A few years after she got married Karen Mohamed-Dias decided it was time to have children, but she knew she had a hormonal condition and that it might pose some difficulty in her getting pregnant.
But the journey she envisioned culminating with a bouncing baby in her arms ended instead with her having a hysterectomy, which killed all hopes of her carrying a child. The surgery was done after it was found that she had cervical cancer and was advised to have the hysterectomy instead of having radiotherapy and chemotherapy, as she might not have been able to become pregnant anyway after those treatments.
It has been just months since the surgery and while she is still dealing with the physical and emotional consequences, Mohamed-Dias wants to use her experience to alert other young women that they are not too young to be diagnosed with cervical cancer. But more importantly she wants to encourage them to ask questions when visiting a gynaecologist and to seek second opinion.
As January is designated cervical cancer awareness month, she believes the time is opportune for her to tell her story and if it can help one woman then that would be enough.
It all began in June last year, a month after Mohamed-Dias celebrated her 29th birthday and figured it was time to have a baby.
“I actually didn’t notice anything. I went to the doctor to find out what I had to do next to get pregnant because I know I had what is called polycystic ovaries which is a hormonal condition so I know it would have been hard to get pregnant,” she told the Sunday Stabroek in an interview.
At the time, she was eating right, exercising and having intercourse and “it [becoming pregnant] should have been happening.” But because it was not she decided to visit the doctor and at that time she did not have a gynaecologist because the “regular Guyanese thing is that you only need a gynaecologist when you are having a baby and that was me and I paid the price for that.”
Her very first visit to the doctor saw him discovering a mass in her cervix on physical examination and he ordered a biopsy immediately.
One week later, the results came back, and she learnt she had cancer and all her options were explained, but instead of just doing the cervix and then maybe trying to get pregnant Mohamed-Dias said following discussion with her husband they took the decision to “take it all out.”
Two months later she had what was called a radical hysterectomy (a surgery to remove the uterus, cervix, and part of the vagina. The ovaries, fallopian tubes, and nearby lymph nodes may also be removed in the process).
Looking back, the young woman said it is difficult to describe her state of mind during those months as she was mostly in a state of shock and took it “day by day.”
On the positive side, she has had really good support from her husband and other family members and at this point, five months after, she said she does not think she realises how “emotionally devastating it is because of the support I have had.”
She had to wait 11 weeks to be given the all clear and be told that she does not need any further treatment.
She recalled that about a year before she had experienced back pain, but she thought at the time it was the chair she was using and when this was rectified the pain went. She now knows it was a symptom of cervical cancer.
Angry
Now that the surgery has sunk in, Mohamed-Dias said she is very angry because she believes that it could have all been avoided.
As she told it, one year before she was going to another doctor for a different issue, but she never examined her “she just gave me papers to do this, to do that but she never checked. I mean, one year ago! I don’t know how much a difference it could have made but…”
She had gone to the doctor because she wanted a second opinion after she discovered she had polycystic ovarian syndrome. She recalled that the doctor never examined her but sent her to do various tests only to have the same diagnosis and later prescribed medication to treat her irregular periods, a condition she had suffered for years.
As a very young woman (she was just about 21 years old) Mohamed-Dias said, when she experienced irregular periods and she “paid my money and went to a private gynaecologist and of course you are paying your money and expect good care.”
That was her first gynaecologist visit.
“He just listened to me and he wrote me a prescription… and I was fine with it because it worked but every time I tried to come off, and I didn’t even ask how long I was supposed to use it, the same thing happened so I stayed on for a few years,” she shared.
She now knows that irregular periods actually double a woman’s chances of becoming susceptible to the Human Papillomavirus (HPV) that causes cervical cancer. She believes that the doctor should have known this and advised her and as a result she is angry at the doctors for not being thorough.
“Of course, I am responsible for me and taking care of me. I didn’t know the importance of having a pap smear. I don’t have cancer in my family, and I mean I just have a husband it is not as if I have been all over the place… so, yes, I have plenty to be angry about,” she said.
While she is very thankful, Mohamed-Dias said she is also “very angry because I now would never be able to get pregnant” and even though she knows she does not have be pregnant to become a mother she is not ready to “deal with all of that. I am trying to get however active I can in it because there is no point in me going through this if I can’t help somebody else and I really didn’t know the importance of having a gynaecologist just for a checkup,” she said.
She never envisioned that this would have been the result even at the point when the mass was discovered as she felt that it would have been removed and life would have been normal again.
“I will continue to share my story, it is not embarrassing,” she noted.
Her husband and his mother were her initial support base and she recalled her mother-in-law told her that she does not have make a child to become a mother. Her sisters and parents have also been “super supportive” and even her place of employment even though she had only been employed one month before the diagnosis.
She looks at the positive side of things because she knows if she does not, she would become depressed.
She is also thankful to her third gynaecologist who went above and beyond the call of duty to assist her.
Avoid
Meanwhile, Mohamed-Dias is encouraging young women to use her life-threatening story to avoid it happening to them.
“Ask as many questions as you need to. There are no stupid questions. If you don’t know what to ask, suggest some close relative or friend to go to your doctor’s visit with you,” she suggested.
She pointed out that most women don’t know the dangers of cervical cancer or the importance of a yearly gynaecological exam and as such it is important to share her story as yearly exams lead to early detection which saves lives.
She encourages women to find a gynaecologist they trust and ensure they have regular checkups instead of waiting until something is wrong. Women should also have pap smears done and encourage their relatives to do the same.
“Learn the symptoms of cervical cancer [there usually aren’t any until it has progressed]. Some are: bleeding between periods, bleeding after intercourse, bleeding after douching, bleeding after a pelvic exam, bleeding after menopause, pelvic pains not related to your menstrual cycle, back pains, leg pains, heavy or unusual discharge that may be watery, thick, and possibly of foul odour,” Mohamed-Dias said.
