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Pelvic Pain Has Crippled Millions of Women's Lives. How Long Before Doctors, Society Take it Seriously?

Illustration by Mir Suhail/ News18.com

Illustration by Mir Suhail/ News18.com

When it comes to chronic female health issues, the need for a supportive medical community and society is of paramount importance. But more often than not, women are left to fend for themselves.

I never knew pelvic pain could cripple one's life until I experienced it myself. I was just 25 when a mystery disease took over the reins of my life, pushing me to the back seat. It all began in September 2017. Just like any other day at the office, I was sitting at my desk, when I felt a sudden sharp pain in my lower belly. At first, I tried to ignore it. Until I just couldn't function any longer; my mind went blank, my vision hazy, and I felt like throwing up.

Since then not a day has passed when my body has been free from this disabling pain. It's like a thousand knives stabbing me constantly, tearing and pulling the insides. Come periods and the excruciating pain takes over my life.

But, for me, the struggle to find a diagnosis for my condition proved more painful. And believe it or not, there are many women like me. I spoke to a few women who suffer from pelvic pain and all of them agreed that it’s been a real struggle to find a diagnosis.

Vijaya Gupta, a 36-year old professional from Mumbai, says, “For the past 10 years or so, I have suffered from pelvic pain and periods were the most dreaded phase of the month for me. I would have to take leave from work, take 4-6 pain killers per day and then end up with drips in the hospital with pain killer injection.”

Vijaya says she received a diagnosis for her condition when I was around 27 years old, only after her pain became unbearable.

Priyanka Anand, an advertising professional from Mumbai, has a similar story to share. “It took me 5-6 years to get a diagnosis. I was almost at the verge of giving up my career. During those years, I wasn’t even able to enjoy the small things in life like dancing. Within minutes of dancing the pain would be unbearable. So, in my twenties when everyone hit the night clubs, I had to excuse myself,” she says.

“I did not get any solution except for painkillers,” she adds. Priyanka was finally diagnosed with endometriosis last year after her period didn’t stop for over a month.

Mayo clinic, a leading non-profit medical research centre in the US, describes chronic pelvic pain (CPP) as "pain in the area below your bellybutton and between your hips that lasts six months or longer." It can not only be a symptom but also a disease in its own right.

Sometimes, it can be a symptom of a single disease, and in other cases, it can be a result of multiple conditions. For example, women with endometriosis can also have adhesions, pelvic nerve problems and many other disorders.

Some of the common causes include endometriosis, pelvic inflammatory disease, interstitial cystitis, pelvic congestion syndrome, pelvic floor dysfunction, adhesions, Fibromyalgia (musculoskeletal disorder), pudendal neuralgia and psychological factors such as depression, and chronic stress.

Despite advances in medicine and technology, women's pelvic pain often takes years of diagnosis, often yielding no clear result or treatment.

“The diagnosis is difficult simply because we don’t yet have great diagnostic tools that could pinpoint the exact cause of the pain. Sometimes, diagnosis becomes empirical. Because the final diagnosis may not come in ultrasound, blood tests, even MRI, but in laparoscopy, which is an invasive procedure so it can’t be advised right away,” says Dr. Shweta Goswami, Sr. Consultant Gynecologist and IVF Expert from Jaypee Hospital, Noida.

But does the dismissive attitude towards period pains also contribute to delay in diagnosis?

“Like all other girls are made to believe, I was convinced that pain, uneasiness and heavy flow are a part and parcel of a girl's life. Pain and heavy periods were never taken seriously by doctors,” complains Vijaya29-year-old Aditi Garg, who was recently diagnosed with endometriosis, also agrees, “I went to my first gynec for the treatment of period pain when I was 17. That time they did not take it seriously and put me on oral contraceptive pills for 6 months which made me gain so much weight that I decided to stop taking them.”

“Often, doctors say that 'thoda toh dard hoga'. This leads to women finding fault in their own selves and their pain bearing capacity,” she adds.

Yet Dr. Sweta Goswami says that it’s not about the attitude of doctors, it’s the medical protocol. “When it comes to adolescent or young girls with period pains, we cannot jump onto an invasive procedure like laparoscopy, which is considered the gold standard for diagnosis of endometriosis. Not just doctors, most women are also apprehensive about going for surgery as they worry of it will add new pain instead of relief. And most often, period pain settles gradually with age.”

But she adds that as doctors they are taught to take period pain seriously and try to rule out endometriosis and other conditions if the pain is debilitating.

Shobha Gupta, Medical Director and IVF Specialist from Mother's Lap IVF Centre, New Delhi, agrees. “We follow a step by step treatment and management of pelvic pain. First, we rule out infection, then we give oral contraceptive to suppress endometriosis if present, and laparoscopy is the last step.” Dr. Gupta adds that if the patient keeps on changing the doctor, then this could lead to delay in the diagnosis as each one will start with step one.

According to the Endometriosis Society of India, an estimated 25 million Indian women suffer from this condition. Most women with endometriosis also suffer from chronic pelvic pain, which adversely affects their daily life. Besides, there's also a significant proportion of women who have chronic pelvic pain due to a number of other causes.

It took me hundreds of hospital visits, countless tests and seven months of running from pillar to post just to be told two tiny spots of endometriosis were found in the laparoscopy. But when my pain continued even after the surgery, each doctor speculated a different cause for my pain. But no one knew for sure what the exact cause was.

The International Pelvic Pain Society estimates that "some 61% of women suffering from chronic pelvic pain don't know what is causing it."

That means years of suffering without receiving any adequate treatment or help.

Dr. Gupta agrees that a proper diagnosis may not be possible in some cases.

“There are certain limitations to even laparoscopy. Sometimes, laparoscopy comes out normal. Then the pain could be musculoskeletal, psychological or due to other causes not visible in a lap. Treating pelvic pain often requires a multi-specialist approach,” Dr. Gupta explains.

Dr. Goswami adds that even if laparoscopy pinpoints an exact cause, some conditions cannot be ‘cured’. “For example, adhesion or scarring due to endometriosis or before surgery cannot be completely treated. So, in those cases, we counsel women on how to live with the pain.”

When it comes to chronic female health issues, the need for a supportive medical community and society is of paramount importance. But more often than not, women are left to fend for themselves. In my case, none of the doctors I visited (almost all top doctors of the city) offered me any counselling on how to better manage my pain. They didn't refer me to a pain management specialist, or any support group (if at all there are any). Unlike western countries, India has few self-help or support groups for endometriosis (most of them are in their early stages) and none for chronic pelvic pain.

Moreover, society’s tendency to normalise women’s pain adds to the problem. “Females are brought up that way and taught to "tolerate and be strong". They are not always encouraged to discuss period issues openly. Hence there's a delay in realisation of a health problem,” complains Vijaya.

“It is still a taboo to talk about pain during periods and intercourse,” adds Aditi.

Dr. Goswami agrees that there’s a need to change the mindset. “We as Indian women have been taught to bear in silence. There are certain misconceptions in society — women are often asked not to take hormones or pain killers because they need to bear period pain so as to bear the pain of labour. That mindset needs to change,” she says.

The gynecologist says that women need to start speaking up on how such issues affect their quality of life. "When that demand comes up, we will definitely have more research focusing on it,” Dr. Goswami adds.

“Women with pelvic pain, whether period pain, pain during sex or urination, they should take it seriously and approach the right doctor,” Dr. Gupta stresses.

Gradually, more and more women are coming out to talk about their reproductive/sexual health issues, but there's still a long way to go before each of us live a better life — one that's without pain.