Support gives me hope that I can be cured of agony of endo
WHEN you break a leg, it’s put in plaster and people can appreciate the pain you’re in.
But imagine having a disease which no one can see, leaves you in excruciating pain everyday and can cost you your job, relationships or even the chance to start a family.
One in 10 women in the UK have their lives blighted by endometriosis every day.
This month, women around the world will wear a yellow ribbon for
Endometriosis Awareness Month to try and get people talking about this debilitating illness.
One woman has shared her struggle with the condition which she has had for more than 20 years.
Rani Iqbal, 35, from Ormskirk has stage four endometriosis (endo) and has undergone five surgeries to remove cysts and scar tissue around her reproductive organs and even her bowel.
She was only diagnosed at the age of 22 despite experiencing symptoms since she was a teenager.
She said: “I’m in excruciating pain everyday and it’s only getting worse.
“I was 14 and I remember having really bad period pains. My periods were very irregular and heavy and my stomach was always swollen.
“The pain I experienced was so severe that at times I couldn’t go to school.”
Over the years Rani, who works as an executive PA, went back and forth to her GP complaining of these symptoms only to be told it was “bad periods” and there was nothing they could do.
She said: “I also had mood swings and I soon realised that this had to be something more then just ‘bad periods’.
“My periods were happening every three weeks and the pain was unbearable. I knew this was not normal, but I just hoped each month it would get better, but it never did.
“I started missing days of college as I couldn’t pull myself out of bed.”
She started to develop severe acne on her face – another symptom of endo – but she just put it down to being a teenager.
As Rani entered her early 20s her symptoms showed no sign of easing and she had still not been given a diagnosis.
But all that changed when she collapsed in agony at home and was rushed to hospital.
She said: “I was doubled over in pain and after a lot of morphine and doctors prodding me - I was taken down to theatre where the surgeon performed a laparoscopic surgery.”
What the surgeon found was burst cysts and scar tissue all over Rani’s ovaries and she was finally diagnosed with endo.
At this point, the former beauty pageant contestant was working as cabin crew and had to be grounded for a few weeks after the procedure.
Rani said: “The pain continued when I returned to flying, and I felt no one at work fully understood how bad my condition was. It was a little while after, having took time off work that I lost my job.
“I felt angry and ashamed that I was out of a job for something that was beyond my control.”
The loss of her job knocked her confidence and brought on a lot of anxiety and isolation.
“I felt I was alone, although I had an amazing support system around me in my family and friends, who witnessed the emotional breakdowns I had.”
By 2010, Rani’s condition had become unbearable, she underwent a second unsuccessful surgery to remove the endo but it returned.
She said her life was no longer enjoyable, she lost two more jobs because she couldn’t get out of bed with the pain.
She added: “It has impacted intimacy in my relationships and taken over my life.”
Some women with endo have found that the symptoms have lessened during and after pregnancy because the menstrual cycle is temporarily suppressed but that’s not an option for Rani at the moment.
“I need to have a baby before it’s too late but I feel my biological clock is ticking away. I am 35 now and unfortunately not in a relationship but I feel stressed and pressured to have a child before I get older, but even then there is a high possibility the endo will return after having a baby.”
After being referred to Liverpool Women’s and following consultation with her surgeon, Rani underwent a fifth procedure in 2018.
This time, the burst cysts and scar tissue had wrapped around her bowel and she needed an extremely complicated and dangerous surgery to remove it.
But since then it has once again grown back.
Rani added: “Day to day is a struggle. I suffer from depression and anxiety yet I just plod along and try not to moan although my family know how bad I suffer.”
She hopes by speaking out about her experience that other women won’t feel so alone and that others will be more aware of the reality of living with endo. She plans to write a blog to help other women.
She said: “I really think people need to be made aware about how serious endo is and I have found some support having joined a few forums for women who suffer just like myself, and we are able to voice our worries and concerns and ask questions and I guess it does bring me a little hope that one day I’ll wake up and be cured.”
Visit Endometriosis UK online for more information, advice and support.