Thursday, 10 February 2011

So much happened!

There was so much that happened and it seems like a lifetime ago now that after reading back through my posts there are gaps in my "story".  I don't know how I forgot about some of these things.  I guess it is back to the fact I am not that good at writing.

Back to surgery in July of 2008.  On the day I was discharged from hospital the specialists personal nurse came and sat with each of us that had had surgery to run through our notes and finalise paperwork.  For anyone who has had surgery when doctors come and talk to you that same day you are so drousy that you do not take in everything they say.  The bits I remember was doesn't look like cancer but he was positive it was endometriosis.  I remember asking if he had done a hysterectomy to which he had said no.  I think once I had that information I just went back off to sleep.  Now while the nurse was doing my paperwork I asked again what had been removed and she showed me on my notes that it said cystectomy so that means just the cyst was removed everything else was left in place.  For me that was a big relief.  I was able to go home to recover and just wait for those biopsy results that took so long.

Now the next hurdle happened while on was on Lupron.  Mr E was leaving the hospital but he was staying within our health board which meant I could get transferred there and stay with the same doctor rather than switching again.  It was a battle to find the right people to get the transfer done but I finally managed it.  During my initial appt. with Mr E we hadn't discussed what was removed during surgery.  My first appt. with him at the new hospital in February 2009 he mentioned the fact that my ovary had been removed.  I was sideswiped with that comment. I told him that I had been told they had just done a cystectomy and that everything else was left.  As it was a different hospital he didn't have my notes so said he was sure the ovary had been removed but he would request my notes to confirm it.

As we drove home I cried.  This time it was true emotions (okay the Lupron probably made it worse).  All this time I had thought everything had been left and was okay.  I now had no idea what this meant for TTC.  I felt like everytime things seemed to be going well something else would jump up and kick me back down. 

Deep down I had always know we would have problems ttc.  You see, I stopped taking the pill in 2003.  I had been on it for 8 years and there was a lot in the news about DVT with long flights and how the pill could make it more likely for a dvt to happen.  We had a holiday booked to go to Australia so I stopped taking the pill 3 months before we were due to leave.  Since 2003 we have used no contraceptives what so ever.  I had mentioned this to different doctors over the years and was told to keep trying, not to worry, many couples take a few years to fall pregnant.

Through the following appt.'s so little was done. At one appt. where Mr E now had my notes he seemed unsure if my ovary had been removed and looking at the notes it seemed that it had been just a cycstectomy.  So now I once again had two ovaries.  Or did I?  Now I was confused and didn't know what to believe.  Mr E decided as I was still having pain that I should get an u/s done.  The u/s showed I now had a fibroid and that my right ovary had in fact been removed (at least I knew for sure now).

I asked about fertility treatments at all my appt.'s now but all I got was that we would do some blood tests.  I had day 3 and day 21 tests done.  The results came back saying that I was not ovulating so I had to have the tests repeated.  It still showed I was not ovulating.  I now know that day 21 is too early for me I do not ovulate until day20 so the test should have been done on day 27 to get a true reading.  Apart from these two blood tests nothing else was offered to us for fertility.  I was starting to feel like no one was ever going to help us.

I am fortunate that Endometriosis UK run support groups.  My nearest group is just fifteen minutes away and they meet every other month.  I started attending the meetings and found out about a nurse specialist who I could self refer and get an appt..  I made an appt. for January 2010 and this is when I was finally listened to and things started to change and move forward.  Still at a snails pace but finally things seemed to be falling in to place once again.

I feel like I am now rambling so I will leave what happened next for my next post.  It is late and I need to sleep.  At least tomorrow is Friday :o).

1 comment:

  1. I feel your pain. I woke up from a surgery to remove endometriosis and found out that I had lost a tube and ovary. It was devestating! Even though you know it is a possibility, it is still such a shock when it happens. I was told it wouldn't interfere with my ability to get pregnant (this was before I started trying), but the surgeon didn't realize that I was going to face diminished ovarian reserve and premature ovarian failure, in addition to endometriosis. I'm sorry you had to deal with losing an ovary and with all of the pther painful things you've been through. Can't wait for the next post.