Category : Blog
When I was first diagnosed with Endometriosis, I had no idea what it was, and my family certainly had never heard of it. It was only when I started to Google the condition, that everything started to sink in and I began to worry. There should be a law against Googling any medical condition! At this point, I was already feeling very depressed and I didn’t really know who I could turn to for answers to any of my questions.
I somehow stumbled across the Endometriosis UK website and found that it had a lot of helpful information and, even more importantly, a helpline that you can call and speak to volunteers who also suffer with Endometriosis. This was huge for me as finally, I could speak to somebody who understood the pain and feeling of loss. However, it still took me weeks to pluck up the courage and ring the number but when I did, I hung up and sat with tears streaming down my face. I didn’t ring again for weeks but when I did, I tried to centre myself and stay strong, if I could just hang on ring after ring, I would be ok.
I came through to a lovely lady who understood exactly how I was feeling and told me that it was ok to be scared, worried, anxious and even low to the point of depression. She seemed to understand just how lonely I felt, feeling like no-one understood this invisible condition. Just speaking to this lovely lady made me see that even though it’s normal to feel the way I did, it still didn’t help my battle emotionally and mentally and that was something that I had to overcome on my own.
Please, if you find yourself feeling this way, or even if you would like more information around Endometriosis, then please head over to https://www.endometriosis-uk.org or call to speak to one of their lovely volunteers on 0808 808 2227 (please see their website for opening times.) You won’t regret it!
When I began to Google Endometriosis following my diagnosis, one of the main side effects which affected me the most was that it can cause fertility issues. I have to admit that this was one of the hardest things to face, especially as not long after being diagnosed, my sister fell pregnant. I felt suffocated like I couldn’t face talking about baby stuff, the bump and general baby talk knowing that I may never feel the same feelings she was. I think one of the biggest things people do not realise is how hard it is for one to live with chronic pain 24 hours a day and have the doctors and specialists telling me that I needed to have a baby soon as I was rapidly running out of time.
I tried hard to compress that feeling deep down inside because everybody was so happy. Honestly so was I! I was happy for my sister but secretly I was falling to pieces and nobody could see that. I can now openly say that yes, I did struggle with my sister’s pregnancy and the only reason I feel I can admit to this is because I have realised that I am not the only one out there who feels this way. When I came across a conversation thread about another lady who felt the same way I did about her sister’s pregnancy, I felt such a relief and not like a horrible, mean person.
My beautiful niece is nearly 5 years old now and she means the absolute world to me. Despite everything I have gone through, I love her wholeheartedly as though she is my own. If there is anything this experience has taught me, it is that no matter what you are going through, or how hard it is, someone has been there too, and you shouldn’t feel alone. I kept my feelings hidden and kept on going like nothing was bothering me when it was breaking every part of my existence. If only I could have openly said that I was unable to cope very well and perhaps more consideration would have been taken.
I find it very sad that I couldn’t hold my sister’s or my brother’s baby (who was born last year) in my arms for more than 5 minutes without the shoulder pain making my arms weak. I wasn’t even able to sit on the floor and play with my older Niece because of my pelvic pain. The older one is beginning to understand that her aunty isn’t well and often asks questions like “why are you in pain”, “why do you walk with that stick” or even let’s play stuck in the mud but “I know you can’t run” so we will play slowly. It simply breaks my heart that I can’t enjoy my beautiful nieces to the fullest because of my restrictions and the pain I am in. I definitely noticed a difference in how I handled my sister in law’s pregnancy as I am much stronger mentally now than I was back in 2013 when my sister had her baby.
Yes, on days it would make me sad and make me think about my situation but then I would bring myself back to the present moment and try not to think about the future too much and the if’s and but’s. What doesn’t help is coming from a background where life is all about getting married and having children. I was petrified at first of people finding out about my condition and what they would say or think about me, but now it doesn’t matter. What people think doesn’t matter, what matters is how I deal with my life and my circumstances surrounding it. Their opinions do not define me.
It is difficult to convey exactly how I feel and what I experience on a day to day basis. In snippets, I can’t cook, clean (hoover or mop), drive for very long, bend, lift, sit or stand for very long. I know a lot of people reading this probably thinks ‘great you can get out of chores’, but to have the option of doing them taken away from you makes you feel inadequate. The moment when you can’t make it to the loo in time because of the intense pain of climbing the stairs puts a lot into perspective for you.
It feels as though a knife is being pushed constantly into my right pelvic area. Some days my left ovary feels like someone has physically grabbed it and is squeezing the life out of it. When it gets cold I am slightly bent forward as my back causes me excruciating pain. I am constantly living on heat patches and hot water bottles. And let’s not forget the 9 weeks that I bleed when I have my period. Yes, 9 weeks, because life wasn’t complicated enough with chronic pelvic pain and fatigue. The endo belly makes me look pregnant because of the constant bloating and swelling. Waking up numerous times in the night to turn my heat pad on and take painkillers after my prescribed sleeping pills. I have accepted I will probably have some kind of pain level for the rest of my life but I’m not accepting the pain levels I feel every second of every day of my life. It is soul destroying and most importantly, life destroying. Imagine for a minute having permanent flu symptoms or a permanent migraine, now imagine having it for more than 5 years. Well it doesn’t sound so appealing now does it?
My social life took a huge nosedive. I went from being out all of the time to hibernating in the comfort of my home and never feeling like I could ever go out. I am anxious in case I have a flare up and need to get home. I didn’t want to let my friends down all of the time, so I started saying ‘no, I can’t come out’ whenever I was asked even though my heart was aching to go out and live life like a normal person.
I lost my job due to medical capabilities and all of the wonderful friends I had made. I also stopped driving for a while because on one occasion I was on my way back from handing in my university dissertation when suddenly, I swerved my car on the M25 just because of the sheer intensity of pain and had to have an ambulance called out. I have had doctors called out in the middle of the night due to the severity of the pain, numerous runs where all they can do is give me more morphine and send me home. Even they can’t do anything because guess what, I have endometriosis!
Despite all the struggles I have endured, I laugh now. Don’t get me wrong, I don’t laugh when people commonly tell me ‘well you made it there’ meaning ‘so you can make it here’. These conditions are so debilitating that you have no idea how and what you will feel like day to day, emotions are constantly up and down and don’t even get me started on endometriosis combined with periods! I simply have no words for how much pain my body makes me feel, it really is beyond imaginable.