Did you know that it could take you about 7.5 years to get endometriosis diagnosed, from the first time you see your doctor? Endometriosis is mostly found among girls and women of childbearing age; teenagers and young women in their early 20s are not too young to have endometriosis. It is less common among women who have gone through menopause. While treatments do exist to manage this condition, if it is not diagnosed on time, the condition can progress and become more difficult to treat. It could then become a long-term condition that could have a severe impact on your life. However, the good news is that NICE (the UK’s National Institute of Health and Care Excellence) have published guidelines to help doctors reduce this delay by providing clear possible actions when symptoms of endometriosis are encountered.
We’re sure you want to know more about this condition and the complications that could come with it. This is why we’ve taken time to get you detailed information from several medical experts. Read on to find out more about endometriosis.
What is Endometriosis?
Endometriosis is a painful disorder that occurs when the tissue that lines the womb is found elsewhere in the body, such as your fallopian tubes, ovaries and your pelvis or lower abdomen. When this happens, the endometrial tissue continues behaving as it would if it was still inside the uterus; it gets thick, breaks down and bleeds out during your menstrual cycle. However, since the tissue has no way to leave the body, it becomes trapped, irritating the tissues surrounding the ovaries to develop scar tissue and adhesions which could cause pelvic tissues and organs to stick together.
The symptoms of endometriosis can vary. Some women are badly affected, with severe pain especially during menstruation, while others might not have any noticeable symptoms.
Personal Story of Alice living with Endo
One thing that I particularly struggle is with couple things. I cannot enjoy or sometimes even have sex when I want to because it is super painful or sometimes my period just doesn't stop. I have period for 10 days in a row. Ruins the whole mood and atmosphere. My partner is super understanding but i do get frustrated making excuses all the time.
Alice, 29 years
What Causes Endometriosis?
There is no proof about what exactly causes endometriosis. However, there are various theories which includes:
- Retrograde Menstruation: This occurs when the menstrual blood which contains the endometrial cells or womb lining flows back into the pelvic cavity through the fallopian tubes instead of leaving the body as a period. When this occurs, the endometrial cells stick to the walls and surfaces of your pelvic cavity and other pelvic organs. They grow and continue to thicken just as they normally should and bleed during each menstrual cycle.
- Endometrial Cells Transport: This is when the endometrial cells are moved to other parts of the body by the lymphatic system or bloodstream.
- Genetic: Another theory of the cause of endometriosis is that it could run in families and can be found among people of a particular ethnic group. With this theory, it means you are likely to have endometriosis if someone in your biological family does.
- Peritoneal Cells Transformation (Induction theory): This involves the proposition by experts that immune factors or hormones promote cells lining the inner side of your abdomen to transform into endometrial cells.
- Embryonic Cell Transformation: This is another theory that embryonic cells might transform into endometrial cell implants during puberty with the help of hormones such as estrogen.
- Surgical Scar implantation: this theory proposes that endometrial cells could attach to a surgical incision made during surgeries like hysterectomy or Caesarean section.
Symptoms of Endometriosis
The symptoms of endometriosis can start during the early stages of adolescence or later in adulthood. It can be cyclical occurring each time you have your menstrual flow, or it can occur at all times. The impact, and symptoms can vary depending on where the tissue is located in your body. Its impact can go as far as causing infertility or difficulty getting pregnant, especially when the ovary is involved.
- Painful sexual intercourse, or pain after sex.
- Irregular periods or heavy periods; Endometriosis can cause you to occasionally experience heavy periods or bleeding between periods. You can find out more about irregular periods here
- Period pain that stops you doing your normal activities; this could occur causing you a severe pelvic pain that can’t be helped by pain killers. It can start before your period and last for several days during your period.
- Premenstrual Lower abdominal pains.
- Period cramps occurring one or two weeks around menstruation.
- Difficulty getting pregnant
- Uncomfortable bowel movements/pain when peeing
- Lower back pain occurring during menstrual cycle.
Endometriosis can be mistaken for other conditions like Ovarian Cysts or Pelvic Inflammatory Disease (PID) because they all cause pelvic pain. It can also be mistaken for Irritable Bowel Syndrome (IBS)..
Endometriosis can also make you experience fatigue, bloating, diarrhoea or nausea especially during your menstrual periods. It can also make you experience bleeding when you visit the toilet. It is important to remember that severe period pains are not normal, and you should always talk to your GP if your period pain is severe.
Some of these symptoms may come with your normal menstrual flow. However, the severity of pains that comes with them is not necessarily a reliable indicator of this condition, or its severity, as some women with endometriosis experience no symptoms at all. Also read this article to see the links between endometriosis and your period.
Endometriosis can be mistaken for other conditions like Ovarian Cysts or Pelvic Inflammatory Disease (PID) because they all cause pelvic pain. It can also be mistaken for Irritable Bowel Syndrome (IBS). IBS causes diarrhea, abdominal cramping and constipation and can come together with endometriosis making it difficult to diagnose endometriosis. That is why it is very important that you follow our advice of going for regular gynecological check-ups to enable your doctor or gynecologist to monitor any changes in your body, especially when you experience two or more of these symptoms that you’re worried about.
What happens if Endometriosis is not treated?
Infertility is a common complication caused by endometriosis if you don’t get it checked out. Mayo Clinic says that about one third to one half of women who have this condition find it difficult to get pregnant. So, it is important to get yourself checked out as early as possible.
Endometriosis is not a form of cancer. However, there is some evidence suggesting that endometriosis can very slightly raise the risk of a woman developing ovarian cancer – however the risk is very low. According to a study published in The Lancet, the rate of ovarian cancer in the general female population is 1.3 percent, and 1.8 percent in women with endometriosis. Although rare, another type of cancer — endometriosis-associated adenocarcinoma — can develop later in life in women who have had endometriosis.
Fertility and Endometriosis
Many women wrongly think that having endometriosis means that you will become infertile, but this is not the case. Most women with endometriosis go on to have children. Minimal to mild endometriosis is common, with similar chances of conceiving children naturally, as for women with no endometriosis. When endometriosis becomes more severe, with scar tissue adhesions occurring more often, the ability to conceive naturally will decrease. However, natural conception can still happen for a woman, even with severe endometriosis. Generally, it is believed that fertility problems increase with the severity of the disease and with age – as with women with no endometriosis.
The main factor that influences fertility is a woman’s age. Fertility declines rapidly in the mid to late 30’s when the number and quality of eggs decrease.
If you’re worried you may have endometriosis, and you are having difficulties getting pregnant, you should go and talk to your doctor, sooner rather than later.
It can be difficult to diagnose endometriosis because the symptoms can vary considerably, and many other conditions can cause similar symptoms.
To find out if you really have endometriosis your doctor can carry out tests; a general assessment of your family history with the condition, a physical examination, or a laparoscopy, where a surgeon passes a thin tube through a small cut in your skin so they can see any patches of endometriosis tissue. A laparoscopy is the only way to be certain you have endometriosis since it has similar symptoms to other conditions like ovarian cysts and pelvic inflammatory disease. An ultrasound can identify cysts associated with endometriosis, but it cannot definitively diagnose endometriosis.
Currently, there’s no cure for endometriosis. Women with this condition can only receive treatments to reduce the severity of symptoms. Treatments will be based on the symptoms you are experiencing, and they include;
- Use of Painkillers
- Hormone treatment using Hormonal medicines and contraceptives
- Surgery to remove patches of endometriosis tissue
- Surgery to remove parts of affected organs e.g. hysterectomy
While medications do not improve fertility, some women with endometriosis who have the endometrial tissue surgically removed are able to conceive.
But if you find yourself in this condition and this isn’t an option, you might consider fertility treatments or IVF to have a baby is also advisable to have children early if you discover that you have endometriosis since it’s a progressive condition with the symptoms worsening over time thereby making it more difficult for you to conceive on your own.
When to see your doctor?
If you are having symptoms of endometriosis especially when they’re stopping you from your normal daily activities, see your doctor immediately. Writing down the symptoms you’re experiencing before seeing your doctor may help. You can use the pain and symptoms diary from Endometriosis UK to track down the symptoms you’re experiencing.
Your doctor will ask you some questions about these symptoms and examine your tummy and vagina. They will make recommendations if they think you have endometriosis or refer you to a gynaecologist for further tests
Endometriosis is a chronic condition that can often bring much discomfort both physically and emotionally with a huge negative impact on your daily life if you let it. Although there’s no permanent cure for endometriosis, there are effective treatments readily available to help you manage the pain to make sure it does not impact your daily life. There are also many ways to address any fertility issues that you may experience. After menopause, the symptoms of endometriosis usually improve.
Apart from getting support from your doctor if you have this condition, it might also be helpful for you to contact support groups like Endometriosis UK, for more information and advice.