Did you know that March is Endometriosis Awareness Month?

Endometriosis is an inflammatory condition where endometrial tissue (tissue similar to the lining of the uterus) grows outside of the uterus, such as the ovaries and fallopian tubes but it can appear anywhere in the body. 

Endometriosis can affect women of any age. It can be difficult to diagnose endometriosis simply because the symptoms can vary considerably, and many other conditions can cause similar symptoms.

The symptoms of endometriosis can vary. Some women are badly affected, while others might not have any noticeable symptoms.

I am fellow sufferer, and it took over 20 years to diagnose. 

I was told that it is a natural to experience pain during the menstrual cycles and it is also common to have heavy periods, but I used also suffer from nosebleeds too just before I had my cycle.  I believed this was a warning sign that I am due to begin, but now I actually understand that I had it was endometrial tissue all the way in my nose.  When I first learnt, this I could not understand how it could travel that far!

As a teenager, my GP brushed it off and told me it was normal.  I was living in Kenya at the time and there was nothing much I could do.  I just accepted it and got on with my life, trying to adapt every month with the heavy periods. 

Then about 10 years ago I had a small surgical procedure and started experiencing severe lower abdominal pain, mainly in right side, post-surgery. I went to see a number of specialists with numerous tests but they could not find a reason for my pain. I was told it may be due to my surgery and to give myself enough time for recovery. 

Six months later, the pain was still present and getting worse. There did not seem to be a rhyme or reason to the pain. The pain was worse in the morning and it would actually wake me from sleep.  I would struggle to get to work and sometimes I could not sit for the whole day.  I would stand while treating my patients and also when travelling on the tube.  I also found it very painful when I was doing up my trousers, as it was sore in my tummy button, especially if the silver hook just lightly touched my belly button – just thinking about makes me squirm even now. I was told that maybe I am imagining it, or I am stressed or it is diet related.  I changed my eating habits, meditated and in the end, I did think that maybe I am imagining it.  

Again, I just got on with my daily lifestyle, best I could.

Approximately two years later, the pain intensified tenfold, and I saw the surgeon again and he advised that we could do an exploratory surgery but again the MRI, contrast CT and Ultrasound scan showed no problems.  He did suggest that maybe removing the appendix may settle down the pain.  At this point, I was at the end of my tether and was willing to give it go.

I ended up having an exploratory surgery and low and behold – I had endometriosis.  In fact, my appendix was covered in endometriosis which was excised which explained the pain in my lower abdomen.  

There is no medical cure for endometriosis. 

Excision is considered the Gold standard treatment.  

I felt absolutely normal for the first time in years.  I had a diagnosis and I felt happy that I was not imaging it.  You really begin to doubt yourself!  But the worse thing is, this pain is internal and NOBODY can see it.  It isn’t a large gaping wound or fracture that has a bandage for people can relate too.  Sometimes, people think that you are putting on an act. 

Unfortunately, for me, the story did not end. It is related to stress and at the end of the year I lost my father, and the pain began again.  I found that I could not process his death and could not grieve for him the way I would like too and plus I have inherited his keloid skin which means I get scar tissue growing inside me.  The previous surgeons had done a minimal invasive procedure which meant that they had gone through my belly button and I had built up scar tissue with endometriosis in there.  I had another procedure 12 months after and so far, I have been coping.  

I have the occasional flare ups but I am much better at negotiating through the pain once I discovered the name of my condition.  When the flare-ups occur again, it reminds how painful it can get.  It is like you forget that they got this bad.

Living with endometriosis has taught me to be resilient, respectful and compassionate to others who have similar disabilities that are not easy to see.

Looking back, I don’t know how I did it.  

Please know that you are not alone and that if I can come out of it, so can you.