E is for Endo

Updated: Sep 18, 2020

‘’Perhaps it is just very bad period pain?” – Just one question asked by many (including yourself) when you are suffering without an answer.

At the age of 19 my back would pulse with pain, from my hips down through to my legs, leaving me feeling nauseated. This is where it all began and unfortunately my symptoms were dismissed as ‘’growing pains”. The pain was not just once a month, it was whenever it bloody felt like it! Thanks ‘’growing pains’’.

When I was 23 I looked around yet again for another opinion. Surely the growing pains stop at 23.

After the first appointment I was sent to a specialist and this is where I first heard the term ‘’Endometriosis’.

My first (of many) laparoscopies was scheduled and the procedure revealed stage 4 Endometriosis and Adenomyosis. I had one year of absolute bliss after having the Endo removed and I began to feel like a new person. Then, without warning it returned with vengeance! I suffered from migraines and the pain was yet again unbearable.

So along came the 2nd laparoscopy. This showed that the Endo had indeed returned and would need to be removed once more. Now, most people who have experienced Endo would have heard the saying ‘pregnancy cures Endometriosis’. Well, I thought, that’s super! What hope did I have of curing my Endo when my reproductive system was such a mess, pregnancy seemed impossible/unlikely/a long shot. So to add to the pain of Endometriosis, a very common cause of infertility, along came the complications of not being able to start a family. I tried many, many, MANY options including hormone replacement therapies, surgeries and sought the advice of specialist after specialist. During this time I can honestly say that the emotional pain was far more of a battle than the physical.

For as long as I can remember I only ever wanted to be a mother. It seemed that while everyone around me was having a child, I on the other hand could not even get out of bed some days without looking like a question mark; bent over, clutching onto my stomach and making my way to the bathroom to start the day. I spent many nights sitting at the bottom of my shower, hoping the hot water would ease the pain. One night I looked up from the shower to see my husband sitting on the edge of the bath. His face said it all. He looked so defeated himself. He had bought books, cooked meals to help my stomach cope with the bloating and pain, he went on forums and warmed my heat pack in the microwave again and again. In his face I could see he was also in pain, but there was no treatment, pill or heat pack that would help him. It was the first time that I opened my eyes to see how this could affect the ones I loved.

We would cancel so many dates due to my pain, so many weekends where I would not get out of bed to see the day. This was not only from the pain, but from the utter disappointment and darkness that took over my mind when my body was not able to do what I needed it to.

Once I turned 30, I decided to give it one more try. A new Endo diet, hormone treatment and one more procedure, then that would be it. I needed a break from it all, physically and mentally. My husband and I spent time talking about adoption and started the process by putting our names down with an agency. This was a good way of ‘’letting go” of the obsession with getting pregnant.

At 31 my life took a HUGE turn. It was just check up at my doctor’s following my last procedure. She sat down and said ‘’you won’t believe this, but you are pregnant”.

It was a sentence I never thought I would ever hear. My doctor admitted that she was as shocked as I was. At 32 years old I had a beautiful baby girl. It was the best 9 months of my life and I had the best reward at the end. I still stare at her in disbelief that the day finally arrived. My darling Son followed at the age of 34.

Unfortunately one year after having my son the Endo returned. I have begun hormone treatment and gone back to the good old ‘’Endo diet”. There have been many testing days already having the pain and bleeding and two little ones but the main thing I tell myself is ‘’this too will pass” the bad days won’t last forever. Most of all to take one step at a time when it seems too much.

It’s not just cramps and it’s not just at that time of the month. It’s not something that goes away. When the pain is not there, there is fear of when will it be back. Most importantly, this pain is not in our minds or made up. One in ten women have Endometriosis and yet we rarely hear this term mentioned. The next time you go out, sit on a bus or look around at a group of women, one of them is most likely hiding away a physically and emotionally painful, draining disease. I am hoping the more we talk about how we feel the more support there will be out there for those who are just starting to lose hope or feel like they are alone. Don’t stop asking questions or seeking advice.

Every bit of help and support makes such a difference. It doesn’t have to be much, but I am hopeful that sharing my story might at least open up the door for future conversation.

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