Bowel Endometriosis Stories - Finally Receiving a Long-Awaited Diagnosis

The Long Road to a Bowel Endometriosis Diagnosis

Endometriosis occurs when tissue that normally lines the inside of the uterus grows outside of it. This errant tissue responds to hormones just as the lining of the uterus does, building up then breaking down and bleeding each month. But unlike normal menstrual blood flow, which exits the body, blood and tissue from endometrial growths outside the uterus have no way to leave. This causes inflammation, the formation of scar tissue, and sometimes intense pain.

Endometriosis most often occurs in the pelvis but can appear anywhere in the body. One of the most problematic types is bowel endometriosis, when endometrial tissue attaches to the intestines. This can cause debilitating gastrointestinal symptoms that often go unrecognized or get mistaken for irritable bowel syndrome.

The Agonizing Symptoms of Bowel Endometriosis

Some common signs and symptoms of bowel endometriosis include:

• Painful bowel movements
• Constipation and/or diarrhea, especially around your period
• Bloating
• Blood in the stool
• Nausea and vomiting
• General abdominal discomfort

These symptoms tend to flare up during menstruation but may persist throughout the month. Some women develop bowel obstructions that require surgery to clear.

Bowel Endometriosis Mimics IBS

Because the gastrointestinal effects often worsen around womens periods, many doctors mistake bowel endometriosis for irritable bowel syndrome (IBS). However, endometriosis often causes more severe cramping and diarrhea than typical IBS.

Both conditions share traits like abdominal pain, constipation, diarrhea, nausea, and bloating. But key differences provide vital clues:

• IBS doesnt usually cause other pelvic pain while endometriosis does
• IBS symptoms remain consistent rather than fluctuating with the menstrual cycle
• Endometriosis sometimes produces visible bleeding while IBS does not

Yet too often, women get mislabeled as having IBS when they actually suffer from undiagnosed bowel endometriosis.

One Woman Waited Decades for a Bowel Endometriosis Diagnosis

Rachel Egan, author of Be Your Own Best Friend, endured excruciating bowel troubles from ages 12 to 14 before doctors discovered severe endometriosis infiltrating her reproductive organs. She underwent surgeries then to remove endometrial tissue and again at 19 when the growths returned more aggressively than before.

Over the next 20 years, Rachel continued having painful periods, irregular cycles, fatigue and digestive issues. Doctors kept brushing it off as IBS despite the worsening diarrhea and constipation.

Finally, at 40 years old, Rachel got referrals for proper gastrointestinal testing. A colonoscopy uncovered a stricture so narrow that only a childs scope could pass through it. Further imaging found several endometrial growths constricting her bowel.

After 40 years, Rachel finally had the diagnosis of bowel endometriosis shed needed all along. Treatment brought tremendous relief through both medication and surgical removal of the endometrial tissues choking her intestines.

Too Many Women Share Rachels Endometriosis Struggle

Rachels story of misdiagnosis echoes those of millions of women trapped in a cycle of painful symptoms continually attributed to IBS or normal menstrual troubles. For example:

• Michelle, struggling with cramps and abdominal pain since age 9, had doctors recommend birth control pills or psychotherapy for decades before finally confirming endometriosis at 35 via laparoscopic surgery.
• Pamela began suffering constant fatigue, bloating and diarrhea in high school. Doctors insisted nothing was wrong, even naming it IBS though standard tests for that kept returning negative. At age 42, after over 25 years living with daily illness, Pamela was diagnosed with severe bowel endometriosis.
• Kates heavy, agonizing periods began at 12. Over the next 18 years, despite extreme abdominal and pelvic pain, numerous doctors labeled her issues as merely bad PMS. Finally a new gynecologist identified extensive endometriosis throughout her pelvis and intestines.

Seeking a Bowel Endometriosis Diagnosis

Since most women endure over seven years suffering endometriosis before diagnosis, patients must persistently advocate for proper testing. Key steps in seeking a firm conclusion include:

• Tracking symptoms: Record menstrual cycle details plus intestinal troubles to identify patterns suggestive of endometriosis versus IBS.
• Patience: Recognize diagnosis takes time and you may need to evaluate several gynecologists until finding one truly knowledgeable about endometriosis.
• Direct communication: Clearly describe worst symptoms, detailing how severely daily life gets disrupted.
• Accept no shrug-offs: If a doctor tries brushing off concerns as just stress/anxiety/IBS, immediately seek another opinion.
• Seek specialty care: Obtain referrals specifically for gastroenterologists and endometriosis excision experts rather than general OB-GYNs.
• Consider surgery: Laparoscopic visualization can provide definitive diagnosis when symptoms suggest endometriosis despite normal scans or bloodwork.

Catching a case of bowel endometriosis early is challenging but offers huge rewards in pain relief. Unfortunately, due to lingering stigma around menstruation, many physicians remain undertrained on assessing patient-reported symptoms that signal endometriosis.

Hungry for Hope Living With Bowel Endometriosis

Even after diagnosis, bowel endometriosis requires attentive lifelong management. Rachel battled discouragement but found hope in connecting with others also navigating endometriosis ups and downs. She suggests trying strategies like:

• Finding community support groups to share experiences and tips for coping
• Working with a therapist experienced specifically with chronic pain
• Exploring Chinese medicine, acupuncture, physical therapy for pain management
• Focusing diet on anti-inflammatory foods that dont trigger gut symptoms
• Cultivating self-care practices like light exercise, adequate sleep, saying no to maintain energy

Rachel admits days still feel dominated by dealing with bowel endometriosis symptoms. Yet shes determined to thrive despite the illness. Im learning how to show myself compassion, she says, How to be my own best friend.

Her hard-won advice? Advocate fiercely for your health. And dont judge yourself for what you can and cannot do. Find happiness along the journey.

Disclaimer: This article is for informational purposes only and does not constitute medical advice. Always consult with a healthcare professional before starting any new treatment regimen.