you can help your patients, Britt Gosse and I (Jandra Mueller) will be teaching our course Be a Warrior for the Warrior: A PTs comprehensive guide in managing endometriosis Jan 23-24th, 2021. This course will be held live via Zoom and those there is a discount for the first 10 registrants! Register here and use code Endo21 for the discount! 

 

If you enjoyed this recap and want to be tuned in for future Q&A’s with other featured guests, follow us on Instagram. Check out Lj’s Instagram for a pelvic pain, endo-warrior community. Another live Q&A is scheduled for January and will be compiled as a blog later on!

 

In case you missed it, here is a link to my Endometriosis Webinar. 

Podcasts

“The Endometriosis Podcast” by Nicholas Fogelson 

“Natural MD Radio” by Aviva Romm (the episode specifically on magnesium for women is what I referenced in the blog post, but she has really great ones!) 

 

Some other podcasts that may be relevant are:

PHRC’s co-founder Stephanie Prendergast’s interview on vulvodynia and vestibulodynia

Physical Therapy for Pelvic Health and Pain Relief Stephanie Prendergast’s interview with Lorraine Faehndrich 

Blog Posts

These blog posts all have relevance for those women suffering from endo and/or if you have been on oral contraceptives or had hormonal treatment for endo related symptoms. 

Endometriosis: Beyond the lesions

Thinking outside the gut: could endometriosis be the culprit behind your constipation or bloating? 

Managing life on or after “the pill”

Jagged Little Pill: How Oral Contraceptives Wreak Havoc on the Female Body

Treatment solutions for endometriosis 

Chronic pelvic pain and endometriosis: translational evidence of the relationship and implications.

 Books

Beating Endo by Iris Orbuch, MD & Amy Stein, DPT

The Doctor will see you now by Tamer Seckin, MD

Useful Websites/groups

Facebook groups: Nancy’s Nook & Endometropolis

Endo What?

The endo.co

Endofound.org

How to find informed medical providers

International Pelvic Pain Society Find a Provider

Americal Physical Therapy Association’s Section on Women’s Health PT Locator

Herman and Wallace Find a Provider

Pelvic Guru Provider Directory

Self Treatment Tools

Foam roller

The Stick 

Theracane

PelviWand/TheraWand

Cushions

Tush Cush

Cushion your Assets

Kabooti

Theraseat

 

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Are you unable to come see us in person? We offer virtual physical therapy appointments too!

Due to COVID-19, we understand people may prefer to utilize our services from their homes. We also understand that many people do not have access to pelvic floor physical therapy and we are here to help! The Pelvic Health and Rehabilitation Center is a multi-city company of highly trained and specialized pelvic floor physical therapists committed to helping people optimize their pelvic health and eliminate pelvic pain and dysfunction. We are here for you and ready to help, whether it is in-person or online. 

Virtual sessions are available with PHRC pelvic floor physical therapists via our video platform, Zoom, or via phone. The cost for this service is $85.00 per 30 minutes. 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. 

PHRC is also offering individualized movement sessions, hosted by Karah Charette, DPT. Karah is a pelvic floor physical therapist at the Berkeley and San Francisco locations. She is certified in classical mat and reformer Pilates, as well as a registered 200 hour Ashtanga Vinyasa yoga teacher. There are 30 min and 60 min sessions options where you can: (1) Consult on what type of Pilates or yoga class would be appropriate to participate in (2) Review ways to modify poses to fit your individual needs and (3) Create a synthesis of your home exercise program into a movement flow. To schedule a 1-on-1 appointment call us at (510) 922-9836

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