After suffering from horrible periods and cramps since 13 years old, Erika 18 years old when she diagnosed with Endometriosis. Living in Ireland, she shares her tale with us just three years later:
Erika’s Journey: This is just a short story of the life and pain I’ve been living in! My name is Erika, I’m 22 and was raised in Dublin. I still live at home with my mother and brother seeing as its so hard to find a home at this minute in Ireland. It all started when I had my first period, I was in a lot of pain and had no clue of actually what was happening to me? All young girls oh I can’t wait for my periods to come so they would feel more mature ‘grown-up”. Where with me it was a different story completely, from my first periods all I remember was pain, very severe pain and didn’t know how to control it.
I thought I just had bad periods because my sister (5ys older) always suffered very bad which led to ambulances been called so I was scared that I was going to be the same. But when my sisters stopped ovulating her pain would go and she would be back to normal, when I wasn’t like that every month was a dread without a doubt the would come and with a bang! I couldn’t walk, move to go the toilet, bend to pick up anything id be left immobile for days and the pain was so awful I needed help I didn’t know how to make it stop 2weeks before my periods came I’m in pain and when the arrive yill days after they go it’s not right ! so after years of battling with my weight since I was a child with i coped with because of all forms of abuse I suffered I learned how to cope with food and depended on it to fill that hole in my stomach . as the years going on everything problem I had was “supposedly” because of my weight and my gynecologist was so rude and made me feel so scared I was 13 seeing on for the first time and let’s say she was a bitch!!! also she treated my sister with the same care not a nice women at all ! she made me feel so horrible like it was all in my head and if I wasn’t so overweight I wouldn’t be like this ? so as id always suffered from depression it went into a worse spiral from there. I Felt so low and disgusting in myself and I didn’t even know what was going on! I was left for years undiagnosed looking for ways to stop the pain, from all types of the pill to the contraceptive bar been but in my arm which all most of the time eased the bleeding somewhat but the pains always crept back in. Constantly been so all over the place trying to figure out an answer! I had missed lots of school because of my absence , my junior and leaving cert were very affected seen as I had to complete most of it at home to be even able to pass I also missed out on a lot of fun times growing up with my friends and family and also my Debs in school which every girl can’t wait for ! so as time goes on I was watching Tv one night and seen a girl speak to a doctor and she was going through the exact same as me ! I never knew anyone who I could speak to who was suffering the same! Everyone thought I was faking it when there was even a stage my pain meds wouldn’t work I felt as if I was going mad! I explained to my doc of what I had seen on tv and suggested that maybe “endometriosis” could be the problem ? and got the response of “oh i never thought of that ?” so after all the years fighting for an answer I found out what was wrong with me myself and not the doctors ? funny right? NOT! I was told if I didn’t get my weight down they wouldn’t operate on me? So that made me more upset because of the pain I was I could hardly walk up my stairs never mind hit the gym! But I slowly started walking as much as I could to lose the weight changed my whole eating plan as it wasn’t healthy at all! But I had in my mind now once I lose this weight the pain will be gone and ill be fine working extremely hard on myself to achieve my goal and I did! From weighing over 20 stones to get down to 12 stones was a huge goal for me I was so happy! Got weighed and got told well we can do your keyhole surgery now and I was both really scared but happy because I thought this is what I’ve been waiting for all years! ill be happy and healthy after it! But sadly I wasn’t, they done the surgery and found the endo on my right ovary and removed it then inserted the Mirena coil to help with my periods. It has been nearly 3 years on and I’m still in the same position that I was already in. I cant hold down a job because of my disease also my mental health has really been affected badly from all of this. It also affects every relationship I have in my life with people because I don’t know when the pain it’s going to start I have no control over it. So things haven’t had the best outcome at all, constantly in and out of hospitals with this disease and can’t find the right help. My last treatment option is for me to go on a “decapeptyl injection” which brings my body into early menopause for 3moths or longer ! and the side effects don’t look nice at all after stories I’ve read . its a road I really don’t want to have to go down but feel as if I’ve no choice anymore . I have done everything possible that the doctors have advised but I’m not going to put that injection into my body I mentally don’t think I could cope with the side effects but the hospital doesn’t seem to listen. Its my body and my choice ! Hoping things will improve soon ! only a brief description of how my life has been since this horrible disease as taking toll on me and my life
Words of Advice for Us: know your own body and how different meds/treatments make you feel. Listen to your body and your mind. Go with your gut feeling in situations its usually always right! always ask as many questions as you can about side effects or long term effects! I have wanted a child so long and their answer time at age 14/15 was to have a baby its the only cure and it’s not always true! look after yourself and be kind to yourself life is hard enough day today and with the pain on top its an even harder to cope. Keep doing and getting through every day the best you can.
The Last Word: IT’S NOT ALL IN YOUR HEAD! YOUR PAIN IS REAL! AND mental health is as important as physical!! Beware of addiction caused by strong painkillers that you could be prescribed there dangerous ! and only use them when u really need to! water bottle and heat pads are your best friend. Anybody out there with any advice I would be very grateful to hear! and if I can help anybody in any way I will try or anyone can get in contact me also. Thank you.
If you wish to contact Erika, you may email her.
I want to send a special Thank You out to Erika for being brave enough to share her personal story, struggle, and victories with us today. ❤ You are a beautiful, brave, and strong woman. Thank you!!!
And if YOU would like to share your story, please let me know. The best part about this disease is the strong network of love and support from our fellow EndoWarriors, and our friends and family, too.