HopesAlive that’s what she wishes herself to be called. And, truly so for her battles with two giant problems, Infertility and TB at this tender age is truly commendable. What started as an interview about her battle with infertility continued as a revelation about this deadly relationship between Infertility and Tuberculosis? This is a tell-all tale of a true braveheart who has poured her heart out about TB and how it impacted her journey of being a mother. She fought it all out.
Tell us a bit about yourself? (Your name, your profession, how you will describe yourself as a person, your likes, hobbies, interest).
I would prefer to call myself, HopesAlive, for that is how I survived my journey.
I am a dedicated person towards my family, job, country and responsibilities. I even want to work for society in whatever way I can. I believe India can be a developed country only when all citizens work towards it. I contribute in swacch bharat abhiyan, I like to save country’s resources like water, electricity and paper and expect the same from others. At the same time, I am also impatient, short tempered and get irritated easily. On professional front I am working in a semi government organisation.
How long was your struggle with infertility?
Actively 4 years (2012-2016).
3. Tell us a bit about the complications you had and the battles you had to undergo (number of ivfs, or any other invasive procedures).
I contracted tuberculosis while I was working for an IT company in Pune, in 2007, when I was only 22. It spread from my lungs to genital organs. It was detected in early 2008. I left my job after that and got married in mid 2008.
It was in 2012 that I came to know that I am unable to conceive due to blocked tubes. I never had any other problems like irregular periods. I had a HSG and later laparoscopy to detect the cause of infertility. When the tissues collected in laparoscopy, from my tubes were microscopically observed, it was confirmed that the damage to the tubes was because of tuberculosis history and IVF was the only option left for me.
I was so shocked and unable to accept the fact. But later we made up our minds for ivf and I underwent my first cycle in year 2013 which failed despite having great eggs, sperm and embryos. Later I had FET’s also from that cycle, which failed too. I had 3 fresh ivf’s back to back (and total 6 transfers, 2 fresh and 4 frozen), from 2013 to mid 2015, at the same clinic, which all failed. Meanwhile, I tried all complimentary treatments like Ayurveda, homeopathy, taking supplements like serrapeptase etc, but all in vain. Towards the end of 2015, l made up my mind to try with one last ivf at a different clinic before pursuing adoption ( I was a fool that I tried all my cycles at the same clinic) I shortlisted Indira Ivf, Pune after too much of research on internet and also one of my online friends referred it, who had similar struggles. I am so thankful to her that she gave me timely advice. So finally, I had another cycle in Nov 2015, which was a success and by the grace of God, I am due to deliver in few weeks.
Happy Note: She delivered a healthy baby girl!
4. Which was the most difficult thing to fight during this phase - emotional insecurities, relationship turmoil, social pressures, financial burden, physical and medical intervention or anything else? Please elaborate.
The most difficult thing to fight during tough time is your own negativity. Yes, other factors like social pressure, relationship turmoil, financial reasons are also responsible and play a role upto some extent, but one should be really strong and determined, should not accept failure and ready to take risks, to get success eventually. I also got very depressed and even had suicidal thoughts some times, but one needs to get over the negative times. Yes, infertility unfortunate but there can be much more severe problems in life. We should be thankful to God that he has saved us from many other serious diseases. Infertile people are otherwise healthy people.
5. How did you overcome the physical and emotional problems during this phase?
My mother and husband helped me a lot during that tough time and always gave time to my emotions and feelings. I often called my mother and cried over phone, often repeating the same things. But she always heard patiently and never acted like this was none of her business. She was and is very supportive despite her own responsibilities and troubles.
Even my in-laws were pretty nice and never pressurized me unnecessarily. I would also like to add that good health and nutritious diet plays a role too. At times when I was very depressed, I had some kind of physical activity like brisk walk, running or yoga, which helped me change my mood. It really works, especially during negativity.
Another thing which I tried, to keep myself busy was working towards society. As I was earning, I was free to spend my money, my way. I made many donations, joined some NGO’s (but never actually got to work with them as I was not able to take out much time) and worked for society, though in a small way.
6. Tell us how you finally won this battle.
I finally won this battle by changing my old clinic and trying again with a new doctor, fresh mind and high spirits.
7. What advice/tips would you like to give to ladies going through infertility phase?
Only advice is to remain positive and get going. Never accept failure and stop trying. It’s okay to take breaks, long or short, but one should always return with greater strength, high spirits and renewed energy.
8. Could you elaborate on the Infertility and TB relationship from your experience?
Something more which I would like to add is about tuberculosis and infertility resulting from it. I have seen that people have this misconception that TB is the disease of the past and affects mostly poor. Atleast, I had this misconception. I always thought that TB used to be a disease of history and since I was working with educated and middle class/ upper middle class people in Air conditioned rooms, I never expected that I will ever become a victim of this disease. But may be the closed AC rooms, without outside fresh air and sunlight was the reason that I caught the disease, also since I was away from home, I became severely malnourished because I missed Ghar ka khana. I lost lots of weight, had low fever in evening, started coughing a lot and was always low in energy. But I was so career oriented that I didn’t pay too much of attention. My mother was in a lot of stress and always told me on phone to have a complete checkup. It’s not that I was totally casual, I had a couple of blood tests , went to a doctor who ran test specifically for TB ( the tuberculin skin test), because my mother told me to get tested for TB as my symptoms sounded like TB to her. But unfortunately, it came negative (TB is notorious for giving false positive/ false negative results). This was in September 2007. Only thing which was caught in blood test was my low haemoglobin. I took many health syrups and iron loaded supplements but my health only deteriorated further in coming months and weight reduced severely and I was coughing continuously. I was relieved that I didn’t have TB (because of that negative test), so I thought to go to an ENT specialist, he said everything is fine and didn’t know the reason of my continuous coughing.
He advised me to go to a chest specialist. I searched one and went there. It was Feb 2008. He ran a chest x-ray and looking at that, instantly told me that I have active TB and it has progressed a lot. I was alone in a big city and it was quite a big blow for me. He prescribed the mainline drugs common for TB and told me to take religiously. I had many side effects like joint pain, nausea, diarrhoea due to strong antibiotics but I never missed any dose. And if one needs to get rid of TB, it’s very important to complete full TB course religiously, without missing doses. If one stops treatment in between, TB bacteria can mutate and convert in to drug resistant TB which is a very dangerous form of TB and difficult to treat.
Many negative thoughts came to my mind like whether I will be able to survive this or not. Meanwhile, marriage proposals were coming too and I had lot of family pressure to leave my job, take care of my health and get married. I told my would-be husband about my disease and he took it positively and said that it is curable. It was a very depressing time for me so I quit my job in April 2008 and came back to my home town and got married in July, same year.
Meanwhile my treatment continued till DEC 2008. I was feeling better after one month of starting the meds but I never stopped or missed any dose and completed full 9 months of TB course religiously. Starting a family was not my priority as I was very young and jobless. So I prepared for public sector jobs and studied for 2 years and cleared one exam. So I got the offer letter in late 2010. I joined and later went for one year training. It was in 2011 that I was starting to think about baby and pressure from family also increased. I went for HSG test in late 2012, and came to know about tubal blockage. Later went for laparoscopy too in Jan 2013 and came to know that my infertility was caused due to severe TB of past. It was again a big blow for me.
TB results in infertility only if it progresses to the genital organs through blood circulation that is why it is very important to catch the disease as early as possible. Another name of this disease is consumption and it literally consumes/ eats up the organs it affects.
In genital organs, it first affects both the tubes and destroys their function. Later, it affects uterus, upto an extent that loss of monthly periods can happen due to severe adhesion. My disease was caught at the stage when both my tubes were affected, and thankfully my uterus was spared.
If uterus is involved upto a great extent it can be impossible to conceive, even with IVF and surrogacy is the only option left. TB is also known to decrease the egg reserve in the ovaries. So it can be a major cause of infertility as complete reproductive system can be affected by TB.
TB is a difficult disease to be caught and one should be sincere towards health and should immediately seek medical help if there are any symptoms similar to TB. There is two types of TB, inactive TB and Active TB. Most of the Indians are affected by inactive TB, in which bacteria is found in the body but is mostly encapsulated by the immune system and the bacteria are hidden somewhere in the body, sleeping. But later in life, when ever one’s body is weak due to some illness, malnutrition or any other factor, these bacteria can come out from their shells and attack the immune system. Since the body is weak and so is the immune system, the bacteria takes over and disease progresses to active form. It is important to catch the disease as early as possible in its active form and start mainline TB therapy otherwise many organs can be affected.
Government has started many anti TB drives and DOTS is one of them but it depends mostly on an individual to take it seriously. A person carrying active TB can infect 10 other healthy people in one single year, if not on medication. Once the medication is started, TB is not contagious in 15-20 days but to kill the bacteria completely, one needs to take full treatment which generally ranges from 6 months to one year. TB bacteria grows slowly and hence in turn it is destroyed slowly, that’s why the medication is to be taken for so long.
I know I have written a lot but I really hope whatever I have written helps as many people as possible so that people can have knowledge about this deadly disease and many efforts are needed collectively to completely stop the progress of this disease, especially in India as India is one of the countries in world where TB is rampant. TB bacteria has mutated a lot since many years and its getting difficult to treat this disease with the mainline drugs. The disease of the past has come out stronger than ever in present and the bacteria could grow stronger in future. My motive is not to scare anybody but I have researched extensively about this disease in so many years. As I keep repeating again and again, taking its treatment religiously is very important. Anti TB drugs once started are quite effective and cures the disease completely in full course of treatment. One can get back to previous healthy self by good nutritious diet and disciplined lifestyle. I have completely overcome this disease now and so can anybody, if dedication is there. Let’s make mankind win and not the TB bacteria.