# My report on endo (long but useful)



## JenS (Dec 18, 2000)

I am enrolled in a graduate-level course, and as my final assignment, I had to pretend that I was writing a magazine article for a health publication. I thought I would share it with you....hope you enjoy and learn something! Remember, this is not for publication and should nto be duplicated! (If you need a list of references please let me know).*Endometriosis: It's More Than Just Bad Cramps*_Frequent urination, allergies, and irritable bowel syndrome -the unknown symptoms of endometriosis_ I have been called a "hypochondriac" by some and misdiagnosed by others. For years, I suffered with frequent urination, painful bowel movements, and chronic diarrhea. It took over ten years before I was properly diagnosed with endometriosis. My story is not uncommon.*The basics of endo* Let's back up to the 7th grade Biology. We learned that a woman sheds endometrium tissue each month through her menstrual cycle. However, patients with endo (short for endometriosis) find this endometrium tissue outside of the uterus. The lesions come in all colors, and the exact cause is still unknown. The most common symptom of endo is pelvic pain. Many women have pain during the entire cycle and not just during the few days of menstruation. The amount of pain that a woman experiences with endo is not necessarily related to the extent or size of the growths. (In my situation, I had intense pain but few endo lesions!) "This pain can be and is debilitating and excruciating," says Carey, an endo patient from North Carolina who has undergone over five surgeries for endo. "I hurt so bad, all day long, all night long, everyday, and every night." Many people-including doctors-still think of endometriosis as a "reproductive disease" since the most common symptoms are painful periods, infertility, and pain with sexual activity. But today, women with endo are also suffering with chronic diarrhea and/or constipation, inflammation of the bladder, and seasonal allergies.*The other problems* "It's no wonder going to the bathroom was torture," says Debra when her doctor discovered endo on her bowels during was her second laparoscopic procedure. Like many women with endo, Debra experienced intestinal upset, gas, bloating, and nausea. "The gastrointestinal symptoms are usually at their worst at the time of the period," says Mary Lou Ballweg, cofounder of the Endometriosis Association (E.A.). Bowel problems are also present when endometriosis lesions grow on the intestines, or adhesions (bands of scar tissue) pull on the bowel. The best way to treat these problems is to treat the endo itself. Others suffer from urinary problems such as frequency, urgency, and pain when the bladder is very full or very empty. Urinary pain can be caused by endo on the bladder or by Interstitial Cystitis (IC). Ice packs, heating pads, and anti-inflammatory medicines such as Advil may help to ease the discomfort.	Since the symptoms of bladder endo and IC can mimic those of a urinary tract infection, it is important that you see consult your physician for a diagnosis. If bladder endo is left untreated, the ureters can be obstructed and lead to kidney failure.	There may also be a correlation between endo and allergies. According to a 1999 study completed by the Endometriosis Association, 57% of North American women with endo also suffer from allergies. Now, bear in mind that just because you have a sniffle or occasional hay fever does not mean that you have endo, but this research indicates that endo may in fact be an autoimmune disorder. That means that our own body could be fighting against itself!	"I had severe allergies and I never knew that it was associated until now," say Darlene, a 37-year-old woman from Baltimore. "If you are suffering through this (disease), keep searching until you find a doctor that knows what to look for."	As you see, endo not only wreaks havoc on your reproductive organs, it can affect your entire body.*Could you have endo?* In many cases, women do not have any symptoms of endometriosis. And yet others have symptoms not related to their female organs, like urinary and bowel troubles. You may be one of the millions of women who suffer from this puzzling disease, so talk to your doctor if you suspect endometriosis.*Conventional Treatments* Although Ibuprofen and related pain relievers are available over the counter, you may need something stronger. Ask your doctor to prescribe pain medications to help ease your symptoms. Also, it is important that you see your doctor whenever pelvic pain occurs, even if you have been previously diagnosed with endo. Other sources of pain include ovarian cysts, fibroid tumors, adhesions, tipped uterus, uterine infections, and other factors.	In addition to treating the pain of endo, your physician may prescribe hormonal treatments that aim to stop ovulation. These include birth control pills, estrogen, Danazol (a testosterone derivative) and Lupron (a new class of drug named GnRH). Unfortunately, medications may only provide temporary relief.	"The reality, however, is that the treatment options are limited and the medications currently available rarely provide a cure," states Gynecologist Stephen Kennedy of the University of Oxford in _Endometriosis: A Key to Healing Through Nutrition_ (Element Books, 1999). *Alternative treatments* Many women are now turning to alternative treatments to ease the symptoms of endo. Acupuncture, acupressure, TENS (transcutaneous electrical nerve stimulation), spinal alignment, exercise, and massage are being used with successful results.	Diet also seems to be effective for many women. Including fish in the diet, or taking fish oil capsules, benefit many women. "Fish oil has been shown to repair cell membranes, prevent the formation of large blood clots, and reduce the number of pro-inflammatory prostaglandins," writes Environmental Coordinator Kimberly Collier in a recent Endometriosis Association Newsletter (Volume 22, No. 4). She suggests trying ocean fish over fresh water fish. *Finding ways to cope* In addition to coping with the physical symptoms, women must find a way to cope with their emotions. Speaking to others in a support group is one method of coping with the emotions brought on by a chronic illness like endo. Personal counseling is another option, whereas others, like Ann, find comfort by sharing their story on the Internet. Her _Pearl in the Making_ web site was "designed as a means of encouragement" to help other women with endo go forward in life. Ann relies on her Christian believes to deal with her emotions of anger, fear, and depression.	Some have turned to writing. "I wrote my book on Endometriosis so I could help all of you who are suffering," says Jennifer Lewis, author of _Endometriosis-One Women's Journey_. "You are never alone and you have support." Jennifer also hosts an endometriosis chat on the WebMD web site (www.webMD.com) the second Tuesday of each month at 7 p.m. EST. *And more testing* After years of ultrasounds, urine samples, blood test, CT scans, colonoscopies, barium x-rays, and visiting numerous doctors, I learned that some doctors are still unsure about endometriosis. I had to persuade my physicians that chronic diarrhea, frequent urination, and allergies were part of my battle with endometriosis. I took my health into my own hands. Take charge of your health! Learn the facts and myths. Stay on top of the latest research. Chances are that someone you care about is suffering from endometriosis-and she may not even know it!


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## CaseyL (Jul 23, 2001)

Thanks for sharing that Jen. That was really interesting. I've suffered for at least 10-15 years with this and was just diagnosed last week.


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## JenS (Dec 18, 2000)

Casey, It is ashame that we all suffer that long before diagnosised. I suffered for over 10 years myself.


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## atp (Jan 18, 2001)

Bravo! That was an excellent article







Very well-written







I hope your prof gives you an A!


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## JenS (Dec 18, 2000)

Thanks for the encouragement and praise, ATP!


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## Nat (Sep 29, 2001)

Hi Jen,I was late reading your article but found it very interesting. I have been battling with pelvic paind and D/C for the last three months. Went through a series of tests (colo, pelvic and vaginal ultrasounds, blood test) and nothing was found. I've got a few more tests to go... Twelve years ago, I had similar symptoms and eventually ended up having a lap to determine if endo was present (nothing was found). My present surgeon is now telling me that there is no way that I could have developped endo in 12 years so she said that a lap is out of the question. The pain is so bad during sex, and consequently after sex that I just can't handle this anymore (I sometimes bleed after intercourse but very rarely and mostly before or after my period). I know the results of my pap test and ultrasound were normal, but I yesterday, I decided to call my GP. I am seeing him next week and will insist of seeing a GYN. I will not be in pain for 10 years before they do anything about it... I feel incapacitated enough as it is.Sorry about the long story but what you wrote really stroke a chord...


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## JenS (Dec 18, 2000)

Thank you Nat. Sorry you are going through so much pain, but my advice--find a new doctor!!


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## Chris Fadhley (Nov 13, 2001)

Thanks Jen for sharing this very useful information with us.I am a therapist and it's given me food for thought.chris


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