Eartha’s Endometriosis Story

March 26, 2019 0 Comments

Eartha’s Endometriosis Story

We need to talk about endometriosis. It's as common as diabetes and asthma, yet remains an enigma and receives zero funding. Endo affects 1 in 10 ovary bearers and, much like the menstrual taboo, is an issue that flows under the radar, hushing all concerned. Not any more. Here is Eartha's story:

I have no idea where to start, I have never been good with my own words. I can think them but getting them onto this document is so much harder especially when I am trying to keep the amount to a minimum.

I always remember people being so nasty at school, or me being mean to someone else, no matter how small or how large this may have been, if I have learnt anything from the past 6 months, it is to be kind, no matter what. Be kind to anyone that comes into your life as you have no idea what is happening behind their door, you have no idea what is under their skin. You can only know what you see, and this can never be judged on. Never.

March is endometriosis (Endo- metri- o – sis) awareness month. What is this? A nuclear war in a uterus, an incurable disease causing scarring and infertility. Basically the skin/lining of the uterus grows outside of the uterus where it shouldn’t and causes body organ’s to connect to one another with scarring, leaving adhesions and incredible pain in women of all ages. There is no cure for this. You can have the scarring removed but it is likely to come back, the pain relief doesn’t work. This is not comparable to the usual period cramps. This pain is unbearable, this pain makes you drop to the floor at a moment’s notice. Your period will be like living in hell. Your day to day life will be disrupted with anti-focused brain and fatigue, your usual tasks will become mammoth efforts. And this is how you will live from now on. Now that you have endometriosis. 1 in 10 menstruators have this horrific condition, I am 1 in 10, and this is my story from my side. This is what happened.

Like most women, I will always remember the first day that I got my very first period. Like, what on earth is this sore tummy about and the oh hey sister, there we go, school bathroom and tears because who knows what to do on that first time, gross, you will need to use those dreaded sanitary products that they show you in the last year of primary school. I was 13. This is when my journey started. Every month from here on out I will be imprisoned by my uterus, bedridden and in so much pain. Irregular bleeding all over the show, not knowing what to do with my own body. I started with doctor visits when I was probable 14-15 years of age to discuss what could be done about my pain and of course, the first trial was to be put onto a contraceptive pill to see if that will regulate me. It didn’t. The pain and the bleeding only became worse. So I started the depo Provera injection = Bravo, no periods = no pain. Brilliant it was a win win situation. I was sorted, the doctor was happy and we carried on. Until I started to get a funny tummy all the time. I first approached a medical professional about this as well as migraines and nausea when I was around 17 years old, so still quite young. I was medicated for the headaches and as for the tummy, its Irritable Bowel syndrome and I was sent off to a dietician to get popped on a special diet to help with food reactions. I tried this for such a long time and nothing was working so I just accepted the fact that I was going to be in pain and have to watch what I eat from here on out. This was the biggest mis-diagnosis that I had.  Fast forward to 22 years old. I am still in the same boat, but it is time for me to come off my contraception to see how my body is, after all, it has been a while since I last had a period, maybe they are okay now. I was more than wrong with that statement. They are back like satan, I have never had pain like this. WOW. I couldn’t move, didn’t want to eat. Nothing was okay. I was bleeding more days than not, tampons feel like the devil and as for pads in the middle of summer… need I say more. I looked for so many solutions to help me, and then I found my menstrual cup. This was great, easy to use and I actually found this pain free with a heavy flow. I didn’t need to change this up every hour, it basically just worked like magic and moved with my body. Even better, I am no longer contributing to the waste that is produced from feminine products every year, I don’t know the stats on this, but I know that it is a lot and every little bit helps. Although my menstrual cup helps, why am I still in so much pain? After so many years and different opinions from different doctors, I have given up on seeking more help from them to only be given more pain killers that didn’t work and dead ends. But not a single one looked into endometriosis, not a single mention of this. Not once. This took my own research to see what this was after looking at all my symptoms online to always be brought back to the same topic. Endometriosis.

I am 22 now and this is when I was officially diagnosed with endometriosis during surgery on the 12th September 2018 at Southern Cross Hospital, Christchurch. Around 9 years after first seeing a medical professional about my issues. It was an early Surgery, a beautiful day and of course I was nervous, I was about to find out if I have this disease or not. You can only get officially diagnosed by having a keyhole laparoscopic surgery, when the surgeon makes a few small incisions in your lower abdomen and goes in with a camera to see if you have it or not. Obviously I did, so the surgery to remove the scarring and adhesions from my ovaries and my bowel was performed and I was back on the ward for recovery. It is not the outcome that I wanted, but at least this gave me the answer to the past few years and the pain that I have been in. I finally knew that it wasn’t just me and that I had joined the 1 in 10 menstruators that live with this around the world. But this wasn’t the end. This was the day that my life changed forever.

13-9-18. I went home today after a day in hospital. Minimal pain and I am okay, tender of course as I have just had surgery but I can still do little things like dishes and hanging the washing on the clothes horse. This lasted until the 15-9-18. I remember waking up this day (Saturday) as I was in pain, so topped up on the post op pain meds and had breakfast, Eggs on toast and a hot chocolate. I remember all these silly little things so vividly. But the pain didn’t go away it just got worse and worse it was like being stabbed with a knife in my stomach multiple times. I didn’t call an ambulance. I am volunteer on the local ambulance and there was no way that I wanted to call if I was just being a wimp with post-op pain, after all, the surgeon had told me to expect a lot of pain and every symptom that I was getting was from the post-op pain list, but they were also warning signs that there was something that was terribly wrong. But I still didn’t call. My then BF was at home with me and at 7.20pm, we called 111 after I collapsed in the hallway. This was the last time that I would walk freely for at least 9 days. I was taken straight up to Ashburton Hospital by my colleagues who were amazing as with anyone that is working in this profession. I was immediately started on antibiotics as it was evident that I had a major infection going on. I also got a CT scan done and that was when I was told that I was going to be going straight to Christchurch via ambulance in the middle of the night. My bowel had been perforated during my surgery a couple of days beforehand and I was now going into septic shock. My life was on the line. The next few hours were a blur, everything is happening so quickly and I am by myself as none of my family came with me. I just remember being pumped with drugs and getting checked on every 5 mins. Then the surgeon came. I will always remember his words to me “if I don’t take you to theatre now, you will die”, “if you called the ambulance an hour later than you did then the chance that you would have passed away is very high” so I cheated death by a second that day. If I was home alone, I would not be here to tell and share my story with you all.

I remember waking up from the emergency surgery, in utter shock and disbelief at the fact the surgeon had to perform a medical procedure that he said was possible that he would try to avoid. He had to perform a full colostomy and I now have a stoma (colostomy bag) on my tummy. This is what I needed to let me live. I didn’t want this but I had no choice. I had 4 IV lines in my arms, 3 catheters in my tummy, a drain from my pelvis, a colostomy bag and o2 all hanging off me, my legs had pumps on them to stop me from clotting and I was lying dead flat. I couldn’t move, I would be stuck here in this position for the next 2.5 days. I was being pumped with drugs that turned me into a zombie. This changed me forever, there was no going back to how I was before the 12-9-19. I felt like I would never walk again, I couldn’t eat as I wasn’t allowed to have normal food at this stage. I could not do a single thing on my own. I was completely bedridden, injured. I now have a massive slice up my stomach that I was never prepared for, all I prepared for were three small incisions. Not this. I didn’t plan and I did not prepare for any of this to happen. I was in the hospital for 8 nights in total, I was too scared to leave. I still needed to learn how to use my new feature, how would my then bf react, how would all my friends react. How would I live with this? The first time that I went for a proper walk was when I got home that Sunday, 8 days after and I walked maybe 5 meters then I urgently needed to sit down. I was so weak. Not just my body, but my mind to. How can all of this be happening to me? How can I be just diagnosed with endometriosis and then have this happen? How is it even possible to be injured during surgery, this just doesn’t happen. Well it does. It will be 2 months before I go back to work, 6 weeks before I can drive. I am stuck at home on the couch with nothing but Netflix to get me through and a strong mind to keep me focused on my recovery.

Eartha post surgery

Eartha post-surgery 

I try to inspire all people to always embrace every second that you have, never get annoyed over silly things that don’t need to take up space in your head, after all, none of us know how long we will have left on this earth. Always be kind as you never know when the person that you are speaking to will be gone. We don’t know these things and we cannot plan for them either. Although all of the above may seem shocking, how can this girl be given all of that, but that’s not the end of my story.

On the 21/10/18 my then bf of 4.5 years left me. A mere month after I was fighting for my life. Although I am not sharing much of a story on this part, I was released from a one-sided, abusive relationship full of cheating and lies, which clouded all the good times that we ever had.

After this I hit rock bottom. I was wishing that I never called the ambulance that day because why would I want to be alive to be going through all the crap that I was being given. At this point I just wanted to give up, I no longer wanted to be around and trust me, 7 months later, and I still have these days. I was falling into what I described as a black hole, where I could see every part of my life getting thrown into and disappearing. I felt like I would never be back and the future seemed dim, I couldn’t even go there. This is when mental health became a huge part of who I was. Post-Traumatic Stress Disorder. I am very open with how I am, because if I share how I am, maybe this will encourage you to come and share how you are and share your story. Some people think that I am just being dramatic. I am not, I am just being honest, and something that these days doesn’t seem to be a part of people’s lives, which is sad. It became obvious out of the people around me, who was there through thick and thin and who wasn’t there at all. Who I can trust and who I cannot trust.

Now that it has been 7 months since my surgery, I am able to do normal things again but I am still in so much pain. I am waiting on my next surgery to reverse the stoma so that my tummy and bowel are back to normal which may be months away and this is taking longer than it should.

Eartha with her stoma

Eartha and her stoma

I haven’t let any of the above define me, I have let it show who I am and how strong I am. All of this has made me grow as a person and I only want to inspire other people that are going through similar things. No matter how dark your life may be in any given moment, there will always be a day when things will seem better. There will always be help for you no matter how low you become, but don’t be afraid to ask. I did and I seeked help from a mental health specialist and I am not weak for this. I am strong as I admitted that I was no longer coping on my own, I needed someone to help and get me through. And you can do this too.

If I have learnt anything, it is if you have a choice to be anything in life, choose to be kind always. Choose to be happy and brush off the smaller things that do not make you happy. Be selfish and don’t be afraid to put you first, you will learn who is there to support you and who isn’t and you will have to make some hard decisions, but you will be happy again just like me.

Below are some frequently asked questions by people around me with answers, thank you for being a part of my story and thank you for being you.

Are you going to sue your surgeon?
No. I have never felt anger towards my surgeon for what happened. I understand fully that he is a human just like me and he also makes mistakes just like me and sometimes these things happen to us. We cannot change what has happened as what is done is done, and there is no room in my life for anger and hatred towards an event or person. This is far too time-consuming.
    What is it like to live with endometriosis?
    Horrible and I would not wish it on anyone even though it is super common. It stops me from doing certain things. I am in pain 24/7 and nothing can help me with that. It will just need to become a part of my life now, this is the new me, even if I don’t enjoy every little part of the package, I will still love myself for who I am.
      What is a stoma and what is it like?
      A stoma is when part of the bowel is brought out through your tummy and stitched there and a bag sticks over top. This is where all your waste goes to rather than out your rear end. Pretty cool stuff that they can do to keep you alive, and along with endometriosis, this is super common and there are thousands of other people out there living with the same thing as you every day.
        How have you managed to cope with all of this, “I couldn’t”?
        yes you can, when you are not given a choice and coping is the only option that you have, you will learn to soldier through till you reach the other end. You will survive.

          I have coped by being so completely open with my story, by having an extremely strong support network around me and by learning to have self-love. I have never loved myself more than I do now.  I am so happy with who I am now, I wouldn’t change anything because if I didn’t go through all of this I wouldn’t have the chance to meet some of the people that I have, to share and inspire with many people.

          Learn to love yourself. You won’t look back.

           

          For more information about endometriosis, treatment and how you can help others who are living with endometriosis visit: https://nzendo.org.nz/ 





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