Can someone just sling a spanner in the works? Please?!
Below I have drawn a pretty (or not!) picture of what having endometriosis entails and how each things affects the next. It literally effects every aspect of my life. As you can see, it’s a viscious cycle.
I’m unsure what can trigger the pain as I can have it through the night, when I open my eyes in the morning, at work, after the gym, anytime. I have read up online and through reference books, I have spoken to hundreds of women in online forums and support groups and don’t seem to be any wiser on how I can help myself!
Before all my symptoms became too much to bear, I had a positive outlook on my life, positive opinions of the healthcare systems and believed I was in good health.
How naive was I? For the past 15 months I have been greeted by blank faces, questioning looks, even expressions of doubt, when seeking help from the healthcare service. I am very much treated on a ‘try this’ trial and error basis, I seem to come out of the Dr’s room feeling more confused than when I went in and have yet another prescription in my hand. I have seen on the news that Doctors are sometimes over-prescribing and overdiagnosing their patients, which is bad. But I must be on the other end of the scale as I have been underdiagnosed. I have recently had a hospital admission where the on-call gynae actually looked surprised at seeing my surgical scars even after I had told her my sad tale. As if I’d lied about it?!
I have reached an all time low in my life and have been crying in Dr’s rooms for months asking for help. I have expressed my desire to have an hysterectomy at 24. I just want it to go away at this point. I have told them I find no joy in my life anymore. Their response? Anti-depressants. More meds.
I don’t like using pain killers so how am I supposed to react to this? It scares me. I am constantly being reminded that ‘these drugs are addictive’ and ‘be careful how many you take’ and so I try to avoid taking them if I can. I can’t always manage it. If I don’t take the pain medication when I need it, I’m literally in the foetal position for hours. I am now at the point post-diagnosis where I have accepted that this is how I am, which is depressing in itself much less without the pain.
Anti-depressants were the last straw. I cannot start that medication. I have decided to try and take control of my life. Hoping to.
I have been to the gym this morning, taking it slowly, I have gotten home and my stomach has inflated to the size of a beach ball, my back hurts, my pelvis feels too wide for my body and I am so tired. All of the time. Tired of my body fighting itself. Pretending to be ok, everyday, is exhausting. I just want to be as normal as I can.
I’m just about done with this shit.
Don’t give up! I am in the same position as you and at the start was just as confused. Unfortunately even the best of specialists have to operate on a trail and error basis which is frustrating, slow moving and of course painful in every sense of the word. Like you I have plenty of uncollected prescriptions, the latest for Amytriptoline, not a hope in hell I am touching them, I am depressed because I am in pain which is perfectly rational and I don’t need to be medicated I need to be supported!! I know it hurts to exercise but keep persevering, after a little while it will start to help, I exercise like a mad woman because it really is the only thing that keeps me sane! It improves my mood and allows me to be strong enough to cope with the pain and healing after surgery. It may be worth looking up the low FODMAP diet, although it is mainly for IBS I have started implementing some changes and it is making me feel immediately better. Most importantly keep reaching out to others, you are not alone and us endo sisters need to stick together. Keep your chin up and show just how strong us endo girls are xx