Thursday, 27 January 2011

Follow up appt.

I finally got a follow up appoitment with the new gynaecologist in the September.  So it was about 2 months after surgery.  After waiting what seemed like a lifetime in the waiting room, where everyone else seems to see a doctor and leave, while I am still waiting I was finally called in. 

The young girl who was obviously younger than I am, not that that is a problem, didn't seem to care.  She quickly looked at my file and saw I had surgery asked how the scar was healing and said "okay then we will see you again in six month".  I just sat there and stared at her.  My husband spoke first I think I was in shock that someone could treat a person so badly.  I hadn't even been in the room five minutes at this point.  We explained a little and insisted on seeing the gynae that I was supposed to be seeing as we had been told I would be having more treatment.

About ten minutes later the correct person came to see me.  He told me that he and Mr H had had many conversation about me during their weekly meetings.  Through our conversation we assertained that my endo was stage iv and extensive.  My abdomen had been full of old blood and they had had to wash my insides out.  They had removed as much as they could during the surgery but as there was so much a lot had also been left.

We had talked about the fact that we had wanted to start a family and Mr E gave me the option of going away and trying to become pregnant or we could go ahead with treatment to try and reduce the endo that had been left.  He recommended we do the treatment first and that is what we decided to do.  He explained that he would do me a prescription for Prostap (Lupron) and it would be on my file ready for when I could start it.  The first treatment was to be started three or four days into my period.  I left with the telephone number to phone when my period started so that they could expect me for the injection.

October 13th 2008 I arrived back at the hospital for the 1st of six, four weekly injections.  I wish I had known more about what I was letting myself in for.  The next six months were not fun but they deserve their very own post.

Friday, 21 January 2011

6 Weeks of Waiting

It was 6 weeks before I got my biopsy results.

6 weeks of torture! 6 weeks of crying and feeling sorry for myself.  6 weeks of planning my funeral.

After my surgery I had spent the time mostly sleeping.  It was surprising how little I could do.  Yes, I was in pain, but everything was so awkward even going to the toilet was causing me problems.  If only they had cut the other way, along my bikini line, it would have made things a little easier.

My mother in law had broken her pelvis a few years before and had one of those pressure cushions.  Wow did that come in handy a few weeks of mostly sitting can cause your rear end some discomfort issues.  Especially when you have to sleep, sat upright, on a recliner sofa.  It was impossible to lie down for the first two weeks and most certainly impossible to get up from lieing down position.  I seriously do not know what I would have done if it hadn't been for my husband.

I remember being on the sofa as comfortable as you can be after such a massive surgery and needing the toilet.  The problem was how do you get up?  How on earth do you use your legs, which by the way were perfectly fine, to push the recliner back down.  It is unbelievable how much we use our stomach muscle to do.  My stomach muscles were sliced through and only beginning to heal.  I felt so useless having to call my husband from the kitchen where he was getting food for us to just push down the recliner so I could spend the next 10 minutes getting up the stairs to the toilet.  How I wished we had a downstairs toilet.

I had the local nurses come to my house every other day to check on me and make sure my scar was healing properly.  After ten days I had to have my staples removed.  I was not looking forward to it not one little bit.  But it had to be done and I just had to suck it up and let the nurse get on with it.  To be honest it actually wasn't that bad yes it was a little painful but I had endured much worse pain.  It was a good job really as I had 56 staples in total.  I wonder now why I never took any photos of those staples while holding my stomach together and also after they were out.  There were just so many of them.  I remember being amazed at how much skin had actually been pulled in tight and the 1cm staple was now 3 cm of skin.  No wonder those things were pulling and making the skin red and sore.

After two weeks I was able to move a little easier I even went to bed at night although I was still almost upright propped up on lots of pillows.  I couldn't leave the house and as it was summer I was at least able to sit out in the garden and get some sun on my face.  I did try to got out once or twice but after just 30 minutes out I would be wiped out for the rest of the day.  I hated the exhaustion that came with the recovery.  No one told me it would be that bad.

4 weeks after the surgery I started to get upset, annoyed, angry, frustrated and every other emotion you can think of.  Why hadn't anyone contacted me.  I wanted to know what the results from the biopsies were.  No, I needed to know what they were. As did my husband.

I actually hadn't heard anything from the hospital at all.  I could not bear to wait any longer so I telephoned my consultants nurse to ask if my results were back.  She asked me to leave it with her and she would come back to me later in the day. 

Just before 4pm I got the call.  I was terrified to hear what she had to say.  When Lyn told me that it was good news all the results came back negative for cancer relief washed over me and I started to cry.  Then she told me that the endometriosis had also be confirmed from the biopsies.  As I didn't have cancer I had now been transferred to a new gynae rather than the oncologist that had done my surgery.  I thanked her for phoning me back with the results and hung up the phone.

My husband had been vacuuming upstairs when the phone had rung and hadn't heard any of what had just happened.  I slowly made my way up the stairs with tears streaming down my face and grabbed a hold of him.  It is funny how I remember these strange details.  He had no idea what was wrong with me and I had to try and explain that there was nothing wrong and I had just spoken with the nurse and I didn't have cancer.  I could see the worry lift from his face.

Now we just had to wait for a follow up with the new consultant to find out what would happen next.  So we did just that.  We waited.  And while we waited I googled and searched for information on endometriosis.  I found support groups on facebook where I found a lot of information and it was somewhere I could ask questions and other women who actually had this disease were able to answer me.  From experience's they had had themselves.

After feeling alone for so long I was beginning to realise that were thousands of other women out there who were suffering in pain and silence just the way I had been.  I was gaining a whole new group of friends.  Friends who I have never met and likely never will.  Still friends that will be there for me when I need them.  Just as I will be here for them.  My endo sisters.  I love my unbiological sisters.

Saturday, 8 January 2011

July 2008

As I said last night here is what I wrote less than three weeks after my surgery probably while on strong painkillers.  I posted this on an endometriosis webpage and it felt better just getting it out at the time.  After this post I will start to update on what has happened in the two and half years since I wrote this.
This is a great website and it is really good to know I am not alone. I have read a few of your stories and some of them sound just the same as what I have been through. I have been suffering for the past 5 years if not longer and now it is finally a relief to know what is wrong with me after being made to feel like a fake for years by GP’s and specialists.
My first symptoms where diarrhoea and constant stomach upset I was referred to a gastroenterologist and was told I was suffering with IBS at the time I felt totally fobbed off and that the specialist had not listened to what I was saying.
I was suffering with stomach pain every 3 to 4 months initially that would be so bad I could do nothing I would have to sit completely still and the only time I moved was to go to the toilet. Then the past 12 months went drastically downhill the pain was more frequent and much more intense to the point where I was holding my breath as it hurt to breathe and then gasping air in quickly before holding my breathe again. Over the years I went back and for the doctors surgery every time I was in pain until it got to the point where I felt they just didn’t care until this year where I just couldn’t handle the pain anymore it was that bad.
In March I went back to my GP suffering another severe bout of pain and asked to see a specialist again and so I was referred back for a gastro appointment. Later that same day my sister mentioned endometriosis to me so I googled it online to find out what it was. I had heard the word before and knew it was something us lucky females could get but that was it. After reading all the symptoms and information I started to cry it was all I was going through written in black in white and I could not understand why any of the GP’s had not even thought of it. I made another appointment with my GP and this time I told her about endometriosis and she agreed to send me to see a gynaecologist and for an ultrasound scan. At this time I also had blood tests done to see if there was anything else going on crohns colitis celiac etc but everything came back clear. The only thing picked up on the tests was inflammation markers where sky high normal readings would be between 0-10 my two readings were 68.4 and 100.8!!!
It was recommended I pay privately to see the gastro specialist which I decided to do as the my GP had said it would be best. I got an appointment for two weeks later and I was lucky that my Gynae appointment came through without paying for two weeks after the gastro appointment. The gastro specialist said that I may have slight IBS but he recommended that I see a Gynaecologist as the amount of pain I was describing had to be more than IBS.
Two weeks later I went to my gynae appointment and was told my womb felt enlarged but unfortunately I had not yet had my ultrasound so I then had to wait to have an ultrasound and go back to the gynae. I had my ultrasound and rebooked an appointment with the gynae but before I could get to that appointment I had another bout of pain which was smack bang in between my periods so I thought that was that diagnosis out the window. I had made a deal with my husband that any more pain and he could take me straight to A&E.
In A&E they tried to tell me my pain was muscular at which point my husband went mad and told them to check my record as I was waiting to see gynae and had had an ultrasound done. I was left in a side room for about 30 minutes when the doctor came in to see me and told me I had a large cyst on my ovary and that he was admitting me. I burst into tears out of relief of finally knowing there was something wrong with me and I hadn’t been imagining it all this time.
I was in hospital on strong painkillers for my pain from the Monday to the Friday. I didn’t see a doctor after the Monday until the morning of the Thursday 19th June at 8am. The nurse stayed with me while the doctor spoke to me at which point he explained that my cyst was extremely large and would have to be removed via surgery and I would need to be opened from my belly button right down and hopefully they wouldn’t need to go any higher that that but it was a possibility. As my cyst was so large it was possible that it may have damaged all of my womb and ovaries and that I may need a full hysterectomy. I was devastated as I am 30 yrs old with no children and me and my husband had decided that the time was now right to start our family and that may now be taken away from me. But there was even more bad news part of the cyst was solid and it was possible that it could be ovarian cancer as you can imagine my whole world fell apart at that point.
I had my laparotomy on July 7th and I was so lucky that after all I was told may happen during the surgery most didn’t. They managed to just remove the cyst and leave all my womb and ovaries in tact and my surgeon/oncologist said that he couldn’t see anything that was obviously cancerous but we still had to wait for the test results which would take 2-3 weeks. But he did tell me that I had endometriosis and had removed other smaller chocolate cysts during the operation.
It will be 3 weeks since the operation on Monday 28th just 3 days away and I am yet to hear anything which is really playing on my mind and I wish they would just hurry up and put me out of my misery one way or the other so I can get on with whatever needs to be done next. I am taking each day one by one to recover from the operation which has left me totally exhausted although the pain has eased off quite a lot now except for at night which doesn’t help with the tiredness when your awake half the night.
When I get my results I will update you all with what they decide to do with me next hopefully cancer won’t be an issue and I will just have the endometriosis treatment to deal with. Sorry this is so long but it has really helped getting it all out and written down.

Friday, 7 January 2011

1st Post

After following other people's blog's I have decided to start my own.

This is an outlet just for me.  If anyone finds this and decides to read it then great.

I am not a writer and I was never any good at English in school Maths was my thing.  I am great with numbers but words are another thing but I am going to try.  Try to get my thoughts out so they are not stuck in my head annoying me and making me stressed.

I wrote "my story" for an endo website and plan on digging that out to put here tomorrow.  I know it needs updating as it is only about my surgery and what happened at that time so much and yet so little has happened since.

I guess the fact I have managed to even set this up is a good thing I am not that great at this type of thing but will always give things a go.  So I will be back tomorrow with my story and in the days/weeks to follow will update from there.