Founder, Endo Charity (ECOG)
At the age of 14 (1989), I had severe menstrual pain and began to seek for diagnosis since I ended up in hospital every month. I couldn’t understand what was happening to me and felt weird. All my friends go through their menstrual cycle with no hassle yet I was in so much agony. Period pains was normal, I was told, and if I seemed to suffer more than most, it must be because I had a “low pain threshold”.
My mother (the late Comfort Berkoh) would panic when the time of the month got closer because of the pain I had to go through. At the time she was frustrated because all we were told was menstrual pain is supposed to hurt and it was normal. I went through series of x-rays and scans and was told I had cysts over the years. I was diagnosed with dysmenorrhea (painful periods) and put on pills, but I was still in pain. I dreaded going to the hospital every month because the nurses would insult me and say my mother was pampering me. My pulse would always go up the minute we go there. It was a real struggle.
The mystery of this strange disease has often affected my studies immensely. I had always wanted to go to a boarding school but I could never have that privilege since most of the days in the month I was in so much pain (unexplained). My parents had to send me to a school that will be close to home.
In 2000, I went on a holiday to visit my family. I was rushed to A & E (Accident and Emergency) since I was in excruciating pain. Upon arrival, the nurses asked a few questions and then as usual since it was ‘menstrual pain’, I was put on the lowest level of emergency and asked to wait. I was rolling all over with pain; at this point my brother in-law was furious. He approached them and asked that they attend to me as soon as possible. He also asked them to investigate for ENDOMETRIOSIS; since his ex-girlfriend had similar symptoms.
I was taken in and had a minor surgery (laparoscopy – camera through the belly button) to confirm if it was endometriosis. The feedback showed that I had stage 4 of endometriosis. Finally at the age of 25, there was a name for the condition that was misdiagnosed for 11 years. I panicked and wondered what disease that was, and by that stage, major surgery was the only option. The growth was so massive on my organs and I was told surgery couldn’t be done immediately. I had to take zoladex injections (chemically induced menopause).
Nobody should ever have to go through this, especially at that age. Suddenly I had to deal with menopausal symptoms; hot flashes, mood swings etc. My story is extreme and points to the need for early diagnosis. I had sought for help in different health institutions to no avail. The condition is not easy to diagnose, because its effects are so diverse and the intensity of the pain does not necessarily relate to the severity of the condition. Each case needs to be handled individually, and the patient may have to make some difficult choices. Your strengths and resources, as well as your pains are yours alone. The first surgery was done after a year of the zoladex injections. I lost the use of my left leg completely a few days after the surgery. I was booked for physiotherapy for nine months. A device (Electrical Muscle Stimulation) was given to me to give me (shocks) all in aid of enabling movement in my left leg.
With the pressure on the right leg, a disk in my spine was pressing on a nerve and sending shooting pain in the leg that was not functioning, also diagnosed as sciatica. I had sleepless nights and with pain. Eventually I was referred to a chronic pain clinic and was told I would not be able to use my left leg ever again. I prayed and prayed and prayed, and never accepted the fact that I would not be able to use my left leg again. God heard my cry and healed me of the paralyses after almost 11 months.
In 2007, my cousin introduced me to Dr. Hiadzi of Lister Hospital; who was formally at the Police Hospital. I remember my first encounter with Dr. Hiadzi, he asked the right questions and I knew at that point that he understood my pain. In 2010, I was in excruciating pain and went in for consultation. It was confirmed that I had a huge fibroid that was sitting on a nerve and was giving me shooting pain in leg, cysts and the endometriosis needed to be taken care of. I had to have surgery but the amount quoted was a bit high and so I decided to follow up at Korle-Bu instead. I was told because of the adhesions I have as a result of the other surgeries I had, I could bleed to death. I panicked but still went to Bartor Hospital on the way to Ho because I was told they were equally good but cheaper. I was booked for the surgery but when I got there it was cancelled. I was frustrated since the pain was getting to me. I had a chat with my boss and she mentioned that going back to Lister might be the best choice since Dr. Hiadzi assured me that I will be fine after the procedure. I secured a loan and went ahead with the procedure at Lister Hospital. The next day I was walking around the hospital. The quickest recovery ever! Thank God it felt like the pain was taken away with no scars. My God has been with me all along. He brought the pieces together and made me a storyteller and now I know it is well.
I had a 7th surgery in July last year at Lister hospital. Managing this chronic disease is very expensive. I have had to secure loans to cover my medical bills. There is currently no cure for endometriosis, so we have no choice but to put our bodies through all this in the hope that something will help to ease the pain and symptoms.
Women with endometriosis often lose their confidence, and carry a burden of sadness that longs for release. I have gone through that stage where my self-esteem was greatly affected. There is no pleasant way of experiencing this condition, and no one way of coping with it. Whatever brings comfort is essential. You are your own advocate and need to find out what works for you. I would like to believe that cases like mine could not occur nowadays; but I fear they will, until there is official awareness of the cost of ignoring this condition, the cost to sufferers, their families and the wider economic community.
Endometriosis is not easy to talk about, (the invisible disease). It cannot be explained in a phrase. It doesn’t show on the outside. It touches on areas of women’s experience we are sometimes ashamed to talk about.