A powerful story told by Katie and voicing her
anger about endometriosis – repeated surgeries, uncaring doctors and told painful
periods are normal and later found to have frozen pelvis and extensive scarring
This is Katie’s story …..
Where to begin, where to even start this. First, I would like to say I admire all you beautiful and strong women dealing with this horrid disease, and to remember that Endometriosis may take our bodies but it will not take our mind, soul or heart. My name is Katie, I'm 25 and I have Endometriosis. The struggles that come along with this weird word have been hard as you all know too well.
I started my menses when I was 11 years old and ever since then it's been nothing but a roller-coaster and sometimes a living hell. I dealt with extremely painful menses for four years till my mother finally took me to my first gynaecologist appointment when I was 15. The doctor examined me and felt something he didn't like, and set me up for an ultra-sound the next day.
Oh joy I thought, my first gynaecologist appointment and this happens, I was scared and didn't know what was going on. I had the ultra-sound and BAM I had a tumor that had crushed my left ovary and needed to be removed ASAP.
WHAT!! I couldn't believe it. I was so scared and had no idea what was going on.
My doctor told me I needed surgery asap and that he didn't know what type of tumor it was, and that my left ovary was destroyed and needed to be removed as well. So surgery came and went, and it was a Dermoid tumor and now one ovary remains. And I thought that would take care of my painful menses and so forth, boy was I wrong.
Periods became more irregular and more painful than I could ever imagine. Over the next five years I would have surgery after surgery to remove cysts on my remaining ovary, being in so much pain all the time, thinking it was in my head and beginning to think I was going mad.
When I turned 20 I decided to change doctors again because I was feeling like I wasn't being helped (this was my 4th doctor so far) And this one was worse than the rest, she was so mean and so heartless. She told me to suck it up and deal with it, that's what periods are supposed to be like.
I would tell her that I am now beginning to be in pain all the time and so bad that I would welcome death as a solution.
She looked at me as if I had just been released from the mental ward and she almost made me even doubt myself. One day the pain was so bad I had to go find someone else cause I knew something was really wrong. Went to a new gyno when I was 21 years old and he mentioned Endometriosis.
Endo-what? I had no idea what this word meant, told me he would like to do a diagnostic laparoscopy.
When I went into surgery, I didn't know what to expect when I woke up, but I didn't expect what did happen when I woke up. Apparently, it was such a mess inside that he couldn't even do anything. I had so much endometriosis, I had a "frozen pelvis", my bowels had adhesions and endometriosis on them, had an endometrioma, my only remaining fallopian tube had detached and was covered with adhesions..
I was so scared and so frustrated that all this time I had that and no one believe me, made to feel like I was some nutcase when all this time I had this getting worse inside of me. So he sent me to a specialist and they did a laparotomy. He repaired my fallopian tube, removed adhesions, endometriosis, had to have a bowel resection, and so forth.
And here I am four years and 7 surgeries later still having problems and still suffering. Was on Lupron, Danazol, Arimidex, Nuvaring, and nothing has helped.
The pain is getting so bad it's hard to even function sometimes and to even pull myself together to get out of bed in the morning. Just had surgery again August 8th, and it is September 19th and my pain is still there and never goes away.
I have seen numerous doctors, some good, some really not so good. I am at my wits end right now and don't really know what to do. I am so sick of spending my evenings curled up on the bathroom floor sweating and feeling like I am dying. I am sick of having to try these "treatments" that make you feel worse and that only cover and mask the problem and not help it.
I am sick of doctors playing God and making you feel less than human and doubting you.
I am sick of not owning my life any more, of not being in control and feel like I am just a passenger and Endometriosis is the driver. I want my life back, I want to get to a point where I can at least function on a daily basis like a human being again. I no longer want to miss out on life because of this disease. I want to be me again, I want to be Katie. I have hit the point of desperation, and now I am at anger.
I am angry that this disease is basically shunned by most the medical society, I am angry that women have to suffer with pain for years before, and if ever, being diagnosed. I am angry that young girls have to suffer with this pain because their doctors are too incompetent to even do what they are being paid to do and that's to be a doctor, to take care of their patients and to do a service to them which we, as the patients, are paying for. They are supposed to be working for us, we shouldn't be under their mercy.
I am angry that doctors get a "bonus" or some sort of income for "pimping" new medications that haven't even been approved to treat endometriosis and no efficient tests have been done, and whose side effects are beyond miserable and could cause long-term damage.
I am angry that doctors think a hysterectomy and pregnancy cures endometriosis (that one still baffles me).
But worst of all I am angry at myself for letting Endometriosis take over my life, making me think death would be better, for letting myself fall into deep sadness. I am not going to become a victim, but I am going to become a fighter and fight for the recognition of this disease in the medical profession and in society.
To all you women out there with endometriosis, you will be in my prayers and thoughts, love and hugs to you all! I also want to thank my boyfriend Matthew because without his undying love and support I don't know where I'd be. Love you all.. Katie
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