Insight Series – My Struggle with Endometriosis
For as long as I remember I had painful periods and the older I got, the worst they became. I was taught that's its "shameful" to talk about your period, you need to hide it, people shouldn't know about it. And I still agree with that but at the same time I know that it's something that needs to be talked about to a certain extent. Girls should know when it's not normal.
I remember when I first started thinking something was wrong. I was approaching the end of my 2nd year into my degree and every month, during my period I would miss 2 or 3 days of classes. My GP just put it down as bad periods, and explained my low iron levels as "bad diet" even though I knew I was eating enough iron rich food to not need to be on tablets.
Wthin the space of a year my diagnosis changed from dysmenorrhea to urine infections to IBS to Pelvic Inflammatory Disease.
I was on an almost constant stream of antibiotics.
Multiple scans came back clear and yet my pain increased.
I was made to believe I was weak, I had a low pain threshold, so I kept quiet. When people asked how I was I smiled and said fine, even though I was taking painkillers around the clock just to function. Things only changed when I decided to switch GPs.
During the first appointment I explained things to my new doctor and she asked me if I had been checked for or told about endometriosis. As she told me about it, I knew without a shade of a doubt that's what I had. I had read about it but I had never wanted to admit to myself that it was a possibility. After almost 2 years since my symptoms had begun I had a laparoscopy. Laparoscopy is the only method by which endometriosis can be diagnosed as the scarring it causes does not show up on scans.
The surgery showed scarring on my uterus and pelvic adhesions.
The pain wasn't just in my head anymore and finally I was being taken seriously. Regardless of all of this evidence though, I still had no official diagnosis. I was given pain medication and put on the pill in order to minimize my periods, instead of getting them every month, I could only get them every 3 months.
The pain came back
In 2015, the pain came back but my GP refused to refer me to a specialist. Before I knew it the pain was so bad I was missing almost a full week of work every month and I was spending nights crying in pain. I couldn't breathe through it. I couldn't even think straight.
I remember thinking I was dying. I remember thinking "my body can't handle this" and to some extent I was right. I blacked out a few times due to the amount of pain I was in and there were days in which the pain was so bad I was bed bound. In the space of a year I had been in the A&E 4 times. My months were equally divided between pain filled days and days in which I was physically exhausted.
After almost 6 months I was referred to a specialist and put on hormonal birth control, which seemed to be the only thing that helped. Many people argue about the side effects but for me, the good outweighed the bad. I was able to finally lead a normal life, I could go to work for the whole months. I could sleep through the night, I could go out with my husband without having to worry about carrying a range of pain killers with me.
If I could go back in time..
I would do more research from the beginning. If I had known about endometriosis, maybe I could have got a diagnosis sooner. Maybe I wouldn't have been in so much pain.
It can take ages to get a diagnosis!
My symptoms started in 2011, I wasn't diagnosed until the middle of 2016. For most of that time I knew what I had but I kept being told "you're too young", "it's nothing serious", "suck it up and stop complaining".
The average wait time for a diagnosis in the UK is 7 years. That number could be lower if there was more awareness.
The Emotional Impact
Endometriosis has a whole range of symptoms but what nobody tells you about is the emotional impact it has on you, the isolation you feel, the fear you have of never been able to have a family of your own.
When they say fatigue they never tell you that, on some days, a simple shower can tire you out. It isn’t a once a month pain, it is constant.
Millions of Women are Affected
Around 1.5 million women in the UK are currently living with the condition. Endometriosis can affect all women and girls of a childbearing age, regardless of race or ethnicity, and yet 90% of people have no idea it exists.
It affects every part of my life, but I know it could be so much worst and I am thankful for my situation. I am thankful that the level of pain has no correlation to the extensiveness of the scarring. Some people go through life with no symptoms and yet are already classed as stage three, others will be in constant pain and be in stage 1. There is no rhyme or reason to it.
Ever since being diagnosed I have joined many online communities and boards and have spoken to women that live in wheelchairs because of the pain, women that suffered problems with their nerves and spine. Women that had to have a hysterectomy before the age of 30.
According to the NHS the most common symptoms include:
- painful periods or heavy periods
- pain in the lower abdomen (tummy), pelvis or lower back pain during and after sex
- bleeding between periods
- difficulty getting pregnant
Most women with endometriosis get pain in the area between their hips and the tops of their legs. Some women experience this pain all the time.
Other symptoms may include:
- persistent exhaustion and tiredness
- discomfort when going to the toilet
- bleeding from your back passage (rectum) or blood in your poo
- coughing blood – in rare cases when the endometriosis tissue is in the lung
There are many communities online where you can speak to people and receive moral support, the best ones I found were:https://www.myendometriosisteam.com/
The author of this piece would prefer to remain anonymous but I would like to thank her and say jazzak Allah khayran for her bravery in sharing her story.