Endometriosis

Introduction

Endometriosis is one of the most common gynaecological conditions that can either cause an inordinate amount of pain and distress or go unnoticed until other gynaecological factors draw it to the attention of doctors.
It is estimated that approximately 10% of women of child-bearing age have Endometriosis although this figure multiplies three-fold in women with fertility problems.
At one time, Endometriosis was classed as a "Working Woman's Disease", that supposedly only affected the over thirties. 
This is probably one of the main reasons why in the past, the condition has not only been misunderstood, misdiagnosed or treated inappropriately, but also why women like myself had never heard of it until many years after the condition took hold. Thankfully, as advances in treatment are being made, so are doctors becoming more aware that the age old complaint of painful periods and other pelvic complaints may be more serious than just "these things do happen, it's all part of being a woman"!

What is Endometriosis?

Endometriosis is where small parts of the lining of the womb (the Endometrium) become detached and make their way outside of the womb and attach themselves to other organs of the body.
Endometriosis is commonly found on the ovary, the back of the uterus and the supports of the uterus (uterosacral ligaments). It can also be found in the lining of the pelvic organs (the peritoneum), bladder, bowel, fallopian tubes, between the rectum and vagina, the navel and even in the lung.
Every time a normal period occurs, the endometriosis mimics the act and also bleeds. With nowhere for the blood to go, the surrounding tissues become irritated, leading to inflammation and scarring, which in time causes pain and other symptoms even when the sufferer is not having a period. The web-like scar tissues may continue growing and attach pelvic organs to each other or even cover them completely.

What causes it?

One theory is that during menstruation, there is a backflow of blood through the fallopian tubes, spilling into the abdominal cavity where small deposits of endometrial tissue then attach themselves to nearby organs. Another theory is that endometrial tissue can be found in the bloodstream, thereby giving the disease the opportunity to relocate to areas outside of the womb. The third theory is that some deficiency in the Immune System may account for why some women and not others get the disease.
Whatever the theory, the truth is, that so far, the cause of Endometriosis still remains in the realms of the unknown.

What are the Symptoms?

The most common symptoms are:
Painful Periods
Painful Intercourse
Pelvic Pain
Infertility

Other Symptoms include:
Backache
Bloating
Constipation
Painful Bowel Movements
Painful and/or frequent Urination
Blood in Urine
Pain in Leg
Pain in Hips radiating down to groin and legs just above knees
Fatigue
Pain in Shoulder, especially during a period
Chronic Pain
Allergies
Pain around the Coccyx area
Shooting Pain or Cramping in Lower Abdominal area
Nausea
Vomiting
Tenderness/Pain in Anal Region

How is it Diagnosed?

Endometriosis can be hard to diagnose because of the lack of external symptoms, and the fact that its unpredictable symptoms can often be mistaken for other medical conditions. An internal examination can indicate its existence, but a formal diagnosis is made by the surgical means of a Laparoscopy.
During a Laparoscopy, the abdomen is pumped up with Carbon Dioxide gas and a tiny telescope is inserted in the navel area so the pelvic area can be viewed on a monitor. Other tiny incisions in the lower abdominal region may be made to pass instruments that are used to gently manipulate organs for a better view of the areas affected by the condition.
Some time back, the most common description of Endometriosis was 'gun-metal grey lesions' on affected areas. Today, we know it can be black, blue, red, white or non-pigmented.
Since Endometriosis attacks the ovary, benign ovarian cysts may also be present during diagnosis. These cysts can range from the size of a marble to that of a large orange. They are sometimes called 'chocolate cysts' because of their colour. This is a result of being filled with dark brown blood caused by bleeding over a period of time. When a cyst erupts, the blood that spills out can lead to the occurrence of adhesions.



What types of treatments are available?

The good news is that people are now more aware of Endometriosis than they were say 10 years ago. Most doctors now recognise it as a condition in its own right and no longer file it under 'Pelvic Inflammatory Disease'' or some other convenient label. Medical Research and treatment is also moving at a faster pace - although not fast enough as most sufferers will agree.
The bad news is that there is still no cure for Endometriosis, only treatment to help control it or send it into remission.

Medical Treatment:
The purpose of medical treatment is to interrupt hormonal activity thereby reducing oestrogen levels which in turn will cause the Endometriosis growths to shrink.
The Contraceptive Pill is commonly used to treat milder cases of Endometriosis and the patient will have to take it continuously for between 4 to 12 months.
Danazol was the first choice of treatment for many doctors at one time and although very effective,  is poorly tolerated due to its
androgenic (male characteristic) side effects, which include weight gain, hirsutism (hairiness), acne, mood changes, breast reduction and occasionally deepening of the voice, which may be irreversible.
Provera is used in treating mild to moderate Endometriosis and works by mimicking the effects of the hormone Progesterone by repressing the normal cycle of the ovaries, resulting in thinning or shrinking of the Endometriosis. Side effects include: headaches, insomnia, mood swings, hirsutism, weight changes, and hair loss.
Nafarelin (Synarel) is similar to a hormone naturally produced in the brain, but is more potent. It acts on the Pituitary gland by controlling the production and release of Oestrogen. Side effects include: Acne, headaches, hot flushes, a decrease in bone density, reduction in breast size, chest pain and changes in libido.
Like Nafarelin, Leuprorelin (Prostap) acts on the Pituitary gland, thereby affecting Oestrogen levels, which in turn leads to the thinning of the Endometrium (lining of the womb). Some known side effects are: Fluid retention, mood swings, nausea, tiredness, hot flushes, dizziness, joint pains, breast tenderness, a decrease in bone density and changes in libido
Zoladex also acts on the Pituitary gland, thereby decreasing Oestrogen levels and thinning of the Endometrium. Most women find that their periods stop during treatment. Some side effects include: Headaches, pins and needles, vaginal dryness, changes in blood pressure, a decrease in bone density and changes in libido.

Surgical Treatment
This mainly takes two forms:
Conservative Surgery, involves the removal of adhesions and endometrial growths  and the draining or removal of cysts by either a laparoscopy or laparotomy or....
Radical Surgery, involving a hysterectomy with the possible removal of the ovaries. This type of surgery really must be the absolute last resort and should only be contemplated where all other treatments have been exhausted and failed, as endometriosis can still be present in women who have had a hysterectomy and removed both ovaries.


 

What do I do?

Read up on the condition itself, how it affects others, what treatments are available and do not be afraid to ask your GP or Consultant about anything you are unsure of or would like to know more about.
Do not allow anyone to make you feel that you are being 'difficult' or are a hypochondriac.
Do not accept any treatment unless you are comfortable with it or happy to try it out.
Do not let it get you down. There may not be a cure yet but there is always hope.
Do join a support group, or get in touch with fellow sufferers.
Do talk about how you are feeling to family and friends.
Do what you feel is right! Only you know what you are going through and how it makes you feel. Each case of Endometriosis is similar to many but also very different from others

Food for thought!

Did you know that Stone Age women on average had only 40 periods during their lifetime?
Or that little over 100 years ago Victorian women had only 100 in their lifetime?
So far,  I have averaged a whopping 375, with at least another 5-9 years to go!
Have we really evolved that much? Or is it what we are eating and breathing that has become the problem?
Families are getting smaller whether by choice or not, while female AND male fertility problems grow bigger.
Health Authorities and Governments need to take these issues very seriously, because one day there may be no populace to govern!


Endometriosis Pictures

Endometriosis involving the appendix

Endometriosis on the ovary

Endometriosis on small bowel

Right ovary adherent to anterior abdominal wall

Endometriosis on Peritoneum

Click on thumbnail to view larger picture

Pictures from Dr. Cook & Gynecologic Endoscopic Atlas

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