One in ten women have it. You probably know someone personally who has it. But are you aware of the disease, its symptoms, and its complications? It’s a health issue too big to ignore, so we’re here to increase awareness. From one endometriosis sufferer to you.
Endometriosis is an inflammatory disease affecting over 176 million women and girls worldwide during their reproductive years. It occurs when tissues much like the lining of the uterus (endometrium) grow outside of the uterus. Potentially growing on the bladder, ovaries, pouch of Douglas, fallopian tubes and other areas of the bowel. While also being potentially found in areas outside the pelvis like scar tissue, the belly button or lungs. It can be classified in 4 stages, according to its severity however, there isn’t a direct correlation between the severity of symptoms and the presence of the endometriosis. For example, you could have no noticeable symptoms and yet have stage 4 endometriosis.
Stage I (Minimal): usually small patches, surface-level lesions, or inflammation on or around organs in the pelvic cavity
Stage II (Mild): more extensive than stage I but still very limited infiltration of pelvic organs, with still only slight scarring or adhesions.
Stage III (Moderate): more widespread and starting to infiltrate pelvic organs, the sides of the pelvic cavity, or other structures. Scarring and adhesions may also be present.
Stage IV (Severe): pelvic organs and ovaries are infiltrative and affected, often also the distortion of the anatomy and adhesions may be present.
Causes of endometriosis have not yet been fully understood however extensive research have shown that there is a strong genetic link which may be influenced by environmental factors or influences. Chat to your mum, grandmother or sister - do they have endometriosis? If so, perhaps you should be more aware of the possible symptoms. However, not everyone who has symptoms has been diagnosed. So awareness of the following symptoms is important.
Symptoms of Endometriosis:
Endometriosis may be suspected by your doctor according to your medical history or symptoms. Typically, they’ll ask to perform a physical examination and refer you to get an ultrasound and possibly blood tests. While an ultrasound is unable to diagnose endometriosis, it may point out cysts on the ovaries (known as endometrioma). The only official method of diagnosis is laparoscopy (key-hole surgery). During this, your gynaecologist (who you’ll likely be referred to) will remove (through excision or resection) the endometrium tissue and is sent to the lab for confirmation. Typically, there is an 8-year delay between initial symptoms and diagnosis. This delay has the potential to greatly impact a sufferers quality of life, the severity of the disease and the complications are fertility.
Treatment for endometriosis depends on a variety of factors including your age, fertility choices, the severity of your symptoms/endometriosis, and preference. Typically, a medical treatment (while the disease is incurable) combined with self-management practices is the best way to manage your endometriosis.
The most common medical treatment is surgery. This removes the endometriosis but isn’t a long term fix as the tissue will grow back over time. Surgery is performed under general anaesthetic. Typically four incisions are made into the lower abdomen enabling the surgeon to view and remove the endometriosis. Recovery time is typically a few weeks however you may be tender for up to 3 months. Benefits may be noticed weeks or months after the surgery.
Hormone therapy like the oral contraceptive pill or Mirena (IUD) are often used. These methods help with reducing the pain, and prevention of endometrium tissue growing back. Also, many women with Mirena have very light or no periods at all. This is a great benefit as who likes a painful period!
What about Fertility?
Not all women with endometriosis have compromised fertility. According to Endometriosis NZ, fertility is decreased in about 3 or 4 in every 10 women with endometriosis. If you have plans to have a family, it’s generally recommended to try for children sooner rather than later (meaning before or around 30). However, having a family is a massive decision with a lot of different factors involved.
Distortion (due to adhesions or infiltrative disease) or damage to the ovaries with endometrioma in moderate or severe cases of endometriosis may cause fertility to be affected. Typically, it’s recommended to receive treatment for endometriosis through either the surgery or through having a hormonal treatment (eg. oral contraceptive or Mirena) and to get pregnant within 6 - 12 months to prevent the likelihood of the endometriosis growing back.
As someone who was on the pill from a young age, I believe most girls who are on contraception mostly for the purpose of reducing period symptoms haven’t even discussed the possibility of endometriosis with their doctors. Ultimately, pain during intercourse and pain during your period should be brought to the table with your doctor. Never listen to the people who tell you to suck it up and get over it. Chat to a female doctor if that makes you feel more understood, and if you have been diagnosed with irritable bowel syndrome, appendicitis, pelvic inflammatory disease, a sexually transmitted disease or simply a sufferer of ‘painful periods’ look into things further if you believe that endometriosis is still a possibility.
Most importantly, just start the conversation!
January this year I had my laparoscopy during which I was diagnosed with Stage II endometriosis. My gynaecologist placed a Mirena during the surgery - to prevent the regrowth of endometriosis. During the surgery, the gynaecologist also took photos of the tissue. I spent the night in the hospital, however, my recovery time was approximately 2 weeks (until I was back up and moving) and 3 months until I felt fine again. While I still get periods with my Mirena and abnormal bleeding patterns, I like the reassurance that the endometriosis has been removed and isn’t growing back. The 99.9% rate of contraception is also a massive benefit and the fact that I can remove my Mirena during a simple doctors appointment if I was ever concerned. I also rely on pain relief treatments like paracetamol, ponstan, naproxen, and ibuprofen when required - obviously only use these under your doctor’s recommendation. Ultimately, treatment and management of endometriosis should be up to the women or girl herself. It’s a completely personal decision, so read up about your options, chat to friends and family about their experiences and discuss your concerns and needs with your doctors and gynaecologist.
Here are my quick tips if you suspect you have endometriosis or you have been diagnosed:
For more advice here are some great resources:
I hope this has helped answer any questions or at least taught you something new about endometriosis. Feel free to share your experiences and advice in the comment section below or contact me privately via social media if you have any further questions or concerns. This blog post is about starting the conversation, increasing awareness and encouraging women to be really educated about their own bodies. If you’d like to hear more about endometriosis in the future (from a personal or an article perspective) then reach out!
From one woman to another,
Cover Image Source: https://www.chatelaine.com/health/how-do-i-know-if-i-have-endometriosis/
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