A Woman's Health Journey with Tish Singh
By Tish Singh
My name is Tish and I am 23 years old. I live in South Africa, have a law degree and am currently completing my Masters degree. But none of the formalities really matter, because I am just a woman experiencing life though its various complexities and unforgiving beauty. Just like many women, girls and people with vaginas, there is a specific set of struggles I face due to my sex. Over and above the societal implications of being a woman, there is an array of health implications I deal with which have stemmed from my womanhood. It is exceptionally difficult for me to talk about my journey and some of the health issues I have struggled with because coming to terms with anything I cannot control presents me with a tumultuous flurry of emotions. However, in an effort to offer support, comfort and empathy to others who have experienced or are experiencing the same struggles, the risks associated with being vulnerable and telling my story are worth the help I may be able to give to others. If I am able to help even one person through their journey, the risk of bearing my physical and emotional scars will always be worth my energy. So here goes…
I was diagnosed with polycystic ovarian syndrome (PCOS) when I was 15 years old, after having struggled with extreme period pain for almost 5 years. My diagnosis was symptomatic, which means that due to the external symptoms I displayed, my Doctor determined that the cause was PCOS. He did not perform an internal exam as I was too young and not yet sexually active. He prescribed a pill to me, which was what they call a ‘low dose’ pill. He explained that the pill will help to lessen the effects of the PCOS. I took the pill for a while, but I developed headaches and felt generally unwell. So, I stopped taking the pill. By the time I stopped taking the pill, my family and I moved to a different province. Since I was still experiencing many complications associated with my period, my mother knew I needed to see a Doctor again. I suffered with extreme period pain, heavy bleeding, headaches, bloating, nausea and an upset stomach. (This was all over and above the premenstrual syndrome symptoms I always experienced roughly a week before I would get my period)
I consulted a Doctor in the same year I moved to a different province and he was allegedly one of the best Doctors in the province. I was re-diagnosed with PCOS after he asked me a few questions and performed an ultrasound. He said he could not see anything on the ultrasound because I was too fat, and he could not perform an internal examination due to the same reasons my first Doctor could not perform the exam. He was exceptionally rude and mean to me, telling me that he was sure I had PCOS because of how overweight I was and due to the fact that I had a few pimples on my skin. (For anyone who does not know, the symptoms of PCOS include: weight gain due to insulin resistance, acne, excessive hair growth, pain during periods and irregular periods) He did not send me for a test to determine my insulin levels or any other blood tests for that matter. He took one look at my body and took the level of pain I was experiencing into account and diagnosed me with PCOS. (He was supposedly an expert on PCOS) After diagnosing me and telling me that I need to take diet pills in order to suppress my appetite so that I can lose weight in order for my PCOS symptoms to lessen, he prescribed the pill to me.
It must be noted that for people who have PCOS, a change of lifestyle and diet is necessary in order to curb the symptoms associated with PCOS. Due to the unstable insulin levels experienced by people who have PCOS, a change in diet and lifestyle is crucial in order to maintain overall health. However, diet pills which are oftentimes dangerous due to their chemical composition, are not crucial or necessary. And my mother told the Doctor that she refused to let her 16-year-old child take diet pills. She told him that if I needed to maintain a healthy lifestyle due to my condition, I would do so naturally. So, I did not take the diet pills, but I did start taking the pill. The pill which was prescribed to me was a ‘high dose’ pill and caused a few mild headaches and made me feel nauseous. However, my pain lessened – so I was happy. The Doctor did not inform me of the possible side effects of the pill or the dangers associated therewith. And what is even more concerning is that the lack of care on the part of the medical fraternity is evident in the way Doctors handle issues relating to women. There have been so many women whom I have spoken to, who have said that they had no idea of the dangerous effects of the pill. This is evidence that Doctors do not adequately inform their patients of the full extent of the possible dangers of the pill, whilst knowing exactly what can befall a person who takes it. Not knowing any better, I took the pill.
I stopped taking the pill for a few months because of the nausea I was experiencing, however, towards the end of 2014, I started taking the pill religiously as the pain, heavy bleeding and other symptoms I had during my period were hard to manage. Then, as I went off to university in 2015, my life completely changed. I developed thrombosis in my brain (sagittal sinus thrombosis) due to the pill. I suffered a mild stroke, vision deterioration and was hospitalised. (Among a plethora of other horrors) I will not delve into the intricacies of my struggles with thrombosis as that is another story for another time. I must mention however, that because of my thrombosis, I can never take the pill or any other form of hormone therapy again. I cannot even use the patch, an IUD which is hormone based or any other form of contraception which emits hormones into the body.
In 2017, I consulted yet another Doctor due to my painful periods and all the other symptoms I was experiencing which were related to my period. She told me that I have PCOS, (after performing an internal examination) but that she knew I could not ever use the pill. She informed me that I may also have endometriosis, but she could not make a diagnosis until she performed a laparoscopy. (A laparoscopy is used in this case as a diagnostic operation, as endometriosis cannot be diagnosed via any other means. It is tissue similar to that of the endometrium which occurs outside the uterus, so no ultrasound or internal scan can rule it out) She told me that there was really nothing I could do in terms of lessening the symptoms, other than making lifestyle changes. She gave me prescription pain medication and also medication which would help with the amount of bleeding I was experiencing. I became disheartened as I had consulted so many Doctors who told me the same thing – there was nothing I could do.
Fast forward to 2019 – debilitating period pain, (oftentimes I have had to miss my lectures, tests or exams due to the fact that the pain I experience is so debilitating that even walking is a struggle) heavy bleeding, violent bowel movements during my period, extreme PMS symptoms and many other side effects related to my reproductive system. I decided to consult a leading Gynecologist, who came highly recommended by Doctors as well as family members and friends. The Doctor asked me about my symptoms, did an external ultrasound and also asked me to go for a few blood tests. He wanted to check my insulin levels, as insulin resistance is a symptom of PCOS. My results came back and my insulin levels were fine. The Doctor said that he thinks I may have both PCOS and endometriosis. He told me that he is 99% sure I have endometriosis but will need to perform the laparoscopy. I have not yet been for the operation as I am scared and hesitant. I also feel demotivated and discouraged due to the fact that even if I am diagnosed with endometriosis, there is nothing I can do about it. Usually hormone therapy is used to treat endometriosis – this is something which will not be possible for me, due to my history with thrombosis. It feels like a ‘catch-22’ situation, which is largely the reason why I have not been for the operation yet. And now, with the situation the world is presented with due to COVID, there is even less of a chance I will have the operation this year. It is, however, something which needs to be done.
Having detailed some of my experiences and shared a bit of my turbulent health journey, I want to emphasise the fact that I want to help and inform others. I hope to offer others who are also suffering, some support and empathy. I also want anyone who is suffering to know that they are not alone. Whatever you are going through may make you feel helpless and hopeless, but there is support, love and help waiting at the end of any painful experience.
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