Inguinal Hernia & Endometriosis

Inguinal canal in female courtesy of https://www.slideshare.net/vernonpashi/surgical-anatomy-of-the-inguinal-canal

Recently, a study hit my inbox about Endometriosis mimicking an inguinal hernia. So, of course, my interest was piqued and research had to take place! Be warned, though, it’s considered VERY rare. In all the literature I’ve read, only 42 cases have been referenced as being documented inguinal Endo. But when has rarity stopped me from sharing something about Endometriosis? Yeah. Never. Here we go!

What is AN inguinal hernia?

An inguinal hernia is the most common type of hernia (about 70% of hernias are inguinal) and usually manifests as a small lump in the groin area. Both men and women can get inguinal hernias, but it’s apparently more common in men. It occurs if there’s a small hole in your abdominal cavity which allows fat or intestines to seep through, which can a lump or swelling to occur.

What are THE symptoms?

There may be a lump beneath the skin near the groin. Sometimes, the lumps are uncomfortable, but sometimes they cause no pain. And sometimes the lumps disappear when you lay down – the lump can recede back into the abdominal cavity! Sneezing, coughing, or straining may aggravate the hernia.

To make matters even worse: Sometimes there IS NO LUMP; it may just feel weird in the groin area when you walk or stand.

Even if a weird, lower abdominal/groin lump is discovered but isn’t painful, please still go to your doctor for an examination, diagnosis, and treatment. Most often, a hernia can be diagnosed with an easy visit to your physician. Sometimes, imaging studies may be needed, but not often. Doing nothing may lead to further complications or the need for emergency surgery!

What if your doctor HAS found an inguinal hernia? Surgery may be performed to move the intestines/fat/whatever-is-poking-out back to its original position AND close up the tear.

Now…what’s this Endometriosis masquerading as an inguinal hernia business? Let’s find out:

What are the Symptoms of Inguinal Endometriosis?

After reading all of the studies summarized below, here’s what I learned from others’ experiences with inguinal endometriosis:

  • There is usually a lump in the groin area (it could be the left or the right groin)
  • The lump may or may not hurt
  • The lump may or may not hurt more during your period
  • The lump may or may not disappear when you lay down
  • The lump may or may not grow in size during your period
  • The lump did cause leg numbness in one woman

Frustrated? Me, too. Have a lump? Go do you doctor!

How is inguinal Endometriosis diagnosed?

Usually by accident! Actually, in the studies I’ve summarized below: most of the cases of inguinal endometriosis were diagnosed was by accident. A patient went in for surgery to repair an inguinal hernia and found inguinal Endometriosis instead! In a few cases, though, the doctors actually suspected inguinal Endometriosis.

How is Inquinal Endometriosis Treated?

Excision of the mass seems to be the treatment I’ve seen in these studies below. And for most of the women in these studies, their groin pain resolved after the Endometriosis mass was removed, with no recurrence. And, for most, there was no need to go on hormonal treatments after excision.

My thoughts

Again, I cannot stress how rare inguinal Endometriosis is. But I also cannot stress enough: if you have any of these symptoms, never be ashamed to go to your doctor and press for answers! Never, ever, ever. Be your own advocate. And if you need to back your claims up with science, I’ve summarized many studies below and linked to them so you can print them out, too.

SCIENCE!

Following is a list of studies I’ve found about inguinal hernias which turned out to be Endometriosis. Several studies reference that the first case inguinal endometriosis was discovered in 1896! But don’t take my word for it: read on!

During the Prohibition Age, in December of 1921 to be exact, a study was published in the Annals of Surgery of Mrs. E.B., who was 50 years old and and had pain and tenderness in the right inguinal region. She had begun to have pain in that area over 15 years earlier. It varied in intensity over the years. During her periods, the pain worsened and the size of the mass increased. After five successful pregnancies and three miscarriages, a doctor told her a hysterectomy would fix her ongoing pain. She underwent the procedure in 1918, but the pain continued and worsened around the time she would have been menstruating. Fast forward to 1921: The mass also caused her pain there when she coughed so her doctor told her she had an inguinal hernia. Surgery was performed and an inguinal hernia was, indeed, discovered…as was a mass found within the inguinal canal, connected to the rectus sheath. The mass and the attached portion of the rectus sheath were removed and the hernia was repaired. Biopsy showed the mass “contained a thick chocolate-like fluid.” Her diagnosis: “chronic inflammation; transplantation of the endometrium.” Back in the day that meant Endometriosis. And my favorite quote from the study? “…she [Mrs. E.B.] was delighted that her pain was gone.” Wouldn’t you be, too?

In 1945, the Glasgow Medical Journal reported two cases of discovered inguinal Endometriosis:

  1. A 38-year-old housewife developed a swelling along the right side of her groin that was painful. The swelling and pain worsened “when she knocked it against objects in the course of her housework.” The lump hurt more while she was on her period and was about the size of a walnut. It was excised during surgery and was found to be gray with “small, red, fleshy areas” when it was sliced into. Biopsy confirmed Endometriosis and she was symptom-free during an examination two years later.
  2. Another housewife, this one 46-years-old, complained of a swelling in her right groin that occurred after an injury eight years prior (she received “a blow” to the lower abdomen). At that time, her physician fitted her with a sort of hernia belt and diagnosed her with a hernia. Six years of wearing that device seemed to keep the swelling at bay. She stopped wearing it and during the subsequent two years realized the swelling and pain recurred, increasing around her period. The lump was surgically removed and it seemed it had “multiple small brown cysts” and was associated with endometrial tissue. Over a year later she was still pain-free.

Three cases of groin Endometriosis was reported in the March 1949 edition of the British Medical Journal:

  1. Around 1939, a woman noticed a small lump appear in her right groin the day before her period. It was painful and swelled up to nearly the size of an egg and walking made the pain worse. On the last day of her period, it shrank down to the size of a pea. Each subsequent period started with the day before having that painful lump reappear (although it never again was as large as an egg) and it would once more shrink and become less painful as her period ended. In 1941, she complained of the painful lump to her doctors. They could feel the lump in the right groin area and excised it and confirmed the mass to be Endometriosis. She was symptom-free for 18 months, but in July of 1943, the same mass reappeared around her period and was painful. It was directly beneath the scar of her previous incision. Surgery was considered, but they opted to watch and wait. Two months later, her paid had receded and the lump eventually faded. At a 1948 follow-up, she had no recurrent symptoms.
  2. In 1946, a woman was leaning up against a table and became aware of a painful lump in her right groin area. Over a period of two years, it increased in size and pain. It used to only be painful if it was pushed upon, but as time passed it was painful even with no added pressure. A few days before her periods, it would suddenly hurt for no reason (it would worsen more if she was walking uphill or stretched her right leg outward), and that ache would cease once her period started. In 1948, her doctors examined her and found the lump to be near where a femoral hernia would develop. However, they suspected either Endometriosis or a form of Adenomyosis. It was excised and confirmed to be Endometriosis. Three months later, there was no recurrent symptoms.
  3. A 37-year-old woman complained of a three-year history of a cherry-sized lump in her right groin. The last year of that history, the lump had become extremely hard and painful to touch. Sometimes the pain and swelling would increase, and sometimes she had a “prickling” sense near the lump. It didn’t hurt during her periods, but always became painful if it was touched or pushed on during sex. During surgery, they discovered the mass fused to the round ligament in the external inguinal ring. The mass and a portion of the round ligament, were removed and biopsied: the mass oozed dark blood when cut into and was determined to be an Endometrioma. A month later, she had no recurrent symptoms.

In 1958, the American Journal of Obstetrics & Gynecology published an article about two women. Unfortunately, I only have access to the first study: a 34-year-old woman, Mrs. S., complained of a lump in the right groin area for five years. Every month, one day before her period began, the lump would appear. During her period, it would grow to about the size of a walnut and completely disappear within five days of her period ending. It was tender and was “more or less painful.” At the time of their examination, the doctors could not feel the lump. Based on her symptoms, the physicians suspected Endometriosis and performed surgery anyway. A small mass was found connected to her round ligament within a hernial sac. The hernia was repaired, the lump excised, and pathology confirmed it was Endometriosis.

A study published in the Annals of Surgery in 1960 discussed four separate cases of inguinal Endometriosis that occurred at the same hospital:

  1. A 49-year-old woman, the wife of a physician I might add, had a firm, tender inguinal mass for two weeks. She was admitted to the hospital for what they suspected was a hernia. The lump protruded when she stood or coughed, and it magically disappeared when she laid down and didn’t change during her period. Sixteen years prior, she had a cyst removed from her inguinal region (back then they also thought her mass was a hernia). This woman had two prior normal pregnancies and no abnormal menstrual history. Surgery was performed: no hernia was found, just a series of cysts along her round ligament. Pathology confirmed it was Endometriosis and she had no recurrent symptoms at her post-op.
  2. A 34-year-old woman was admitted to the hospital in 1954 for a suspected inguinal hernia. The mass was hard and tender to the touch. Her complaints weren’t related to her period, she never had any children, and she only had a surgery nine years prior for vaginal stenosis. The lump was found and removed from along the round ligament of her deep inguinal ring. Pathology confirmed the mass was Endometriosis. Nine months later, the patient returned to her physician with complaints of pelvic pain, her physician suspected it was Endometriosis, but the patient never followed-up for further care.
  3. In 1946, a 49-year-old woman was admitted to the hospital after she had a mass for eight years in her inguinal area. It had slowly grown over time and was not tender or acted any differently during her period. Surgery was performed and they found a cyst of the round ligament located within the inguinal canal and external ring. The cyst “contained old blood.” Pathology confirmed cystic Endometriosis and she had no recurrent symptoms at follow-up.
  4. A 36-year-old woman who had never had children was admitted to the hospital in 1958. Over the past year, she had a small mass that had grown on the right side of her lower abdomen. During her period, the mass grew slightly larger and created a pinching/cutting pain that would end when her period ended. Pelvic and rectal exams were normal, but her physician did feel the 2-3cm lump when she stood up. In surgery, they found the 3cm mass sticking out of the round ligament, as well as an inguinal hernia which was found separate from the mass. The mass was excised, the hernia was repaired, and pathology confirmed the lump was Endometriosis. She was diagnosed with Endometriosis of the round ligament. Several months later, she was still symptom-free.

In 1977, The American Surgeon published an article of a woman with extraperitoneal endometriosis and states that an Endometriosis diagnosis must be considered if “the groin mass is associated with menstrual variability in size and in tenderness.”

An August 1991 study by Obstetrics and Gynecology followed six women who presented to surgery for inguinal hernias. Each of them ended up having Endometriosis lesions in the extraperitoneal portion of their round ligament (six of seven lesions were discovered on the right side) and each of the women also had Endometriosis discovered within the intraperitoneal areas, too.

In 1999, the Turkish Journal of Medical Sciences published an article about two women who had inguinal Endometriosis:

  1. A 30-year-old woman complained of a lump in her right groin for a year and a half. The lump had grown over time and was painful during her periods. It was less painful, but still hurt, even when she wasn’t on her period. Before surgery, her doctors suspected Endometriosis. After surgery, they confirmed it! No hernia was found. Neither were chocolate cysts. But the mass was located adjacent to the round ligament, was fibrous, and contained Endometriosis tissue scattered throughout it. There was no Endometriosis found within the pelvic cavity. And she was symptom-free 13 months after her surgery.
  2. Similarly, a 29-year-old woman also had a lump on the right side of her groin. She had it for three years, it had grown in size, and was also painful near and on her periods. The ultrasound didn’t show anything useful and a gynecological exam was normal. She underwent surgery and no hernia or chocolate cysts were found. They did find the mass, though, and it was brownish-gray in color. They cut it out and pathology confirmed it was Endometriosis. She, too, was symptom-free, even 17 months after the surgery.

The Canadian Journal of Surgery published two separate cases of inguinal Endometriosis in 1999:

  1. A 42-year-old woman had right groin pain for one month near an area of swelling that varied in size. Her pain worsened when she stood for long periods of time, although her physicians could find nothing wrong. Three months later, at a follow-up exam, she still had pain in the area but the examination was again normal. And an ultrasound revealed nothing out of the ordinary. Another three months passed and she returned with ongoing pain. This time her physician was able to feel a small mass in her right groin and she was diagnosed with an inguinal hernia. In surgery, they found a 1cm blueish colored mass attached to her round ligament. Biopsy concluded it was an Endometrioma. They also discovered bilateral chocolate cysts. A year after the excision, she had no recurrent symptoms.
  2. After three months of swelling and intermittent groin pain, a 27-year-old woman went to her physician. A physical examination revealed a lump within her right groin near the inguinal ring. They suspected an inguinal hernia and performed surgery to repair it. Pathology confirmed it was an endometrioma and was fine a year after surgery.

Now this one is a little bit different. In the February 2001 edition of Southern Medical Journal, a 24-year-old woman developed a right inguinal hernia after heavy lifting. She had the hernia surgically repaired with no problems. The incision that was made shared a previous c-section scar incision. Four months later, she returned to her doctor with pain in that right area again. Two months after that appointment, a “deep painful bulge appeared” and surgery was performed because a recurrent hernia was suspected. Nope: it revealed an Endometrioma. The authors suspect transplantation of tissue from the c-section scar may have caused the Endometrioma to develop.

A study published in May of 2001 was of a 40-year-old woman who developed a lump on the groin that was tender to touch. The pain and swelling oftentimes worsened during her period and sometimes she had numbness in her leg on the same side as the lump. Wide-excision of the mass was completed and it was confirmed as Endometriosis. Prior to surgery, they suspected it was an inguinal hernia or perhaps a displaced ovary.

A 2005 study published in the Archives of Gynecology and Obstetrics showed three women who had suspected inguinal hernias were actually diagnosed as inguinal Endometriosis after exploratory surgery and excision. The lesions were once more all discovered on the round ligament.

The Singapore Medical Journal published a 2007 study of a 37-year-old woman who had a lump on her right groin area for the past two months. It didn’t hurt during her period. Exams showed the lump was present and an ultrasound revealed an inguinal hernia. In surgery, they discovered a 4cm x 4cm mass attached to her round ligament. It was removed (along with a portion of the round ligament, inguinal canal, and abdominal wall) and pathology confirmed it was Endometriosis. There was no hernia or other Endometriosis found. During her post-op, she had no further groin pain. Interestingly enough, this study states that Endometriosis has “been reported to affect all organs except the heart and spleen.”

A 2007 study published in Australasian Radiology stressed the the importance of using MRIs in such a situation. At 20-years-old, a gal had surgery to remove a cyst, adhesions, and Endometriosis. Eight years later, she noticed a tender lump near her groin area that stuck around for seven months. Its size fluctuated depending on if she was on her period or not. An MRI confirmed the presence of the mass on her right side, as well as a cyst on her left ovary. She underwent surgery to remove the cyst and the mass. The lump was found attached to her round ligament and confirmed as Endometriosis. The study suggests she had multiple MRIs because it was instrumental in capturing the changing size of the mass prior to surgery during her period, as well as having her physicians conclude it was likely Endometriosis prior to her surgery.

The Journal of Cytology published a 2008 study of a 37-year-old woman who had swelling of the right groin area a few months after having a c-section. The swelling caused her pain and a “stretching sensation” that varied and increased in intensity. A surgeon excised the mass, but no pathology was done. She was pain-free for a few months, but then it returned five and a half years later; the swelling came back in the same spot. The lump was again discovered on the round ligament, was excised, and this time was sent to pathology. A laparoscopy was also done and no evidence of Endometriosis was found within her pelvic region. A biopsy confirmed the mass was Endometriosis.

As we previously read, MRIs may prove to be a valuable tool in diagnosing inguinal Endometriosis. In 2009, the Japanese Journal of Radiology wrote about a 31-year-old woman who had “intense pain” in her groin area while on her period. A hard mass was felt during physical examination and located via MRI at the round ligament. After the lump was surgically excised, she was pain-free.

Cases Journal published a 2009 study of a 29-year-old woman who had two days of unexplained and sudden pain and swelling near her right groin and her pain increased when she was lying down. She had been on birth control, had previously been diagnosed with IBS, and was lactose intolerant. Her doctors felt the lump and suspected a femoral hernia or an enlarged lymph node. However, during surgery a “hard inflammatory mass” was found on the round ligament; no hernia or enlarged lymph node could be seen. The mass was cut out and sent to pathology for analysis and was determined the mass was Endometriosis.

Also in 2009, the Upsala Journal of Medical Sciences published a study of a 40-year-old woman who had a tender mass near her right groin for two years. When she was 23, she was diagnosed with Endometriosis. After her diagnosis, she was on four months of hormonal drugs and “had complete pain relief.” When she was 28, she delivered a child and noticed a small, painless lump near her groin during her pregnancy. A year later, she was had her second child and again noticed that same painless lump during her pregnancy. When she was 36 years old, that soft “pregnancy lump” became hard and remained painless. When she was 38, the lump became painful. The size of the mass and intensity of pain didn’t change when she was on her period. It was just there. And it hurt. Her surgeon, dermatologist, and gynecologist all told her it was fine. At 40, she sought out a fourth opinion because of her “severe groin pain.” They could feel the lump beneath her skin and confirmed its presence with CT and MRI scans. Like so many of these lumps, it was found on the round ligament and was adhered to the inguinal canal. They removed the mass and (surprise!) it turned out to be Endometriosis. She remained pain-free after the surgery.

ISRN Obstetrics & Gynecology published a 2011 study of a 48-year-old mother of three who complained of an inguinal mass on her right groin and uterine bleeding for two months. Usually her periods were pain-free, but over the past two months they were painful near her groin. Upon physical examination, the lump was non-tender and the the ultrasound was normal except for a “bulky uterus.” Fine Needle Aspiration was used to biopsy a sample of the mass, which pathology confirmed was Endometriosis. She underwent a surgery to remove the 5cm x 6cm mass from her inguinal canal, as well as a D&C to help de-bulk her “bulky uterus” (I think I just like typing that). Pathology once more confirmed the lump was Endometriosis. The 48-year-old woman remained symptom-free since excision.

BMJ Journals published a 2013 study of a 49-year-old woman who had swelling of her left groin for about six months. She also had a dull, aching pain near the swollen area. If she lifted heavy weights, the swelling increased, but there was no increase in swelling or pain when she was on her period. After an exam, they suspected an inguinal hernia and surgery was performed. The cyst (as they called it) was located on the left round ligament and extended to the vaginal wall. Biopsy confirmed it was Endometriosis. No recurrent pain at her follow-up appointments.

Endometriosis: it’s not just for women! A study published in 2014 in the Avicenna Journal of Medicine of a 52-year-old man who went to the E.R. with complaints of “excruciating stabbing pain in the right lower abdomen and pelvis area for 3 weeks.  The pain was worse on getting up from a supine position and was not relieved by bowel movements. It slightly increased upon urination as well.”  Seven months before, he had undergone inguinal hernia repair (which had been surgically repaired a few times before) and had a medical history of cirrhosis due to Hepatitis C.  He underwent a diagnostic laparoscopy and a mass was discovered attached to his bladder and his hernia site.  It was filled with blood, was removed, and biopsied.  It was Endometriosis, complete with it’s own estrogen and progesterone receptors.  After his surgery, his pain completely resolved.

Another study published in 2014 was in BMJ Journals and was of a 25-year-old woman who complained of right-sided hip pain, which was aggravated with hip flexion and adduction. A lump had been present near her right hip for a year and remained unchanged for six months. An MRI showed a small mass near her round ligament, which led her doctors suspected a few things, including an abscess or an inguinal hernia. Surgery was performed, the lump was excised, and was found to be Endometriosis.

A study titled, Jack in the Box: Inguinal Endometriosis, published in a 2015 edition of BMJ Journals was of a 39-year-old woman who had left-sided swelling who was diagnosed with an inguinal hernia. During the prior six months, it had increased pain and swelling around her period. She didn’t have painful periods, cramps, or painful sex. An examination revealed swelling that extended from her inguinal region to her labia majora. Due to the fact that it had no other symptoms of a hernia, her physician suspected inguinal Endometriosis and performed surgery. Endometriosis was found along the round ligament all of the way along the ligament to her labia majora. It was excised, confirmed to be Endometriosis, and the patient had no recurrent symptoms a year later.

Another 2015 study published in BMJ Journals was of a 32-year-old woman who’s primary doctor suspected an inguinal hernia and referred her to a general surgeon. For two years, she had painful swelling near her right groin, which had gradually worsened especially during her periods. She had no documented history of Endometriosis, but had a c-section seven years prior. The lump could be felt on her right groin near her c-section scar. The general surgeon suspected an inguinal hernia with the possibility of “an endometrial deposit.” An MRI ruled out a hernia, but still supported the suspicion of an Endometrioma. The mass was excised, confirmed to be an Endometrioma, no hernia was discovered, and she was doing well 15 months after surgery.

In August 2019, an abstract was published in BMJ Journals of a 41-year-old woman who was clinically diagnosed with an inguinal hernia, but the mass was later surgically diagnosed as Endometriosis. She had complained of groin swelling over the past month since her last period and had an unremarkable surgery and gynecological history.

(Published on October 29, 2019)

Resources:

American Journal of Obstetrics & Gynecology (Article, Feb. 1958) – Inguinal Endometriosis

Annals of Surgery (Study, Dec. 1927) – Inguinal Endometriosis

Annals of Surgery (Study, June 1960) – Inguinal Endometriosis

Archives of Gynecology and Obstetrics (Abstract, Jan. 2005) – Inguinal endometriosis

Australasian Radiology (Abstract, Jan. 2007) – Inguinal Endometriosis Attaching to the Round Ligament

Avicenna Journal of Medicine : Article (2014) An Unusual Cause of Abdominal Pain in a Male Patient : Endometriosis

BMJ Journals (Study, 2013) – Endometriosis of Extra-Pelvic Round Ligament, a Diagnostic Dilemma for Physicians

BMJ Journals (Study, May 2014) – An Unusual Presentation of Endometriosis

BMJ Journals (Study, 2015) – Jack in the Box: Inguinal Hernia

BMJ Journals (Study, 2015) – A Case of Endometriosis Presenting as an Inguinal Hernia

BMJ Journals (Abstract, Aug. 2019) – Inguinal Endometriosis: a Differential Diagnosis of Right Groin Swelling in Women of Reproductive Age

British Medical Journal (Study, March 1949) – Endometriosis of the Groin

Canadian Journal of Surgery (Article, Oct. 1999) – Endometrioma Simulating Inguinal Hernia: Case Reports

Cases Journal (Study, Aug. 2009) – Endometriosis Presenting as an Acute Groin Swelling: A Case Report

Europe PMC (Abstract, May 2001) – Extraperitoneal Inguinal Endometriosis

Glasgow Medical Journal (Study, March 1945) – Endometriosis of the Inguinal Region: Report of Two Cases

ISRN Obstetrics & Gynecology (Study, 2011) – Inguinal Endometriosis: An Uncommon Differential Diagnosis as in Inguinal Tumor

Japanese Journal of Radiology (Abstract, Feb. 2009) – Magnetic Resonance Imaging Findings of Extrapelvic Endometriosis of the Round Ligament

Journal of Cytology (Study, 2008) – Inguinal Endometriosis: A Case Report

Obstetrics and Gynecology (Abstract, Aug. 1991) – Inguinal Endometriosis: Pathogenetic and clinical implications.

Singapore Medical Journal (Study, 2007) – Endometriosis of the Inguinal Canal Mimicking a Hernia

Southern Medical Journal (Abstract, Feb. 2001) – Scar Endometriosis Manifested as a Recurrent Inguinal Hernia

The American Surgeon (Abstract, June 1977) – Extraperitoneal inguinal endometriosis

The British Hernia Centre – Inguinal Hernia

Turkish Journal of Medical Sciences (Study, July 1999) – Inguinal Endometriosis: A Report of Two Cases and a Review of Literature

Upsala Journal of Medical Sciences (Study, July 2009) – A Case of Inguinal Endometriosis with Difficulty in Preoperative Diagnosis

~ Again, I am a layman. I do not hold any college degrees, nor mastery of knowledge. Please take what I say with a grain of salt. If curious, do your own research. Validate my writings. Or challenge them. And ALWAYS feel free to consult with your physician. Always. Yours ~ Lisa

Pain & Poops: Then & Now

Happy poop with daisy on it's head

Well, here we are in 2019 and I’m starting my blog off talking about poop…Why? Because I’m SUPER excited to share with you how different my bowels (and pain levels) have been since my recent bowel resection and Endometriosis excision surgery.

If you weren’t aware, I underwent a bowel resection to remove deep-infiltrating Endometriosis from my small intestine.

Embrace this discovery with me! Here’s my pain journal summary for November of 2018:

Summary of November 2018 pain and symptoms

And here’s my pain journal summary for January of 2019:

Summary of January 2019 pain and symptoms

I went one step further and compared my bowel movements and their pain levels for the first eight days of November and of January! The difference is…staggering!

Table of poops for Nov 2018 vs Jan 2019

Look how numbers have completely shifted!!! I was flabbergasted when I did the comparison! I mean, I’ve obviously noticed a huge difference in my quality-of-bathroom-life, but wasn’t expecting THIS! And if you’d like more up-to-date info on my bowel movements and pain symptoms, I’ve started blogging about them on the first of every month.

If I ever needed any sort of reassurance that my bowel resection and Endometriosis excision surgeries were the right call, this is it. Not that I needed that validation. And am so grateful to Dr. Mel Kurtulus and Dr. Matthew Schultzel for their expertise, compassion, and friendship.

But I was SO excited about the difference that I wanted to share it with you…And bring in the New Year with…poop-talk.

Stay tuned. I’ll be blogging full-force once again now that I can sit at a computer for longer periods of time. And I cannot wait to share with you the details of my last surgery and the findings.

Be well. I’ve missed you Readers. And I’m so pleased to be back in the saddle, so to speak.

(Updated April 5, 2019)

July 2018 Surgery Recovery

Photograph of Dr. Mel Kurtulus and Lisa Howard before surgery, titled Resilience; photo taken by Brandy Sebastian
Dr. Mel Kurtulus and I before heading in. Photo courtesy of Brandy Sebastian

As you may know, I like to take extensive notes during my recovery from my Endo surgeries. This helps me better be prepared in case I have another one – just to get a sense of what was normal and what I can expect next time. And who knows – it may help you…or someone you know.

A good friend of mine, Brandie, typed up my chicken-scratch notes. (Thank you BRANDIE!) BUT, the “cliff notes” version is below:

DAY ONE (July 18, 2018, took 1 Percocet, 1 Zofran, 2 Gas-X)

We got home from the hospital around 7:00 p.m. I don’t remember any of the ride home, which is probably good because it was freeway rush hour and probably wasn’t very pleasant. The first thing I did inside was pop a throat lozenge. My poor throat was sooore and tender. Then had a bowl of bone broth. My lower stomach pain was a 3 out of 10, and my belly button incision pain was a 5 out of 10.

At around 8pm, I tried to sit down for the first time. That tell-tale shoulder pain began to creep up with a vengeance (7 out of 10) and I only sat for 3 minutes. Well, that was a waste. I needed help getting up and down. I knew I’d have to sit again or lay down…but not yet. I popped a Percocet, a Zofran, and a Gas-X.

By 8:30, I had my first pee since I got home. It hurt soooooo much (9/10), but I figured that pain was likely because my bits were still tender from the catheter. By 9pm, I tried sitting on the couch again: no luck. Shoulder pain was a 9/10 and gave up and walked for the next 20 minutes. Then tried to lay down (propped up on pillows), but the shoulder pain flew back up to a 9 out of 10. Did a lot of walking and breathing. By this time, my incision pain was a 2/10 and my lower back pain was a 1/10. I just wanted to sleep, though…

By 9:35, we tried laying down again propped up by even more pillows. The discomfort was minimal. By 10:15pm, I was awake and had to walk around for an hour. I had to pee before going back to bed (again, urination pain 9/10), then I was overcome by nausea. Mom helped me on my hands and knees and I vomited (pain 2/10). I believe my Percocet pill from 2 hours earlier was still floating around in my stomach because my puke was a beautiful shade of blue. At 11:45pm, mom helped me back into bed, but I couldn’t fall asleep until 12:20-ish.

DAY TWO (Fiber; took 2 Gas-X)

Incision pain 2 – 6/10 (10/10 when struggled to get out of bed)

Shoulder/CO2 Gas pain 3 – 10/10

Lower abdominal pain 2 – 9/10

Lower rib pain 1 – 4/10

Lower back 1 – 4/10

Lower ab pain near right hip 2 – 8/10

Pain while urinating 1 – 6/10

Woke up nearly every hour still…poor Jim and Mom. And needed help getting on and off the toilet.

Was still passing some clots throughout the day.

Nothing to eat except bone broth and crackers.

Memorable Moments:

At 1:20am, I woke back up stiff and needing to walk. Dragged my husband out of bed to help me get out of bed and proceeded to walk around the house for an hour. Jim went back to bed. And Mom was in and out of sleep as I cruised around the living room using the walker. When I went to go back to bed, the shoulder pain came back a 10/10. Mom and Jim had to help me (panicked) out of bed and I had to calm down before we tried to reposition and go back to sleep. At 2:40am, we did just that. I slept off and on until 7:15am.

At 3:55pm, my first FART!

At 4:37pm, I can lift my leg higher than the bah tub rim!! I couldn’t do that earlier!

DAY THREE (Purelax; took 1 Gas-X; 1 Naproxen Sodium)

Incision pain 2 – 3/10

Lower abdominal pain 3 – 9/10

Lower back 1 – 8/10

Pain while urinating 1/10

Pain while farting 1/10

Was able to sleep for a few hours in a row before waking up throughout the night.

Ate soup and crackers. Snacked on a pickle. Small bowl of ice cream (I mean…like 2 small spoonfuls)

No shoulder/gas pain today!

Memorable moments:

7:20am, my first poop!!!!!

8:50am, although I still need help getting on and off the toilet, I was able to (carefully) pull up my panties by myself today!

12:58pm, was able to get off of the toilet by myself! But I still needed help getting down onto it.

1:01pm…oh dear god…the Enema Story. TEAM POOP! Rosie and Erin helped me. And let’s just say by sheer force of necessity, I was able to get myself onto and off of the toilet by myself…Needed the enema due to severe and constant lower ab cramping and figured it was poop. Yep…there was LOTS of poop. Throughout the day, continued to get on and off the toilet by myself! PROGRESS!

4:50pm, was able to slowly and gently walk down the stairs to check the mail with Rosie and Erin! One step at a time.

DAY FOUR (Purelax; 1 Naproxen Sodium)

Incision pain 1 – 6/10

Lower abdominal pain 2 – 6/10

Lower ab pain near left hip 7 – 9/10

Pain while urinating 1 – 2/10

Pain while farting 3/10

Still needed help getting in and out of bed.

Ate soup with crackers. Snacked on cracker. Nachos for dinner!

Memorable Moments:

10:10am, got into the shower by myself!!! FREEDOM!

4:00pm, getting better with the steps outside! Still one at a time, though.

10:00pm, FINALLY laid down flat to sleep. YES!! No pain. Although I did get myself out of bed alone…don’t do that again. Not yet.

DAY FIVE (Purelax)

Incision pain 2 – 6/10

Lower abdominal pain 2 – 5/10

Lower ab pain near right hip 2/10

Ate tomato soup with crackers. Snacked on watermelon, blueberries, dolma, and pickle. Chicken balti pie for dinner.

Memorable moments:

12:55am, got up out of bed alone to go pee! Kind of waddle around like a turtle on its back, but it works.

10:10am, got dressed in REAL clothes! Skirt, tank top, and brushed my hair!

6:50pm, Jim and I went for a walk around our mobile home park for a few blocks. It was marvelous to get out of the house. Slow going. Didn’t get far.

8:50pm, pooped again! No enema needed! And no pain!

DAY SIX (Started my period! Fiber; 2 Ibuprofen)

Incision pain 2 – 3/10

Lower abdominal pain 2 – 7/10

Lower back pain 3 – 5/10

Ate miso broth. Snacked on watermelon, popcorn, apple with peanut butter, pickles, tortillas. Dinner was a pork and (very little) cheese. Yep, my appetite is BACK!

Memorable Moments:

5:26am, woke up thinking I peed the bed. Nope, just started my Ninja Period.

6:20am, BIG poop with no pain! Yep, I’m back, baby!

9:00pm, another short walk around the park with my husband.

DAY SEVEN (Fiber)

Incision pain 2 – 6/10

Lower abdominal pain 3 – 6/10

Lower ab pain near right hip 3 – 6/10

Pain while urinating 1/10

Pain while farting

Pain while pooping 5/10

Ate broth and soup. Snacked on popcorn. Dinner was fettuccine alfredo with shrimp.

Memorable moments:

I can bend over!!!

Lower left window band-aid came off! Steri-strips still in place. Looks good!

7:00pm, rode in car to go to dinner. Speed bumps and potholes hurt my lower stomach and incisions (4/10). Had to walk around the restaurant while waiting for dinner since sitting too long hurt.

DAY EIGHT (Fiber; 2 Ibuprofen): – it’s been one week since surgery!

Incision pain 2 – 8/10

Lower abdominal pain 2 – 7/10

Lower ab pain near right hip 5 – 7/10

Ate miso broth and leftover pasta. Snacked on popcorn, dried apricots, tortillas.

Memorable Moments:

6:50am, Baku walked on my stomach. Damn cat. All incision pain 7/10.

2:15pm, I can get in and out of bed easier by myself.

11:30pm, right incision pain was an 8 out of 10 and kept me awake until 1:00 a.m.

DAY NINE (Fiber; 2 Ibuprofen)

Incision pain 2 – 3/10

Lower ab pain near right hip 2 – 3/10

Pain under left rib 2/10

Ate soup & crackers, baked beans. Snacked on Hershey Kisses. Orange chicken for dinner.

Memorable Moments:

6:12pm, can still only sit upright for 10 minutes before incision pain is a 6 – 8 out of 10.

8:10pm, went for a 20 minute walk around the park with Jim. No pain!

DAY 10 (Fiber; 2 Ibuprofen)

Incision pain 2 – 7/10

Lower abdominal pain 1 – 4/10

Pain while urinating 1 – 2/10

Pain while farting 2/10

Pain while pooping 2/10

Ate scrambled eggs with cheese, soup, leftover orange chicken. Snacked on kettle corn.

Memorable Moments:

8:15am, Able to wash my calves for the first time in the shower! And I was able to blow-dry my hair! Lost left incision band-aid in the shower. Steri-strips are in place. And my belly is much less bloated!

9:00am, still can only sit upright for 10 minutes without pain.

7:00pm, walked around the grocery store for an hour with Jim. He did all the heavy lifting, but I’m exhausted.

DAY 11 (Fiber; 4 Ibuprofen)

Incision pain 2 – 6/10

Lower abdominal pain 2 – 6/10

Pain by right lower ab near hip 2 – 5/10

Pain while urinating 2/10

Pain while pooping 2/10

Ate eggs, corn beef hash, toast. Snacked on a plout and cherries. Snacked on kettle corn.

DAY 12

Incision pain 2 – 6/10

Lower abdominal pain 2 – 5/10

Pain while urinating 8/10

Pain by right lower ab near hip 2/10

Ate rolled tacos.

Memorable moments:

Went thrift store shopping with Jim. Exhausted and napped for 2.5 hours afterward.

DAY 13 (2 Ibuprofen)

Lower abdominal pain 1 – 5/10

Pain by right lower ab near hip 5 – 9/10

Pain while pooping 1/10

Ate fried egg sandwich. Snacked on cherries, a pluot, watermelon, and cherry tomatoes. Dinner was cauliflower, beans, corn & cheese burrito with salsa.

Memorable Moments:

Spent 2.5 hours at the library. Too much sitting on hard chairs caused a lot of pain! And the Lyft ride was brutally bumpy.

DAY 14 (Fiber)

Incision pain 2/10

Pain by right lower ab near hip 1 – 3/10

Ate nachos (with very little cheese). Snacked on an apple with peanut butter. Dinner was yellow curry with chicken and rice, golden shrimp, and crab rangoons.

Memorable Moments:

Only woke up once during the night to go pee!

DAY 15

Incision pain 2 – 7/10

Lower abdominal pain 3/10

Pain by right lower ab near hip 1 – 3/10

Lower back pain 1/10

Ate sushi.

DAY 16

Incision pain 2/10

Pain by right lower ab near hip 1 – 3/10

Ate 2 eggs, french toast, and bacon. Lunch was a baked potato with sour cream and chives.

Memorable Moments:

Lost a few Steri-Strips today! Looks good.
Ran errands with brother in law: Trader Joe’s and Sprouts and Smart&Final. Minimal discomfort but exhausted. I didn’t do any heavy lifting.

Drank 3 glasses of pomegranate champagne. My first alcohol since 2 weeks before surgery!

Jim and I enjoyed a little bit of foreplay and “just the tip.” Didn’t penetrate too much and it was a lot of fun. No pain!!

DAY 17 (2 Ibuprofen)

Incision pain 1 – 4/10

Lower abdominal pain 3/10

Pain by right lower ab near hip 2 – 4/10

Pain while pooping 3/10

Lower back pain 1/10

Lower right rib pain 4/10

Ate leftover yellow curry. Snacked on a pluot. Dinner was a chicken breast sandwich.

Memorable Moments:

Vacuumed, did laundry, and changed the cat litter. It was exhausting, but I took it slow and easy and didn’t overdo anything. But…by looking at the cumulative pain scores above, I can tell I overdid it. Crap.

DAY 18 (2 Ibuprofen)

Incision pain 2/10

Lower abdominal pain 2/10

Ate two waffles with fake butter and real maple syrup.

Ate Indian food for dinner.

Memorable moments:

Enjoyed 3 glasses of white wine. And it looks like my body recovered well from yesterday’s chores.

DAY 19 (Took 2 Ibuprofen)

Incision pain 3/10

Lower abdominal pain 3 – 8/10

Pain by right lower ab near hip

Pain while pooping

Lower back pain 3/10

Ate 2 waffles, drank three glasses (small) sangria, 1 glass wine, lots of water. Bean guacamole chips, chicken sandwich, pickles, chocolate chip cookie, lentil salad.

Memorable Moments:

Today was our Endo Support Appreciation BBQ! It was WONDERFUL to see everyone, to meet their support, and enjoy their company. I’m tired, though!

Lost another Steri-Strip!

And on DAY 20: August 6, 2018, I returned to work. It was my first time driving since surgery. And it was tough. I also had my post-op appointment that day. Dr. Kurtulus removed all of my Steri-strips and everything continues to heal well.

Today is August 27, 2018, and it still hurts to sit at the computer for too long. I have to get up and stretch/walk several times during the work day.

My advice if you’ve got a surgery recovery to look forward to? Take one day at a time. ASK FOR HELP! And listen to your body.

(Updated March 28, 2019)

Endometriosis Excision Surgery 3.0

Pre-surgery photograph of Dr. Mel Kurtulus and Lisa Howard taken by Brandy Sebastian, titled Resilience.
Dr. Mel Kurtulus and I before heading in. Photo courtesy of Brandy Sebastian; used with her permission

On July 18, 2018, I underwent my third robotic-assisted laparoscopic excision of Endometriosis by Dr. Mel Kurtulus ( of San Diego Womens Health).  As always, I love to share my experiences with you – not only to create awareness of this illness, but in the hopes that the process of my surgery (and later recovery) may help you, or others.

Before I go on, I just want to take a moment to express my joy in the above-photograph.  I am a detached head, floating beneath a fluffy warm-air blanket in the pre-op area, enjoying a wonderful moment with an incredible surgeon and man.  Thank you, Brandy, for capturing this.  And thank you, Dr. Kurtulus, for being so marvelous!

Okay, on with the nitty-gritty!

My mom, husband, and I were awake at 6am and in the hospital by 8am to check-in.  If you’ve never been to the Scripps Hospital La Jolla, it’s glorious.  Every attention to detail and the efforts of the staff are meant to soothe and calm: beautiful artwork, a live piano player in the lobby, and compassionate staff.  It’s wonderful.  We were joined by a wonderful friend and fellow EndoSister, Brandy, to document the experience (these photographs will be shared at a later date…I’m so excited about what she is doing!)  I was rolled back for pre-op somewhere around 11:30 and wheeled back to the OR by noon.  My surgery took approximately four hours.  And here I was worried he wouldn’t find any Endometriosis…(I should know better…)  We arrived home around 7:00pm.  A very, very long day for my friends and loved ones.

Segment of pre0-op report "robotic assisted excision of endometriosis, lysis of adhesions, enterolysis, urethrolysis, cystoscopy, possible right and/or left ovarian cystectomy, bilateral salpingectomy"

The plan was to open me up and peek under the hood, so to speak.  If any Endometriosis was discovered, Dr. Kurtulus would excise it; any adhesions would be freed; the ovarian cysts that were seen in ultrasounds would be removed; my ureters would be examined and freed of any adhesions; he’d look inside my bladder for any Endo or evidence of Interstitial Cystitis; and he would (with my willing and educated permission) remove both of my Fallopian tubes.

What did he find?  Following is a page of my op report, in case you enjoy reading all of the medical terminology (like I do).  I’ll also further explain what I understand and share photographs below!

Portion of operative report (about 1 page worth of text)

In a nutshell?  I had:

  • I was laid on a table, strapped in, and tilted somewhat upside-down.  Then a tiny hole was punched in my belly, 3 liters of CO2 gas was pumped in and I was inflated, and the doc took a peek around.  Three additional ports were added (tiny incisions) so tools and the robotic arms (tiny!) could be inserted.  On with the discovery:
  • A cyst on my right ovary;
  • A cyst on my left ovary;
  • Endometriosis on my cul de sac, small intestine, near my sigmoid colon, and on my left ovary and fallopian tube;
  • My fallopian tubes were hideous, “angry”, inflamed, swollen;
  • Adhesions on/near my sigmoid colon, my bladder, my fallopian tubes;
  • My sigmoid colon was stuck to the left side of my pelvis;
  • My bladder was pinned to my uterus;
  • My left ureter was surgically detached to allow safe access to Endometriosis lesions on my left ovary, then reattached once all-clear;
  • And (hooray!!!) NO evidence of Endometriosis was found on my liver or diaphragm (discovered there in prior surgeries).

During my post-op meeting, Dr. Kurtulus let me know that this time my Endometriosis lesions were all either clear or red.  He said they were almost grape-like.  I’m so pleased that he is so skilled and thorough during these procedures!!  And grateful he knows what to look for!

Ready for photos of my insides?  I don’t know if you can click on the photos and make them full-size, so they’re also available on Google Drive.

The Fallopian Tubes

My Mum told me that when Dr. Kurtulus showed she and my husband the photographs after the procedure, he said my fallopian tubes were “angry” and swollen.  That description will stick with her for quite a while, especially when she saw the photographs.  I am so glad we had already discussed removing my fallopian tubes before my procedure; as he likely would have removed them due to their massive state.

I had a 3cm cyst on my right ovary, which he removed while saving my ovary.  Also,  a cyst and Endometriosis lesions on my left ovary, which he excised (still saving my left ovary).

Lisa's surgical photos of fallopian tubes and ovaries
The yellow circles are showing Endometriosis on my fallopian tubes

My husband and I don’t want children at our age, but it doesn’t make the medical sterility any easier to bear.  I have grieved and mourned and cried and sobbed.  I am feeling much better now (although sometimes it still hits hard) after talking about it with friends and family and I wanted to share some incredible words from a few friends that they shared to comfort me:

“You may no longer have fallopian tubes, but you got one of the biggest pair of brass balls I’ve seen.” ~Barbara Carrera

“It’s a good thing to have the diseased bits out of the way.  And now you don’t have to worry about condoms.  And it’s fun to imagine your ovaries as crazy, free-floating googley-eyes!  They’ve been unleashed!!  Fly my pretties!  Fly!!”  ~Sarah Mew

Thank you, ladies.  I needed those laughs. ❤

The cul de sac (aka Pouch of Douglas)

This is my third surgery and during both of my prior surgeries, I had Endometriosis in my cul de sac.  To quote both of my first two op reports, my cul de sac was “obliterated.” What the heck is a cul de sac?  It’s the little empty space between the back of the uterus and the rectum.  It’s usually very common for Endometriosis patients to have lesions in this area.  This time, most of my Endo was on the left side, rather than everywhere in that little pouch.  And, Dr. Kurtulus excised all that he saw.

Lisa's surgical photos of the pouch of douglas, Before and After excision surgery

I’m flabbergasted at the difference!!! But, here are more photos of what my cul de sac looked like before I was all tidied up:

Additional surgical photographs of the pouch of douglas
Again, circles indicate Endometriosis lesions that I’m aware of

The Small Bowel

Two lesions were discovered on my bowel.  Dr. Kurtulus brought in a colo-rectal surgeon to look at the lesions to determine if they could be removed superficially or if something greater would be required.  The colo-rectal surgeon confirmed the spots looked like Endometriosis, but I would require a resection of that bit of small intestine.  It’s close to my appendix, on the right side.  (Update: I had my 4th excision surgery in November of 2018 to remove this Endo and a bowel resection.)

Lisa's surgical photographs depicting Endometriosis on the bowels

The Bladder and Uterus

When I saw the photographs of my bladder being pinned to my uterus and held in place by a literal web of adhesions, I was amazed!  AMAZED!  I’d been having pain often when I peed and wonder if it was related to anything-Endo.  So Dr. Kurtulus freed my bladder (he’s my hero!).  He also looked extensively at the inside and outside of my bladder and found no evidence of Endometriosis or Interstitial Cystitis (aka IC).

Lisa's surgical photographs of adhesions on the bladder

The Cost of it All!

As usual, I LOVE to share what this type of surgery costs.  And, to date, this was the most expensive for my insurance company!  I paid a $500 co-pay to the hospital and my insurance covered a whopping $121,669.50!  Holy moly!!!  I’m still waiting to see if the colo-rectal surgeon will submit a separate bill for his time, as it wasn’t itemized on my Estimate of Benefits form.  Other than that, there shouldn’t be any sneak attack bills…I hope.  If you’re curious what my first and second surgeries cost, I’ve blogged about that, too!

Future Plans

I had my post-op appointment with Dr. Kurtulus on August 6th.  He spent some time with me going through the details, labeling the photographs, and talking about our future plans.  Did we pick curtains or china patterns? No.  We covered prospective treatments!  I’ll see him again for an 8-week follow-up in mid-September.

He brought up birth control and remembered I don’t want to take it as I feel it truly makes me a different person.  Then he mentioned Lupron Depot and Orilissa, but acknowledged (before I could say anything), that he knew I didn’t want to take those.  So, he wonderfully respected my opinions and desires; didn’t push anything.  Didn’t make me feel like I was a “hostile patient” or making poor choices.  And he supports my desire to strive toward an anti-inflammatory diet, keep a positive attitude, and pursue the bowel resection surgery as soon as I am able.

The Recovery Process

I fully intend to fully blog about my 2-week recovery and share my notes soon.  But I wanted to also mention it briefly here.  It wasn’t easy at times, but mostly it wasn’t hard.

My pre-op Endometriosis pain is 99% gone!  Just a little bit of “ugh” near the lower-right edge of my abdomen…and I may either just be healing or it’s the last bit of Endo clinging to my bowel waving at me.  I was even on my period! And it was so pain-free that it was a Sneak Attack period and caught me by surprise (the poor bed sheets).

The first week was a whole lot of paying attention to my body, small little walks, a mostly-liquid diet, lots of lounging on the couch-bed and watching Netflix.  There was the expected post-op pain the first day, a vomit on Day One (whoever wants to do that so soon after abdominal surgery?), sleepless nights, and difficulties getting comfortable.  And those first few days of hardly any sleep wasn’t easy on my husband or mother, who had to help me get in and out of bed multiple times throughout the night.

The second week I felt far more capable, although I didn’t do much of anything other rest and be lazy.  And I returned to work on August 6th.

I had very little shoulder pain related to the CO2 gas and I blame that on my surgical team’s skill in deflating me as much as possible and getting out as much gas as they could!  I did have a few episodes of that pain, but nothing in comparison to my first surgery.

It took three days to poop.  The discomfort was so great that I opted for an enema.  That is a tale in and of itself; one you shall never read about!!

My body is still healing: sitting too long causes discomfort; stairs are from the Devil; and  I don’t allow myself to squeeze out a poo – if I have to do more than just a gentle push, it’s not time yet.  No straining.  No lifting.  No pushing. No pulling.  BUT I have been cleared to go swimming in a pool (no lakes or oceans)…and we can have sex! We were recently brave enough to give it a go and I’m happy to report there was no pain or discomfort!

The last of my steri-strips were removed at my August 6, 2018, post-op appointment and they’re healing well.

BEFORE I GO…

I want to thank Dr. Kurtulus and his staff for their excellent care, the incredible nurses and other surgical team members at Scripps Hospital La Jolla, Brandy for her amazing photographs and the project she is working on, my Mum for driving out (yet again) to be with me for surgery and during a hardest days of my recovery, my husband for all that he’s endured with me, Erin for taking care of me for a few days, Rosie for spending time with me during my recovery, Laura & Chris & Carrie for their wonderful company to celebrate my health, Zeiddy for constantly checking in on me, my employers and co-workers for the beautiful flowers, and all of my EndoSisters, friends, and family who also threw me well-wishes and love.

This has been an amazing experience.

Be well. All of you.

(Updated March 27, 2019)

~ Again, I am a layman. I do not hold any college degrees, nor mastery of knowledge. Please take what I say with a grain of salt. If curious, do your own research 😉 Validate my writings. Or challenge them. And ALWAYS feel free to consult with your physician. Always. Yours ~ Lisa

Endometriosis: Excision vs Ablation

Graphic depicting excision vs ablation
Detail,”The Endo-Graphic” by Sarah Soward.

So, you may be reading this because you have a surgery pending, or you’ve had surgery and want to know if it was the “right” one.  Well, when it comes to Endometriosis, there are typically two ways of dealing with the lesions that I’ve read of. If there’s more, share with me, please!  Whichever way your surgeon opens you up : laparotomy or laparoscopy, robotic-assisted or not – your surgeon will still need to decide how best to handle the lesions he or she finds within your body.

  1.  Excision – removing the entire lesion by cutting a margin of healthy flesh around the lesion – see the graphic above, scooping the healthy soil around the flower to get the roots, and then some.
  2. Ablation – destroying the lesion by burning the surface away.  Like freezing off a mole or wart, but burning away the Endo.  The graphic above with the flamethrower may leave the roots of the lesion, and unhealthy Endometriosis tissue, behind…

Is one better than the other?  That’s purely a matter of opinion, but the popular opinion is, “yes!”  There are countless studies that agree.  But why?

Ablation only affects the surface of the lesion by destroying the tissue.  It may leave unseen portions of the disease beneath the surface, which may allow for speedy recurrence of Endometriosis growth and symptoms.  Ablation may also cause further scar tissue to develop – you are literally burning or melting the lesion away.  Other names for ablation may include cauterization, vaporization, and fulgeration.  Terms for some of the tools that may be used during ablation can be electrosurgical devices, thermocoagulation devices, lasers, a harmonic scalpel, helium or argon plasma therapy, and the cavitron ultrasonic surgical aspirator (CUSA).

Excision (sometimes called resection) removes the entire lesion, as well as a healthy bit of flesh around the lesion.  The surgeon hopes to remove all traces of that particular lesion, in the attempt to make recurrence more difficult.  The more lesions that can be excised, the better chances you may have at a longer symptom-free life.  Tools can be cold, hard cutting tools such as scissors or even lasers (but…but…heat energy – burning!?!) – nope, lasers are often used for excision surgeries to cut around the lesions and harvest it out whole.

You may be interested to go back, grab a copy of your operation report, and compare these tools and techniques.  What exactly DID your surgeon do?  Or you can use this information to better ask questions of your doctor prior to a pending surgery.

Avocados demonstrating excision v ablation for endometriosis

Imagine an avocado (mmmmm avocadoooo) – you slice that bad boy open, remove the pit, and discover a bit of browning on the surface.  Nasty bruises and icky…But, there’s plenty of good avocado still to be enjoyed.  If you only scraped off the surface of that brown spot, you’d likely still have MORE brown spot beneath it – that rotten little bruise extends deeper into the avocado flesh (delicious green flesh).  You’d want to take a spoon and scoop out the brown spot in it’s entirety, and enjoy the fresh avocado that you have remaining.

Icebergs demonstrating surface Endometriosis vs deep Endometriosis

Also, think of an iceberg.  The tip is only visible above the surface of the water, but the iceberg can extend for quite a long while beneath the waves.  Endometriosis lesions do the same.  Who knows what’s lurking beneath the surface.  And if the entire iceberg – um, Endometriosis lesion – isn’t removed, it may resurface.

Studies have shown that women who undergo excision surgery of Endometriosis lesions have less painful periods, less painful bowel movements, and chronic pelvic pain than women who underwent ablation.  Studies also indicate that painful sex levels remain about the same for both excision and ablation surgeries.

Women who undergo ablation surgery for Endometriosis have a 40-60% chance of recurrence, sometimes within months of surgery.  In contrast, 75-85% of women who undergo excision surgery claim long-term relief.    I personally have undergone four excision surgeries (June 2014, Sept. 2016, July 2018, Nov. 2018).  Some of my Endometriosis was in similar areas of my body as my first surgery, but some was found in new locations…My surgeon opted instead of excising (or even ablating) a lesion on my diaphragm, to leave it there for safety’s sake – nobody wants a perforated diaphragm (this lesion disappeared after my 2016 surgery)! Excision surgery may not be ideal in every situation – and a skilled surgeon will be able to know when, and when not, to cut.   Even then, it may not work and you still may be slated for a future surgery.  The only guarantee with this illness: there is no guarantee.

In the end, it’s not only about the type of surgery or the tools used – it boils down to the skill level of the surgeon and their method of dealing with Endometriosis.  How competent are they? Do they do excision or ablation?  How often do they perform excision surgeries?  What’s their recurrence rate among patients?  Ask questions! Get answers!  Be comfortable and confident with your surgeon’s skills.

And, as always – there is no cure for Endometriosis.  We may get relief from medication, supplements, lifestyle changes, or even surgeries, but there is always, always, the chance for recurrence.  Listen to your body.  And don’t be afraid to head back in for another consultation…

I’d like to extend a special Thank You to Sarah Soward, a local artist and EndoSister who granted me permission to use a detail of her Endo-Graphic as our cover photo for today.  To view the entire image and all of the information contained there, please visit her site.

(Updated June 26, 2019)

Resources:

Center for Endometriosis Care

Diamond Women’s Center

Endometriosis Australia

Endometriosis Foundation of America

EndoSupport.com

Eric Daiter, M.D.

Nezhat.org

Sarah Soward

The Journal of Minimally Invasive Gynecology – (Unedited Manuscript; April 2017) Laparoscopic Excision Versus Ablation for Endometriosis-Associated Pain – Updated Systematic Review and Meta-Analysis

Vital Health Institute

~ Again, I am a layman.  I do not hold any college degrees, nor mastery of knowledge.  Please take what I say with a grain of salt.  If curious, do your own research Validate my writings.  Or challenge them.  And ALWAYS feel free to consult with your physician. Always.  Yours ~ Lisa

Meet Dr. Sonia Rebeles

Sonia Rebeles, MD-094

I’ve recently learned of an Endometriosis workshop taking place next Wednesday, February 24, 2016, in Beverly Hills.  I reached out to Dr. Sonia Rebeles, who will be conducting the workshop and she graciously agreed to answer some of our questions.

If you’re in the Beverly Hills area and available that evening to attend, I highly suggest you sit in.  For more information on that upcoming workshop, please click here for their Facebook page.  Don’t have Facebook? Don’t worry – more information can be found here.  And, if you’re like me and can’t attend, Dr. Rebeles may be able to upload a Youtube video afterward.

**

Please begin by telling myself and the readers a little bit about yourself.  

I’m 39 years old, originally from El Paso, Texas.  Professionally speaking, I recently relocated to Los Angeles to start a new private practice in Beverly Hills. I did my undergraduate training at Stanford University and fell in love with California.  Along multiple points throughout my career I’ve tried to venture back to the sunny state, but the timing was always off.  Finally, early last year when I was contemplating a career move and revisiting my career goals, I was recruited by and offered a truly once in a lifetime opportunity to showcase my talent by the phenomenal people at K and B Surgical Center in Beverly Hills.  I couldn’t pass up the opportunity to work alongside such a respectable group of physicians in such a prestigious region of the country.

Personally speaking, I love staying physically active and fit.  I am a Crossfit fiend, but I also enjoy cycling (road and mountain) and running on occasion, especially with my dog Bella.  My passion for photography is almost as great as my love of surgery and healing patients.  In both realms, I feel completely in my element.

Let’s see, what else…my birthday is April 1st.  No joke. 🙂

Do you have Endometriosis? 

Not as far as I know.  I suffer from the usual common female maladies like annoying periods and menstrual cramps and bloating, but I think that’s more PMS-related. I’m lucky that my symptoms have never been severe and on the rare occasion that they are, a couple of Advil do the trick.

What got you interested in treating Endometriosis?

In all honesty, I didn’t enjoy treating patients with endometriosis when I went through my residency training.  Most of my senior attendings and colleagues taught me to treat endometriosis medically first and rule out all the other types of pathology that could cause pelvic pain, like irritable bowel syndrome or pelvic inflammatory disease, or bladder infections, etc., all of which tend to be more rare entities as a cause of pelvic pain than endometriosis itself!  Surgery was always considered as a last resort, and it was always met with a sense of dread by physicians not comfortable dealing with it surgically.

When I went through my minimally invasive gynecologic surgical fellowship in 2008-2009, my mentors were master surgeons in laparoscopy and robotics who taught me the satisfaction gained with a challenging case or in surgically tackling the difficult endometriosis case, which was typically a patient who had been sent from doctor to doctor without relief either because surgery was avoided or inadequately performed initially.  For the first time in my career, I saw patients actually get better because they were treated with surgery correctly.

I know that there are several surgical techniques to excise Endometriosis, and it appears you specialize in robotic surgery (yay!).  Which method of excision do you prefer (fully removing the lesion and some healthy tissue around it; ablation; cauterization)?

For me, I prefer excision, fully removing the lesion with either sharp dissection (small scissors used with the assistance of the robot), or electrocautery.  Very rarely I will ablate lesions if they are in a particularly challenging area where dissection might incur damage to adjacent tissues.  If I suspect involvement of bowel or bladder or other non-gynecologic organ, I will solicit the help of that particular surgeon.

I prefer the robotic approach because of the enhanced visualization, 3-dimensional view and magnified vision.  Identifying the many appearances of endometriosis is essential.

Recovering from surgery can be a painful and scary experience.  Do you offer and tips or tricks to your patients for their recovery?  Not case-specific, but as a general rule of thumb?

In general, patients should take about 1-2 weeks away from their usual activity and refrain from strenuous lifting or driving while taking pain medications.  A general rule of thumb is if it still hurts, scale back.  The challenge with endometriosis patients is that more times than not, the post-surgical pain is more bearable than their endometriosis-related pain, so much so that they feel amazing even immediately postoperatively.  So, the tendency is for these patients to want to do more rather than allow their bodies to heal.

There are so many theories regarding the cause of Endometriosis.  Which theory(ies) do you believe may be the cause, if any? 

There are at least four predominant theories and evidence to support each.  I believe it can be multifactorial.  I’ll get into more detail on this during my seminar if this is of interest.

Do you feel that Endometriosis symptoms can be controlled by diet and supplements? 

 Sure.  In my opinion, the adoption of healthy living and eating habits will enhance overall wellness and promote healing, no matter the illness.

How do you feel about hysterectomies as a cure for Endometriosis? 

Removal of endometriosis is the treatment for endometriosis.  Hysterectomy (removal of the uterus) does not cure endometriosis. It may result in less pain when painful periods are the main symptom, but it does not cure endometriosis.

Where do you see medical care and treatment headed for Endometriosis over the next 10-20 years? 

Hopefully treatment will head towards more aggressive surgical management as a first step, preferably by highly skilled surgeons with expertise in minimally invasive approaches to treatment.  Promoting awareness of the utility of surgical management amongst fellow physicians will hopefully minimize or eliminate the circuitous path too many patients with endometriosis are sent on.

Any words of advice for Endometriosis sufferers who may be reading this? 

Your symptoms are real, your pain is real.  You deserve to be heard and most importantly to feel better, so, do your research. If you have pain that you no longer want to live with physically or mentally, or pain that is disrupting your quality of life and your doctor hasn’t at least considered endometriosis or hasn’t referred you to a surgeon who treats it, then find another doctor. Also, find a highly skilled, board certified surgeon when you are ready to go the surgical route.

What can we do to help you and the medical community?

Exactly what you are already doing – spread awareness.  Follow and promote members of the medical community who give good, quality, evidence-based information and have the training and expertise to deal with complex issues like these.

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If you would like to contact Dr. Rebeles for a consultation or to ask your own questions about her experience treating Endometriosis, please feel free to do so:

Sonia Rebeles, MD
Minimally Invasive Women’s Surgery
9033 Wilshire Blvd. Suite 200, Beverly Hills, CA 90211
www.SoniaRebelesMD.com
Phone: (424) 285-8535
Fax: (424) 285-8534
Email: drrebeles@soniarebelesmd.com

Dr. Rebeles currently accepts all PPO insurances, cash pay.  (She is in the process of becoming an in-network provider with some PPOs and eventually Medicare, but this takes time).

I would like to extend a personal thank you to Dr. Rebeles, not only for taking the time to respond to these questions, but for doing so with such fervor!  It’s refreshing to find physicians and surgeons who understand so much about Endometriosis, and how best to treat it.

And, as always, together we can do great things!

Yours,

Lisa