Pelvic Pain: Why Women Need to Talk About It

Chronic pelvic pain affects around 24 percent of women, but many of us suffer in silence rather than seek help.

Chronic pelvic pain can be caused by conditions such as endometriosis and adenomyosis. This week is Endometriosis Awareness Week, an important time for sufferers whose conditions can leave them feeling isolated and miserable. But well-informed medical care, and the support of understanding peers, can make these conditions manageable. I suffer from adenomyosis, and community support in particular has been my lifeline.

Talking publicly about our experiences can help raise awareness and encourage women to seek help. Endometriosis and adenomyosis are words many people have never heard before. But this is changing, as endometriosis has recently been receiving a lot of media attention. Celebrities such as Lena Dunham, who was recently rushed to the hospital due to her illness, have begun talking openly about their struggles. Endometriosis, as Dunham explains, is a disease in which uterus-type tissue grows outside of the uterus. She described her diagnosis, after years of mysterious suffering, as a huge relief. She wasn’t mad after all.

Adenomyosis is another cause of pelvic pain, which can either develop separately or co-exist with endometriosis. Sadly, there is even less public awareness of this disease. I was originally diagnosed with endometriosis, due to it enjoying a little more limelight. But on internal inspection, there were none of the lesions and adhesions that endometriosis causes. Adenomyosis is confined to the lining of the uterus, and over time can lead to uterus enlargement and increasing pain that requires major surgery. It’s no picnic. It can be tough, but, like Lena Dunham, I’m glad to finally know what I’m dealing with.

Both adenomyosis and endometriosis can cause a confusingly wide range of symptoms, which is one of the reasons they usually take years to be correctly diagnosed. Common symptoms include pelvic pain, stomach pain, unusual bleeding, changes in bladder and bowel movements, fatigue, and hip or leg pain.

Even though these symptoms are a strong indicator, women are not diagnosed with endometriosis for an average of seven and a half years. If you or someone you know is suffering, it’s best to seek help and support sooner rather than later. Keeping a diary of your symptoms can help you to explain what’s been happening when you visit a doctor.

It’s a good idea to go to a doctor and get the ball rolling as soon as you feel able, since diagnosis and treatment of pelvic pain can be a slow process. If you don’t feel confident, you can take a buddy with you, a list of important questions and somewhere to note down what you get told. You should make sure you have been given all the information you feel you need in order to make decisions about treatment. The lack of research into both adenomyosis and endometriosis can make doctor’s visits frustrating and not as informative as you might have hoped. If you can’t get what you need from your doctor, ask to see a specialist, and do some research into who you want to see.

The online community is a great place to find information for things like where to locate the right specialist. It can be a safer and less frightening place than Google to find out about treatment options such as hormones and surgery. Endometriosis and adenomyosis Facebook groups provide not only emotional support and empathy, but invaluable wisdom. Groups discuss up-to-date medical information, diet, exercise, pain control, sex, fertility, relationship issues and how to deal with hospital visits and surgical recovery. These online support spaces provide exactly what sufferers also need from their real-life friends and loves ones and what we also need to give to ourselves: care, openness and honesty.