Category Archives: Endometriosis Education

image

Endometriosis Dictionary:

Endometriosis is a disease that affects at least one in ten women and produces pain and subfertility.  The pain can be related to the menstrual cycle or be related to specific activities like pain during and after sex.  Pain medications may help quality of life but the diagnosis of endometriosis and effective treatment is rooted in surgical excision and some hormone therapy, which may be mainstream or integrative or holistic in some cases.  There is a lexicon of terms that comes with understanding endometriosis including the following: 

TermDefinitionPhonetic Spelling
Abdominal Cavity
The space within the abdomen that houses the intestines, liver, and other organs.
/ab·doh·mi·nuhl kav·i·tee/
AblationThe removal or destruction of tissue using heat, laser, or other methods./uh·blay·shun/
AdhesionsBands of scar tissue that bind organs together./ad·hee·zhuhnz/
AdenomyosisA condition in which endometrial-like tissue exists within and grows into the uterine muscle wall./ad·uh·noh·my·oh·sis/
AmenorrheaThe absence of menstruation./ay·men·uh·ree·uh/
AnalgesicA medication that reduces or eliminates pain./an·uhl·jee·zik/
AnovulationThe absence of ovulation./an·ov·yuh·lay·shun/
Aromatase InhibitorsDrugs that inhibit the enzyme aromatase, reducing estrogen levels./uh·roh·muh·tayz in·hib·i·terz/
BiopsyA medical test involving the extraction of sample cells or tissues for examination./bye·op·see/
Bilateral OophorectomySurgical removal of both ovaries./bye·lat·uh·ruhl oh·uh·fuh·rek·tuh·mee/
Catamenial PneumothoraxA rare condition where air leaks into the space between the lungs and chest wall during menstruation./kat·uh·mee·nee·uhl noo·moh·thor·aks/
CervixThe lower part of the uterus that opens into the vagina./sur·viks/
Chocolate CystOvarian cysts filled with old blood, also known as endometriomas./chaw·klit sist/
CO2 LaserA laser used in surgical procedures to cut or vaporize tissue./see·oh·too lay·zer/
Cul-de-sacThe area between the uterus and the rectum where endometriosis commonly occurs./kull·duh·sak/
Deep Infiltrating Endometriosis (DIE)Severe form of endometriosis that invades deeper tissues./deep in·fil·tray·ting en·doh·mee·tree·oh·sis/
DyscheziaPainful bowel movements, often associated with endometriosis./dis·kee·zee·uh/
DysmenorrheaPainful menstruation./dis·men·uh·ree·uh/
DyspareuniaPainful intercourse./dis·puh·roo·nee·uh/
EndocrinologistA doctor who specializes in the endocrine system, which regulates hormones./en·doh·kri·nah·luh·jist/
EndometriomaA type of cyst formed when endometrial-like tissue grows in the ovaries./en·do·me·tree·oh·muh/
Endometriotic LesionsAreas of endometrial-like tissue growth outside the uterus./en·doh·mee·tree·ot·ik lee·zhunz/
EndometriumThe inner lining of the uterus that thickens and sheds during the menstrual cycle./en·do·mee·tree·um/
EndometriosisA condition where tissue similar to the lining inside the uterus grows outside it./en·do·mee·tree·oh·sis/
Endovaginal UltrasoundAn ultrasound test performed via the vagina to get a closer look at the reproductive organs./en·doh·vaj·in·uhl ul·truh·sownd/
EstrogenA hormone that plays a key role in the development of female reproductive tissues and secondary sexual characteristics./es·truh·jen/
Excision SurgeryA surgical procedure to cut out endometriosis tissue./ek·si·zhun sur·juh·ree/
Fallopian TubesTubes that carry eggs from the ovaries to the uterus./fuh·loh·pee·uhn toobs/
Follicle-Stimulating Hormone (FSH)A hormone involved in the development of eggs in women and sperm in men./fol·i·kul stim·yuh·lay·ting hor·mohn/
GonadotropinHormones that stimulate the activity of the gonads (ovaries and testes)./goh·nad·oh·troh·pin/
Gonadotropin-releasing Hormone (GnRH) Agonists/Antagonists Drugs that reduce estrogen production by affecting the pituitary gland./goh·nad·oh·troh·pin ree·lees·ing hor·mohn ag·oh·nist/
Hormone Replacement Therapy (HRT)A treatment used to relieve symptoms of menopause by replenishing estrogen and progesterone./hor·mohn ree·plays·muhnt thair·uh·pee/
HysterectomySurgical removal of the uterus./his·tuh·rek·tuh·mee/
HysterosalpingographyAn X-ray procedure to examine the inside of the uterus and fallopian tubes./his·ter·oh·sal·pin·goh·grah·fee/
ImplantationThe process by which a fertilized egg attaches to the lining of the uterus./im·plan·tay·shun/
In Vitro Fertilization (IVF)A procedure in which eggs are fertilized by sperm outside the body and then implanted in the uterus./in vee·troh fur·tuh·luh·zay·shun/
InfertilityThe inability to conceive after one year of unprotected intercourse./in·fur·til·i·tee/
Interstitial CystitisA chronic bladder condition causing bladder pain and frequent, urgent urination./in·ter·stish·uhl si·sty·tis/
LaparoscopyA surgical procedure involving small incisions and the use of a camera to diagnose or treat conditions./lap·uh·ros·kuh·pee/
LaparotomyA surgical procedure involving a large incision through the abdominal wall to gain access to the abdominal cavity./lap·uh·rot·uh·mee/
Laparoscopic ExcisionA minimally invasive surgical technique used to remove endometriosis lesions./lap·uh·roh·skop·ik ek·si·zhun/
LupronA medication used to treat endometriosis by suppressing estrogen production./loo·pron/
MenarcheThe first occurrence of menstruation./men·ahr·kee/
MenopauseThe time in a woman’s life when menstrual periods permanently stop./men·uh·pawz/
MenorrhagiaHeavy menstrual bleeding./men·uh·ray·jee·uh/
MyometriumThe muscular layer of the uterine wall./my·oh·mee·tree·um/
NeurectomySurgical removal of a nerve or part of a nerve./noo·rek·tuh·mee/
OophorectomySurgical removal of one or both ovaries./oh·uh·fuh·rek·tuh·mee/
Oral ContraceptivesBirth control pills that contain hormones to prevent pregnancy./awr·uhl kon·truh·sep·tivz/
Ovarian CystA fluid-filled sac within the ovary./oh·vair·ee·uhn sist/
OvaryThe female reproductive organ that produces eggs and hormones./oh·vuh·ree/
Pelvic Floor DysfunctionA condition where the muscles and tissues supporting the pelvic organs are weakened./pel·vik flawr dis·funk·shun/
Pelvic Inflammatory Disease (PID)Infection of the female reproductive organs./pel·vik in·flam·uh·tor·ee dih·zeez/
PeritoneumThe membrane lining the abdominal cavity and covering the abdominal and pelvic organs./per·i·toh·nee·um/
ProgesteroneA hormone involved in the menstrual cycle, pregnancy, and embryogenesis./proh·jes·tuh·rohn/
ProgestinsSynthetic hormones similar to progesterone./proh·jes·tinz/
Rectovaginal SeptumThe tissue between the rectum and the vagina./rek·toh·vaj·in·uhl sep·tuhm/
Reproductive EndocrinologistA doctor who specializes in reproductive hormones and fertility issues./ree·proh·duk·tiv en·doh·kri·nah·luh·jist/
ResectionSurgical removal of part of an organ or structure./ri·sek·shun/
Retrograde MenstruationThe backward flow of menstrual blood into the pelvic cavity./re·troh·grayd men·stroo·ay·shun/
Retroverted UterusA uterus that tilts backward instead of forward./reh·troh·vur·tid yoo·tuh·rus/

Robotic Surgery

Salpingectomy

Minimally invasive laparoscopic surgery enhanced by robotic tech
Surgical removal of one or both fallopian tubes.
/roh·bot·tick sir·jury/
SonohysterographyAn ultrasound procedure to examine the inside of the uterus./soh·noh·his·ter·oh·grah·fee/
SubfertilityReduced level of fertility characterized by unusually long time to conceive./sub·fur·til·i·tee/
Transabdominal UltrasoundAn ultrasound test performed through the abdomen./tranz·ab·doh·mi·nuhl ul·truh·sownd/
TranscervicalThrough the cervix./tranz·sur·vik·uhl/
Transvaginal UltrasoundAn imaging test using sound waves to look at the reproductive organs./tranz·vuh·jy·nuhl ul·truh·sownd/
UltrasoundAn imaging method that uses high-frequency sound waves to capture live images from inside the body./uhl·truh·sownd/
Uterine FibroidsNoncancerous growths in the uterus./yoo·ter·in fye·broidz/
UterusThe organ in the female reproductive system where a fetus develops./yoo·tuh·rus/
Vaginal AtrophyThinning, drying, and inflammation of the vaginal walls due to decreased estrogen./vaj·in·uhl at·ruh·fee/
VaginismusInvoluntary muscle spasms in the pelvic floor muscles./vaj·in·iz·muhs/
VulvodyniaChronic pain or discomfort around the opening of the vagina./vuhl·voh·din·ee·uh/

Updated Post: July 16, 2024

image

Why was iCareBetter Built?

A message from Dr. Saeid Gholami, the founder and CEO at iCareBetter:

The Story Behind the Movement

When I used to practice as a primary care doctor, I saw patients’ struggles to find doctors that could do proper endometriosis surgery. Endometriosis patients often came back to our clinic month after month without change in their pain and suffering. Many patients had multiple failed surgeries. That was because almost all gynecologists claimed expertise in endometriosis surgery. Unfortunately, patients could not differentiate truly skilled gynecologists from others for treating endometriosis. One specific patient that I still think of after a decade was a thirty-five years old lady with rectal bleeding during her periods. I recall her coming back every month until everyone believed she was seeking attention. And no one could help her. We tried hard to find endometriosis surgeons for the patients, but no doctor would be able to show enough knowledge and expertise to earn our trust. Some of them claimed endometriosis expertise, but after a couple of questions, we realized that they could not manage the complexity of this disease.

Someone needs to stand up and build a solution when there is a problem. That is how the world has improved since the beginning of humanity. And it was our turn to make something to enhance the world of endometriosis patients. We created iCareBetter to help patients find doctors who possess the knowledge and surgical skills needed for endometriosis treatment. iCareBetter makes the search for endometriosis doctors much more effortless and removes the randomness of finding an endometriosis specialist. By having a platform of peer-vetted endometriosis surgeons, patients can focus on finding a doctor that will match their criteria and personal needs. Criteria such as location, cost, team, and areas of expertise can define a patient’s path to recovery. And patients do not have to worry about the doctor’s basic understanding, empathy, and skills of endometriosis care.

Searching for an endometriosis surgeon is very hard. Most of the time, you have no idea about their surgical skills and whether they will be able to treat your case. iCareBetter evaluates gynecology surgeons for their skills in managing different types and locations of endometriosis. Their surgical expertise is peer vetted, so their ability to do safe surgery. We bring endometriosis specialists closer to patients. 

What is iCareBetter’s mission? 

To help endometriosis patients receive efficient care. To educate patients on endometriosis, to better understand endometriosis and patient’s needs. Patients wait years to receive a diagnosis, are sent to various specialties, and undergo multiple surgeries, and very few people take their pain seriously. iCareBetter mission is to improve endometriosis patients’ lives by providing them with what is needed the most; doctors that can handle each individual’s unique case.

Who is behind iCareBetter? 

I, Dr. Saeid Gholami, am the founder of iCareBetter. I have training as an MD, MBA, and MS in Digital Technology. My training is not in OBGYN, and at the moment, I do not provide care to patients. I founded iCareBetter with my financial resources and then had some family and friends invest in the company to support us. None of the investors are related to the current doctors on the website. And none of the doctors on the website have any ownership or leadership position in the company.

Last words

Like every other life-changing initiative, ours started with a personal story and someone who wanted to make a change. My personal goal has been to improve patients’ lives at the minimum cost for them. And we are just at the beginning of the road. There are many patients with endometriosis who need help. And we have several problems to solve for the patients and the community. Nothing will stop us as long as endometriosis patients use iCareBetter to find hope and care for their debilitating pain and suffering.

image

What Are The Cost Drivers For Running iCareBetter?

From the beginning of iCareBetter, money has always been questioned. Some think iCareBetter should offer services for free to providers because it costs nothing. But there is a high administration cost for running iCareBetter. The charges come from educating patients and providers about endometriosis and quality of care, maintaining and improving the website, and responding to patients’ and providers’ requests and questions. I am going to share our costs with you in this article.

The costs for operating iCareBetter:

Education About Endometriosis and the Importance of Expert Provider

It takes an average of 10 years for a person with endometriosis to get a proper diagnosis. Then several years go by, trying various hormones, artificial menopause, and suboptimal surgeries. After many years and multiple failed treatments, a patient might find an expert who understands endometriosis and how to treat it. We at iCareBetter want to cut that time to less than a year and help patients connect with the expert endometriosis provider as soon as possible. Achieving this goal requires extraordinary efforts in educating the public, patients, and providers. Therefore, we are responsible for making educational content and distributing it on the internet. Content creation and distribution are crucial for raising awareness about endometriosis, the importance of skilled surgery, and fighting misinformation. And it costs money and takes significant effort to create and distribute good educational content about endometriosis.

Reviewing Doctors’ Applications 

iCareBetter takes a significant financial loss on each application; please continue reading for more explanation. After we receive an application with three full surgical videos (mostly between 2-4 hours long), our team has to de-identify all documents and prepare the videos and questionnaire for reviewers. It takes 5-10 hours per application, costing us about $500 on average to prepare the application for review. Then we send the videos and the rest of the applications to reviewers and follow up with them multiple times to submit their reviews. After the reviewers send their reviews, they get compensated for their time. Compensating the reviewers cost us, on average, $350 per application. Therefore on each application, we spend $850 and only charge $400. Consequently, we lose $450 on reviewing each application.

Website Maintenance, APIs, and Optimization

iCareBetter has an online website core to its services to patients and providers. Providers use the website to apply for vetting. Patients use search engines and many other features on the website to find doctors and learn about endometriosis. Almost all of these features are paid plugins, apps, or APIs. Moreover, there is a sophisticated web developing team behind iCareBetter to deliver the results to our community. Keeping a high-quality website that serves patients and providers with high standards is costly.

Answering Questions from Patients and Providers

Every day our team receives many questions and inquiries from patients, advocates, and providers. It is our responsibility to answer them. Here are some examples:

  • Patients: 

“Do you have a doctor in region X?”

“Does doctor Y accept new patients?”

“I can not get someone from Dr. Y’s office to answer me, has their phone number changed?”

“Why does the link to this article is broken?”

  • Doctors:

“How can I join the platform?”

“I am changing my office location; please update my info.”

“I want to apply for more specialized surgery areas. How can I do that?”

Every question we receive from a patient or a doctor is our top priority. These questions can define the care plan or the surgery outcome for one or more patients. So we are committed to answering these questions. And answering questions needs the time and focus of a reliable person. And this is another layer of costs added.

Final Words

The list of costs does not stop here, but I hope you have seen enough information to justify our desire to make money to keep iCareBetter alive. It costs to run a website that aims to be patient-centric, uplifts the community, and brings transparency to the endometriosis community for a better patient outcome.

Please let us know what you think about this matter.

image

Pelvic floor dysfunction

Another condition that can have overlapping symptoms with endometriosis is pelvic floor dysfunction (PFD). PFD involves abnormal functioning of the pelvic floor muscles (Grimes & Stratton, 2020). The muscles can be too tight (hypertonia), too lax (hypotonia), or just not coordinate appropriately (Grimes & Stratton, 2020). Fraga et al. (2021) reports that those with deep infiltrating endometriosis (DIE) had higher pelvic floor hypertonia, weaker muscle contraction, and inability to completely relax the pelvic floor muscles. They also noted shortening of the anterior thigh, piriformis, and iliotibial band muscles (Fraga et al., 2021). PFD can be seen frequently in those with endometriosis “even after surgical excision of the endometriosis lesions” (Hunt, 2019).

Shrikhande (2020) reports:

“The presence of endometriosis in the pelvis can cause a secondary chronic guarding of pelvic floor musculature. This chronic guarding state leads to nonrelaxing pelvic floor dysfunction and myofascial trigger points (MTrPs)…. The pelvic floor muscles in nonrelaxing pelvic floor dysfunction are short, spastic, weaker and poorly coordinated…. Myofascial trigger points (MTrPs) are short contracted taut bands of skeletal muscle that often co-exist with nonrelaxing pelvic floor dysfunction… Once formed, MTrPs can become a self-sustaining source of pain even after the endometriosis has been excised. Active MTrPs serve as a source of ongoing nociception; they can decrease pain thresholds, upregulate visceral and referred pain patterns, and sensitize the nervous system contributing to both peripheral and central sensitization. Therefore, it is important to treat a hypertonic nonrelaxing pelvic floor and associated MTrPs in endometriosis patients.”

For more information see: https://icarebetter.com/pelvic-floor-dysfunction

References

Fraga, M. V., Oliveira Brito, L. G., Yela, D. A., de Mira, T. A., & Benetti‐Pinto, C. L. (2021). Pelvic floor muscle dysfunctions in women with deep infiltrative endometriosis: An underestimated association. International Journal of Clinical Practice75(8), e14350. DOI: 10.1111/ijcp.14350

Grimes, W. R., & Stratton, M. (2020). Pelvic floor dysfunction. https://www.ncbi.nlm.nih.gov/books/NBK559246/

Hunt, J. B. (2019). Pelvic Physical Therapy for Chronic Pain and Dysfunction Following Laparoscopic Excision of Endometriosis: Case Report. Internet Journal of Allied Health Sciences and Practice17(3), 10. Retrieved from https://nsuworks.nova.edu/cgi/viewcontent.cgi?article=1684&context=ijahsp 

Shrikhande, A. A. (2020). The consideration of endometriosis in women with persistent gastrointestinal symptoms and a novel neuromusculoskeletal treatment approach. Archives of Gastroenterology Research1(3). https://www.scientificarchives.com/article/the-consideration-of-endometriosis-in-women-with-persistent-gastrointestinal-symptoms-and-a-novel-neuromusculoskeletal-treatment-approach

image

Physical Therapy After Excision Surgery

Why do You Get a Referral for Physical Therapy After Excision Surgery?

  • Endometriosis is a chronic condition and it takes almost 10 years to diagnose the condition in most cases. 
  • The women suffer from severe pain and disability before they are really diagnosed with endometriosis. Pain leads to muscle guarding and spasms which leads to further limitation in mobility and function.
  • Muscle guarding can also affect fascial mobility. Fascia covers our body from head to toe, it covers the muscles and organs and connects muscle to muscle and muscle to organ. Any fascial restrictions can affect the mobility of the organ and body and also function.
  • Decreased mobility can affect the circulation and lymphatic draining. Many women present with blood stasis and swelling of pelvic region- vulva, discoloration and sometimes itching.
  • Some women with endometriosis can present with the descend of a small intestine between uterus and rectum and it pushes the wall of vagina, it is called “enterocele”.
  • Surgery can lead to scar tissue and muscle guarding which can affect the normal biomechanical movement. 
  • Many women have pain and pelvic floor dysfunction after surgery which can affect the function.

How does Fascial Mobility Affect the Pelvic Floor Function?

pelvic floor function
  • Facia lines from Amygornall.com
  • The abdominal fascial restrictions from guarding can affect the mobility of the fascia of the large and small intestine. Scar tissue after surgery can also affect the abdominal fascial mobility.
endometriosis excision surgery
  • This is image is taken from Grey’s Anatomy
  • The restrictions of the fascia around cecum (ascending colon on right side) and sigmoid colon (descending colon on left side) can affect bowel movement- many women have constipation, diarrhea, pain after bowel movement, bloating, and food intolerance. Constipation is defined as 
  1. Small palates, hard stools, straining
  2. Not able to empty bowels completely
  3. Less than 3 spontaneous bowel movements a week
  4. The patient has to do manual maneuver to pass the stool
  5. Straining with stools can lead to pelvic floor dysfunction and increase the risk of prolapse
  6. Bristol stool scale helps to understand the consistency of stool and relation to constipation. As if you have bowel movement everyday does not mean you are not constipated. Bristol stool scale 1-2 is considered as constipation, 3-4 is considered as normal bowel movement as long as the person is not straining while doing bowel movement, 5-7 is considered as diarrhea
endometriosis excision surgery

The restrictions of fascia around the bladder can cause

pelvic parts

The image is taken from Grey’s Anatomy

  1. Increase in urinary urgency and frequency
  2. Bladder fascia shares the fascia with pelvic floor through urethra and it can cause stress/urge or both urinary incontinence.
  3. Bladder fascia also shares the fascia with obturator foramen where obturator internus muscle attaches. Obturator internus muscle is one of the major rotator muscles of the hip. Restrictions of bladder fascia can affect the mobility/mechanics of the hip and also can cause pain. Many women with hip pain without any pathology might have a connection to the bladder fascia. They always have one of the bladder symptoms such as urgency/frequency/burning of urination or incontinence.
  • Anatomically small intestine sits on the bladder. The small intestine moves up and allows the bladder to fill. If the fascial mobility of the small intestine is limited or if the small intestine has descended, the bladder does not get enough room to fill and that leads to increase in urgency and frequency.
pelvic floor
  • The image is taken from Sloan Kettering Institute – research 
  • The diaphragm and pelvic floor work as a piston during the breathing. When we breathe in, the diaphragm moves down along with the pelvic floor and when we breathe out they both move up. Breathing mechanics is very important for pressure mechanics- that means it provides stability, keeps the organ continence, pelvic floor function, lymphatic draining, and reduces the strain on joints. The factors can affect the breathing mechanics
  1. Abdominal fascial restrictions
  2. Shallow breathing from pain
  3. Decreased mobility of fascia of diaphragm/pelvic floor
  • The image is taken from Grey’s Anatomy
  • The restriction of fascia can affect the circulation and lymphatic drainage. Many women have pelvic congestion and also swelling of vulva and itching.

How can Physical Therapy help?

Goals of Physical Therapy are

  • Reduction of pain
  • Improve posture
  • Improve mobility of muscle/fascia and organ to improve biomechanics and movement of the body
  • Improve circulation and lymphatic drainage

The Physical Therapist have to perform detailed evaluation on fascial mobility, joint mechanics, muscle guarding pattern, posture, any swelling or signs of congestion, bowel and bladder function, sexual function, pelvic floor muscle function, lumbar spine/sacroiliac joint mobility and stability, breathing mechanics, load transfer, and central sensatization. I have found great success with fascia mobilization on abdomen/chest wall/diaphragm, and around the abdominal organ/pelvic floor muscles to reduce pain, improve mobility, circulation, breathing mechanics, bowel/bladder function and overall well being.

About the author

The author of this article, Neha Golwala, PT, DPT  is a vetted endometriosis physical therapist. With more than 10 years of experience, she works at Zuppa Physical Therapy P.C. in New York. Neha uses manual therapy techniques including myofascial release, joint mobs, and neurominetic energy. She is an expert in the development of posture awareness and connecting mind to body to recover from injuries and prevent injuries and improve performance.

image

Pelvic Congestion Syndrome- another cause of chronic pelvic pain

When talking about endometriosis and chronic pelvic pain, it is important to remember that often endometriosis is not the only pelvic pain generator. Another possible contributor to chronic pelvic pain is pelvic congestion syndrome (PCS). “Pelvic congestion syndrome (PCS) accounts for up to 30% of patients presenting with chronic pelvic pain” (Reardon & Dillavou, 2021). There isn’t a significant amount of data about endometriosis and PCS, but one study found “the prevalence of ovarian varices in patients with endometriosis was 80%, whereas the control group was only 26.1%” (Pacheco & de Oliveira, 2016).

PCS is like having varicose veins in the pelvis. Blood pulls in the veins and can cause symptoms such as heaviness, pain with penetration, noncyclical pain, positional lower back pain, pelvic and upper thigh pain, prolonged postcoital discomfort, symptoms that worsen throughout the day and are exacerbated by activity or prolonged standing, and non-specific lower abdominal and pelvic pain (Durham & Machan, 2013; Mistry & le Roux, 2017). The cause of PCS is not clear, but it is associated with obstructions such as iliac vein compression (i.e., MTS) or left renal vein compression (i.e., Nutcracker syndrome) (Reardon & Dillavou, 2021).

For more information see: https://icarebetter.com/pelvic-congestion-syndrome/

References

Durham, J. D., & Machan, L. (2013, December). Pelvic congestion syndrome. In Seminars in interventional radiology (Vol. 30, No. 04, pp. 372-380). Thieme Medical Publishers. Retrieved from https://www.thieme-connect.com/products/ejournals/html/10.1055/s-0033-1359731

LIANG, D. E., & Brown, B. (2021). Pelvic congestion syndrome: Are we missing the diagnosis?. The Medical Republic. Retrieved from https://www.sydneyfibroidclinic.com.au/app/uploads/2021/06/PCS-Medical-Republic.pdf

Mistry, P. P., & le Roux, D. A. (2017). Pelvic congestion syndrome (PCS). Practice Perspectives for Venous Disorders, 46. Retrieved from http://www.vascularsociety.co.za/wp-content/uploads/2019/02/VASSA-venous-guidelines-Practice-perspectives-for-venous-disorders-2017.pdf#page=46

Pacheco, K. G., & de Oliveira, M. R. F. (2016). The prevalence of ovarian varices in patients with endometriosis. Annals of Vascular Surgery34, 135-143. https://www.annalsofvascularsurgery.com/article/S0890-5096(16)30232-1/fulltext

Reardon, E. S., & Dillavou, E. D. (2021). Venous disease—What we still do not know. In Vascular Disease in Women (pp. 157-163). Academic Press. https://www.sciencedirect.com/science/article/pii/B9780128229590000031

image

Fibroids

We have been looking at some of the related conditions that can cause overlapping symptoms with endometriosis. This is important because, if you only treat one condition and not the others, this can lead to continued symptoms and a great deal of discouragement. Another condition with overlapping symptoms with endometriosis is uterine fibroids (leiomyomas).

Fibroids are benign tumors of the smooth muscle cells of the uterus with symptoms that can range from being asymptomatic to having “abnormal uterine bleeding, specifically in terms of heavy and prolonged bleeding” as well as pain with penetration and non-cyclic pelvic pain (Zimmermann et al., 2012). They can also affect fertility and cause urinary dysfunction (Fortin, Flyckt, & Falcone, 2018).

There has not been much research on the correlation between endometriosis and fibroids. One study reports “an incidence of concomitant fibroids and endometriosis ranging between 12 and 20%, based on 2 previously published studies” (Nezhat et al., 2016). A small study that looked at patients with abnormal uterine bleeding found that “of the 208 patients with the presenting chief concern of symptomatic leiomyoma and who underwent surgical therapy, 181 had concomitant diagnoses of leiomyoma and endometriosis” (Nezhat et al., 2016). Another study looking at those with infertility found (by using ultrasound findings) the “diagnosis of fibroids was made in 3.1% of cases, adenomyosis was found in 21.2%, and the co-existence of both uterine disorders with endometriosis was reported in 14.6% of patients” (Capezzuoli et al., 2020). Nezhat et al. (2016) states that “because of the significant overlap of symptoms, it is often difficult to discern which pathology is responsible for the patient’s complaints” and recommends “a high level of suspicion for endometriosis before and during surgery in these women, with the goal of treating both pathologies in a single surgery.”

For more information see: https://icarebetter.com/fibroids/

References

Capezzuoli, T., Vannuccini, S., Fantappiè, G., Orlandi, G., Rizzello, F., Coccia, M. E., & Petraglia, F. (2020). Ultrasound findings in infertile women with endometriosis: evidence of concomitant uterine disorders. Gynecological Endocrinology36(9), 808-812. https://doi.org/10.1080/09513590.2020.1736027

Fortin, C., Flyckt, R., & Falcone, T. (2018). Alternatives to hysterectomy: the burden of fibroids and the quality of life. Best Practice & Research Clinical Obstetrics & Gynaecology46, 31-42. https://www.sciencedirect.com/science/article/abs/pii/S1521693417301487

Nezhat, C., Li, A., Abed, S., Balassiano, E., Soliemannjad, R., Nezhat, A., … & Nezhat, F. (2016). Strong association between endometriosis and symptomatic leiomyomas. JSLS: Journal of the Society of Laparoendoscopic Surgeons20(3). https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5019190/

Zimmermann, A., Bernuit, D., Gerlinger, C., Schaefers, M., & Geppert, K. (2012). Prevalence, symptoms and management of uterine fibroids: an international internet-based survey of 21,746 women. BMC women’s health12(1), 1-11. https://link.springer.com/article/10.1186/1472-6874-12-6

image

Endometrial Polyps

The last couple of weeks, we have seen that adenomyosis and interstitial cystitis are found frequently in those with endometriosis and can cause similar symptoms. Another finding noted in those with endometriosis is endometrial (uterine) polyps. One meta-analysis found a significantly higher risk of endometrial polyps (EP) in those with endometriosis (Zheng et al., 2015). These polyps are overgrowths of endometrial glands and stroma (Zheng et al., 2015). While they may not cause any symptoms, they can cause abnormal menstrual bleeding, bleeding between menstrual periods, vaginal bleeding after menopause, and might affect fertility.

Zheng et al. (2015) notes that, like in endometriosis, the expression of estrogen receptors and aromatase (an enzyme that converts androgens to estrogens) is altered in endometrial polyps and can increase the local concentration of estrogen. The authors suggest that “it is important to determine whether patients with endometriosis also have EP and then remove any coexisting EP via hysteroscopy, especially for infertile patients” (Zheng et al., 2015).

For more information on endometrial polyps, see: https://icarebetter.com/endometrial_uterine-polyps/

Reference

Zheng, Q. M., Mao, H. L., Zhao, Y. J., Zhao, J., Wei, X., & Liu, P. S. (2015). Risk of endometrial polyps in women with endometriosis: a meta-analysis. Reproductive biology and endocrinology13(1), 1-9. https://link.springer.com/article/10.1186/s12958-015-0092-2

image

Interstitial cystitis- “evil twin” of endometriosis

Last week, we noted that adenomyosis can frequently coexist in people with endometriosis. Another one of those conditions that can frequently coexist with endometriosis, aptly named the “evil twin” to endometriosis, is interstitial cystitis (IC) (also called painful bladder syndrome). The walls of the bladder become inflamed or irritated, resulting in symptoms similar to a bladder infection, such as urinary urgency and/or frequency, painful urination, and pelvic pain (Al-Shaiji et al., 2021). However, in IC, there is no infection, and the symptoms can often be exacerbated during the time around menses (Al-Shaiji et al., 2021).

Endometriosis and IC can both be found in 80% of people with chronic pelvic pain (Al-Shaiji et al., 2021). Like endometriosis, it can take several years for a diagnosis of IC to be made (Al-Shaiji et al., 2021). It is important to consider this condition when looking at treatments for chronic pelvic pain. Al-Shaiji et al. (2021) reports that “up to 25%–40% of patients who undergo hysterectomy as a treatment of CPP will continue to have pain postoperatively.”  Al-Shaiji et al. (2021) also cites another study that discovered that “IC was found in 79% of the patients” who had persistent pelvic pain after a hysterectomy (who were subsequently treated for IC and had improvements in their symptoms). Al-Shaiji et al. (2021) concluded that it is important to look beyond endometriosis as the only cause of a person’s pelvic pain, especially if previous treatments have been ineffective.

For more information on IC, see: https://icarebetter.com/interstitial-cystitis_bladder-pain-syndrome-by-susan-pierce-richards/

Reference

Al-Shaiji, T. F., Alshammaa, D. H., Al-Mansouri, M. M., & Al-Terki, A. E. (2021). Association of endometriosis with interstitial cystitis in chronic pelvic pain syndrome: Short narrative on prevalence, diagnostic limitations, and clinical implications. Qatar Medical Journal2021(3), 50. https://doi.org/10.5339/qmj.2021.50

image

Adenomyosis- sister to endometriosis

Endometriosis is often found along with other conditions that can cause similar symptoms (see Related Conditions). One of those conditions is called adenomyosis, where endometrial glands and stroma invade the muscular part of the uterine wall (Gracia et al., 2022). Vannuccini and Petraglia  (2019) report that “adenomyosis and endometriosis share a number of features, so that for many years adenomyosis has been called endometriosis interna,” but the authors go on to point out that “nevertheless, they are considered two different entities.” Adenomyosis is found in those with endometriosis anywhere from 20-80% of the time (Vannuccini & Petraglia, 2019)!

Both conditions share similar symptoms, such as painful periods and abnormal uterine bleeding. This is important to keep in mind when looking at treatment options as it has been seen that “after surgical treatment…pelvic pain and abnormal uterine bleeding (AUB) were significantly more likely to persist with the presence of adenomyosis” (Gracia et al., 2022). Vannuccini and Petraglia  (2019)  also found this- noting that “on ultrasound pre-operative assessment, 47.8% of patients undergoing surgery for [deep infiltrating endometriosis] were affected by adenomyosis, and in those affected by both conditions, the surgical treatment was not as effective in treating pain as it was in those with only endometriosis.” The ability to diagnose adenomyosis with magnetic resonance imaging and/or transvaginal ultrasound (versus only after a hysterectomy) has made it easier to plan prior to surgery and adjust expectations.  

When looking at treating chronic pelvic pain, it is important to note that endometriosis often coexists with several other conditions that can cause similar symptoms. These other conditions, if left untreated, can continue to cause symptoms, which can lead to a great deal of discouragement if you are not aware.

For more information on adenomyosis, see: https://icarebetter.com/adenomyosis/

References

Vannuccini, S., & Petraglia, F. (2019). Recent advances in understanding and managing adenomyosis. F1000Research8. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6419978/

Loring, M., Chen, T. Y., & Isaacson, K. B. (2021). A Systematic review of adenomyosis: It is time to reassess what we thought we knew about the disease. Journal of minimally invasive gynecology28(3), 644-655. https://www.sciencedirect.com/science/article/pii/S1553465020311006

Gracia, M., de Guirior, C., Valdés-Bango, M., Rius, M., Ros, C., Matas, I., … & Carmona, F. (2022). Adenomyosis is an independent risk factor for complications in deep endometriosis laparoscopic surgery. Scientific Reports12(1), 1-8. https://www.nature.com/articles/s41598-022-11179-8

image

Teens with endometriosis

Endometriosis in adolescents was recently reviewed by Liakopoulou et al. (2022), and they report that “adolescent endometriosis is a challenging diagnosis” and that “the disease can be easily overlooked”- thus the true incidence of endometriosis in teens is not really known. The diagnosis in teens is often delayed which “can lead to suffering for several years.” The authors state that “consequently, early diagnosis appears to be of upmost importance, especially as far as adolescents and young patients are concerned, as it can optimize life quality, relief symptomatology, and decrease the negative impact of the disease on future fertility.”

To achieve earlier diagnosis, the authors suggest that “further evaluation should be considered when prolonged use of nonsteroidal anti-inflammatory drugs (NSAIDs) is reported by the patient, there are relatives diagnosed with endometriosis (in cases of frequent absenteeism from everyday activities during menstruation), and estroprogestin contraceptives have been prescribed before the age of 18 years for primary dysmenorrhea treatment.” They report that “ACOG recommends laparoscopy for diagnosing endometriosis in adolescents” and that “diagnostic laparoscopy is indicated if there is no relief after 3–6 months of medical management.” The authors do report that ultrasounds and MRI’s may be utilized, but that normal imaging doesn’t rule out endometriosis. The authors state that “the benefits of laparoscopy do not only include the confirmation of diagnosis, but also the opportunity of intraoperative treatment.” But the ability to identify endometriosis is important as “during laparoscopy, endometriosis may have a variable appearance.” In adolescents, they report that “white, yellow-brown, red-pink lesions, as well as clear shiny vesicular lesions, are more frequent” and are “associated with greater levels of pain.” The authors also advise that “if suspicious lesions are not identified during laparoscopy, random biopsies of the cul-de-sac should be obtained.” The authors also remind us that “most adolescents present with stage I–II disease; however, advanced stage III–IV disease, including ovarian endometriomas, is increasingly diagnosed in adolescents” and that “the stage and location of the lesions do not directly corelate with the severity or frequency of symptoms.”

The authors note that to help with symptom relief “continuous hormonal therapy can be used to suppress menstruation and is considered safe.” But they report that the use of “gonadotropin releasing hormone (GnRH) agonist or antagonist is not recommended in adolescents with chronic pelvic pain and suspected endometriosis, due to potential impact on bone density.” If GnRH agonists are used, they state that the use “cannot exceed short periods of time, as long-term use may lead to bone density loss and potentially affect negatively cardiovascular risk.” They also caution that “GnRH agonists, when administered before surgery, change the macroscopic image of endometriotic lesions, make their visualization harder, and, thus, preclude effective surgical treatment.” They also state that “depot medroxyprogesterone acetate (DMPA) use is limited, due its association with lower bone mineral density” as well.

Reference

Liakopoulou, M. K., Tsarna, E., Eleftheriades, A., Arapaki, A., Toutoudaki, K., & Christopoulos, P. (2022). Medical and Behavioral Aspects of Adolescent Endometriosis: A Review of the Literature. Children9(3), 384. https://www.mdpi.com/2227-9067/9/3/384/htm

image

Endometriosis and early menopause

Is there an association between endometriosis and early menopause? Kulkarni et al. (2022) looked this question and found that there just might be. The authors state that early natural menopause (ENM) is the cessation of ovarian function before age 45 years. They report that endometriomas in particular (and some treatments for them) might affect ovarian reserves which could lead to earlier onset of menopause. The authors also note that the increase in inflammatory markers in the peritoneal fluid of those with endometriosis might affect follicular and ovarian function (thus leading to earlier menopause).

The authors report that “in this large, prospective cohort study, we observed that surgically confirmed endometriosis was associated with a significantly greater risk of ENM.” They noted the highest risk for ENM was among those who never used oral contraceptives (OC) or had never given birth (more ovulations throughout the lifetime that used up the number of oocytes at that were present at birth). The authors further comment that “although a meta-analysis found an association between OC use and later age at natural menopause, a recent discovery in the Nurses’ Health Study II population did not support a clear association between duration of OC use (decreasing lifetime number of ovulatory cycles) and risk for ENM.” In the study performed by Kulkarni et al (2022), they did find that “among participants who never used OCs, endometriosis was associated with a 2-fold greater risk for ENM.” The authors comment that “it is likely that OC use masks menopause, which is important to consider in this analysis particularly because women may use OCs to control endometriosis-associated symptoms.”

In the end, the researchers concluded that “endometriosis may be an important risk factor for ENM, and women with endometriosis, particularly those who are nulliparous and never-users of OCs, may be at a higher risk for a shortened reproductive duration.” Early menopause is important because it has an affect on osteoporosis, cardiovascular health, and other aspects of health.

Reference

Kulkarni, M. T., Shafrir, A., Farland, L. V., Terry, K. L., Whitcomb, B. W., Eliassen, A. H., … & Missmer, S. A. (2022). Association Between Laparoscopically Confirmed Endometriosis and Risk of Early Natural Menopause. JAMA Network Open5(1), e2144391-e2144391. https://jamanetwork.com/journals/jamanetworkopen/article-abstract/2788287

iCareBetter