Smrithy Rajesh,44 from Bangalore had to take into account how her younger son Advaith, 17, who is on the autism spectrum, would fare when she decided to go in for surgery, and whether other members in her household would be able to support him the way she did.
What was your medical condition which made you go to the doctor?
Adenomyosis, endometriosis and endometrial polyps with bulky uterus
For 5 to 6 years, I experienced heavy menstrual bleeding, which gradually led to severe period pain over time. Due to the heavy bleeding, my ferritin levels dropped significantly, causing my TSH (Thyroid Stimulating Hormone) levels to also decrease. To alleviate the resulting fatigue, doctors prescribed iron injections, which offered temporary relief.
About 5 years ago, I consulted a gynecologist who recommended undergoing a D&C procedure along with a hormonal IUD insertion. However, I wasn’t entirely clear about the hormonal IUD process and decided not to pursue it. A year later, I visited another gynecologist who prescribed Tranexamic Acid tablets as well as a combination of Tranexamic Acid and Mefenamic Acid tablets to manage the bleeding and pain. While these medications initially helped, their effectiveness diminished over time.
When I consulted her again, she suggested hormonal tablets, but since I have high blood pressure and was already on medication for it, hormonal therapy wasn't a safe option for me. I chose not to take the hormonal tablets, and my symptoms persisted.
During that period, my father fell seriously ill, and I was frequently traveling to Kerala while managing multiple responsibilities. Unfortunately, I couldn’t prioritize my health issues amid all this.
Eventually, the pain during my periods became unbearable—resembling labor pain—and painkillers like Tranexamic Acid and Mefenamic Acid tablets and Dicyclomine and Mefenamic Acid tablets no longer provided relief. I decided to consult another doctor, and after a TVS scan (transvaginal ultrasound), I was diagnosed with adenomyosis and uterine polyps. The doctor advised a hysterectomy to address these issues.
Why did you decide to take a second opinion when the gynaecologist suggested hysterectomy?
During my first visit to a gynaecologist at a renowned maternity hospital, she insisted I schedule a hysterectomy for the following week and directed me to speak with the insurance coordinator. I left saying I needed to think about it. The next week, the insurance coordinator called again to set a date, which made me suspicious of their intentions. After discussing with doctor friends who advised that a hysterectomy is a last resort and other treatments are available, one suggested I consult another doctor, which I did.
What did this second doctor recommend as treatment?
The second doctor suggested that it wasn’t necessary to move directly to a hysterectomy. Instead, she recommended trying hysteroscopy to remove the polyps and to insert a IUD. She explained that the IUD could help reduce excess estrogen levels, which would likely resolve many of my issues. After considering her advice, I decided to give it a try. Some of my friends who had undergone hysterectomies shared their experiences and advised me to consider hysterectomy only as a last resort, as they were facing some complications post-surgery.
What were the factors that impacted your decision?
I was Advaith (Addu)'s primary caretaker from his childhood, initially dealing with high stress due to a lack of support. This led to health issues like back, knee, and neck pain. I then created a program to help Addu become self-sufficient in my absence. He began interacting with others and also followed a set routine at home. When my surgery day approached, I told him the date, knowing he would be comfortable in Bangalore and could maintain his routine and attend his vocational centre. Therefore, I opted to undergo the surgery in Bangalore rather than traveling to my hometown. Scheduling the surgery during the holidays of my elder son Adhithya (Aadi) who is 20 years, ensured Aadi could be with Addu while I was hospitalized. These were the preparations I made.
How did you prepare your son Addu for the operation?
I spoke with him in the same manner as I did with Aadi, believing that he could comprehend my words. He is particularly perceptive of my facial expressions, especially when I am in pain or under stress. When I explained the surgery to him, he simply nodded. During his visit to the hospital with Aadi after the operation Addu was notably quiet upon seeing my condition, appearing visibly sad. I conversed with him as usual, and after some time, he requested permission to lie down beside me, which I granted. He then hugged me, showing his love and care. Following my discharge and while recuperating at home, Addu was exceptionally well-behaved and adapted to the situation appropriately. He would lie down beside me during his free time. Since childhood, Aadi has been closely attached to Addu, making it easier for Aadi to understand and support Addu’s needs. Together, they managed their responsibilities effectively, helping us navigate through challenging times.
Can you share your post-surgery recovery process? How long did that take? Any precautions you had to take?
Post-surgery, I experienced pain and discomfort for about a week. Subsequently, I had spotting that lasted for several days. I have had two menstrual cycles since the surgery; both were painful but involved less bleeding compared to prior instances. Before the surgery, I experienced heavy bleeding and iron loss and used to take iron injections (tablets were not helping)
Therefore, my issues have not been fully resolved at this point. The doctor has recommended waiting for an additional month to assess the results. Currently, I am on medication, Dinogest 2 mg for another three months to achieve better outcomes.
Were you advised to undergo any rehabilitation or physiotherapy?
According to my doctor, I could resume normal activities one week after the surgery. Therefore, I continued with my usual routine.
How did Addu react after your return from the hospital?
Addu was thrilled when I returned home, following instructions from his dad and brother.
Please share how Addu has gained the ability to care for himself, and how your training contributed to his self-sufficiency.
From an early age, I have been training Addu to develop self-care skills. As a co-therapist, my initial focus was on toilet training, recognising its significance. This process required considerable effort, but through a methodical approach and consistent determination, Addu became fully toilet trained by the age of five. Following this, I taught him personal hygiene practices such as washing after using the toilet. Concurrently, I worked on skills related to eating, dressing, and bathing. To facilitate this, I created visual schedules and maintained a structured environment at home. Consistent practice enabled Addu to master these skills.
The primary focus from the beginning was on developing communication skills, which empowered Addu to initiate interactions based on his needs. He uses the Avaz app for communication both at home and in public settings. With Avaz, he sometimes combines words and gestures to convey his needs and emotions effectively.
Addu can independently make jewellery, embroider, type, skate, cycle, and play badminton and basketball without me. If a caretaker (whether it be his father, brother, or another individual) is present, Addu can adhere to his routine with minimal assistance from that person.
What is your message to parents whose children may need additional support?
We need to develop their communication skills by providing a method they can initiate, and others can understand. Avoid making them dependent on us; instead, involve them in the community and consider special schools if necessary. Plan for their future independence by teaching daily life skills like brushing, bathing, dressing, eating, cooking, and cleanliness. It's commonly seen as a mother’s role, but she needs support from her husband and family. Shared responsibilities lead to achieving milestones. Consistency and determination are key.
Love is the best teaching method and Parents are the best teachers!
As told to Moyna Sen
