3 months ago Endometriosis , Endometriosis Education No comment

Can Endometriosis on Ureter Cause Kidney Shooting Back Pain?

Endometriosis is a common gynecological condition that affects many women during their reproductive years. While it typically manifests in the pelvic region, in some instances, it may invade other organs, including the urinary system. This article explores the question: Can endometriosis on the ureter cause kidney shooting back pain?

About Endometriosis

Endometriosis is a chronic disease characterized by the presence of endometrial-like tissue outside the womb. This could include the ovaries, fallopian tubes, and the lining of the pelvic cavity. In some extreme cases, endometrial tissue may also affect organs outside the pelvic cavity, such as the bladder, bowel, or kidneys.

Understanding Ureteral Endometriosis

Ureteral endometriosis is an uncommon manifestation of the disease, accounting for about 1% of all endometriosis cases. It involves the ureters, the tubes that transport urine from the kidneys to the bladder. This condition can lead to urinary tract obstruction, resulting in hydronephrosis, which is the swelling of a kidney due to a build-up of urine.

The Kidney-Endometriosis Connection

The kidneys can be impacted when one or both of the ureters become affected by endometriosis. The section of the ureter that is usually affected sits below the pelvic area.

Symptoms of Kidney Endometriosis

Kidney endometriosis can be asymptomatic for several years. If a person who has undergone surgery to treat endometriosis has ongoing urinary problems such as pain and infections, it may suggest the presence of urinary tract or kidney endometriosis. Symptoms may include:

Pain in the lower back that gets worse with a monthly menstrual cycle. That pain can also extend down through the legs.
Blood in the urine that can co-occur with the menstrual cycle
Difficulty urinating
Recurrent urinary tract infections

Diagnosis of Kidney Endometriosis

The diagnosis of ureteral endometriosis relies heavily on clinical suspicion. As a result, they often misdiagnose patients with kidney cancer. This can lead to patients not receiving treatment on time, or receiving the wrong kind of treatment.

Treatment Options

Kidney endometriosis can lead to kidney damage and even kidney failure if left untreated. However, the best approach is to treat the condition by removing endometriosis lesions with minimally invasive laparoscopic surgery.

The Silent Threat of Kidney Failure

One of the most concerning aspects of ureteral endometriosis is the silent threat of kidney failure. It is estimated that as many as 25% to 50% of nephrons are lost when there is evidence of ureteral endometriosis, and 30% of patients will have reduced kidney function at the time of diagnosis.

Impact on Kidney Health

The good news is that if one kidney isn’t functioning due to endometriosis, you can survive on the other kidney. So, if you find out you only have one fully-functioning kidney, it’s essential to take care of it.

Conclusion

In conclusion, while endometriosis is typically a pelvic condition, it can venture beyond and affect the urinary system, including the kidneys. This can lead to severe complications, including kidney failure. Therefore, it’s crucial for women with endometriosis to be aware of the potential symptoms and seek medical advice if they experience any signs of kidney problems. The early detection and treatment of ureteral endometriosis are crucial to preserving kidney function and overall health.

References:

https://drseckin.com/kidney-endometriosis/

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3535807/

Endometriosis: Perilous impact on kidneys

https://endometriosis.net/clinical/silent-kidney-failure

3 months ago Endometriosis , Endometriosis Education No comment

How to Treat Bowel Endometriosis: A Comprehensive Guide

Bowel endometriosis, a complex and severe variant of endometriosis, is a condition best navigated with a deep understanding of its details. This guide aims to shed light on the various aspects of bowel endometriosis, from its origins to symptoms, diagnostic approaches, and treatment options, to empower those affected.

What is Bowel Endometriosis?

Endometriosis, a chronic health disorder predominantly affecting women in their reproductive years, is characterized by the growth of endometrial-like tissue, which usually lines the uterus in regions outside the uterus. This misplaced tissue prompts an inflammatory reaction, leading to distressing symptoms. When this aberrant tissue growth takes place on or inside the bowels, the condition is referred to as bowel endometriosis.

How Common is Bowel Endometriosis?

While the exact prevalence of bowel endometriosis remains uncertain, it’s estimated to occur in 5-15% of all endometriosis cases. Predominantly, it manifests on the rectum or sigmoid colon but can also affect the appendix or small intestine.

Read More: https://icarebetter.com/endometriosis-and-inflammatory-bowel-disease-distinguishing-the-differences/

Recognizing the Symptoms

Symptoms of bowel endometriosis may not always be apparent, especially in the early stages of the disease. However, as the condition progresses, women may experience discomfort associated with their menstrual cycle, sexual intercourse, bowel movements, and even infertility.

Symptoms commonly associated with bowel endometriosis include:

Painful Bowel Movements: This is often accompanied by constipation or diarrhea.
Rectal Bleeding: This symptom, which is more uncommon, usually occurs during menstruation.
Infertility: Some women may experience difficulty conceiving.
Pelvic Pain: Chronic pelvic pain is a common symptom associated with endometriosis, often more severe during menstruation or ovulation.
Painful Intercourse: This is often due to the endometriosis lesion causing a distortion of the pelvic anatomy.

It’s important to note that bowel endometriosis can sometimes mimic symptoms of other gastrointestinal conditions, like irritable bowel syndrome (IBS), making it challenging to diagnose.

Diagnosing Bowel Endometriosis

A comprehensive diagnosis of bowel endometriosis usually involves a combination of physical examination, medical history analysis, and advanced imaging techniques. The diagnostic process may include:

Physical Examination: This includes a manual check for growths in the rectum or vagina.
Imaging Tests: These can include ultrasound, MRI, colonoscopy, and barium enema.
Laparoscopy: This surgical procedure is considered the gold standard for diagnosing endometriosis, as it allows for visual examination of the uterus, ovaries, and other pelvic structures. And surgeons can take samples for histopathology evaluations.

Treating Bowel Endometriosis: An Overview

Treatment for bowel endometriosis is complex and multifaceted. It requires a personalized approach, taking into account the severity of the disease, the patient’s age, fertility goals, and personal preferences. The primary treatment options include:

Hormonal Therapy: This involves medications that control estrogen levels, which can influence the progression of endometriosis. These medications can help manage pain and other symptoms.
Pain Management: Over-the-counter or prescription nonsteroidal anti-inflammatory drugs (NSAIDs) may be recommended to help alleviate pain.
Surgery: Surgical interventions aim to remove as much endometrial tissue as possible while preserving organ function.

Surgical Treatment Options

Surgery is typically the primary treatment for bowel endometriosis, particularly for severe cases. The goal of surgery is to remove endometrial implants without compromising the functionality of the organs involved. There are three main surgical options:

Segmental Bowel Resection: This involves removing the section of the bowel affected by endometriosis and reconnecting the healthy portions. This option is often recommended for larger areas of endometriosis.
Rectal Shaving: This procedure involves shaving off the endometriosis from the top of the bowel without removing any portion of the intestines. It’s often used for smaller areas of endometriosis.
Disc Resection: In this procedure, a surgeon cuts out a small disk where the endometriosis lesions appear and then closes the remaining hole.

Understanding the Risks of Surgery

Surgery for bowel endometriosis is a complex procedure associated with certain risks. These can include short-term complications such as infection, leakage of bowel content during the postoperative healing phase, peritonitis, and septicaemia. Long-term risks might include bowel dysfunction, characterized by frequency, urgency, and incontinence.

Hormone Treatment Options

Although hormonal treatments cannot halt the progression of endometriosis, they can help manage symptoms. Hormonal treatments for bowel endometriosis can include birth control pills, progestin injections, or, less favorably, gonadotropin-releasing hormone (GnRH) agonists.

Managing Symptoms and Quality of Life

Bowel endometriosis can significantly impact the quality of life of those affected. However, with appropriate treatment and management strategies, many women affected by this condition can lead fulfilling lives. Communication with your healthcare team, lifestyle modifications, and psychological support can all contribute to improving the quality of life.

Conclusion

Understanding how to treat bowel endometriosis is crucial for managing this complex and often painful condition. With the right approach, it’s possible to mitigate symptoms, improve fertility outcomes, and enhance the quality of life for those affected. If you suspect you have bowel endometriosis, it’s important to speak with a healthcare provider who can guide you through the diagnostic process and treatment options. With the right knowledge and resources, you can navigate this challenging condition and find a path to improved health and well-being.

References:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4229526/

https://weillcornell.org/news/what-is-bowel-endometriosis

https://www.webmd.com/women/endometriosis/bowel-endometriosis

https://www.healthline.com/health/womens-health/bowel-endometriosis

Bowel Endometriosis

3 months ago Bowel Endometriosis , Endometriosis , Endometriosis Education No comment

Understanding How Endometriosis Can Cause

Bowel Problems

Endometriosis, a common health concern among women, can manifest itself in various ways, one of them being bowel problems. But how exactly can endometriosis cause bowel problems? This article will take you through the intricate connection between endometriosis and bowel problems, the symptoms to look out for, diagnostic procedures, and potential treatments.

What is Endometriosis?

Endometriosis is a health condition where the tissue similar to the type that lines the uterus, known as the endometrium, grows outside the uterus. This condition predominantly affects the reproductive organs such as the ovaries, fallopian tubes, and the external part of the uterus. However, it can also extend to other parts of the body including the bowels, rectum, and other pelvic organs.

Understanding Bowel Endometriosis

Bowel endometriosis is a form of endometriosis that affects the gastrointestinal tract, specifically the bowels. It can appear in two forms: superficial (on the surface of the bowel) and deep (penetrating the bowel wall).

Symptoms of Bowel Endometriosis

The symptoms of bowel endometriosis can vary widely depending on the location of the lesion, its size, and how deep it is in the bowel wall. Some women may experience no symptoms. However, common symptoms include:

Difficulty in passing stool or loose, watery stools (constipation or diarrhea)
Pain during bowel movements
Menstrual discomfort
Painful sexual intercourse
Difficulty in conceiving (infertility)
Blocked bowel (a rare symptom)

It is noteworthy that these symptoms can often mimic other conditions like irritable bowel syndrome (IBS), but the two conditions are distinct. One distinguishing factor is that with bowel endometriosis, symptoms often worsen before and during the menstrual period.

Causes of Bowel Endometriosis

The exact cause of bowel endometriosis is still under study. However, several factors have been linked to its occurrence. These include genetic predisposition, inflammation, and levels of estrogen, a female sex hormone.

The Prevalence of Endometriosis

Endometriosis affects approximately 10%-12% of women of childbearing age. The condition is often diagnosed in women who are in their 30s, although it can occur at any age.

Diagnosing Bowel Endometriosis

The diagnosis of bowel endometriosis starts with the doctor asking about your symptoms and medical history, followed by a physical examination of your pelvic area. The doctor may also recommend imaging tests to get more information on the location and size of any cysts or tissue damage related to endometriosis. These tests include:

Transvaginal or transrectal ultrasound: This procedure involves the insertion of a wand-like device into your vagina or rectum. This device releases sound waves that create images of your organs.
Magnetic resonance imaging (MRI): An MRI test provides detailed images of your organs and tissues using a magnetic field and radio waves.
Laparoscopy: This surgical procedure involves making a small incision near your belly button and inserting a thin viewing tool called a laparoscope.
Barium enema: This type of X-ray is used to see changes or defects in your large intestine (colon).
Colonoscopy: They pass a tube with a camera on its tip through the anus into the colon to directly visualize the wall and take samples from inside the colon.

Treating Bowel Endometriosis

The treatment plan for bowel endometriosis will be personalized, taking into account your symptoms, medical history, age, and reproductive plans. Treatments can include:

Surgery: The aim of surgery is to remove as many lesions as possible while preserving your organs and overall health.
Hormone treatments: These medications control estrogen levels which can worsen the symptoms of bowel endometriosis.
Counseling: Given the ongoing nature of bowel endometriosis and its impact on both physical and mental health, counseling may be recommended to provide emotional support.

The Prognosis for Bowel Endometriosis

There is currently no cure for endometriosis. However, treatments like surgery and hormone therapy can help manage the symptoms. It is also important to note that symptoms could return if treatment is halted, or they could recur on their own, especially in cases with deep lesions.

Endometriosis is a complex condition that can cause bowel problems and other health issues. If you suspect you have endometriosis and are experiencing bowel problems, it’s important to consult with a healthcare provider. Early diagnosis and treatment can help manage symptoms and improve your quality of life.

References:

https://www.webmd.com/women/endometriosis/bowel-endometriosis

https://www.endometriosis-uk.org/endometriosis-and-bowel

https://www.endofound.org/gastrointestinal-distress

Bowel Disease

ENDOMETRIOSIS AND CONSTIPATION

4 months ago Endometriosis , Endometriosis Education No comment

Through the Looking Glass: Reflecting on 2023

Embarking on the journey of self-reflection is not just a personal endeavor; for us at iCareBetter, it’s a collective celebration of progress, community, and collaboration. As we bid farewell to 2023, a year marked by challenges and triumphs, it’s time to take a look into the past year and reflect on all that has been accomplished. Join us as we navigate through the areas of growth, community involvement, projects, and meaningful collaborations that shaped our year. In this special blog post, we’re excited to share the insights gained from our podcast endeavors and offer a sneak peek into the thrilling developments that await us in 2024. Let’s rewind, recap, and anticipate the exciting narrative that continues to unfold in the ever-evolving story of iCareBetter.

About iCareBetter

iCareBetter is an innovative platform dedicated to helping patients with endometriosis and chronic pelvic pain find compassionate and skilled experts. All experts on iCareBetter have shown knowledge and expertise in the treatment of endometriosis and chronic pelvic pain.

Vision

Our vision is to reduce the symptom-to-effective treatment of endometriosis to less than a year. Studies show that patients with endometriosis spend an average of 7.5 years to have an official diagnosis. Moreover, even after the diagnosis, patients will have to spend several years with multiple failed treatment attempts. After the long delays in diagnosis and treatment, they might be lucky enough to receive effective treatment from an expert.

Mission

Our mission is to improve access to high-quality specialized care for those with endometriosis. iCareBetter wants to combat the issue of patients living in confusion, pain, and isolation. To that end, we hope to connect as many patients to the right experts as early as possible. And we hope that this will ensure timely diagnosis and effective treatment.

To read more about why iCareBetter was built and the inspiration behind it, check out our blog here and listen to episode 1 of the podcast here, where Saeid and Jandra give you a behind the scenes look into what inspired them.

What happened in 2023?

In 2023, iCareBetter grew in many ways, including new avenues to provide education along with collaboration from the community. Here are some of the highlights!

We started a podcast! iCareBetter: Endometriosis Unplugged is hosted by Jandra Mueller, DPT, MS a pelvic floor physical therapist and endometriosis patient. The podcast is available on Spotify, Apple Podcasts, and Youtube.
- We had 19 weekly episodes in season one
- Listeners joined from all over the world, reaching 22 countries
We brought on a team to help with new content on social media creating a more visually appealing platform, community engagement, and followers.
We now have 211 providers on our website available and ready to help those suffering from endometriosis and we are continuing to grow!
Our blog content is now consistent with twice weekly posts bringing you updates on all things endometriosis.

What To Expect in 2024

While 2023 was a big year for iCareBetter, we hope to continue the growth and expand our providers across the globe. Our hope is to increase our collaboration with medical specialists, researchers, and advocates. There are some exciting things to come in 2024 including a new season of iCareBetter: Endometriosis Unplugged as well as some other projects that will be announced in 2024.

We hope you have found our resources helpful either for yourself or a loved one, and hope you continue to share the love and spread the word about Endometriosis. All of us here at iCareBetter wish you a safe and happy new year.

Cheers to 2024!

Do you or a loved one have Endometriosis? Here are some blogs that may help you get started on your journey.

5 months ago Endometriosis , Endometriosis Education No comment

Endometriosis Guidelines: A Closer Look at a Potential Source of Confusion in Treatment (Part 2)

Understanding Endometriosis Treatment Confusion

Endometriosis affects millions of women worldwide, presenting with pain, irregular menstruation, and infertility. To shed light on the most effective treatment methods, this article is Part 2 in our series on this topic. It summarizes and comments on the findings from a recent 2021 review which provided a detailed analysis of various endometriosis treatment global guidelines as of September 2020.

There are often some discrepancies between guidelines for any disease. However, for endometriosis, a prior review in 2018 revealed that only about 7% of recommendations were comparable between international guidelines. Up to 28% of the recommendations were not supported by good research evidence at all. This helps explain why there is such a wide variation between doctors’ recommendations in clinical practice.

Key Guidelines reviewed in the most recent publication were:

American College of Obstetricians and Gynecologists (ACOG)–reviewed in our last post, which you can read HERE
Society of Obstetricians and Gynaecologists of Canada (SOGC)
European Society of Human Reproduction and Embryology (ESHRE)
Australian National Endometriosis Clinical and Scientific Trials (ACCESS)
Royal College of Obstetricians and Gynaecologists (RCOG)
French National College of Gynecologists and Obstetricians (CNGOF)
American Association of Gynecologic Laparoscopists (AAGL)
German Society for Gynecology and Obstetrics (DGGG)

Summary Review of Treatment Recommendations

Non-Hormonal Medical Pain Management
- Nonsteroidal anti-inflammatory drugs (NSAIDs): While this is considered by all guidelines to be first-line therapy for dysmenorrhea and acyclic pelvic pain, it is not specific for endometriosis. A diagnosis and targeted therapy is more prudent since a large review showed no difference in effectiveness between NSAIDs and placebo.
Hormonal Treatment Options:
- Progestins and Combined Oral Contraceptives (COCs): Widely recommended for initial pain management. Specific formulations and dosages vary across guidelines. Of interest, there is little mention of compounded micronized progesterone which is hard to study but may deserve a place in the conversation. The Levonorgestrel Intrauterine System (LNG-IUS) is particularly noted for its localized progestin delivery, reducing systemic side effects and effectively managing pain.
- Megace (Megestrol Acetate): A potent progestin recommended by several guidelines but varies as a first-line vs second-line option. The additional benefit is less bone loss than that seen with GnRH agonist therapy.
- GnRH Agonists: Uniformly recommended in all guidelines for severe symptoms after first-line therapy; potential side effects, which can be long-lasting, include decreased bone density and menopausal-like symptoms. Add-back low-dose estrogen therapy can reduce symptoms. Most guidelines, and the FDA, recommend durations of 6 months or less.
- Emerging Hormonal Therapies: GnRH antagonists are gaining attention for their rapid onset of action and fewer side effects compared to agonists. The evidence is not conclusive.
- Danazol and Gestrinone: Older treatments with androgenic effects, are less commonly used today due to side effects. Gestrinone is not currently available in the United States.
- Selective Estrogen Receptor Modulators (SERMs) and Selective Progesterone Receptor Modulators (SPRMs) are emerging options being explored for their targeted action and potential benefits.
- Aromatase Inhibitors: Considered in some cases, especially for pain unresponsive to other treatments. Most guidelines agree that this is a possible second-line option, but the evidence is not conclusive. A possible niche for effective use may be in post-menopausal patients who have endo.
Surgical Approaches: Navigating the Complexities
- Laparoscopic Surgery: Endorsed for its efficacy and reduced recovery time, compared to big incision (laparotomy) surgery. However, the extent of surgery (complete vs. partial removal of lesions) varies among guidelines. Studies are likely hampered by different skill sets between participating surgeons.
- Robotic Surgery: AAGL and others highlight its benefits in complex cases, but its cost and accessibility limit widespread use. Specialized training is required.
- Ablation vs. Excision: The choice between these two methods remains a contentious topic, for some reason. Ablation is simpler and requires much less technical skill but is only applicable for treating superficial lesions. It may not be as effective in the long term as excision, which is more comprehensive and accurate in terms of removing all of the visible disease. Again, the skill base of surgeons is critical, and high variability in this regard may be affecting the ability to prove or disprove the effectiveness and safety of each.
- Endometrioma: Cystectomy or excision of endometriomas is superior to drainage in terms of lower recurrence. Excision also provides the opportunity for pathologic confirmation, and this may be important where it is not clear whether or not there is also a tumor present. Where fertility is a major concern, the more atraumatic the approach to surgery, the less ovarian reserve is affected, and this is another area where surgeon expertise is critical.
- Deep Infiltrating Endometriosis: Highly specialized excisional surgeries are recommended because ablation simply does not work with these lesions. There is an even stronger emphasis on the surgeon’s expertise and patient selection. Intuitively, the best outcomes probably rest with selecting the best possible technology in a master surgeon’s hands. Some strongly believe that this means robotic surgery for advanced cases with highly distorted anatomy.
- Hysterectomy: This is considered a “definitive” or last resort surgery but may be helpful for complete excision of endo at any point. It also allows the removal of any co-existing pain-producing adenomyosis, which is embedded in the wall of the uterus.
- LUNA (laparoscopic uterine nerve ablation) and PSN (presacral neurectomy): Guidelines reflect multiple reviews that suggest no benefit to LUNA but a possible benefit for PSN in selected cases. PSN is technically very challenging and treatment should be individualized. As far as LUNA is concerned, studies include a mix of ablation and excision, which means a lack of precision in many of them and, again, surgeon skill level may be a factor. Thus a definitive conclusion may be elusive until a better methodology to accurately study this is employed.
Complementary and Alternative Therapies: Exploring Additional Avenues
- Acupuncture and Electrotherapy (TENS): Mentioned in some guidelines as adjunct therapies, with some encouraging results. More research is needed to fully validate their effectiveness. However, these are low-risk options.
- Nutritional Supplements: Some guidelines suggest that dietary changes and supplements might play a role in symptom management. This includes microbiome management for optimal estrogen metabolism. There will likely never be large randomized studies for any of these variables because they would have to be huge and thus impractical to conduct. But in today’s emerging world of personalized molecular medicine, other study methodologies are being explored to determine which of these approaches to diet and lifestyle may be more effective than others.
Infertility and Endometriosis: A Delicate Balance
- Surgical vs. Non-Surgical Approaches: The decision to opt for surgery in infertility cases is complex and depends on individual factors like age, severity of endometriosis, and previous treatments. Reducing inflammation appears to be beneficial to effective intrauterine implantation and gestation.
Emerging Treatments and Research
- Future Directions: Ongoing research into immunotherapies, new hormonal agents, and gene/molecular therapy offer promising avenues for more personalized treatment strategies.

Endometriosis management is a highly dynamic field with evolving guidelines and currently very discrepant recommendations due to incomplete or low-quality scientific evidence. Understanding current options is crucial for women to make informed decisions about their health. Regular consultations with endometriosis experts, staying informed about new research, and considering a multi-disciplinary holistic approach to treatment can significantly improve quality of life.

Additional Reading:

References:

Kalaitzopoulos, D. R., Samartzis, N., Kolovos, G. N., Mareti, E., Samartzis, E. P., Eberhard, M., Dinas, K., & Daniilidis, A. (2021). Treatment of endometriosis: a review with comparison of 8 guidelines. BMC Womens Health, 21(1), 397. https://doi.org/10.1186/s12905-021-01545-5
Hirsch M, Begum MR, Paniz É, Barker C, Davis CJ, Duffy J. Diagnosis and management of endometriosis: a systematic review of international and national guidelines. BJOG. 2018;125(5):556–64.

5 months ago Endometriosis , Endometriosis Education No comment

Endometriosis Guidelines: A Closer Look at a Potential Source of Confusion in Treatment Debates

Treatment strategies for endometriosis vary widely, with the primary objective being to alleviate pain and enhance fertility where necessary. However, the confusion and inconsistency in recommendations is alarming. This article reviews and comments on some of the key current management strategies supported by the American College of Obstetrics and Gynecologists (ACOG), by way of Bulletin #114 (2010 and reaffirmed in 2022) and Bulletin #760 concerning adolescents (2018 and reaffirmed 2022). In the following posts, we will review other guidelines to give a more in-depth look at these inconsistencies and what you may face as you navigate your journey with endometriosis.

Other internationally recognized bodies have published various guidelines seeking to help clinicians with the diagnosis and treatment of endometriosis. Unfortunately, there is significant discrepancy between some of the recommendations due to the complex nature of the disease and limitations of research to date. Many patients will look to online resources and forums after seeing providers and not seeing results. What they may be surprised to find is that information on sites dedicated to endometriosis are often inconsistent with what is proffered by different guideline resources.

Surgery

Surgery is considered a cornerstone in the management of pain and infertility associated with endometriosis. The timing of surgery and the type of surgery recommended varies between guidelines. However, it is illuminating to note that ACOG guideline Bulletin #114 states that “definitive diagnosis of endometriosis only can be made by histology of lesions removed at surgery.”

Minimally invasive surgery is highly preferred over open surgery (laparotomy) due to less pain, shorter hospital stay, quicker recovery, and better cosmetic results. However, a high level of skill and expertise is required to perform these procedures, whether it be laparoscopic or robotically assisted surgery. Despite better technology inherent in robotic surgery, outcomes research does not clearly show which modality is better overall. However, the skill of the surgeon likely trumps the surgical tools used. Robotic surgery may be better suited for particularly difficult cases involving severely distorted anatomy due to advanced endo or scarring from repeat surgeries.

The excision of endometriosis is widely recommended for patients with endometriosis-associated pain. However, there is ongoing debate on the preferred surgical technique (ablation versus excision) due to lack of conclusive evidence. Currently, the studies that look at excision surgery vs. ablation have significant limitations, potentially due to variation in the skill and training of the surgeons involved in these studies. Meaning, studies to date may not have been done by true excision specialists and resulted in incomplete removal thereby skewing the research results. This variation in surgeon expertise is a common plight affecting surgical procedure outcomes research.

In ovarian endometriosis (endometriomas or chocolate cysts), minimally invasive excision of endometriomas is superior to drainage and ablation in terms of reducing recurrence of dysmenorrhoea, dyspareunia, cyst recurrence, and the need for further surgical interventions.

In cases where women have completed their family planning and failed to respond to conservative treatments, hysterectomy with simultaneous excision of endometriotic lesions is considered the last resort. However, except for cases in which there is coexisting adenomyosis, hysterectomy is not necessarily required for pain relief purposes. Each situation should be highly individualized.

Medical Management of Endometriosis

While surgery is an effective treatment strategy and helps many patients, medical management currently plays a crucial role in managing symptoms and preserving fertility. These treatments primarily focus on pain management, hormonal suppression, and birth control.

Pain management is a critical aspect of endometriosis treatment. Non-steroidal anti-inflammatory drugs (NSAIDs) are widely used for symptomatic treatment of dysmenorrhea and acyclic pelvic pain. In fact, in their article discussing dysmenorrhea and endometriosis in adolescents, without any workup, ACOG believes that the majority of adolescents have primary dysmenorrhea which is defined as painful menstruation in the absence of pelvic pathology and recommends first line-therapies such as NSAIDs and birth control. The question is: without undergoing a definitive workup and assessment (surgery) for endometriosis and knowing that imaging is insufficient for diagnosis – how is it determined they do not have pelvic pathology? Furthermore, ACOG considers those that respond symptomatically to birth control pills and NSAIDs as a confirmation of primary dysmenorrhea, though some people with endometriosis also respond symptomatically to birth control pills and NSAIDs.

Hormonal suppression, through the use of progestins, combined oral contraceptives, micronized progesterone, or Gonadotropin-releasing hormone (GnRH) analogues, is a common treatment strategy. This recommendation assumes that estrogen is responsible for endometriosis, but this is based on an incomplete understanding of endometriosis genesis and progression. Hormones are clearly involved but, based on increasing molecular evidence, this is not the sole factor in promoting growth of endometriosis.

Birth control pills, specifically combined oral contraceptives, are often used as a first-line therapy for endometriosis-associated pain. This works by suppressing ovulation, which may help slow the growth of endometriotic tissue but has not been proven to induce regression or resolution.

GnRH analogues are recommended as second-line treatment options for endometriosis-associated pain. They work by suppressing the production of estrogen, thereby theroretically reducing the growth of endometriotic tissue. Along these lines, ACOG states that “there is no data that support the use of preoperative medical suppressive therapy,” yet in clinical practice, many individuals are offered these medications inconsistently related to consideration or timing of surgery. Additionally, their level B evidence (second level) recommendations state “After an appropriate pretreatment evaluation (to exclude other causes of chronic pelvic pain) and failure of initial treatment with OCs (oral contraceptives) and NSAIDS, empiric therapy with a 3-month course of a GnRH agonist is appropriate.” It can be argued that this is extremely problematic given that there is no conclusive data to support the use of these medications prior to surgery. Finally, there is a significant risk of short and potentially long term side effects and complications.

Complementary Therapies

Complementary therapies such as dietary interventions, acupuncture, and electrotherapy are increasingly being recognized as potential adjunctive treatments for endometriosis. Quite a bit is evidence supported, but more research is needed to fully establish their efficacy and safety. Thus guidelines do not routinely address such options, leaving patients to their own devices and trial and error.

In conclusion, the management of endometriosis requires a multi-faceted approach, incorporating both surgical and medical treatments which will be variable from patient to patient. In the past few years, there have been some improvements in the amount of research as well as advocacy. Finding a knowledgeable specialized surgeon and care team is of utmost importance. The majority of OBGYNs do not focus on endo, have not undergone further specialized training and generally align with the guidelines set forth by ACOG, largely driven by perceived medico-legal concerns related to standard of practice.. Furthermore, other guidelines seem to differ in their opinions and recommendations regarding medical management and surgery, so stay tuned for more information.

Navigating the Path to Your Endometriosis Specialist

The journey towards resolving endometriosis involves an important decision – selecting the right surgeon. Leveraging expert resources like Nancy’s Nook and iCareBetter can be instrumental in this process.

Find an endometriosis specialist

Determining Your Needs in a Surgeon

Being aware of your specific requirements can help you make an informed choice. Here are a few considerations you should keep in mind:

Training and Experience

A surgeon’s training, notably in Minimally Invasive Gynecologic Surgery (MIGS) or Fellowship in Minimally Invasive Gynecologic Surgery (FMIGS) is crucial. Such surgeons have spent more time in operation theaters, honing their skills through extensive practice.

Ensure your surgeon is board-certified and inquire about their experience, including the number of surgeries they’ve performed, complications they’ve encountered, and outcomes.

Surgical Support Team

The surgeon’s team is equally important. Ask about their procedure in case of bowel, bladder, ureter, or diaphragmatic involvement. Inquire if everything can be done during a single procedure.

Approach to Excision

Surgeons may have different opinions on excision versus ablation. Find out their thoughts on the subject and where and when they excise or ablate.

Post-Surgery Care

Ask if the surgeon routinely prescribes suppressive medications pre and post-surgery. Understand their reasons if they do.

Costs

Don’t hesitate to inquire about costs, insurance acceptance, payment policies, and any hidden charges.

Comfort Level

Ensure you feel comfortable conversing with your surgeon and that your queries are answered satisfactorily.

Find an endometriosis specialist

Factors That May Not Influence Your Decision

Certain aspects may not influence the quality of surgical care:

Gender: The surgeon’s gender does not impact their surgical ability.
Preferred Tools: The surgical tool used is less important than the surgeon’s skill.
Bowel Prep: Surgeons may have different preferences for bowel prep before surgery, but it doesn’t seem to influence the outcome.

Factors That Might Influence Your Decision

Some factors might play a role in your decision-making process:

Reputation: Be cautious while considering a surgeon’s reputation. Some may get media coverage or have excellent bedside manners, but that doesn’t necessarily make them a skilled surgeon.
Office Management: A well-managed front office can make your experience smoother.
Location: Depending on your comfort and ability to travel, location might influence your decision.
Timing: The availability of the surgeon and your urgency might also play a role.

The Most Important Factor

Patients often report being most satisfied with surgeons who actively listen to them. Your surgeon should respect your knowledge and experiences without objection to being recorded or having someone with you during consultations.

Leading Endometriosis Specialists

iCareBetter has a list of endometriosis specialists and surgeons vetted for their surgical skills. Nancy’s Nook on Facebook also provides a list of providers.

Managing Your Relationship with Your Current Doctor

Dealing with a current doctor who might not be capable of handling your endometriosis can be challenging. Here are some tips:

Think long-term, maintain a cordial relationship, and educate your doctor about your condition without alienating them.
Be respectful and considerate of your doctor’s opinions.
Try to keep your doctor on your side by asking for their support.
Remain calm and collected during discussions.
If you choose to seek surgery elsewhere and decide not to return to your current physician, send a copy of the operative and pathology reports with a note of gratitude.
If your doctor dismisses you as a patient, consider it as a sign that it wasn’t a good fit.
Routine care can be handled by a GP or Family Doctor, a Nurse Practitioner, or a Physician’s Assistant.

Find an endometriosis specialist

Remember, in addition to iCareBetter, which has a peer-reviewed video vetted group of endometriosis surgeons, Nancy’s Nook also provides a list of providers to help you navigate this journey.

Conclusion

Choosing an endometriosis specialist is a significant step on your health journey. Leveraging resources like Nancy’s Nook and iCareBetter can provide valuable insights to guide your decision. Always remember, your comfort and trust in your healthcare provider are paramount.

2 years ago Endometriosis , Endometriosis Education , Endometriosis Fertility , Endometriosis Specialist No comment

Does Endometriosis Cause Infertility? Covering the Basics

Learn More About the Connections Between Endometriosis and Infertility

Endometriosis (endo) diagnosis can be a frightening thing. Very frightening. While this inflammatory condition can be binary or non-binary, women of child-bearing age are prone to issues with reproduction due to endo. So does endometriosis cause infertility? Keep reading as I break down the basics on this topic. I will also discuss the emotional impact on patients.

What is Endometriosis?

Endometriosis is a chronic inflammatory condition. In this disease, endometrium-like lesions (the tissue that lines the uterine walls) grow outside the uterus. These glands or stroma cause chronic inflammatory reactions. Endometriosis tissue can occur on the surface of other body parts in the pelvic cavity and distant organs such as the diaphragm, lung, and heart.

Because these endometrial-like lesions shed blood and tissue, many problems result. Pain is a common symptom because the blood and tissue have no way to leave the body. This pressure can result in unbearable pain and other symptoms. If you would like to learn more about what endometriosis is, check out our previous article.

What Happens When Endometriosis Does Cause Infertility

It can. 25 to 50% of women with infertility have endometriosis, and 30 to 50% of women with endometriosis have infertility. However, it is very encouraging to know that most women with endometriosis can become pregnant.

This statistic is significant. Many younger women with this disorder feel psychological effects due to the possibility of not being able to have kids. Not all patients carry this same sentiment. Growing numbers of people do not want to have children. However, for those who do, these thoughts and emotions about fertility can be devastating. Then, endometriosis patients who do conceive often worry about the pregnancy and subsequent delivery of the baby.

How Endometriosis and Fertility are Connected

The association between endometriosis and infertility is well-established. However, there may be multifactorial reasons why it occurs, including molecular, mechanical, environmental, and genetic causes.

There are some theories to explain infertility in endometriosis. The following are just a few:

Inflammation leads to the production of chemicals known as cytokines. These cytokines can inhibit the egg and sperm from meeting each other, which makes fertilization more difficult.
Endometriosis-related scarring and adhesions can block the fallopian tubes or uterus space. This blockage makes it difficult for the sperm to meet the egg and implant in the endometrium.
Endometriosis lesions on the ovaries can inhibit ovulation and block the release of an egg.

Other Data on Endometriosis and Reproduction

Studies have also demonstrated that the enzyme, Aromatase may also play a role in endometriosis infertility. There is an abnormally high level of this enzyme in the endometrium and endometriosis lesions in patients with endometriosis. In the uterus, this enzyme may affect both natural endometrial development and its receptivity for the implantation of the fetus.

Progesterone is another hormone that may play a role in implantation failure. Resistance to this enzyme can affect reproduction, as it is necessary for a normal pregnancy. In some studies, progesterone receptors displayed abnormalities and caused dysregulation in the endometrial layer of the uterus in patients with endometriosis. Levels of progesterone should increase with pregnancy, but with endometriosis, this process is delayed and can cause an unopposed estrogen state that cannot sustain fertility.

Endometriosis Infertility Treatment Options

Patients with endometriosis do have a substantial risk of infertility or problems getting pregnant. According to studies, the amount of endometrial-like tissue visible during a laparoscopy correlates with the possibility of future fertility. For this reason, if you have endometriosis and would like to become pregnant, early treatments for endo and fertility are crucial. This is because the stage of endo might progress within time, which increases the risk of infertility.

Laparoscopy: A Common Treatment for Endometriosis

Can endometriosis cause infertility? Yes, in some patients. However, in most cases, endo does not entirely prevent conception. Traditional treatments for endometriosis approached most cases of endo with total hysterectomies. But these approaches are now outdated. New science-based evidence shows that hysterectomies and oophorectomies are not always needed. That is because these surgeries do not often work to remove all the endometriosis tissue.

A skilled endometriosis specialist goes in the pelvic and abdomen with thin tubes and excises the endometrial-like tissue for best surgery results. This surgery often requires OB-GYN surgeons with advanced training in endometriosis treatment. It typically involves advanced surgical equipment, such as laparoscopy, robotics, and AI technology.

Now let’s review the endometriosis treatment options in the context of pregnancy and fertility.

Medical Treatment Options for Endometriosis

Ovarian suppression, such as hormonal therapies or oral contraceptives, is not recommended for women who wish to conceive. This highly-debated advice gained support from a large study that found no difference in pregnancy rates and live birth rates in patients with endometriosis who took a hormone vs. placebo.
An endometriosis diet by nutritionists that work on endo can be helpful. The diet can help increase the patient’s likelihood to conceive with endometriosis and maintain that pregnancy to a full-term birth.
The Guideline Development Group (GDG) does not recommend the prescription of adjunctive hormonal treatment before surgery in infertile women with endo.

Surgical Treatment Options for Endometriosis

The goals of surgery are to remove all macroscopic endometriosis implants and return the pelvic cavity to normal anatomy. While these are the goals, not all surgical procedures or endometriosis specialists will stop this inflammatory disorder or restore the pelvic cavity to its normal anatomy.
It’s crucial to weigh the pros and cons of surgical intervention.
Endometriosis minimal invasive surgery by an expert is the preferred surgical procedure because:
- It causes minimal damage to the tissue.
- It’s assisted with magnification.
- There is a relatively fast recovery time.
- Mostly only a short hospital stay is involved.

How Women with Endometriosis Suffer Emotional Impact

Women who deal with endometriosis reproductive problems may experience a variety of feelings, such as:

Stress
Worry
Grief
Confusion
Anger
Sadness
Feelings of inadequacy

As mentioned above, over 30% of women with fertility problems have endometriosis. If a woman is already distressed about becoming pregnant, the shock of an endometriosis diagnosis may amplify those emotions.

Furthermore, women with endometriosis may feel further pressure to have kids sooner to increase their likelihood of success. But, that’s not always practical. Some do not have a partner or might not even know if they want to have kids. Perhaps they are with someone who does not wish to or is not ready for kids. They might also be with someone they have not been with for very long, so they are unsure if they want children. Many factors can cause stress on women with endo to try to get pregnant right away.

For those ready and trying to get pregnant, fertility issues caused by endometriosis may also create feelings of frustration, hopelessness, and sadness. These feelings are the reasons why it’s crucial to incorporate a mental health expert as part of your holistic endometriosis treatment team.

Psychological Impact of Fertility Treatment for Endo Patients

Furthermore, a whole new slew of emotions comes with those patients who move on to endometriosis fertility treatment. Excitement. Happiness. Disappointment. Sadness. You and your partner can do these things to help prepare for these possible feelings:

Prepare and be ready for the emotional journey ahead
Cope with grief and loss associated with unsuccessful prior attempts or miscarriages
Develop strategies for coping with the news of other people’s births and pregnancies
Keep the communication lines between you and your partner open and discuss feelings throughout the entire process

Did endometriosis cause infertility issues for you? How has that impacted your life?

3 years ago Endometriosis , Endometriosis Education , Endometriosis Specialist No comment

Find Endometriosis Specialists for the Best Possible Outcomes

Why You Need an OB-GYN Who Specializes in Endometriosis

Endometriosis is common (affecting nearly 190 million women worldwide) but poorly understood by many medical professionals. It’s hard to find endometriosis specialists who have completed advanced training. With the proper endo specialist, medical treatment or surgery can lessen your pain, improve your quality of life, and manage complications.

Endometriosis is a chronic pain condition that affects 10-15% of women of reproductive age. It causes painful periods, bleeding between periods, pain during sexual intercourse, and discomfort when passing urine or feces. Despite causing chronic pelvic pain, many medical professionals have a poor understanding of the condition.

In this article, we will look into what endometriosis is and explore how to improve diagnosis, treatment, and outcome factors.

What is Endometriosis?

Endometriosis affects menstruating women and girls and some women post-hysterectomy or post-menopause. The condition also can affect transgender men and non-binary individuals. Endometriosis affects roughly 190 million people worldwide, with immune, genetic and hormonal factors all likely to be at play.

To understand Endometriosis, we first need to understand the endometrium or lining of the uterus.

The Endometrium

A large proportion of the endometrium is stromal cells. Stromal cells regulate cell growth and change during the menstrual cycle.

Endometrial glands line the endometrium. During the menstrual cycle, they widen in response to greater blood flow.

Each cycle, stromal cells, and endometrial glands slough off as part of menstruation.

Endometriosis Lesions

The presence of endometrium-like cells found outside the uterus causes the classic endometriosis symptoms. Discourse exists, but scientists have concluded a genetic basis to the cells’ presence, with endometrium-like cells migrating inappropriately during embryogenesis.

Endometriotic lesions can be in the ovaries, uterine ligaments, fallopian tubes, and pouch of Douglas (the space between the uterus and rectum). In some, lesions are present outside the pelvic cavity. Locations include the bowel, urinary tract wall, diaphragm, lungs, abdomen, and pericardium (the sack around the heart).

The endometrial-like tissue responds to the natural cycle of hormones and also produces some hormones by itself. This tissue has cycles of growth and bleeding.

Whereas menstrual blood in the uterus leaves the body via the vagina, the blood and tissues cannot escape from endometriosis lesions. This trapped cells and tissue leads to the painful processes of inflammation, adhesions, and scarring.

What does it feel like to have Endometriosis?

Although pain is the most common complaint, Endometriosis causes a wide range of symptoms, including:

Painful periods
Heavy periods (menorrhagia)
Vaginal bleeding between periods
Pain on passing urine or feces
Bowel symptoms include bloating, constipation, diarrhea, or bleeding from the bowel
Pain during intercourse
Tiredness
Depression
Infertility.

Severe pain can interrupt daily life for many patients. This interruption may include missing school, taking days off work, or being unable to socialize. A study in 2020 found that in over half of women, the pain had reduced their professional, physical, and sexual activity.

Endometriosis is associated with low mood. 15% of women are diagnosed with depression, with an average age at diagnosis of 22.

Infertility

Infertility can be the only symptom of Endometriosis for some women. Around 30-50% of patients cannot get pregnant owing to inflammation, pelvic adhesions, blockage of the fallopian tubes, and changes to the pelvic anatomy.

Other Symptoms

Additional symptoms are dependent on the location of endometriosis lesions. For example, an endometriotic lesion in the lung could cause breathlessness or chest pain. A study of over 2000 patients found that endometriotic nodules caused leg and buttock pain, as well as numbness, similar to sciatic pain.

Misdiagnosis and incorrect management are therefore common for women with symptoms that are not classic to pelvic endometriotic lesions.

Endometriosis Myths

The average delay in the diagnosis of Endometriosis is more than seven years, leading to “unnecessary suffering and reduced quality of life.” This delay leads many people to the internet to conduct their own research before and during diagnosis. However, the internet is awash with myths.

The importance of educating yourself via a reputable source such as iCareBetter cannot be understated.

Find Endometriosis Specialists for Appropriate Diagnosis & Treatment

The widespread misunderstanding of Endometriosis hinders its diagnosis and treatment. The inappropriate investigation, treatment with analgesics, or hormonal suppression do little to manage the cause while delaying diagnosis. Women who felt they were not listened to nor understood by doctors have described frustration, anger, annoyance, and sadness.

Reassuringly, appropriate diagnosis and treatment can lead to significant improvements in pain. This is precisely why it is crucial to find an endometriosis specialist. Only highly specialized surgeons with a comprehensive team can perform a thorough excision to remove endometriotic lesions, including extra-pelvic locations. Complete removal can significantly improve overall outcomes, including relief from pain and increased quality of life.

iCareBetter Endometriosis Care

iCareBetter is a platform that connects patients with experts in endometriosis care. At iCareBetter, patients have access to surgeons who have completed advanced training. These professionals have shown expertise in the diagnosis and treatment of complex Endometriosis. iCareBetter utilizes a transparent and unbiased system to ensure that only doctors with proven advanced excision skills and a comprehensive care team can be on their surgeons’ list.

Patients can select their surgeon based on their specific symptoms. This empowers patients to consult a doctor who truly understands the complexity of their condition. Patients can access specialists for endometriosis in the pelvis, bowels, bladder, thorax, heart, or diaphragm. They also can find help with infertility issues.

A highly specialized endo surgeon will take a holistic approach to treatment. This holistic approach includes managing secondary comorbidities such as infertility, even in stage III and IV disease patients.

At iCareBetter, patients can also access expert physical therapists who understand the condition. Working with a physical therapist gives access to myofascial release techniques, visceral mobilization, and the tools to manage a susceptible nervous system for better pain management.

Team-based expert care improves post-operative outcomes. For some iCareBetter doctors, post-treatment reports of satisfactory pain relief could be over 80%, with less than 20% of women requiring subsequent pelvic surgery. Moreover, many patients see reduced pain relief requirements post-recovery.

Standards of excellence, such as those endorsed by iCareBetter, must become a driving force behind treatment protocols for Endometriosis. Women should no longer shoulder the pain and reduced quality of life associated with substandard care.

Conclusion

Endometriosis occurs due to the presence of endometrium-like cells found outside the uterus. The resulting inflammation, adhesions, and scarring can cause severe pain and symptoms related to the location of the lesions. By connecting patients with expert surgeons in endometriosis care, iCareBetter empowers patients to access the care leading to better outcomes. Advanced surgical excision, physical therapy, and an expert team-based approach can reduce pain, as well as skillfully manage secondary complications.
Find endometriosis specialists today.

3 years ago Endometriosis Education , Endometriosis Physical Therapy No comment

Questions to Ask Your Physical Therapist When you have endometriosis

Author: Dr. Rebecca Patton, PT, DPT

“I feel like you’re the first physical therapist who understands endo.” It’s a statement I wish I didn’t hear as often as I do. Unfortunately, there has not been a resource specifically made to evaluate pelvic physical therapists’ knowledge about endometriosis before iCareBetter.

Education for physical therapists regarding endometriosis needs more advanced continuing education courses. But it doesn’t typically happen until after completing a doctoral program. For perspective, I self-taught for several years before seeking specific classes related to endometriosis care. Therefore, it wasn’t until years after specializing in pelvic pain treatment that I realized the inefficiency of care for those with endometriosis. We can do better, but we have a long way to go.

Communicating with a pelvic physical therapist before seeking treatment can allow you to ask important questions to ensure you’re finding a provider that is a good fit for you. For achieving this goal, take advantage of time-saving strategies such as a phone consultation before committing to a therapist. Here are a few questions you may want to ask during that phone consultation or the first visit with a pelvic physical therapist for your endometriosis issues.

Endometriosis Care Process with iCareBetter

1- Find an expert based on keyword/ specialty or state
2- choose your doctor from the list
3- Get the contact info
4- First call and consultation.
5- Get info regarding costs and care process
6- Receive care

Top endometriosis physical therapists

Endometriosis Physical Therapy

Table of contents

1. Are you familiar with the disease process and current treatment standards for endometriosis?

2. Do they consider the whole body when treating your symptoms?

3. Do they practice trauma-informed care specifically related to healthcare trauma?

4- How much time will you have for a session?

References

1. Are you familiar with the disease process and current treatment standards for endometriosis?

It is helpful when your treating therapist is up to date on current treatment standards, as with any diagnosis. Unfortunately, there is no specific physical therapy protocol for treating patients with endometriosis. However, physical therapists should understand who will be involved in your healthcare team and have a multidisciplinary approach (1). I aim to establish what provider, either GYN or expert surgeon, will be a point of contact on that first visit.

2. Do they consider the whole body when treating your symptoms?

Endometriosis is known as a pelvic disease, but we know it is much more than that. Your physical therapist needs to tap into their education to evaluate and treat the whole body. The secondary effect of endo is often an upregulated nervous system. On the initial visit, it is typical that your physical therapist will look at movement patterns from your neck to your feet. Internal pelvic floor assessments are common but certainly do not need to happen on the first visit. Pelvic floor function is only one component in a much larger picture of your overall function. Your individual goals and comfort will dictate how much treatment involves pelvic floor treatment.

Advanced Treatments and education

Treatment involving the abdominal wall fascia, diaphragm, and viscera (organs) require additional advanced coursework compared to treating the pelvic floor. Therefore, you can ask them if they have taken additional coursework to treat the abdomen to get an idea of their experience. There is not one single treatment philosophy for the abdomen, but some courses focus on continuing education in this area. The most common that I am familiar with are The Barral Institute (2), Ramona Horton MPT, DPT (3), and Institute of Physical Art (4). Other courses involve manual nerve techniques such as Lumbar and Sacral Nerve Manual Assessment through the Herman and Wallace Pelvic Rehab Institute (5). These are just a few of the many available resources your physical therapist may use to learn more after graduate school. Some pelvic physical therapists create their treatment tanks to teach one another these skillsets.

Treatment strategies that help regulate an upregulated nervous system may be part of your care. These strategies can look like gentle hands-on treatment, questions to help you process how you relate to your body, and creating mindfulness along with movement. The connection of how our nervous system interprets information from our body is complex. A physical therapist can be a valuable resource to help you better understand the pain response and the nervous system.

Trauma-informed care in physical therapy does not substitute mental health treatment. A trauma-informed approach concerning physical therapy means understanding the entirety of the patient’s experience and the effects of that experience. Medical trauma can have a lasting response on an individual’s well-being (6). We know that those with endo, on average, have a delayed diagnosis. This delay can lead to a complicated relationship with the medical providers. Many patients with endo are seeking out pelvic PT after years of seeing various specialists. These experiences with the medical system can create barriers to a patient feeling comfortable with a new provider.

For this reason, a trauma-informed approach to treatment is essential. Awareness of how these experiences may have impacted their patient is a critical portion of providing affirming care. You can ask your physical therapist about some processes that they use to create a safe environment. These processes should include consent before any treatment or touching, checking in with your emotions and body reaction during manual therapy, and providing adequate time to provide education throughout the session.

4. How much time will you have for a session?

Asking this question can ensure you have an idea of what to expect when going into your appointment. There is no magic number of minutes that will create a perfect appointment. However, the nature of endo being more complex means I prefer more time to establish a care plan. There are multiple factors to consider during the first evaluation. These factors include sexual health, daily function, bowel and bladder health, and personal goals. Having realistic expectations for each session is helpful to decrease additional medical trauma and find a therapist that fits your needs.

Patient care and human interaction are complex, and sometimes it takes time to establish a level of comfort with your PT. Every session of PT may not equal a breakthrough in pain. Retraining the nervous system takes time, especially when the body has been protecting itself due to chronic pain.

Ultimately, endo care is ideally a multidisciplinary approach. Your physical therapist can work closely with your gynecologist and other healthcare team members to find the best individual plan for you.

If you have more questions about pelvic physical therapy, reach out for more information.

Would you mind sharing with us what pleasant or unpleasant experiences you have had with your PT?

References:

1. Agarwal SK, Foster WG, Groessl EJ. Rethinking endometriosis care: applying the chronic care model via a multidisciplinary program for the care of women with endometriosis. Int J Womens Health. 2019;11:405-410. Published 2019 Jul 23. doi:10.2147/IJWH.S207373

2. Jean-Pierre Barral, DO, MRO(F), RPT. The Barral Institute. Accessed September 1^st,2021. https://www.barralinstitute.com/

3. Ramona Horton, MPT, DPT. Herman and Wallace Pelvic Rehabilitation Institute. Accessed August 27^th, 2021. https://hermanwallace.com/faculty/ramona-horton

4. Institute of Physical Art. 2015-2021. Accessed August 19^th, 2021. https://instituteofphysicalart.com/

5. Nari Clemmons PT, PRPC. Herman and Wallace Pelvic Rehabilitation Institute. Accessed August 20^th, 2021. https://hermanwallace.com/faculty/nari-clemons6. Michelle Flaum Hall and Scott E. Hall. When Treatment Becomes Trauma: Defining, Preventing, and Transforming Medical Trauma. American Counseling Association. March 24^th, 2013. Accessed August 19^th, 2021. https://www.counseling.org/knowledge-center/vistas/by-year2/vistas-2013/docs/default-source/vistas/when-treatment-becomes-trauma-defining-preventing-

3 years ago Endometriosis , Endometriosis Education , Endometriosis Specialist No comment

7 Ways to Prepare For First Endometriosis Specialist Appointment

Diagnosis. Treatment. Surgery. Many Topics May Be Discussed At Your Visit

An endometriosis specialist appointment is not something you do every day (although sometimes it might feel like all day while you’re waiting there). However, the time you get to talk with the doctor may be pretty short. During that moment of consultation with the endometriosis (endo) specialist, you might feel brain fogged or bombarded. Whether it’s the diagnosis, treatment, surgery, pain management, or an endometriosis symptom you want to bring up, it’s easy to forget an essential topic while you’re there.

To make the most out of your initial endometriosis specialist appointment with an endometriosis specialist, we’ve made a list of seven ways you can prepare for the visit. First, we will give a short description of what endometriosis is.

Table of contents

What’s Endometriosis?

Why You Are Here

7 Ways to Prepare for Endometriosis Specialist Appointment

Endometriosis Care Process with iCareBetter

What’s Endometriosis?

Endometriosis is a female medical disorder in which tissue similar to the endometrium (tissue that lines the walls of the uterus) grows outside the uterus. This endometriosis tissue can grow on the surface of the uterus, ovaries, intestines, fallopian tubes, bladder, or other organs in the body.

During menstruation, this tissue releases blood, and it sloughs off. However, this blood and tissue often remain trapped with no way to escape the body. This increased pressure can result in moderate to severe pain, among other symptoms. If you want to learn more about endometriosis and get a general background on the condition, read our article, “Endometriosis 101: Covering the Basics.”

Why You Are Here

People of various ages and demographics are subject to this often debilitating inflammatory pelvic disorder. Whether you have confirmed the diagnosis of endometriosis or if you need surgery to verify its presence and remove lesions – these suggestions can help you prepare for the endometriosis specialist appointment. There are many stages of endometriosis. Whether you’ve got into a specialist early on your journey or later, the important thing is that you are here now – exploring treatment options.

7 Ways to Prepare for Endometriosis Specialist Appointment

Once you have found an experienced endometriosis specialist, it’s essential to prepare yourself for the doctor’s appointment ahead of time. There is no concrete test to diagnose endometriosis (outside of surgery). Therefore, it’s imperative to have a solid understanding of the signs and symptoms of endo and detailed accounts of your own experience ready. Simple things such as medical records or journals that list all your endometriosis symptoms are a vital arsenal that will help you and your doctor determine your treatment plan.

1. Gather Your Records.

Unfortunately, most people with endometriosis have had many doctor appointments before seeing an endometriosis specialist. Therefore, you should have some medical records for them to review during your first appointment with an endo specialist. Gather everything from your regular medical history from your general practitioner to your OB/GYN records, testing, imaging, blood work, etc. Even if you think the particular doctor appointment or medical history is insignificant, you might be surprised by the various conditions linked to endometriosis. Bring it all. This information could play a vital role in your endometriosis treatment.

2. Keep a Journal of Endometriosis Symptoms/Pain.

Write down all the possible endo signs and symptoms you’ve had leading up to the doctor’s appointment. If you get a visit scheduled, and it’s a couple of weeks out, start the journal at that time, but also include the signs and symptoms you’ve experienced leading up to that point. Then, from that date until your appointment, write down all the different types of symptoms you experience. Include everything, even if you don’t think it’s relevant, like colds, headaches, stomach issues, shortness of breath, chest pain, etc. Also, be sure to include your emotions and feelings because endometriosis can significantly impact mental health and can lead to conditions such as depression and anxiety. Emotions and mental health are essential as you might want to include a counselor as part of your holistic endometriosis treatment team.

3. Bring This Printable Guide.

At endometriosis.org, they’ve created a convenient guide that can help you describe your symptoms and know what to ask your endometriosis specialist. Click here for the PDF. Please print it out and answer all the questions. Bring this with you to your doctor’s appointment to help specifically describe your endometriosis pain and other symptoms.

4. Take All Your Medications With You.

The importance of this cannot be understated. Even if you have a medication reconciliation (also known as a “med rec” for short) from your doctor, it’s important to realize those are not always up-to-date with everything you take. This inconsistency is especially true if you are on medications from multiple specialists or take supplements as well. The best way for your endo specialist to have a complete picture of all the medicines you are currently taking is by bringing them with you to the doctor’s appointment. You should include any supplements or over-the-counter medications. Bring in the physical bottles along with any medication history records.

5. Prepare Yourself Mentally.

Go into the appointment with the bold mindset that you will ask every single question you have to gain clarity on your endometriosis diagnosis and treatment options. Endometriosis is an aggressive inflammatory disorder that can have a devastating impact on your quality of life. It would help if you carried an even more aggressive attitude toward trying to stop it dead in its tracks.

6. Bring a List of Questions.

What’s been bothering you the most? Pain? Bowel symptoms? Bring a list of all the important questions that you want answers to. Writing them down will help you not forget during the appointment. Furthermore, when the doctor sees you have a list of questions you want answers to, it makes it harder for them to get up and walk out of the room like the appointment is over. If something like that has ever happened to you, we are sorry you’ve experienced this. That’s why it’s crucial to find a vetted endometriosis expert.

7. Take a Support Person With You.

Finding a good endo expert is no easy task (unless you use iCareBetter to connect you to one). If you are the type of person who is a bit shy or feels intimidated, you should bring your best support person to the appointment with you. Even if you are not nervous about your first endometriosis specialist appointment, having someone you trust by your side can help you process the information and encourage you along your journey. If no one you would like to accompany you, consider bringing a recorder and taping the visit. Because this can help you go back later and make sure you’ve understood all the information. Most doctors will have no qualms about recording your visit.

Endometriosis Care Process with iCareBetter

We Want to Hear From You

Have you been to an endometriosis specialist (OB-GYN experienced in endo)? If so, is there anything you wished you would have done differently? If you’ve not been to an endo specialist yet, what is your biggest concern about the first doctor visit?

3 years ago Endometriosis , Endometriosis Education , Endometriosis Specialist 9 comments

Endometriosis Specialist and Doctor for Diagnosis, Treatment, & Surgery

Why It’s Important Your OB-GYN Specializes in Endometriosis?

When it comes to the treatment and management of endometriosis pain and/or other symptoms, all doctors are not the same. In fact, if you have or suspect you might have endometriosis, you should never just walk into the office of a random obstetrics/gynecology (OB-GYN) surgeon.

However, it can be a bit tricky to find an endometriosis specialist that is highly skilled and follows the best treatment practices for this disorder. If you want to learn more about endometriosis, read this article that gives an introduction to the condition, signs and symptoms, causes, complications, and treatments.

With so many myths about endometriosis (endo) – it’s important to separate facts from fiction. Arm yourself with research and a solid foundation of knowledge to help you simplify the process and to get in touch with a trusted endometriosis specialist. Keep reading to find out why it’s so important to use an endo expert, red flags that your doctor/surgeon is not the right fit, and how to find an endometriosis specialist near you.

Join endometriosis forum or Instagram page and discover endometriosis stories & discussions

This article will cover:

What is an Endometriosis Specialist?
How are Endo Specialists Different than Typical Gynecologists?
The Role of Endometriosis Specialists in Treatment
Finding the Right Doctor for Endometriosis Treatment
Considerations When Looking for an Endometriosis Specialist
Red Flags About a Potential Endometriosis “Expert”
How Can I Find an Endometriosis Specialist Near Me?

What is an Endometriosis Specialist ?

Doctors with extensive experience in treating and caring for patients with this condition are known as endometriosis specialists. They are typically obstetricians and gynecologists (OB/GYNs), which are doctors who treat female pelvic organs, reproductive issues, and deliver babies. Therefore, most endometriosis specialist are also skilled surgeons.

How are Endometriosis Specialist Different than Typical Gynecologists ?

Practitioners who specialize in endo care mostly for patients with endometriosis. From surgical treatment to medical management, their guidance is unparalleled to that of a gynecologist who serves general patients. You find endometriosis specialist at large teaching hospitals, medical centers, and private practices with gynecological surgeons.

The Role of Endometriosis Excision Specialist in Treatment

The right specialist will have extensive knowledge of this disorder and the additional surgical training and skills it takes to effectively treat endo and the related conditions. Furthermore, the endo doctor should also have experience with modern techniques and access to state-of-the-art equipment – which often includes robotic or laparoscopic surgical tools. Additionally, openness to complementary treatments and a thorough understanding of various treatments are some other advantages of choosing an endometriosis expert and not just a regular OBGYN.

Patients report the most important thing about a surgeon is that they take their time and carefully listen to you. A good surgeon will pay attention when you speak and not challenge your knowledge or experience.

Finding the Right Doctors Who Specialize in Endometriosis

Endometriosis is a painful disorder that affects up to 10% of women. It is caused by cells similar to those in the lining of the uterus growing outside of it, leading to pain and other symptoms such as fatigue, heavy menstrual cycles, and infertility. As endometriosis can be challenging to diagnose and treat, finding the right doctor for your condition is essential for successful treatment. When selecting a doctor for endometriosis treatment, let’s look at what you should consider.

Types of Doctors

When looking for a doctor to treat your endometriosis, consider seeing an experienced OB-GYN or a Reproductive Endocrinologist (RE) specializing in treating fertility problems. An expert OB-GYN can provide surgical options, general care for your reproductive health, and address any issues related to your pain. They may also be able to refer you to an RE if they believe further testing or treatments are necessary.

An RE specializes in diagnosing and treating difficulties with fertility, including endometriosis. They have received specialized training in reproductive medicine, making them uniquely qualified to diagnose and treat endometriosis. Seeing an RE may help you get a more accurate diagnosis and provide access to treatments such as hormone therapy or surgery that can relieve the symptoms of endometriosis and achieve fertility.

Qualities To Look For

When selecting a doctor for endometriosis treatment, there are certain qualities that you should look for to ensure that you are getting the best care possible. Your doctor should have experience treating endometriosis, understand the physical and psychological aspects of living with this condition, and provide comprehensive care from diagnosis through treatment options and follow-up visits.

Choosing the right doctor for your endometriosis treatment is essential for successfully managing this chronic disorder. When selecting a physician, make sure they have experience treating this condition and understand both its physical and psychological components so they can provide comprehensive care from diagnosis through follow-up visits. By doing so, you can ensure that you receive appropriate care explicitly tailored to your needs and get relief from your symptoms to lead a healthier life.

Considerations When Looking for an Endometriosis Specialist

Your endometriosis specialist will be a teammate with the common goal of getting you to living your best life. Ask a lot of questions and listen to the answers. Here are some considerations when looking for an endometriosis expert near you:

Does the doctor have experience with various medical conditions related to endometriosis?
Does the doctor specialize in the treatment of adult or adolescent endometriosis? Or both?
Is the doctor receptive to your information and input? What is their attitude towards your healthcare treatment?
Does the doctor rush you through assessments and questions, or do they take their time?
Does the doctor speak to you in terms you understand? (This is particularly important during the explanation of tests and/or surgical procedures.)
What is the doctor’s belief on the use of hormonal therapies? Do they have medical justifications for prescribing them? Can they tell you the pros and cons of these options?
Do you feel comfortable speaking with the doctor? Endometriosis pain and symptoms can be hard to discuss, so it’s important you feel at ease.
Does the doctor work in cooperation with other professionals to offer holistic treatment, (i.e. physical therapists, pain specialists, psychotherapists, gastroenterologists, etc.)?

Red Flags About a Potential Endometriosis Expert

It’s important that you pick an expert who knows what they’re doing to support you. Unfortunately, there are a lot of myths surrounding surgical best practices when it comes to endo treatment. What’s even worse is that some of these options could result in infertility or other issues, and not even address the underlying endometriosis condition.

The following are red flags that could indicate the doctor you are speaking with is not a trusted endometriosis specialist:

Red Flags

If the doctor views hysterectomy as a definitive treatment. Caution any doctor who says removing your uterus/ovaries will cure you. While this may be the correct course for some patients, it’s not a cure-all solution as endo lesions can affect other body parts and endo tissue could continue to grow.
If the doctor says endo symptoms will go away with menopause. In medically, naturally, and surgically-induced menopause – there are women who have endometriosis afterward.
If the doctor says mild stages of endometriosis won’t cause infertility. This is just false. “Mild” or “minimal” stages of endo can still produce significant symptoms, including those that impact fertility.
If the doctor says that negative tests rule out an endo diagnosis. Tests such as labs, ultrasound, or magnetic resonance imaging (MRI) can help with diagnosing and staging endometriosis, but they cannot rule it out. Technology has advanced, and transvaginal ultrasound can help in assessing and staging endometriosis, however, it cannot rule out the diagnosis. Same is true for MRIs and laboratory studies.
Hormone therapy will cure endometriosis. Studies show that hormonal medications can help temporarily reduce endometrial lesions, but they do not cure the disease.
If the doctor suggests that recurring endometriosis cannot be treated.
If the doctor tells you that you are too young to have endometriosis. This belief is completely false. In fact, there are adolescents who had chronic pelvic pain that were diagnosed with deep infiltrating endometriosis (DIE).
If the doctor suggests it’s only irritating bowel syndrome (IBS). Many symptoms of endometriosis and IBS overlap. As such, this is often a misdiagnosis given to people who in fact are suffering from endometriosis. Please notice that this doesn’t mean that the patient doesn’t also have IBS in conjunction with endo.

How Can I Find an Endometriosis Specialist Near Me ?

Now that you’ve read more about the importance and what to look for in an endometriosis specialist, are you ready to connect with someone in your area? At iCareBetter, our passion is to connect patients with vetted endo specialists. Go to the directory to learn how we can help you get on the road to health and improve your quality of life.

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3 years ago Endometriosis , Endometriosis Education , Endometriosis Physical Therapy No comment

Physical Therapy Before Excision Surgery for Endometriosis

Endometriosis can cause multiple issues for patients. And it can create the need for a multidisciplinary care team to address chronic pelvic pain. Physical therapy is one example of part of a multidisciplinary treatment plan for endometriosis symptoms. Guest writer Rebecca Patton, PT, DPT, discusses considerations for using physical therapy while awaiting excision surgery:

Pelvic physical therapy has gained more following and prompted much-needed discussions in recent years. However, pelvic physical therapy looks quite different for someone with chronic pelvic pain and endometriosis.

The reality is that pelvic physical therapists may be the first line of defense to refer a patient to a specialist. First, because we have direct access, meaning a patient can see us for an evaluation before seeing a physician. Second, because symptoms of endometriosis are often missed or dismissed by referring providers. In the latter case, someone may be referred to physical therapy before excision surgery or even before seeing an endo specialist.

Physical therapists can optimize care by helping a patient get to a specialist while providing physical therapy treatment.

If we are seeking to provide the best care available for the treatment of endo, getting a faster diagnosis and referring a patient to an excision specialist is the primary goal. With a thorough medical history including bowel and bladder habits, menstrual symptoms, pelvic pain symptoms, previous treatment, and understanding the patient’s experience, a pelvic physical therapist can create a differential diagnosis list that may include endometriosis. If endometriosis is suspected, a referral to an excision specialist should be given to the patient and explained.

Endo specialists’ wait times vary greatly depending on where you are located.

In my personal experience in Phoenix, AZ, a large metropolitan area with several specialists, it takes anywhere from 3-12 months. More time if we are in the middle of a global pandemic. Decreased access in rural areas may also increase waiting times. One positive change is the inclusion of virtual appointments which may improve access for those in rural areas.

During the waiting period, the goal is to manage pain and maintain some regularity with bowel and bladder habits until excision surgery. Internal pelvic floor retraining may or may not be appropriate during this time.

As mentioned before, physical therapy before excision surgery is going to look different from treatments for other conditions. As a patient, you want to ensure the physical therapist you are seeing treats patients with endo regularly. You may want to consult with them prior about how often they treat patients with endo and what treatments they use specifically. Additional coursework for visceral and abdominal manual therapy techniques, nerve mobilization, and myofascial therapy techniques will be helpful.

Most studies research the effectiveness of physical therapy following excision surgery. What about physical therapy before excision surgery?

Zhao et al. (1) found that 12 weeks of PMR (progressive muscle relaxation) training is effective in improving anxiety, depression, and quality of life of endometriosis patients under GnRH agonist therapy. These participants had not received excision surgery.

Awad et al. (2) found improvements in posture and pain with an 8-week regular exercise program in those diagnosed with mild to moderate endometriosis. This exercise program included posture awareness, diaphragm breathing, muscle relaxation techniques, lower back and hip stretches, and walking. Of note, this exercise program was not vigorous exercise. These participants were also receiving hormonal treatment but not receiving pain medication.

Both studies did not say that physical exercise or PMR plays a role in the prevention of the occurrence or progression of endometriosis. Both studies were short-term (8-12 weeks) and did not explore pain management directly before excision or outcomes after excision.

In the time that a patient is waiting for excision surgery, I believe physical therapy treatment can be effective at minimizing overall pain levels and improving quality of life.

A few factors to keep in mind if you are seeking pelvic physical therapy before excision surgery:

1. Your symptoms after physical therapy should not last more than 1-2 days and should feel manageable. Being bedridden for a week after physical therapy is not a helpful treatment. If you experience this, be sure to communicate it with your physical therapist to adjust the plan. Not all pelvic PTs are experienced with this type of treatment and they may create an exercise plan that is too vigorous.

2. Internal pelvic floor treatment is not always the most helpful in this situation and may exacerbate symptoms. An individualized plan is important to discuss with your provider.

3. You are in charge of your body. If you don’t feel like treatment is working then communicate that to your team and discuss other options. It is always okay to voice your concerns to change the treatment to fit you best.

4. Treatment before surgery requires a multidisciplinary team. This may include other pain management options including medication.

iCareBetter is doing the groundwork to vet pelvic physical therapists.

Rebecca Patton PT, DPT (If you are seeking a pelvic PT, I accept consultations through my website for in person and telehealth appointments: https://www.pattonpelvichealth.com/)

For more resources on physical therapy for endometriosis see: https://nancysnookendo.com/learning-library/treatment/lessons/physical-therapy-resources/

References

Zhao L, Wu H, Zhou X, et al.: Effects of progressive muscular relaxation training on anxiety, depression and quality of life of endometriosis patients under gonadotrophin-releasing hormone agonist therapy. Eur J Obstet Gynecol Reprod Biol, 2012, 162: 211–215. [PubMed] [Google Scholar]

Awad E, Ahmed HAH, Yousef A, Abbas R. Efficacy of exercise on pelvic pain and posture associated with endometriosis: within subject design. J Phys Ther Sci. 2017;29(12):2112-2115. doi:10.1589/jpts.29.2112 [N CBI]

Tags Archives: endometriosis experts

About Endometriosis

Understanding Ureteral Endometriosis

The Kidney-Endometriosis Connection

Symptoms of Kidney Endometriosis

Diagnosis of Kidney Endometriosis

Treatment Options

The Silent Threat of Kidney Failure

Impact on Kidney Health

Conclusion

What is Bowel Endometriosis?

How Common is Bowel Endometriosis?

Recognizing the Symptoms

Diagnosing Bowel Endometriosis

Treating Bowel Endometriosis: An Overview

Surgical Treatment Options

Understanding the Risks of Surgery

Hormone Treatment Options

Managing Symptoms and Quality of Life

Conclusion

Bowel Problems

What is Endometriosis?

Understanding Bowel Endometriosis

Symptoms of Bowel Endometriosis

Causes of Bowel Endometriosis

The Prevalence of Endometriosis

Diagnosing Bowel Endometriosis

Treating Bowel Endometriosis

The Prognosis for Bowel Endometriosis

About iCareBetter

Vision

Mission

What happened in 2023?

What To Expect in 2024

Understanding Endometriosis Treatment Confusion

Key Guidelines reviewed in the most recent publication were:

Summary Review of Treatment Recommendations

Surgery

Medical Management of Endometriosis

Complementary Therapies

Determining Your Needs in a Surgeon

Training and Experience

Surgical Support Team

Approach to Excision

Post-Surgery Care

Costs

Comfort Level

Factors That May Not Influence Your Decision

Factors That Might Influence Your Decision

The Most Important Factor

Leading Endometriosis Specialists

Managing Your Relationship with Your Current Doctor

Conclusion

Learn More About the Connections Between Endometriosis and Infertility

What is Endometriosis?

What Happens When Endometriosis Does Cause Infertility

How Endometriosis and Fertility are Connected

Other Data on Endometriosis and Reproduction

Endometriosis Infertility Treatment Options

Medical Treatment Options for Endometriosis

Surgical Treatment Options for Endometriosis

How Women with Endometriosis Suffer Emotional Impact

Psychological Impact of Fertility Treatment for Endo Patients

Why You Need an OB-GYN Who Specializes in Endometriosis

What is Endometriosis?

The Endometrium

Endometriosis Lesions

What does it feel like to have Endometriosis?

Social and Emotional Effects

Infertility

Other Symptoms

Endometriosis Myths

Find Endometriosis Specialists for Appropriate Diagnosis & Treatment

iCareBetter Endometriosis Care

Conclusion

1. Are you familiar with the disease process and current treatment standards for endometriosis?

2. Do they consider the whole body when treating your symptoms?

Advanced Treatments and education

3. Do they practice trauma-informed care specifically related to healthcare trauma?

4. How much time will you have for a session?