Tuesday, February 26, 2013

Operation Update

I had my operation almost 2 weeks ago and the outcome was completely different to what we expected.

We got to the hospital early on the morning of the operation, a beautiful hospital, no waiting around to check in, no delays in going to the room, no delays even  in going to theatre. The only delay actually was waiting outside the theatre and going through all the checklists.

I'd been to see Gordon the day before. It was one of those 'I really dont know what to say to you' appointments. I was really struggling with the thought of having to have yet another operation, kept thinking about how much I was dreading that feeling, right before I go under anaesthetic.... that feeling of losing control, of losing consciousness.
Mostly, Gordon worked on helping me relax a bit..... I really was in a bit of a state about having to go through this again.

As soon as I was gowned up and they said I was next in line to go to theatre..... I began to panic, I began to cry, I really did not want to be there. Ok... I know nobody wants to be in that situation, but I felt helpless, I felt like I have been through this so many times before...the preparation... the surgery... the outcome... the recovery... the hope..... the devestating blow. I really just wanted to go home.

I'm sure I probably told the nurses and Dr.s that too... that I really just wanted to go home. I was in such a state while waiting outside the theatre. The Surgeon came out to meet me, went through the checklist with me and then made some comment about him feeling it would be best to leave me alone. The anaesethist then came to see me and he actually helped to relax me a bit, he had a great sense of humour.

Then it was time to go into the theatre and as soon as I went through the doors and inhaled my first breath of 'theatre-smell' I broke down again, that smell holds so many bad memories for me... of all the times I've been pregnant going into the theatre, knowing I wouldnt be pregnant when I came out of there. The operating table... the lights..... everything about that room made it the only place in the world that I didnt want to be right then.  The anaesethist put a needle in my hand and fed through some kind of relaxant first which did help me a bit, made me feel like I was floating. He then produced the syringe of white liquid and I started to feel panicky again. I made eye contact with the anaesethist  and locked my stare, as he pushed that liquid into my hand. I was going to fight that anaesthetic to the very last. I felt both sides of my face starting to burn and still I kept fighting to hold my stare with the anaesethist..... and well.... the next thing I knew.... I could hear somebody calling my name and I could feel the tube being removed from my throat.

The next thing I felt was a sharp pain in the left side of my lower abdomen and they gave me some morphine to help with that.

As expected, I had trouble breathing after the anaesthetic... that happens to me every time, so I had an oxygen tube fitted for 24 hours.

I was then brought back to a lovely private room where I was able to rest for a few hours, before the Surgeon came to see me... and to my surprise... he brought pictures. Before and After pictures of what he had done inside of me. I found it fascinating every part of my insides was a different colour.... my womb is a purpley colour and my tube is a red/light purple colour and my ovaries are snow white in colour..... I guess I just thought everything was red.

So... the outcome then...................

First of all..... the emndometriosis was not something we needed to be too concerned about.

Instead he found the real cause of the horrific pain I had been experiencing...... a very badly infected fallopian tube... the left one. The tube was blocked which is what they call a Hydrosalpinx, but not only that... it was blocked with an infected growth, a Pyosalpinx. If you can imagine for a second.... a Bic biro and imagine the width of the plastic tubing of that biro... that fairly accurately repesents the width of a normal fallopian tube....... now imagine the plastic tubing of a Bic biro with a golf ball inside of it and you will have a fairly good idea as to why I was in so much pain.
The infection had been there for so long, it had formed a growth that was about the size of a golf ball. The Surgeon had to open the tube and remove the growth and then close the tube again.

The infection in my tube had been leaking into my womb, making my womb a completely inhospitable environment for an embryo to grow.... hence why I had miscarried so many times. I was put on high dose antibiotics to kill any lingering infection in my tube or abdomen.

He also found another cystic growth in my abdomen which he cut away and removed, along with several adhesions from previous surgeries.

He also found that both of my ovaries were, once again, covered in hundreds of tiny little cysts so (like last year) the entire surface of both ovaries had to be drilled, blasted and burned to remove these cysts.

There were quite a few complications afterwards with breathing issues and that kind of thing, but I am home and recovering.

The Surgeon said that I will be sore for quite a while simply because of the amount of work that he had to do inside of me. I remember how long it took me to recover last March when I just had the ovarian drilling, blasting and burning done, so we are expecting this recovery to take a bit longer.

The good news I suppose is that we now know for definite why I have been miscarrying, although I find it very hard to take in that every time I have been opened up in the past 3 years... it has been noted that my left tube was swollen.... but yet, nobody thought to investigate why.
The Surgeon feels optimistic about our chances of conceiving through ICSI now as my womb wont be trying to kill anything that enters it.
The not-so-good news is that the Hydrosalpinx will come back, it is just a matter of when, but until then there is a chance that I will be able to carry a pregnancy to full term.

For now though, I am taking it very easy. The pain I am in is more than I had imagined it would be, a lot worse than after last year's surgery. I am finding myself being very up and down emotionally but that is normal for me after surgery and is mostly brought on by the memories that hit me from the operating theatre. I am not sleeping much at all, but again... that is normal after an anaesthetic and will come right eventually.

I will most likely be laid up for another while, but once I am fully better... we will look at our options regarding treatment and see where we go from here.


So... all in all.... a worthwhile operation, I must say that I was very impressed with the service at Aut Even Hospital in Kilkenny, and I offer my most sincere gratitude to Mr Trevor Hayes, the Surgeon who put all of this right for me, and to The Kilkenny Clinic for the original referral.

So for now..... recovery.... and then... maybe... just maybe........

Wednesday, February 6, 2013

Update

I am feeling extremely physically, emotionally and mentally drained from the events of the past few days... so I wont go into too much detail right now.

They are going to operate next Tuesday. Basically... the only way to solve the problem is a full hysterectomy, but this surgery... if it all goes well.... will buy us some time... somewhere between one and three years.

They have also said that in order to try and support a pregnancy after the surgery, I would have to go on long term, high dose steroids.......... not very happy at that prospect, but I guess the main thing now is to get this operation over with and allow myself (once again) some time to recover before making a decision on where to go from here.

That's all the news for now really, I suppose I will spend the next few days (and probably the rest of my life) trying to figure out how we have arrived at this point................

Monday, February 4, 2013

One Step Forward...... Fifteen Steps Back.......

We went to The Kilkenny Clinic today and even though we went with the intention, or at least the hope of starting treatment on my next cycle.... which should have filled both of us with hope..... neither of us could sleep last night. I lay awake all night sweating with anxiety...... Patrick tossed and turned all night and kept waking up. I guess on some level we knew it wasnt going to be what we wanted.


And... of course... our subconscious thoughts were right. Apart from some minor setbacks like Folate and Vitamin D levels being low,we were doing ok.... 2 cycles of supplements and a few more blood tests will sort those out.

Nah, of course that couldnt be the extent of what was wrong.

The Dr. we met today was extremely concerned that my recurrant pregnancy loss was never really fully investigated, things like my immune levels and clotting ability were never tested, and they needed to be done before we could start any treatment.

Another few tests... nothing to worry about... until we got to talking about the excrutiating pain that I still experience for a week during every cycle, and for 2 weeks on the cycles that I ovulate on my left side........

Can you say Endometriosis...???????

Yep.... that lovely disorder where the womb lining grows and develops outside the womb.... causing excrutiating pain, miscarriages and is the leading cause of hysterectomy in young women.... Yep.... something else to worry about...!!!

I am having tests tomorrow, meeting with the surgeon in Kilkenny on Wednesday and they want to operate ASAP. They won't really know how bad it is until they open me up.
Best Case Scenario..... they can burn away the lining outside the womb giving us a window of between 6 and 12 months to get pregnant, before it returns.
Worst Case Scenario...... I wake up from theatre minus a reproductive system.

The Dr today said it will be a very high risk operation anyway due to the sheer number of surgeries I have had in the past 3 years, but unfortunately surgery is the only option.

A very very hard pill to swallow........