Endometrioma 101: Understanding Deep Ovarian Endometriosis

Your Guide to Ovarian Endometrioma: Treatment, Symptoms, Doctors, Etc.

Endometrioma (deep ovarian endometriosis) can be difficult to treat due to controversies and challenges surrounding the best approaches, treatment, and diagnosis. Many of these hurdles result from misunderstandings about the condition and underlying disease process – deep ovarian endometriosis.

If you suffer from these ovarian endometriosis lesions, our sincere thoughts go out to you. Often known as “chocolate cysts,” some consider endometriomas as the most severe threat to a woman’s reproductive system (aside from cancerous tumors found in the reproductive tract). Furthermore, these lesions don’t always respond well to medical treatment and can potentially ruin the health of ovarian tissue. This article will help you understand endometrioma, symptoms, and deep ovarian endometriosis treatment.

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Table of contents:

1- What is Endometriomas (Deep Ovarian Endometriosis)? 

2- Recurrence of The Lesions Following Surgery

3- linical Impact of Endometriomas (in Women of Reproductive Age)

4- Major Concerns

5- Treatment and Surgery Options

6- Final Thoughts and Question for Readers

What is Endometriomas (Deep Ovarian Endometriosis)? 

Endometriomas happen when endometrial-like tissue grows inside the ovary or sometimes outside. Endometrioma is very common and affects between 17-44% of endo patients. Endometriomas are typically an advanced form of endometriosis, meaning stage three or four.

Surgery is often necessary to remove the endometriomas. However, eliminating endometrioma cysts and capsules is an advanced procedure and needs excellent skills. This surgery can potentially lead to partial or complete loss of ovarian function, especially if done by less experienced surgeons. These cystic masses can cause extreme challenges for women undergoing fertility treatments, i.e., assisted reproductive technologies (ART).

Endometriomas are dark-fluid-filled cavities, and they can present in a variety of shapes and sizes. An ultrasound can show suspected cases of endometrioma, but confirmation needs surgery and histology. Therefore, getting a diagnosis of endometrioma can be riddled with challenges.

Recurrence of The Lesions Following Surgery

On our social media accounts, we receive many questions about the topic of endometrioma recurrence. We took to Instagram to get the responses from endometriosis specialists about this recurrence. Here are some of their responses:

“It depends on several factors including the age of the patient, method of surgery, the experience of the surgeon, etc. In the literature, recurrence rates of over 30% have been reported, although I have personally not seen that high of recurrence risk.”

“We’ve had ovarian recurrence rates of less than 10 percent in our two years of follow-ups of about 85 patients with ovarian endometriomas.”

“What’s important is to completely free the ovary and excise the peritoneum or uterosacral ligament it was adherent to, apart from excising the cyst. This will truly help reduce recurrence rates compared to just doing a cyst excision and leaving peritoneal disease behind.”

“I share the same opinion, in my center, our recurrence rate is less than 8% a good technique and excision of all zone of endometrioma even peritoneal improve outcomes, also as previously said it depends on many factors like endometrioma size, multiple endometriomas, and post-op treatment.”

“We have a very low recurrence rate. This is because often, during surgery, only the visible endometrioma cysts are removed. Anything under 2 cm is out of our visual field.”

Clinical Impact of Endometriomas (in Women of Reproductive Age)

Endometriomas does not cause infertility in all women it affects. However, studies show that between 25% to 50% of women with infertility have endometriosis, and 30% to 50% of women with endometriosis have infertility. However, that does not mean that endometrioma will necessarily cause infertility in women of reproductive age, especially when diagnosed and treated early with the best-practice treatments that have evolved over the years. 

One of the leading fertility challenges is that ovarian lesions affect the number of eggs in ovarian tissue. Endometrioma can also impair the maturation of the egg and cause the woman to have a lower antral follicle count (AFC) and Anti-Müllerian hormone (AMH). Also, women with endometriomas often have high follicle-stimulating hormone (FSH) levels.

Major Concerns:

  • Intense pelvic pain
  • Possible infertility
  • Decrease ovarian function
  • It can place women of child-bearing age at a higher risk of cancer

Treatment and Surgery Options

Treatment for endometriomas will vary from person to person. The number of lesions and the staging of the disease progress are just a couple of the factors that will influence the right treatment plan for you. 

Treatment for Females of Reproductive Ages

Many OB-GYNS and other healthcare providers still practice old treatments for endometriosis that don’t effectively manage the disorder. It’s a complicated condition. Thus, there are many myths and misconceptions about endometriosis

Women of reproductive ages who wish to maintain fertility should have a fertility specialist in their multidisciplinary endometriosis team. Women with endometriomas may respond to some of the following treatments: 

Non-surgical treatments: These treatment options are temporary choices to manage pain and complications in the short term.

  • Medication therapy 
  • Observation

Surgical treatment: this may include:

  • Drainage
  • Laser ablation
  • Capsule excision (the procedure of choice for most top experts)

Final Thoughts and Question for Readers

Have you had to deal with endometrioma? If so, please share how it has impacted your endo journey.

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In 2017 I began experiencing strange pains in my lower abdomen and pelvic region which continued on and off for several months. In an attempt to relieve some of my discomfort, I began massaging my abdomen. That was how I discovered a large mass in my abdominopelvic region. Since I’m a surgical tech and have witnessed many open hysterectomies of enlarged, fibrotic uteri, I thought that was likely what I was feeling.

In June of 2018, I went to see a gynecologist. Upon palpating my uterus she told me it felt normal, but, upon my insistence, she sent me for an ultrasound. Within a few hours of getting the ultrasound, I received a call from the gynecologist. It turned out that the large mass was actually my left ovary. It had become so large that it reached all the way into my central lower abdominal region. Concerned that it could be ovarian cancer, I was sent to do a CA-125 blood test, and I spent 6 agonizing days waiting to know the outcome. The results showed elevated ca-125 levels, but well below the levels normally seen with cancer. I was then referred to a gyn oncology surgeon.

During the consultation with my surgeon, she explained, much to my relief, that she may be able to avoid open abdominal surgery in favor of DaVinci robot surgery. She explained that the mass, which measured 15 cm in length, should just fit the largest available specimen retrieval pouch.

On August 7, 2018, I had my surgery. This is when, at the age of 45, I received a diagnosis of endometriosis. In addition to a very large endometrioma that had completely destroyed my left tube and ovary, it was discovered that the scarring and adhesions had done significant damage to my left ureter, resulting in severe chronic hydronephrosis and complete loss of function of my left kidney. I later learned that this is referred to as silent loss of kidney secondary to endometriosis. I still don’t know whether deep infiltration of endometriosis was also involved in the loss of my kidney since I would have to undergo another costly medical procedure that I can’t afford to find out.

Looking back, I now realize there I had exhibited many signs of endometriosis from my teen years on that should have recognized by my providers, yet it was never even suggested to me. Since my diagnosis, I’ve found it exceptionally difficult to find a GYN doctor whose interest or knowledge of endometriosis extends beyond it’s effects on fertility. Why? Women are more than vessels for new life, and it’s far past time we all are provided the same level of care, regardless of our degree of interest in having children.

Thanks for taking the time to read my long-winded comment/rant.

Caroline Lindén

I had a 6 cm endometrioma removed in Sep 2020 (in Sweden).. it caused me horrible pain. A year later it was back, about 2 cm.. I then had a bigger surgery (in Germany) to remove more of the endometriosis and dissolve a lot of adhesions.. the endometrioma was this time jusy drained because of already affected egg reserve. I also had multiple fibroids that was removed.

Am about to TTC, just went off hormonal treatment, afraid the endometrioma will keep growing and the pain will get worse. But mostly afraid I wont get pregnant. I’m 32.

Follow me on instagram: endo.in.sweden

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