Category: FAQs

What are the most common symptoms of endometriosis?

Some of the more common symptoms of endometriosis are: ->PAIN-which can be experienced before or during periods or continuously throughout the month; the pain can be a typical low pelvice cramping, pain with sexual intercourse, with bowel movements, lower back pain, or merely with movement.

  • INFERTILITY-Many women have difficulty conceiving and may never become pregnant despite invasive, risky and expensive medical procedures and treatments.
  • BOWEL/BLADDER COMPLICATIONS-diarrhoea, constipation, rectal pain or pain with bowel movements, symptoms of bowel obstruction or pain with voiding may occur; it has sometimes been mistaken for appendicitis
  • HEAVY OR IRREGULAR BLEEDING
  • FATIGUE, LOW ENERGY, DIZZINESS, HEADACHES
  • LOW RESISTANCE TO INFECTION
  • NAUSEA, ABDOMINAL BLOATING
  • LOW GRADE FEVER
  • ANGER/FRUSTRATION with chronic disease, missed time at work, decreased energy for home/family life

Why do people get Endometriosis?

No one knows why people get endo, or what causes it. Perhaps one day these questions will have answers. Until then, research on endometriosis needs to continue to be done. Research is underway in several centres across the world looking for genes that may make people susceptable to endometriosis, if successful this may well hold the key to a cure or even a test to see if someone will get it in the near future!

Who gets Endometriosis?

Endometriosis knows no bounds and affects women of any age, race, or class. It is not fatal but it certainly can cause a lot of problems for the woman who has it. Endometriosis can be triggered at any age once puberty starts – it is unusual for it to be triggered to such a degree as to cause discomfort before then. It happens to women of all races, however some recent studies imply some races are more susceptable than others – If we get proper numbers from such studies we will post on the site to inform you – right now this information seems to be very vague so not worth going into at the moment.

Why produce this site?

This site is produced to help everyone around the world understand what Endometriosis is and to increase world wide awareness about the disease. This site is also designed to help offer support to those with the disease and those who are affected by the disease (partners,spouses and parents etc..) The site was created back in 2001 ish because there was a severe lack of information on endometriosis on the Internet and especially practical information with real viewpoints rather than conjecture by people without endo. Since then the site has grown consistently keeping up with advances in our knowledge and in advances in medicine where possible. Now there are many similar sites, but we hope this site offers the support needed to sufferers and welcome any suggestions on content or advice.

Now as times have moved on we are on the third incarnation of the site – and we are keeping it more up-to-date than ever.  Information is a lot easier to find about endometriosis now, but there is still a lack of proper life stories and experiences out there, there is now a lot of opportunistic sites which offer quick fixes for this incurable malady – the latest update of the site is done with an element of hope, as our personal experiences have shown there is life with Endo – and real hope.

– Michael & Arianna

Stages of Endometriosis

Endometriosis is generally recognised to have four stages, some doctors may talk of five stages where stage 4 is taken a step further – below is our understanding of the four stages.

Stage One Endometriosis

A few cells/implants are present, often in the pelvic area, even at this stage some women can suffer significant symptoms.  Often after surgery women to remove the cells/implants are back to stage one (assuming surgery is taken to tackle the latter stages).

Stage Two Endometriosis

Endometrial cells are found in more areas, often on one or both ovaries.  At this stage fertility may start to be affected due to these.

Stage Three Endometriosis

More cells are found in the pelvic area and can be seen more easily during diagnostic laproscopy.  Pain is often severe and fertility is often impaired as a result of the pain and distress due to the spreading of the cells.

Stage Four Endometriosis

This is the most severe stage, often organs are joined by fibrous strands due to the spread of the endometriosis.  Inflammation is often extensive due to the irritation of the organs as the body reacts to the cells.  At this stage fertility is almost certainly affected alongside severe pain. (It should be noted that due to the variance of endometriosis it is possible to be at Stage 4 and not be affected).

These stages are a rough guide and give you an idea when someone talks about stages.  With endometriosis someone can be stage one and have the same symptoms as someone in stage 4, it all depends where the cells are and so what is irritated or damaged as a result.

What is Endometriosis?

This post just covers what Endometriosis is, you will find other information on the site about symptoms and treatments.

Endometriosis is the abnormal growth of endometrial cells that spread to areas in the body where they do not belong.

Usually endometrial cells exist within the lining of the womb and are shed during menstruation (period) – whilst they exist and are shed they do not cause endometriosis (they are supposed to exist in this situation).

Endometriosis cells can grow in many areas of the body, they have been reported in the brain, eyes , nose and more commonly in fallopian tubes, the outer surface of the uterus, pelvic organs, the ovaries,  colon, bladder and the sides of the pelvic cavity.

As normal during menstruation these cells will become filled with blood and may bleed, unfortunately when they are present elsewhere in the body this can lead to pain due to inflammation and other complications.  Often as a result of this symtons are cyclical – especially initially and is often mis-diagnosed as “period pain” or “cramps” etc…  It is worth noting that symtpoms can occur at any time and do vary from person to person, this is one of the reasons why we need sites like this!

The Encounter

The Encounter

Or: How to get Your Doctor to Listen

It is important to note that the following are only suggestions. They are in no way intended to be construed as medical advice.
You do not need to be a diagnosed patient to use these suggestions – please adapt to suit your own needs.

——————————————————————————–

We’ve all been there: draped in a paper gown with our clothes and our dignity in a little pile on the chair next to the cold, uncomfortable table we wait (and wait – and wait) for the doctor on. When the doctor finally arrives for your allotted 15 minute visit, you try to cram as much information into one sentence as you can – while enduring invasions from cold speculums and other instruments of torture. When the pelvic exam is over, the doc stands up and announces cheerily, “everything looks great! See you in 6 months!” You get dressed and wonder if he actually heard your complaints of pelvic pain, irregular bleeding, medication intolerance, etc.etc. You go home feeling worse than you did before you got there and wonder if you will ever get help from the medical establishment.

This is a sad reality of life with this disease for many of us. Did you know the average delay in diagnosis for an Endometriosis patient is a staggering 9 years?

So how do we become partners in our healthcare and get our physicians to listen? Believe it or not, it is possible!

First, Find a Doctor who can Successfully Treat your Endometriosis

OBGYN is the discipline that primarily treats Endometriosis. You may also want to consider seeing a Reproductive Endocrinologist or other health care professional depending upon your own situation; however, the questions below are formatted with an OBGYN in mind. Adapt to whichever practitioner you might be seeing.

The best Endo doctor referrals seem to come from word of mouth. Talk to other Endo patients and find out who their doctor is, what they think of him/her and if they would feel comfortable recommending you. Contact Support Groups in your community, talk to the Endometriosis Research Center, search internet message board communities for positive references, call your local hospital, state medical board and even the AMA if you need to. There are several Endo experts out there, many of whom take various forms of insurance. Seek and ye shall find a practitioner to suit your needs.

Get to Know Your Doctor’s Capabilities

It is important when selecting a specialist to treat your Endo that you are aware of his/her capabilities in treating the disease. Some questions you may want to bring along with you to the appointment include:

How much of your practice is dedicated to obstetrics? How much to gynecology? This can be helpful in determining whether or not your doctor will be sent off to the delivery ward during your appointment time…this happened to me on too many occasions to count; usually after I had been in the waiting room for upwards of an hour already.
How familiar are you with the disease? Do you have many Endo patients? Do you keep up on the latest information surrounding the disease?
What do you believe the proper course of treatment to be?…one note here; if the doc says “pregnancy!” or “hysterectomy!” without even examining your records and dismisses all other methods of treatment, you may want to thank them and see yourself to the door immediately.
What method of surgery do you utilize to remove the Endometriosis lesions?…if you believe excision to be more successful than simple cauterization or ablation, then you would likely wish to select another doctor who does perform that type of surgery.
Do you have colleagues consult in the OR with you in the event that the disease presents itself in an area outside of your expertise?…ie. bowels, bladder, etc. – often, surgeons leave Endo in these areas to professionals who are better suited to treat it, such as gastroenterologists and urologists/urogynecologists, for instance.
Do I have access to all of my medical records at any time I wish?
Other things to consider…do you feel comfortable talking with the doctor? Do you think that you will be able to be an active partner in your healthcare with that particular healthcare provider, or do you feel as though “they are in charge?” There is a long-standing joke in many patient circles: “what’s the difference between God and a doctor? God doesn’t think he’s a doctor.” If your physician gives the impression that you will have no say in your treatment, then they are probably not the doctor for you.
If you’re not already diagnosed…

…tell your doctor what you are feeling and why you suspect you might have Endo. Do you have any of the following symptoms?

Reproductive/bowel/urinary tract Endometriosis

chronic or intermittent pelvic pain
dysmenorrhea (painful menstruation is not normal!)
infertility, miscarriage(s), ectopic (tubal) pregnancy
IBS-type symptoms (abdominal cramping, bloating, diarrhea, constipation, painful bowel movements, sharp gas pains)
dyspareunia (pain during intercourse)
pain after intercourse
backache
leg pain
blood in stool
rectal bleeding
tailbone pain
blood in urine
tenderness around the kidneys
painful or burning urination
flank pain radiating toward the groin
urinary frequency, retention, or urgency
hypertension
Lung Endometriosis
coughing up of blood or bloody sputum, particularly coinciding with menses
accumulation of air or gas in the chest cavity
constricting chest pain and/or shoulder pain
shoulder pain associated with menses
shortness of breath
collection of blood and/or pulmonary nodule in chest cavity (revealed under testing)
deep chest pain
Sciatic Endometriosis
pain in the leg and/or hip which radiates down the leg (this symptom is concurrent with both sciatic and inguinal Endo)
External (skin) Endometriosis
painful nodules, often visible to the naked eye, at the skin’s surface. Can bleed during menses and/or appear blue upon inspection (skin endo)
General, non-specific symptoms
Fatigue
chronic pain
allergies and other immune system-related problems
Surgery is still currently the only way to confirm a diagnosis of Endometriosis. If your doctor wants to place you on Lupron or another GnRH prior to obtaining a surgical diagnosis, you may want to rethink becoming his/her patient. Most Endo experts believe it is not only a poor method of diagnosing the patient, it is also unethical to treat an undiagnosed patient with such drastic means.
How to talk to Your Doctor

Remember that you are both human beings; don’t place any unreasonable expectations on yourself or the doctor. By working together to treat your case the best way possible, you can reach a successful level of management of your Endo.

If possible, it is helpful if you go to your appointment with a prepared set of questions to ask, a journal or diary of your symptoms over a period of time, and perhaps a pain journal as well.

Following are some examples of questions to consider when meeting with your doctor for the first time, questions to ask regarding surgery or other procedures, and a sample pain journal which you may want to adapt for your own usage.

When Meeting for the first time

Do you have medical records from previous physicians throughout your treatment? Bring them.
Explain why you are there. What are your symptoms, concerns, fears? How long have you been experiencing these problems? Be specific.
Don’t be afraid to ask questions.
Indicate that your wishes to be a partner in your treatment plan. When discussing options, always ask what else is open to you and choose the option you feel most comfortable with.
Surgery Questions
What is the reason for my surgery?
What exactly will be done during the surgery? For instance, if the surgery is a hysterectomy, will it be total or partial? Stress your wishes prior to surgery and put in writing what your understanding is…if you are going for a diagnostic laparoscopy and do not wish to wake up with a hysterectomy done without your permission, let them know that!
What pre-op procedures will be done? Do I need to store some of my blood? What type(s) of incision(s) will be made?
What type of anesthesia is being used?
Am I at high risk for any complications? If so, why, and what are they?
How do you expect to deal with any unforeseen complications, should they arise?
How much pain can I expect to be in post-operatively?
How can I lessen the pain? What are my post-op restrictions?
Will I have bowel or bladder problems afterwards?
Who will be in the operating theater to assist? What specific capabilities will they bring to the surgery?
When can I expect to return to work?
When can I expect to engage in intercourse?
When can I expect to return to my exercise regimen?
Are there post-op food or liquid restrictions?
Will you be provided with a prescription for painkillers prior to surgery, so you don’t have to fill it on your way home from the hospital?
How can I help to prepare my body and myself for the surgery?
Remember, you will get basic answers to all of these questions and the others you think of…no two patients are alike and so the answers cannot be assumed to be the standard for everyone.
Medical Therapy Questions

What is the reason for placing me on this drug?
What exactly will this drug therapy accomplish? For instance; is it for pain relief, or will it actually work to shrink the lesions?
What side affects am I at risk for? i.e. fatigue, weight gain/loss, loss of libido, mood swings, physical changes, etc.
Are there any food, liquid or other drug interactions? Any other contraindications?
How long is the course of therapy? Can I stop anytime?
Will this therapy be followed up by therapeutic surgery or other method of disease maintenance?
Remember, you will get basic answers to all of these questions and the others you think of…no two patients are alike and so the answers cannot be assumed to be the standard for everyone. Please remember that Endometriosis is currently incurable, and no drug therapy is a guarantee to be symptom-free for any specific amount of time.
Keeping a Pain Journal

This might be helpful in documenting your pain and being able to relay your situation to your doctor.

Some words to describe pain:

dull ache
itching
cramping
constricting
burning
stabbing
nagging
pinching
shooting
throbbing
Think about how much pain affects your daily activities.
How much pain do you have on an average day?
How often do you have the pain?
Is there any time of day that the pain is worse?
Do any activities set your pain off?
Does the pain come and go?
What helps alleviate the pain?
How upsetting and disrupting is the pain to you?
What do you believe causes the pain? ie. cysts, Endometriosis implants, adhesions, scar tissue, etc.
Does pain interfere with your personal routine? ie. brushing your hair, eating, getting dressed
In your pain journal, try keeping track of when you experienced the pain and the level of pain experienced. For instance:
Use the following ratings to gauge your pain: 1-mild, 2-moderate, 3-distressing, 4-horrible, 5-unbearable

TIME OF DAY PAIN OCCURRED: 4 p.m.
PAIN RATING: 3
WHERE WAS THE PAIN: lower right quadrant
WHAT WERE YOU DOING? reaching for something
DID YOU TAKE PAIN MEDS? HOW MUCH: none
WHAT WAS THE PAIN RATING AN HOUR LATER? 2
COMMENTS? seems to be happening more and more frequently; could be adhesions?

I have found that most doctors are in the business of helping people because they truly want to. There are, as with any profession, a few bad apples out there…but don’t let them spoil the bunch. If you are not happy with your doctor, find another.

Some noteworthy specialists with excellent reputations in the Endometriosis community include:

Drs. Deborah Metzger
Helena Women’s Health Specialty Center
780 Welch Road
Palo Alto, CA 94304
650/833-7900
www.helenahealth.com

Andrew S. Cook, MD, FACOG, is the Founder and Medical Director of:

Vital Health Institute

15055 Los Gatos Blvd., Suite 250
Los Gatos, CA 95032
(408) 358-2511
http://www.VitalHealth.com

Drs. Robert Albee & Tom Lyons
The Center for Endometriosis Care
1140 Hammond Road
Bldg F Suite 6230
Atlanta, GA 30328
877/212-9900
www.centerforendo.com

Dr. Herbert Goldfarb
Montclair Reproductive Center
29 The Crescent
Montclair, New Jersey 07042
973/744-7470

Dr. Jose M. Colon
The Center for Reproductive Medicine
Department of Obstetrics, Gynecology and Women’s Health
214 Terrace Avenue
Hasbrouck Heights, NJ 07604
888/777-8922

Dr. David Redwine
St. Charles Medical Center Endometriosis Treatment Program
2500 NE Neff Road
Bend, Oregon 97701
541/382-8622
www.scmc.org/endo.html

Dr. Nabil Husami
Center for Endometriosis Research & Treatment
Columbia University Medical Center
622 W. 168th Street – PH 16
NYC, NY 10032
212/305-3636

Drs. Charles Koh and Grace Janik
Reproductive Specialty Center
2315 North Lake Drive, Suite 501
Milwaukee, Wisconsin 53211
www.reproductivecenter.com

Dr. Daniel C. Martin
University of Tennessee at Memphis
1717 Kirby St. Suite 100
Memphis, TN 38120
901/751-0300

Dr. Mark Perloe
Atlanta Reproductive Health Centre
285 Boulevard NE, Suite 320
Atlanta, GA 30312
404/265-3662
www.ivf.com

Dr. Paul Dmowski
The Institute for the Study and Treatment of Endometriosis
2425 West 22nd Street
Oak Brook, IL 60523
630/954-0054
www.endometriosisinstitute.com/

Drs. Harry Reich and CY Liu
Advanced Laparoscopic Surgeons of New York, LLC
872 5th Avenue
New York NY 10021 USA
877/527-7874
www.adlap.com

Dr. C. Paul Perry
C Paul Perry Chronic Pelvic Pain Clinic
Brookwood Medical Center
Birmingham, Alabama
205/877-2950
www.surgeries.com/perry.shtml

Dr. Mark Wayne Surrey
Reproductive Medicine and Surgery Associates
9675 Brighton Way, #402
Beverly Hills, CA
310/277-2393
www.surreymd.com/

Hopefully, some of the above guidelines and examples will assist you in finding a great doctor who will partner with you to successfully treat your Endo!
Copyright (c) by Heather C. Guidone. All Rights Reserved. Do not Reproduce Without Express Permission From Author.

 

Updated information in regards to Dr Andrew Cook and Dr. Deborah Metzger   – many thanks to Valeria at the Vital Health Center for pointing out our mistake and giving us correct information.

lupron effects Contributed by jennypeck

i was diagnosed with endometriosis on march 17 2005. my doctor started my lupron shots after my laproscopy and the side effects have been pretty horendous. i was just wondering if anyone else has had some problems with the shot. not long after my first shot i developed hot flashes, mood swings, leg pains, severe depression, anxiety and really bad insomnia. its just been pretty difficult to deal with all around. im pretty much pain free for now but the after effects have been hard on me.

Danazol – license not revoked

As some of you may have heard, or read, Danazol has now been made into a 2nd line defense for endometriosis.

You can only have it prescribed it if you have had all other treatment for endometriosis and they have failed.

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