In life you can be thrown with millions of obstacles along the way, some are easy to overcome, but there are those that are just not that easy.
As a young girl, you dream about meeting the right person, the person that you are going to spend the rest of your life with, you dream of your wedding day, and you dream of being a mother.
A long the way, you will have to overcome so many obstacles, from falling for the wrong guy to meeting the man of your dreams. But in this process you sometimes have to endure a lot of heartache. My heart was broken so many times, but most of the times because of my “invincible disease”.
When you are a young girl, your mommy will tell you about the birds and the bees, she will tell you that you will become a young woman, the day you have your first menstrual cycle, and oh my, at age twelve when that day arrived, I remember my mom being so proud, telling all of her friends, that her baby girl has now become a young woman, you cannot help yourself to also feel proud, but what a lot of people don’t understand is that with becoming a young woman, there is a lot of pain involved. I remember looking at the other girls my age, it looked like they did not have a care in the world, it seemed like they weren’t having any pain. They could still continue participating in sports and social activities, everything that I could not do, when it was “that time of the month”. I asked my mom the one day, why does it have to be so painful when I have my period, and I remember her saying that’s just how it is, it is normal.
By the age of fourteen, my period pains just got worse and worse, I ended up missing school so much, just because I could barely move. I will never forget that pain, it felt like my uterus and ovaries were wrapped in barbed wire and at the same time it felt like it was being ripped out of my body. I spent a lot of time in hospital, but because I was so young, I would be admitted for abdominal pain, and I will receive pain medication through an IV, and two days later I will be sent home. Even the doctors said that it is normal to have this amount of pain.
By the end of that year, I finally saw a Gynecologist, I was still a virgin then, so he did not want to do a vaginal exam or scan, but he did suspect my “invincible disease”, unfortunately it was played down as just a hormonal imbalance. I was sent home with a prescription of birth control pills, yes your read right, I was fourteen years old, and I was put on birth control pills. Scary thought isn’t it? The doctor said, it will help with the pain, and to be honest, I would have done everything and anything to just get rid of the pain. I’m going to jump a bit further now, but I am going to say, that I was on four different birth control pills not all at the same time, but because of the terrible side effects, I had to try different ones to see which one had the least side effects, but I will never forget that first one I tried. It’s called Provera, and I remember waking up one night not being able to feel my legs at all, I remember screaming for my mom and dad to come help me, it was such a terrifying experience, I would never want to experience that again.
Jumping to the year I turned seventeen, now it’s been three years of being on treatments for my “invincible disease”, it did not help at all, nothing, nada, niks. I went back to my gynecologist, and he finally decided to look further into what is causing my excruciating pain.
You will noticed that I have been referring to my disease as “ Invincible” the reason for this is because people don’t believe you when you say that you are not feeling well? They say things like but you do not look sick? But you do not look like you are in pain? The truth is, this disease is inside of your body, the only thing that can be seen on the outside is all your scars. This diseases real name is Endometriosis, after being in pain for almost four years, my gynecologist finally diagnosed me with Endometriosis.
What is Endometriosis you might ask: “Endometriosis is a painful, chronic disease that affects at least a 176 million woman worldwide. It occurs when tissue like that which lines the uterus (tissue called the endometrium) is found outside the uterus -- usually in the abdomen on the ovaries, fallopian tubes, and ligaments that support the uterus; the area between the vagina and rectum; the outer surface of the uterus; and the lining of the pelvic cavity. Other sites for these endometrial growths may include the bladder, bowel, vagina, cervix, vulva, and in abdominal surgical scars. Less commonly they are found in the lung, arm, thigh, and other locations.
This misplaced tissue develops into growths or lesions which respond to the menstrual cycle in the same way that the tissue of the uterine lining does: each month the tissue builds up, breaks down, and sheds. Menstrual blood flows from the uterus and out of the body through the vagina, but the blood and tissue shed from endometrial growths has no way of leaving the body. This results in internal bleeding, breakdown of the blood and tissue from the lesions, and inflammation -- and can cause pain, infertility, scar tissue formation, adhesions, and bowel problems.” It is quite a mouthful isn’t it?
Now usually with gynecological issues, you would think that a normal scan/sonar will detect this disease, just like it can detect cysts or gall stones or pregnancy. You would also think that a blood test could tell you something; unfortunately that is not the case with Endometriosis. The only way to definitely be diagnosed is through a surgical procedure called a Laparoscopy. Here’s a bit of a background as to how this procedure works; “Conservative surgery seeks to remove or destroy the growths, relieves pain, and may allow pregnancy to occur in some cases. Conservative surgery can involve laparoscopy (outpatient surgery in which the surgeon can view the inside of the abdomen through a tiny lighted tube that is inserted through one or more tiny abdominal incisions. Also referred to as "belly-button" surgery.) “a lot of Doctors also believes that this type of surgery is minimal Invasive, which is true, because the healing process is so much quicker, this is now for the incisions itself.
After finally undergoing a laparoscopy for my diagnosis, I was told that I have Endometriosis, and that it was located on the following organs: Uterus, bladder, Ovaries, Ligaments and Pouch of Douglas. Now remember I was only seventeen years old then, and I remember clearly how my doctor told me that I might have a problem conceiving one day, it didn’t bother me too much at that stage, as I was in grade 11 and it felt like I still had my whole life ahead of me. As a matter of fact, I was not even dating at that stage. So I just ignored it, and kept on going.
I did have some pain relieve after the surgery, and it felt so wonderful to be able to join school activities and social gatherings. The pain relieve was short lived though, three months after my first surgery, all the pain were back again, I just couldn’t believe that the same exact excruciating pain was back. By now I have just turned eighteen and just started with my Matric (Grade 12) year. I tried my best to cope, and I tried so hard to keep my mind busy, until one day that I collapsed in the classroom, that was when my parents decided to take me back to my gynecologist. I was told that it is impossible for the Endometriosis to back so soon, but my mom was adamant that they check again, because I missing a lot of school again.
I had laparoscopic surgery again, and the doctor was so shocked to see that it has returned so quickly. I had two surgeries in two years, but the pain just kept on coming back. But by now, it wasn’t just during my periods, I was in constant pain every day, my lower back was killing me, my ovaries and uterus were killing me. It just never ever went away.
In 2006 we moved to a new province and little Town, I did not have a medical aid at that stage, so I had to make use of our government/state hospitals and doctors. I would be admitted to hospital for such bad pain, but then get sent home with Panando. It was the worst thing, because it felt like they just didn’t care or didn’t help. I started traveling via bus from Mokopane to Pretoria so that I could go to Steve Biko hospital for help. I would get to the hospital at about 04:00 in the morning, and only be seen by a doctor at about 15:00 in the afternoon.
Thinking back now, that did not even help at all though, I only received pain killers, and I was only told at the age of 23 that I would need to see a fertility specialist because I might never get pregnant. 23 wasn’t a bad age to start thinking about having kids and starting a family, I felt that I should rather start early and who knows maybe I am lucky. I have to say this thought, at that stage all the doctors believed that pregnancy is a cure for Endometriosis, and I believed that.
I was finally back on a medical aid, and after four years of not being able to have another surgery again, I was now able. We are now married for five years, and in these five years I’ve had six laparoscopic surgeries to treat my Endometriosis, I had my last surgery in 2014 which was open surgery called a laparotomy. This was because even though I had the laparoscopies, I kept on having pain in my left side, it was always the left ovary causing me so much pain, and not just that I was having other symptoms now as well. I was having excruciating painful bowel movements and at times some blood in my stools. I started getting worried about because it just started getting worse and worse. I finally decided to go to my GP, but all that he could diagnose me with was either Colitis or IBS (Irritable bowel syndrome). The pain in my left side/ ovary was completely ignored, because the scans were always normal. The doctors started looking at me as if I am crazy, from 2009 to 2014 I saw eight doctors, and none of them could give me the reason for my pain. That wasn’t the only problem; my stomach would sometimes be so bloated that I would look 6 months pregnant. Sex with my husband was just so painful that we barely had a sex life, that he has never given up on me was just a Godsend. I finally started doing some research about Endometriosis; I have always had an idea what it was but this time I was doing in depth research. I joined international Endometriosis support groups, and it was in one of those groups that I came across an endo specialist. Right there and then I decided I am making an appointment. Now you sometimes wait months for an appointment with an Endo specialist, it is all because we only have a handful of specialists here. I finally had an appointment, I researched the doctor, I read reviews about it, I researched all my symptoms, I research all types of treatments, and that one day of reading up on the different surgeries, I finally discovered that with all of my laparoscopies, the doctor were using a technique called ablation and laser to clear out the Endometriosis. On discovering this, I realized that ablation and laser only removes the top layer of the endometriosis that is why the disease kept coming back. The disease was never removed from the root. So that explained why I will only be pain free for a couple of months.
I also realized that there is actually a procedure called excision surgery, which means that the surgeon cuts out the “endo” from the root, giving you more time for the disease to return. This procedure also has a bigger success rate. I couldn’t wait to go see this new doctor, I have just heard wonderful things about him.
April of 2014 my appointment date finally arrived, and it was the first time in years that I felt so comfortable with a doctor. He asked me about my symptoms, and I could talk to him about it. He scheduled a virtual colonoscopy: “ It was probably one of the weirdest medical procedures I had to ever endure. First of all you get this yucky stuff to drink, this is now to clean out your colon, and believe me that stuff works. If you have never pee’d through your bum, then after having this, you will. The morning of the procedure I had to take a liquid that smells like Sambuca, but tastes disgusting, this is to highlight your organs. When it was my time to go for the procedure I was handed a gown, KY jelly and one huge material cotton tampon, it was massive, it was probably as thick as when you put 4 maxi tampons together. I was giggling when I finally got it in; it just did not feel right. Once you are on the procedure table, they start administering CO2 through a catheter in your bum; you are then scanned with a MRI scanner, And whallah you have 3D scan of your intestines. You do have some discomfort afterwards, but not to much to not being able to handle it. It took about two weeks before I could see the specialist again. The pain was just getting to much for me, I just couldn’t cope anymore.
I finally had my appointment again, and I remember the doctor saying to me that wow, there is a lot going on inside of you. I had been having terrible pain on the left side of my abdomen, and with the virtual colonoscopy they picked up that my I had Endometriosis on the sigmoid colon and the left ovary was attached to the sigmoid colon, I had endo on the rectum and an endometrioma on the left ovary as well. I received my surgery date, and had to have open surgery which is called a laparotomy. With this surgery they removed endo from the colon, rectum, the endometrioma from the left ovary, endo on the right ovary as well behind the uterus. I was booked of for six weeks, and I felt absolutely wonderful. I was pain free for about 7 months and then bam all the pain was back, if not worse. That is the problem with this disease, it just keeps coming back. I can still handle the surgeries, and I know that I will be having more in the future, but what I cannot handle is the emotional trauma it has put me through. Because of this disease I have been trying to conceive for almost six years, the thought that I might never be mother, that thought just breaks my heart in pieces.
This was my biggest dream, to start my own little family. I have everything I have ever wanted but there’s just this empty place in my heart. I have so much love to give; I so badly want to complete my family.
We knew it was going to be difficult to conceive, I mean the doctors warned me from when I was 17 years old, but damn, we never thought that it would be almost impossible.
Unfortunately my surgery of last year ( 2014 ) was unsuccessful, and I will be having my 9th surgery on the 4th August this year.
This disease has taken so much from me, we really need a cure, we really need help to just live a normal life. People aren’t taking this disease seriously enough.
I thought to myself, if I feel this lonely fighting this disease then surely there should be other woman in South Africa as well?
I decided to start a public page on Facebook, just to spread awareness and to educate people and to also debunk all the myths going around about Endometriosis. Before I knew it the group grew and I decided to open a closed group on Facebook, a place where ladies can speak from their hearts, but also to find support. I have been overwhelmed with just how many ladies suffers with this disease, and how many of my “Endo sisters” have been suffering alone.
Endpain (Endometriosis Society of South Africa) and I got together and we had our first march to raise awareness about Endometriosis, it was successful, we were almost 200 people at the Union building in Pretoria. We also had Endo Sisters organizing walks in Sasolburg, Polokwane and Cape Town. So all in all we were about 500 people spreading awareness.
But this is just not enough, we need to reach more people, we need to reach the government so that we can have the correct treatments available.
We cannot do this alone, we need as much help as possible.
Below please find the symptoms associated with Endometriosis:1. Severe pelvic and/or stomach pain2. Pain during or around menstruation3. Pain during ovulation4. Pain during or after Sexual intercourse5. Heavy bleeding during menstruation6. Infertility and/or subfertility7. Painful bowel movements8. Painful urination9. Chronic gastrointestinal symptoms : Nausea, vomiting, diarrhea, constipation10. Lower back pain, leg pain.
What is the impact of Endometriosis?1. Sever chronic pain is a major factor in up to 70% suicides ( Yes the disease alone might not kill you, but you can lose vital organs like your kidneys, bladder, fallopian tubes, ovaries and parts or all of your colon, it also causes depression, which can lead to suicide)2. It is the leading cause of gynecological hospitalization.3. Multiple surgeries required to treat Endometriosis increases risk of surgery-related morbidity and mortality.4. Endometriosis can spread, invade and cause damage to many organs and tissues beyond the reproductive system, including the bowel, bladder, kidneys, diaphragm, nerves, muscles and lungs.
Let’s debunk the myths:1. Painful periods are not normal2. There is NO cure for Endometriosis3. A Hysterectomy cannot and will NOT cure Endometriosis4. Pregnancy cannot CURE endometriosis5. Menopause cannot CURE endometriosis6. Endometriosis is NOT as Sexual Transmitted Disease ( STD)7. Pre-teens and teenagers are NOT too young to have Endometriosis8. Hormonal/Natural treatments cannot PREVENT or CURE endometriosis
Please join us in raising awareness;
You can visit: www.endpain.co.za where you can register to become a member, and you can also register to join our march for next year.
We are also available at :1. Facebook – Endometriosis Warriors, South Africa2. Twitter - @SAEndowarriors3. Instagram – chellieh
We also have the following email addresses : 1. info@endpain.co.za2. Endo_warriors@webmail.co.za