Living with
Endometriosis

Endometriosis is a chronic, gynaecological condition where tissue similar to the lining of the uterus is found outside the uterus, causing severe, debilitating pain. Coupled with the fatigue, depression, anxiety and infertility often associated with the condition, endometriosis impacts the woman’s sexual and reproductive health, quality of life and overall well-being. 

Endometriosis can start as early as a girl’s first period, and symptoms often improve after menopause. At present, there is no known cure for endometriosis, and treatment is available to manage symptoms. 

What is endometriosis? 

The word endometriosis is derived from “endometrium,” the tissue that lines the uterus. Endometriosis is the presence of endometrial-type tissue outside the uterus. 

It can occur on the following sites: 

• superficial endometriosis is found predominantly on the pelvic peritoneum 

• cystic ovarian endometriosis (endometrioma) is found in the ovaries 

• deep endometriosis is found in the recto-vaginal septum, bladder, and bowel 

• in rare cases, it’s found on the diaphragm and in the lungs 

Source: Johns Hopkins Medicine

Each month, this misplaced tissue responds to the hormonal changes of the menstrual cycle, and similar to the endometrium, it also thickens, breaks down, and bleeds. But since there is no way for the tissue to exit the body, it becomes trapped. This causes inflammation, swelling and scarring of the surrounding tissue, eventually leading to the development of scar tissue and adhesions (bands of fibrous tissue that can cause pelvic tissues and organs to stick to each other). In the ovary, this blood can become embedded in the normal ovarian tissue, forming a “blood blister” surrounded by a fibrous cyst, called an endometrioma. 

What are the symptoms? 

The first symptoms that women experience are pain during periods in the abdomen, lower back and pelvic area. Periods become heavier than normal and they experience spotting (light bleeding) between cycles. 

Symptoms may include a combination of: 

• chronic pelvic pain (often correlates to the menstrual cycle) 

• unusual or heavy bleeding during periods 

• severe menstrual cramps 

• pain during and/or after sexual intercourse 

Another well-known symptom is infertility due to its effects on the pelvic cavity, ovaries, fallopian tubes or uterus. It’s estimated that 30-40% of women with endometriosis are sub-fertile. 

There isn’t a strong correlation between the extent of endometrial lesions and the severity or duration of symptoms; women with large lesions may have mild symptoms, while those with few lesions have severe symptoms. Endometriosis can even be asymptomatic. 

• painful bowel movements 

• diarrhea or constipation 

• painful urination 

• back pain during your period 

• abdominal bloating and nausea 

• fatigue 

• depression or anxiety 

Endometriosis stages 

Doctors use the American Society of Reproductive Medicine’s four stages of endometriosis: 

What are the complications of endometriosis? 

There are several medical complications with endometriosis: 

• Chronic pain 

• Fertility issues – besides the presence of endometriosis in the reproductive system, it can also change the body’s hormonal chemistry, affect the layer of tissue lining your uterus where the egg implants itself and cause your body’s immune system to attack the embryo. 

• Bowel or bladder issues, e.g. pain with bowel movements, or blood in the urine or stool. 

• Swelling of the kidney – this happens with endometriosis of the ureter (the tube from your kidney to your bladder). 

• Breathing issues – endometriosis of the lung or diaphragm can lead to shortness of breath, chest pain or lung collapse during menstrual cycles. 

• Stress, anxiety and depression – the time it takes to get a diagnosis, the debilitating pain which affects the woman’s ability to go to school or work or actively engage in social activities, the cost of medical care, the impact on personal relationships, and fertility issues, can lead to mental issues for some women. 

• A slightly increased risk of developing epithelial ovarian cancer (epithelial tissue is the thin lining that covers the outside of an ovary). 

What causes endometriosis? 

The causes of endometriosis are still unknown and there are various theories on why they occur. It can occur as a result of direct transplantation, in the abdominal wall after a caesarean section, for instance. Another theory poses that during menstruation some of the tissue backs up through the fallopian tubes into the abdomen. A third theory is that the endometrial tissue may travel and implant via blood or lymphatic channels, similar to the spread of cancer cells, or even that cells in any location may transform into endometrial cells. 

What are the risk factors for endometriosis? 

The following factors can increase the risk of developing endometriosis: 

• A family history of endometriosis 

• Starting the period at an early age – the risk increases for women who begin menstruating before age 11. 

• Shorter menstrual cycles (the time between periods) 

• Heavy menstrual periods (longer than seven days) 

• Defects in your uterus or fallopian tubes 

• Women who give birth for the first time after age 30 

• Never giving birth 

• Low body mass index 

• Disorders of the reproductive tract 

How is it diagnosed? 

At the first consultation, your doctor will ask you to describe your symptoms and indicate the location of your pain and when it occurs. In South Africa, doctors would consider the diagnosis of endometriosis in all women of reproductive age with symptoms such as pelvic pain, dysmenorrhoea, infertility and fatigue. If endometriosis is suspected, they will do: 

• A clinical examination, including a vaginal/ rectal examination. The doctor manually feels areas in your pelvis for abnormalities, such as cysts on your reproductive organs or scars behind your uterus. (It’s not possible to feel small areas of endometriosis.) 

If the diagnosis is likely based on the symptoms, even if the clinical examination is normal, they will move to further investigations: 

• A laparoscopy* (keyhole surgery) is used to detect the location, extent and size of the endometrial growth. But this is invasive, and not everyone wants to have surgery. 

• A biopsy (where a tissue sample is taken) is often done during a laparoscopy and sent to a lab to confirm the diagnosis. 

• A transvaginal ultrasound is used to diagnose or exclude ovarian endometriomas in patients. 

• An MRI and virtual colonoscopy will be used as part of specific investigations that a doctor may do to exclude or confirm the presence of deep infiltrating endometriosis (DIE) in the bladder/ ureteric/ rectovaginal space/ bowel /extrapelvic areas. 

* Laparoscopy is a minor surgical procedure in which a laparoscope, a thin tube with a camera at the end, is inserted into the abdomen through a small incision. – Johns Hopkins  

What treatment options are available? 

While there is no known cure for endometriosis, there are treatments which can help relieve symptoms and improve the woman’s quality of life. Generally, treatment includes pain management, hormone therapy, surgery and fertility treatment. 

The treatment plan is based on: 

• age, medical history and overall health 

• the extent of the endometriosis 

• the severity of the symptoms (especially pain) 

• plans for future pregnancies 

• tolerance for specific medications, procedures or therapies 

• expectations for the course of the disease 

• personal preferences 

If symptoms are mild, health care providers may only want to observe the course of the disease, (“watchful waiting”) and prescribe pain medication. If the woman is not trying to fall pregnant, a combination of pain medication and hormone therapy will be prescribed. 

1. Pain management 

For pain and inflammation, health care providers would prescribe nonsteroidal anti-inflammatory drugs or other over-the-counter analgesics. Commonly prescribed medications include: 

• ibuprofen 

• naproxen sodium 

• ketoprofen 

• mefenamic acid 

2. Hormonal treatments 

Endometriosis is exacerbated by estrogen and therefore hormonal treatments are used to reduce estrogen production in a woman’s body, suppress the menstrual period or shrink the lining of the uterus and the endometriotic lesions. They do, however, have varying degrees of side effects and for many women, pain relief is only temporary. 

These hormonal treatments include: 

These can be prescribed in combination with each other. 

3. Surgery 

If women are suffering from severe pain or are trying to fall pregnant, surgery may be recommended. Through surgery, all the visible endometriosis and related adhesions are removed to reduce endometriosis-associated pain. Many women do find relief from the pain post-surgery, but the symptoms may return after a few years depending on the severity of the endometriosis. For many women, a combination of surgery and medication work best. Most surgical procedures are done laparoscopically, though, in more-extensive cases, traditional abdominal surgery (laparotomy) may be used. 

Surgical procedures include: 

• removal or destruction of endometrial implants 

• removal of adhesions 

• removal or destruction of ovarian endometriosis (endometriomas) 

• removal of deep rectovaginal and rectosigmoid endometriosis 

• removal of one or both ovaries (oophorectomy) 

• surgery of the bowel or bladder 

• laparoscopic uterine nerve ablation (LUNA) 

• presacral neurectomy (PSN) 

• removal of the uterus (hysterectomy) 

Hysterectomy with the removal of ovaries – In severe cases, doctors may suggest getting a hysterectomy based on factors such as the amount of endometriosis and scar tissue present, failure to respond to more conservative treatment measures, and whether the woman desires to have children. The success of a hysterectomy depends on whether all the endometriosis is removed (outside of the uterus) at the same time as the removal of the uterus and ovaries; if this is not done there is still a chance of having endometriosis. A hysterectomy may relieve symptoms but is not considered a ‘cure’. Having this surgery also brings on immediate menopause (which carries the risk of cardiovascular and other metabolic diseases) and the decision to have a hysterectomy should be carefully considered. 

4. Fertility treatment 

Endometriosis is a common cause of female infertility and fertility treatment will be recommended depending on the woman’s condition and personal situation. In mild to moderate cases, fertility returns once the adhesions, cysts and scar tissue are surgically removed. There are different types of assisted reproductive technologies (ART) available, including intra-uterine insemination (IUI) and in-vitro fertilisation (IVF). 

Does endometriosis go away after menopause? 

With changing hormone levels during menopause, particularly decreased estrogen levels, endometriosis lesions often diminish. Some women no longer experience symptoms, and for others, the symptoms improve. 

However, in some cases, where women are on hormonal treatment or if the woman has scar tissue or adhesions from the disease and/or surgery – symptoms may persist. 

Does endometriosis ever go away on its own? 

Endometriosis lesions can get smaller on their own or the woman may have fewer of them. In a few cases, endometriosis can go away on its own. 

Living and managing 

Endometriosis is a chronic condition that needs to be managed throughout the woman’s reproductive life. Here are a few lifestyle changes that can make a difference: 

1. Home pain management. Warm baths, hot water bottles, and heating pads can help relax pelvic muscles, reducing cramping and pain. 

2. Diet. To reduce inflammation, include foods such as fresh fruits and vegetables, whole grains, nuts and fatty fish such as salmon and herring. Foods to avoid include beef, caffeine, alcohol, gluten and saturated and trans-fats. Eating the right foods and drinking lots of water will also help prevent constipation. 

3. Regular exercise. This improves circulation and helps relieve depression. Low-intensity exercise like yoga, can stretch the muscles in the pelvis, which helps for pain relief and stress reduction. 

4. Stress management. Living with endometriosis is very stressful. Stress is thought to lead to increased inflammation and an imbalance of the gut microbiome, which plays a role in estrogen metabolism. Managing stress through tools such as mindfulness, personal therapy or joining a support group can help to deal with the stress of living with the condition. 

5. Alternative healing modalities. Many women do find relief with alternative therapies, but it’s best to consult with a health care provider before starting any new modality or supplementation.