A condition affecting 1 in every 10 women should be a matter of concern. However, that is not necessarily the case for endometriosis, where women feel their doctors should be doing more to help them.
Imagine being in pain every day: when you wake up, when you go to work, when you move, when you don’t move… That is what women with endometriosis go through. Everyday. Yet, sufferers don’t feel they are being taken seriously. There is a huge lack of research that becomes visible in an inability of diagnosis.
Lisa spent between 7 and 8 years suffering from chronic pain until she was diagnosed. She had a laparoscopy in May 2017. When talking about the day she was diagnosed she says: “I felt a huge relief (…) it explained why I was feeling the way I was feeling. It wasn’t all in my head after all”.
Endometriosis is the presence of endometrial-like tissue outside the uterus. It triggers a chronic inflammatory reaction in the body. Since the symptoms are so broad and can vary from women to women it is sometimes misdiagnosed. It can take an average of 7.5 years, from the first doctor’s consultation, until when it is diagnosed.
For its diagnose it requires a clinical examination or ultrasound, however, only experts in the condition will be able to identify the symptoms in these ways. The best way for confirming the diagnosis of endometriosis is to perform a laparoscopy.
The symptoms vary from women to women, but in most cases include painful period, non-menstrual pelvic pain, fatigue, pain during intercourse, cyclical intestinal complaints, infertility, and other cyclical symptoms that appear around menstruation.
Furthermore, endometriosis affects other body functions, depending on the location of the adhesions. There is also an unclear relation with migraine, insomnia, lower back pain, and urinary tract problems, among others.
Although there is not a definitive cure for this condition, there are several treatments. One measure could be the use of hormonal treatments. Even though high levels of oestrogen are related to the development of endometriosis, the use of the combined pill and other oestrogen treatments is still recommended by many doctors, where ideally the increase of progesterone should be encouraged.
Unfortunately, not every woman reacts the same way to the use of hormones and many may have unpleasant side effects. For some women, these types of treatments are not an option. Pain management medication is a way of counteracting the pain provoked by endometriosis. It only offers temporary relief, but it is most useful when other treatments don’t work.
Lisa is the mother of a 4-year-old boy. She is currently trying to conceive again and is undergoing fertility treatments. For that reason, she is only taking pain relief medication.
Many women also opt for a holistic approach. It could include changes in diet, taking supplements, yoga, homeopathic remedies, etc. “I found my symptoms worsened whenever I ate dairy products”, Lisa says.
After diagnosis, a laparoscopy may be carried out in order to eliminate endometrial adhesions. However, as it is a chronic disease, endometriosis may come back after a certain period of time, despite any treatment.
Gráinne has endometriosis and adenomyosis (a condition where the endometrium breaks through the muscle wall of the uterus). She has had 8 laparoscopies ever since she was diagnosed.
There is no clear explanation for why it occurs. A lot of research is still needed. One idea is that it could be a result of retrograde menstruation (when, during menstrual periods, some of the blood travels out of the uterus and into the abdomen). It is also believed that it could be inherited.
Most of the women suffering from endometriosis would go to their GPs and get answers like: “there is nothing wrong with you”, “maybe you are depressed”, “you just have bad periods.” Doctors should be the people that could help, not the ones that leave women in pain, isolated and misunderstood. “Definitely more research is needed and definitely more combined care”, Lisa believes.
The Endometriosis Association of Ireland (EAI) was created in 1987 with the purpose of informing and supporting women with endometriosis. They also ask their volunteers to raise funds that go into research.
The EAI organises an Annual Information event in March, which coincides with the Endometriosis Awareness Week. For some women with endometriosis “it is very isolating when the people closest to you don’t understand what you are going through” so the Association plays a massive role in their lives. Lisa states: “To be able to talk to somebody, who not only knows but lives through it, has been a huge source of comfort to me”.
More information on endometriosis: