Endometriosis; The Rarer Side
Why is this even happening, how is it possible to be just left here in so much pain. That 30mg of Targin twice a day, 8 Endone tablets & Panadol don’t even help the pain.
On the 29th of September my stage four Endometriosis hit a whole new level for me. I’m pretty good with pain, I suppose you just tolerate it and learn to live with it after a while. I pushed out two babies pain free. But don’t get me wrong, some days my endo pain is so bad that bed, hot packs and pain killers is a must.
For a few weeks before that crappy day of the 29th I was a bit off. I had been on depo shots for a while to try to suppress my endo. But all I did was bleed for 10 weeks straight and when my body started to show signs of not coping we stopped them and I took Ponstan and Trans acid. It worked a few days later and the bleeding stopped. I was over the freaking moon. I get periods regularly every 3 to 4 weeks, bleeding a 10 day average and a shit load of blood. But this had been the next level up. So when it stopped I was grateful. But a few days later I felt a bit off, just so tired and not myself. So I put it down to all the bleeding and needing some rest.
Weeks went on, I was still needing sleep, and just felt pain randomly in my chest area and upper abdomen. On the 29th of September I had this heart burn like pain, radiating into my shoulders. I went to see my Mum she had stuff for heart burn and I used that to see if it helped. That afternoon, I vomited. I vomited blood. I rang my mum in shock thinking what is this?! By 5:30pm I had been sick 3 more times bright red blood. We presented at our GP and they sent us to Emergency. I had stopped vomiting by the time I saw a doctor and was sent home on a waitlist for an endoscopy.
That Saturday morning I woke up feeling good and took girls to mums for a swim and lunch, I got to her house and threw my things at her as I had a mouthful of a metallic taste liquid fill my mouth. Yep
more blood. And it continued. I started having very bad upper abdomen pains, more to the left side and so tender to touch. By Monday, we decided to go back to emergency and try get some help. By this time I was in serious pain in my upper abdomen and bloating/swelling was happening on and off. For me this was not normal, this was scary!
I was admitted and watched, I was vomiting blood, but I also couldn’t keep food down. The pain medication was not working either. I was put in a clear liquid diet and fasted for an endoscopy. Yay, let’s get this shit sorted.
I woke up to - it’s all normal, nothing abnormal, all looks good !!! What? Then what’s wrong? I was sent home a day later and told to see my gynaecologist as they started to suspect it could be Endometriosis related. I was ok to do that. I was sent home on Endone and Targin 10mg. Also some Ondansetron to help nausea and vomiting.
The pain was unbearable, it would start in the left side of my upper abdominal area. Radiate into my chest centre and then into my shoulder and top of my arm. It was an agonising throb, but then I would have this random stitch type spasm that would last a few minutes. Then it came to eating, every time I ate within 15min after, my body would react to digesting the food. It would become irritated and bloat and swell. It would become so hard that the pressure on my chest and trying to breathe was so hard! I couldn’t take breathes in as it hurt! I can’t lay down flat as it puts pressure and feels like I can’t breathe! It was just getting scary.
By this time, driving was no option, I could stand for no more than a few minutes. Cooking dinner didn’t happen. And most importantly being a Mum, well I just couldn’t be. My Mum took on my daughters, as much as it breaks me. What was I meant to do? Try to get better and give up my Everythings for a few days or let them live this horror with me? I am actually really blessed to have an amazing mother who is my super hero and loves and cherishes my children like they are her own. So there is comfort knowing I can rest and they are ok!
Over a week later, the pain had worsen and the vomiting blood continued. I saw the gynaecologist on the Friday. He was absolutely certain, the pain I’m having, all the symptoms I presented with is Endometriosis of the lungs/diaphragm. He would need to refer me to a laparoscopic specialist that can perform these types of surgeries. I trusted him, I had been seeing him for a while and I grew fond of his knowledge. It was a sense of feeling ok as he knew what I was going through. But when he said I can’t help you anymore this is not my area, I felt a lump form in my throat like I was just dumped.
And right there in his office, nowhere to run and so lucky I carry those very awful spew bags, I ripped it right out and gave him a show. Blood, blood and more blood. He looked and me and said “Jessica you need to go back to Emergency now”. And so I did. Hoping for help, answers and maybe some relief.
By day two, sitting in hospital, still vomiting blood. Still in extreme pain, even with shots of morphine, tears started to roll down my face. I was sick, I was tired, I was confused. My mum came in to see me and that’s when I broke down. So did she. What are these doctors doing? Why is nothing being done!! Scans were done and they were clear. It didn’t make sense. The nurse I had day in day out was amazing. She pulled my Mum aside and said to her, have you heard of Ryan’s rule? I don’t believe your daughter is getting the care she needs and it’s time to do something about it. That beautiful nurse had wiped my face when I was vomiting blood, helped clean up my hair falling out on the floor when I tried to brush it. It was time to do something. My mum had Ryan’s rule enforced. That afternoon, gynaecologist from the hospital were involved and they too believed without a doubt, this is Endometriosis at its worse. It’s in other areas that are rare - diaphragm and possibly lungs. They were so sure that they sent a referral to the laparoscopic specialist also.
I was discharged with 20mg of Targin and more Endone and to see my doctor every 3 days and on a nebuliser at home with saline to help breathing. I was ok with this, thinking surely they won’t leave me too long.
Wednesday came and that phone call came from the specialist office saying we have an appointment for you in the 31st. I was excited and had two weeks to get through until this date. Ok we got this. I saw the doctor every three days and we ended up increasing my Targin to 30mg, restocked medication each visit and copped with vomiting blood, hair falling out... now we have bald spots. And this never ending pain that keeps me awake at night, which debilitates my daily routine and pretty much has taken my life.
Some days were harder than others, I have started to have problems going to wee. It takes a good 20 minutes to wee. I sat there on the toilet the other night waiting, waiting, please hurry up. I can feel
it. BANG, I woke up to hitting my head in the glass shower screen in front of me as I had fallen forward. Still no wee, but a massive bruise to show for it! Surely this is just a joke now!
The 31st came, today is the day. I got up washed my hair, and watched it fall out by the hand full but confident I’m going to get help. I was so excited with the hope of help!
The doctor called us in. This isn’t the doctor I’m meant to see? I went over my story again still hoping for help. Ok, she said. I can offer you physio through the hospital. I can give you the doctor’s card you need to see to make an appointment. Shall I organise some counselling?
I cried, I cried so hard that I had a head ache. I hadn’t taken all my medication, because I didn’t want to be sleepy when meeting with this “so called” specialist today, so that I was able to comprehend the plan. The pain was kicking in, and the tears were rolling. Kind of hoping I would vomit blood on her floor right now. I wanted to walk out, why am I here? Why I am here if you’re telling me I need to see another specialist? When we were here to see him today?! How can you be ok, leaving someone this unwell?
Nothing more to say, my mum and I walked out. She stopped us and called the number on the card begging for an appointment for the next day. She got one for the following day at 4pm. I still couldn’t comprehend what had just happened.
I cried the whole way home wondering why is this happening?
I tried to eat as by this time I was tired, in pain and had a head ache, you know the ones you get from crying? Those ones.
Well, I haven’t been eating and this is exactly why, 15 minutes after eating my upper abdomen started to expand. It got tighter and tighter. I can’t breathe. Puke, puke, puke ..... even harder. Like my body was trying to get rid of anything inside of me... but it wasn’t food? It was BLOOD. More and more blood. Harder and harder. It hurt so bad I cried and cried. How else do I deal with this anymore?
How can I still be vomiting blood, four weeks on and no one is doing anything.
That for four weeks, I’ve been in hospital twice, seen numerous doctors and not one has helped me.
I’m losing my hair in clumps and now have patching. I vomit blood, minimum 3 times a day. And my two children at least are in view once each day. Even though I try hide it, being so sick and sore with absolutely no energy I don’t always make the run to the toilet.
My body is starting to feel the effects of what’s going on. My skin is bruising. I don’t look like me anymore. And until I see the light at the end of the tunnel, I have to just hold on to some hope. That someone will help me soon, that it will get better and not worse.
I now plan to help raise awareness of the rarer side of Endometriosis.
The materials available on or through the websiteqendo.org.au [‘QENDO’] are an information source only. Information provided by QENDO does not constitute medical advice and should not be relied upon to diagnose or treat any medical condition.To the maximum extent permitted by law, all contributors of QENDO make no statement, representation, or warranty about the quality, accuracy, context, completeness, availability or suitability for any purpose of, and you should not rely on, any materials available on or through the website qendo.org.au. QENDO disclaims, to the maximum extent permitted by law, all responsibility and all liability (including without limitation, liability in negligence) for all expenses, losses, damages and costs you or any other person might incur for any reason including as a result of the materials available on or through this website being in any way inaccurate, out of context, incomplete, unavailable, not up to date or unsuitable for any purpose.