Endometriosis Mini Series – Arti’s Story
Name: Arti Shah
Age: 39 yrs
How long did it take for you to be diagnosed with Endometriosis and how has it been for you growing up?
It took about 14 years, my painful periods began, I always wondered what was going on with me, but I thought it was normal. My childhood and teenage years were very overwhelming with many emotional hurdles along with other illnesses, this lead to severe depression and I had tried to commit suicide at the age of 15. I continued to suffer from symptoms such as; insomnia, migraines, anaemia and a compromised immune system.
I got diagnosed with cysts in my ovaries, along with fibroids in my breasts and uterus at the age of 17. By the age of 22, my periods continued to be excruciating. I was officially diagnosed with Endometriosis stage 4 at the age of 24, during a surgery for my cysts. At first I was misdiagnosed with IBS, which is common for many women with this condition.
What kind of symptoms do you experience and how has it affected daily living and your career?
I experience painful periods to the point where I get breathless due to the severity of the pain. The pain can travel to my neck, head, lower back and abdomen. I get intense leg pain and swellings on my feet and hands, and at times it’s hard for me to walk or use my hands. I also get painful bowel movements along with constipation.
Endometriosis has changed my entire life emotionally, physically, and professionally. The endometriosis progressed to my intestines and part of my colon from the uterus and entire pelvic girdle, and I got haemorrhoids as a result.
How many surgeries have you had and can you tell us in short your experiences both bad and good with this?
Six surgeries, none of which were excision. Excision is the gold standard treatment for management of Endometriosis and we don’t have doctors that specialise in this in Kenya. My surgeries have all been ablation (laser) surgeries, hence the re-occurrence and progression of my Endometriosis. Surgery, both before and after are always hard, but you learn how to cope.
Also, as a result of my hormonal treatment from medication (Yasmin and Belara), one of the side effects I developed was neuropathy, (damaging of my peripheral nerves). I also suffered from insomnia, nausea and dizziness.
Did you feel you could openly discuss what was happening to you with family and friends?
Yes I could, but the hardest part for them was trying to understand or relate to it so you stop explaining it further. It’s a complex condition to understand, unless you have experienced it.
With the lack of Endometriosis specialists in your country, how difficult has it been for you to find the right doctor?
It has been difficult, this is because even though quite a few doctors here know what endometriosis is now, none are really trained or experienced in excision surgery and this forces some women to travel abroad to seek the right doctor, which is costly. Women are tired of being told the pain is in their head, so even though awareness is being raised, it’s not enough, we need more doctors to be trained.
In my experience, I had just about enough of suffering and getting nowhere. I heard about a hospital in Bangkok that a friend told me about, there I found a specialist and was happy with how they were treating me.
What do you think could be improved with regards to medical professionals in understanding and treating Endometriosis?
We need specialists in endometriosis to come in and train our gynecologists in Kenya, especially for excision surgery, so the disease is treated from the root cause and not just burned away, only for it to recur.
We want the mentality of ‘it’s in our head’ to change from medical people, and for them to realise pain of any form, that halts you is not normal. We don’t want to be dismissed because of painful periods and a need for early diagnosis is necessary.
Do you think that young girls in Kenya, could benefit from menstrual health being taught in schools?
Yes, they definitely can, and not just in Kenya but all around the world. We have many groups here that educate young girls in schools about menstrual health and I strongly believe that it should be part of the school curriculum.
Girls should be provided with the tools to try and understand the initial symptoms of endometriosis that start from their menstruation. They should understand and question things like; what colour their periods are, how long they last, their pain levels and the symptoms. Loved ones should be aware on this topic as well, so that young girls are not dismissed by being told it’s just a painful period!
What advice can you give to others with Endometriosis and how can we raise more awareness?
Know and understand your body well to seek help during symptoms. What works for you may not work for others, as all women experience this condition differently. Speak up about it and break the silence as it’s not normal to be in pain. Make lifestyle changes by eating health, exercise and practice meditation.
Know that you are not alone and never give up no matter what, we have a few support foundations and support groups in Kenya like; ‘Yellow Endo Flower’, ‘Endosisters East Africa’, ‘The Endometriosis Foundation of Kenya’. I am currently working on hosting Endometriosis support therapy sessions every two months and my first event is on the 29th of March.
To follow Arti’s Story check out her Instagram handle @artiphotography
Copy by Elysha H
Images by Arti Shah and Endo Found