OK so you've gone to your G.P and swish your diagnosed. Right? Not necessarily.
For me, it took years to actually get my G.P to listen. He kept saying that just because my Mother had Endo didn't mean I would have it and blamed my symptoms on "just a heavy period". He then suggested an OCP (Oral Contraceptive Pill) to reduce the bleeding amount and also time. In other words he was hoping it would regulate and lighten my period. However, the first one had no effect and within a month he had increased the dose and changed the brand. Again, gave this new pill time but with no effect and the same thing happened. Dose got upped and brand was changed. All in all, I tried four types. None worked for me to ease my pain or bleeding. They didn't even lighten my period in the slightest. We even tried running the pill (not taking a break) but I still had heavy bleeding.
{Now, I have inherited high BP (Blood Pressure) from my Fraternal Grandmother and from a very young age (around seven or eight) I was brought to the children's hospital for a week for tests on my kidney's to see if the BP was affecting those organs. I was closely monitored and allowed home without medication.}
However, one of the side effects of the OCP's for me was that my BP would sky rocket, my legs would cramp so badly I had to have them elevated almost constantly and my migraines which I suffered as a child came back at full strength. So back to the G.P with me. He then took me off the OCP saying that it obviously wasn't agreeing with me.
That was fine, the B.P came down but I was still stuck looking for answers to this condition. I literally badgered him for months, over a period of almost 18 months asking could he run some tests on me that I knew this wasn't right. The way I was feeling, the pain, bleeding e.t.c. You guys all know what I'm talking about here. Having to constantly cancel my friends because I couldn't move with the pain I was in. Not knowing what was wrong with me, even thinking "Is there something wrong with me?"
I honestly began to wonder if this was just something I had to live with for the rest of my life. My break came when, once again I was up visiting my G.P but today was different, my regular G.P was out sick and there was a lovely gentleman standing in for him for the week. I went about explaining how I was suffering, the med's I'd been put on, the level of painkillers I was on and so on. I had been keeping a diary for over two years of my cycles so I had all this to show the interim G.P. He decided that this had been going on long enough, that I had a very strong family history of Endo and that in his opinion I should be referred to an OBGYN to assess whether or not I had Endometriosis once and for all.
Finally I thought! Something is going to be done about this. Even if I don't have Endo, there is something not quite right going on in my body.
So, I get a letter from the top consultant in Ireland. I am now under his team and they are going to investigate into my symptoms. I had my first appointment with them, went through my diary, symptoms and history and was sent for an Ulstrasound which revealed an Ovarian Cyst that measured 2.8 cm x 3.5 cm.
My pain med's were increased, the OCP was discussed again and I explained I had tried that route so they said they would do a repeat scan in three months. I went away not having any real answers but wondering how they were going about treating this cyst now and if that could be causing all of my pain.
Three months later I arrive for my scan. The cyst is now 6cm x 6.9cm. It has pretty much doubled in size so I was sent straight down to speak to my consultant. He whipped the surgical appointment book out and booked me in for a Laparoscopy to remove the cyst and investigate. He also said there was a possibility they would have to make a large incision to remove the cyst so I should prepare myself.
I've now gone from thinking that I might need medication to treat the cyst to a key hole surgery. I was scared, no doubt but I wanted that cyst out of my body.
Around six weeks later, I arrived in the hospital. It was 7:30 a.m. and my nerves were gone. I had never had a surgery before, I was 18 and scared.
So I went through the pre op routine, blood tests, urine sample, B.P check e.t.c
Into the OR and out! I wake up in unbelievable pain and immediately vomit. I was kept in recovery for over two hours before being brought back to the ward. I had not reacted well to the anaesthetic and was quite sick with it. I felt like they had cut me wide open. I had asked a nurse in the recovery ward if they had gotten the cyst out. She told me my Doctor would explain everything to me.
I remember my consultant coming into me with his second in command and explaining that the surgery had gone well but they needed to talk to me the following day when I was more recovered. I was still very groggy and zoned out. What I didn't know at the time was that he was explaining to my Mum that they had put the scopes in and "looked around" but what they had seen inside me was not what they were prepared for. Yes the cyst was there, but it was Endometrial tissue. My womb was completely covered with Endo. It had stuck to my ovaries meaning that they couldn't move at all.
They had to removed the adhesions and "rotate" the ovaries. The Doctor's tried laser surgery (laparotomy) on the Endo but discovered it was too extensive to burn through so they had closed me up. My Mum was even shown the Polaroid pictures they had taken during surgery and she was in shock. As she said she was "shown her Daughter's insides".
I had a pretty bad night that night being very ill and in shock from the surgery but little did I know the above was about to be told to me the following morning. I remember feeling numb, I was listening to the Doctor but I couldn't make it fit. I wanted to know how a cyst had turned out to be full blown Endo stage IV to be exact. (The above picture shows Stage I,II, III and IV in order) I couldn't comprehend how nothing had shown up on the scan's I'd had. Later I was told that Endometrial tissue cannot always be seen by an Ultrasound.
It was this day that I was told the amount of damage to my womb meant the possibilty of me being able to conceive let alone carry a baby to full term would be slim to none. I was told at eighteen that more than likely 95% in fact that I should rule out having children.
This was a lot for me to take in. I had gone in the previous morning to have a cyst removed and now I'm being told I won't have children. What? How did this happen?
I was overloaded by this information and it wasn't until months later I realised that I had been diagnosed with my fear, what my Mum had been so convinced I was suffering from, what my G.P had refused to send me for a test for, what even the scan's hadn't shown.
That day I had been diagnosed but I had been suffering from Endo all these years and not known.
I found it so hard to comprehend. But now had to focus on my treatment options. The fight was about to begin.
