This Disease Makes Women Infertile, and the Lack of Awareness Is Shocking

Menstrual irregularities, dyspareunia, and chronic pelvic inflammation are just a few of the other outcomes of Genital Tuberculosis.

December 2017, my husband and I decided to try getting pregnant. We had been married for just two years, but both of us loved children and wanted to grow our family. We were blessed to be living in India back then, very close to family and friends, an essential support system to raise children. Hence started the uneventful “planned sex” routine. In spite of doing everything by the book, we were lacking results. So, in February 2018 we decided to consult a gynecologist. Blessed was I to have found her, else I would have never known or been treated for Genital Tuberculosis.

“The true incidence of genital TB is not known given that, owing to its subtle presentation, many cases remain undiagnosed. It has been estimated that approximately 5% of females presenting to subfertility clinics worldwide have genital TB.” — Tuberculosis of the Female Genital Tract

During my doctor’s appointment, I was asked to get all my routine tests, which included an intrauterine ultrasound. Upon seeing my reports, my gynecologist informed me that she sees a shadow in my fallopian tubes which could be a sign of tuberculosis in the genital tract. I was horrified. I knew that India is one of those countries where tuberculosis incidence is still much higher than first world countries; Also from a very young age, we are taught that tuberculosis could be life-threatening. However, I never knew that one could get infected by it in an organ, other than the lungs.

“In most cases, the disease is asymptomatic or can present with a few symptoms among which infertility is the most common. Other symptoms reported are menstrual irregularities such as oligomenorrhoea, hypomenorrhoea, amenorrhoea, menorrhagia, dysmenorrhoea, metrorrhagia, pelvic pain and abnormal vaginal discharge.” — Genital tuberculosis in females

Soon after I underwent hysteroscopy for bacterial diagnosis, and the doctor’s diagnosis was confirmed. I was immediately put on a 6-month treatment plan, which involved eating 2 medicines every day, at the same exact time. If I would miss even one day, it would essentially mean that my treatment auto-gears to square 0. Initially, there were a few hiccups, but with practice (and financial impact realization) the medicines became a part of my routine. After 5 months of treatment, I underwent similar blood tests and procedures to identify the presence (or lack of) the GT bacteria. Thankfully, the results came back all clear!

“Conception rates are low among infertile women with genital TB even after multidrug therapy for TB, and the risk of complications such as ectopic pregnancy and miscarriage is high.” — Genital tuberculosis in females

In June 2018, with the doctor’s blessings (while I was still in the final leg of GT treatment) we decided to try conceiving once again. I also took multiple weekly hormone boosters, to ensure that “my vagina responds to the sperm’s attempt to attach”. Mid-July I was pregnant! It was the best news ever; I remember taking the pregnancy test half-heartedly since history had taught me not to hope. Took the test, kept it next to the basin, and proceeded to brush my teeth — assured, that the result would be negative. Imagine my shock, and surprise when there were two solid pink lines. It was everything I ever wanted.

After much rejoicing, follow-up tests, and continuous monitoring my husband and I went for the “fetal heartbeat ultrasound”. Week 5 was possibly the happiest ever, we heard the heartbeats and decided to inform our families in Week 7. We got these cute mugs made for everyone, our parent’s mugs said “The best parents are getting promoted to, GRANDPARENTS”. Everything was going well until it wasn’t. End of Week 8, I was due for a routine doctor’s appointment. A day or two before I had witnessed faint spotting, and I was supremely worried. However, my doctor assured me that this was more common than known. As a precautionary measure, she asked me to get an ultrasound, and there was no heartbeat. The baby had flatlined, unknown for how many days.

The next few weeks were the worst. I had never experienced heartache like that, what pained me more was that I had never seen my husband in so much pain before. We were upset, we were in anguish, and we had questions. The doctor got a chromosome analysis done, amongst other many tests to identify the cause of my miscarriage. Alas, none came back with any significant findings. I was healthy, my GT was cured, and yet I had to undergo D&C (surgical abortion) at 9 Weeks.

“As genital tuberculosis is asymptomatic; there is no specific test to detect the disease. There are combined tests which are used to investigate whether a person is suffering from genital TB. Endometrial biopsy and laparoscopy can be used to check whether the fallopian tube is affected or not. Other tests like tuberculin test or blood test can be done to detect tuberculosis”. It is essential to get tested and treated at the right time to avoid any serious health complications in the future.” — Dear women, take note. Genital tuberculosis may lead to infertility

We’re in 2022, since we initially started dreaming of a family, my husband and I have had to endure two miscarriages. What infuriates me is, the lack of awareness! During my second pregnancy, I consulted another doctor due to logistical issues, and she was surprised to know my original GT diagnosis was made. Furthermore, in 2020 we moved to Canada and a part of our initial settlement was finding a family doctor. We found one, and like any new doctor, he asked for our histories. Upon hearing mine, he was shocked to know I had been infected with genital tuberculosis. He was so unaware, that he had to google the disease (in front of us)! Since then we’ve changed doctors yet the response stays the same, that too in a first-world country — how?

If you meet my husband and me on the street, befriend us, or work with us, you would never know the trauma we still carry within. With the immense support of families, as well as each other’s unconditional support and love we still hope to have a family someday. If you know someone who is struggling with conception, maybe let them know of GT. Spread the awareness, and let knowledge be our tool to conquer the stigma of infertility.

Xo, Aakriti

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