Saturday, 19 February 2011

Good news and bad

I arrived at the hospital at 7.30am on Tuesday morning.  Bright and early.  I was first on the list for the morning surgery so I changed straight into my lovely hospital gown, paper knickers and the ever sexy surgery socks.  The nurse that was assigned to me was back and forth making sure all my paperwork was done and getting my hospital bracelets printed.  I also had to have a pregnancy test, I understand why they need to do it, but there is no possible way that I was pregnant I had had my period and not had sex since.  Plus in all my almost 33 years I have never been pregnant wouldn't that be a shock if I was now!

Liz came in next, it is always nice to see a friendly familiar face.  Liz ran through everything again to make sure I was happy with what was happening and got me to sign the consent form.  I had to sign to say I agreed to blood transfusions, open surgery if any damage occurred, and lots of other things you just wouldn't think of.  Liz really did put my mind at rest as she said all of the things we talk through that could happen are highly unlikely but obviously there is a risk with any surgery so all bases have to be covered.  I had yet to meet my surgeon so I asked Liz if I would before surgery to which she said yes he should be here any minute.  It would have been strange going into surgery with someone I had never met even if I knew he had a great reputation.

My next visitor was my anaesthetist.  He was lovely, really friendly, but I have no idea what his name was.  Once again he just ran through things.  We discussed previous surgeries I have had and if I had ever had any problems with my lungs or heart after any anaesthetic I had had in the past.  He had checked my echo results and said there was no change from June 2008 which was good.

Mr G arrived within minutes, I didn't have time alone to get nervous, which was good.  Mr G was a little crazy but I instantly liked him.  I knew I was in the hands of the right person.  As the others had been so thorough Mr G didn't have a lot more to add.  He asked to see where my laparotomy scar was and was happy that it wouldn't impede his surgery.  They had been worried about the old scar all along.  They were still going to play it safe and use an alternative incision site until they knew for sure they could enter via the belly button area without causing damage.

After they had all left this was the only time I was left alone for a few minutes.  I emptied my bladder as I had been asked then sat and waited.  It was less than 5 minutes before I was collected and walked around to the anaesthetist.  I had local anaesthetic in my hand before they put the cannula in which was brilliant I hardly felt a thing that was the first time I had ever had that.  They gave me oxygen and talked me through everything they were doing.  I felt so at ease.  And I guess before I knew it I was fast asleep.

Waking up is the worst, isn't it?  I still had the tube in my throat but I was so woozy and sleepy it hardly bothered me and the nurse was quick to remove it once she saw I was coming round.  The nurse put the oxygen mask on me and just sat next to me, talking to me from time to time, checking I was okay.  I think I was just nodding.  I hate that sleepy stage, your head is awake and aware but your body won't do what you want it to.  I was in recovery about an hour before they returned me to the ward.

By now I was more awake and feeling amazingly well.  I instantly was feeling better which I never in a million years believed was possible.  I had been having horrible pain in my right shoulder for such a long time and that morning it had been particularly bad.  Now it was gone!  I wasn't in pain at this point either whatever they had given me was clearly working very well.  I was able to empty my bladder withing an hour of being back on the ward and was up and at um.  I spent the rest of the afternoon sleeping and going to the bathroom my bladder seemed to go into overdrive.

I was hoping to be allowed home that evening but I had also been prepared to spend the night.  The anaesthetist came to see me.  He was pleased to hear I was feeling and doing so well but due to the excessive surgery and the length of time it had taken he wanted me to stay in for the night.  As I had prepared myself for this I agreed straight away they know best right!  He was able to tell me that they had removed a lot of scar tissue, adhesion's and endo.  They had unstuck my bowels, left ovary and pelvic wall so that is was now all free as it should be.  They put dye through my tubes and they were clear.  The right hand side was a different story.  My whole right hand side was so densely adhered that they left it alone.  There was too big a risk of causing more damage if they tried to free it up.  They were concerned about damaging my bowel and thought the risk was just too high.  They also left a spot of endo on my bladder, I am not really sure why, I guess they were worried about damage again.

So while I had good news about my left hand side and clear tubes I also had bad news about my right hand side.  They did however confirm that there was still part of my ovary on the right hand side.  I am terrified that the pain I get during my period is still going to happen due to the damage already done that couldn't be repaired.  Although I am also hopeful that ttc may be easier now the left side has been put right.  I guess we will just have to wait and see on both counts. 

So here is to recovering and moving forward.

Hopefully pain free.

Wednesday, 16 February 2011

Home and recovering

For those of you who do read here I thought I should let you know I am home and recovering.  The operation went well and I will be back to update you in a few days time.

Monday, 14 February 2011

8 Hours to go!

In 8 hours time I will be at the hospital.  I will be having my second surgery in less than three years.  I am having laparoscopic excision surgery.  Lets hope that this surgery brings relief.

So I am off to bed to try and to at least get some sleep.

I will be home Wednesday at the latest provided all goes to plan.  I am hoping they will discharge me Tuesday evening I guess we will have to wait and see.

Sunday, 13 February 2011

January 2010 until now.......

On the 20th January of 2010 I had an appt. with Liz who was a specialist endometriosis and pelvic pain nurse.  I had found the details for the self referral to Liz from my Endo UK support group.  It was an evening appt. at a hospital I hadn't been to before which is just a 20 minute drive away.  The hospital is enormous (compared to what I am used to).  It was easy to park and they have a reception area so I could get directions.  After walking for what seemed miles around lonely quiet corridors I found where I was supposed to be.

Liz was really friendly and put me at ease straight away.  She asked me to start at the beginning and tell her everything I thought was necessary for her to know.  As I was going through things she would ask me questions and take notes.  Once that part was done she gave a a questionnaire to fill in.  It was a pain scale from day 1 of my cycle to day 28.  She wanted to know when my pain was worse plus there was a picture of a woman and I had to colour in the areas that I suffer with pain.  I don't remember what else was on there I will try and get another copy and see if I can post it here.

After the questionnaire was done Liz asked me what was being done for my endo at this moment in time to which I replied nothing just painkillers when I need them.  Liz made a note of the meds I was currently taking.  Finally once she was happy she had all the information she needed she gave me her opinion.  The first thing she told me was that she thought I needed surgery.  My painkillers needed changing and she wanted to get me transferred to the endo surgeons at UHW.  For the first time I actually felt like someone was listening to me, truly listening.

The next steps were going to be Liz contacting my GP's to get me on painkillers that would help with the pain much better than those I was currently taking.  She would also write to my specialist and ask for me to be transferred to UHW for excision surgery.  Liz was sure my specialist would agree as he was just a general gynae and basically as an awkward patient for Mr E he would be better off not having to deal with me.  Liz assured me that of all the specialists she had written to she had not had one refuse.  At the end of the hour appt. I was so relieved I fought to hold back my tears.

Once again it was back to waiting.  Liz promised the letters would be done and posted by the weekend.  I gave it 2 weeks and made an appt. with my GP's to get rx for my new meds.  The best thing I now had on rx was lidocaine pain patches.  I could use up to 3 for 12 hours but then had to leave them off for 12 hours.  They were great as I could put them right on the area causing me pain.  Mostly I have used them for my lower back pain.  This is the pain that makes it difficult to walk, I end up leaning forward and having to sit down as soon as possible.  I also had three different lots of tablets for different levels of pain.  I was also to start taking the pain meds two days before I knew the pain would start to try and stop the higher levels of pain happening.

Mr E wouldn't refer me to UHW without seeing me first and talking through the difference in the surgeries.  He would have done laser removal although during my many appt.'s with him further surgery was never mentioned.  I saw him in the April he basically wanted me to know that excision was much more invasive and there were many more complications that could arise.  I already knew this as I had done a lot of research myself.  Once he was happy I knew what I was transferring to have done he agreed.  Now I had to wait for him to write back to UHW.  The letter was sent on April 27th.

Waiting, waiting, waiting isn't that all we seem to do with doctors appt.'s!  Finally I got an appt. with Mr P at UHW in October.  J (my husband) came with me.  Mr P was lovely really down to earth not like many other doctors you meet he was a real people person.  He asked me lots of questions, questions that no one else had ever asked me before. Questions that were actually relevant.  He examined me which as any woman will attest to is really uncomfortable and embarrassing.  It doesn't matter they are gynaecologists and have seen it all before!  He agreed that we should go ahead and do excision surgery so he filled out all the paperwork to get me on the list.  Here in the UK you are supposed to have treatment started by 26 weeks from referral.  November 26th was my 26 weeks date.  Mr P told me that they were running 2 months behind so we were likely looking at the end of January 2011.  He did make a note on my file that I was happy to have surgery Christmas week which would have been the 21st or 22nd.  Apparently most people don't want surgery right before Christmas I didn't care I just wanted it over and done with.

At least now I had an idea of when the surgery would happen.  That it really was going to happen!

We also spoke about fertility.  Mr P set up SA for J.  You would have thought such an easy test would have been done two years before.  So things really seemed to be moving in the right direction at last.  He gave us everything we needed and I just had to phone and make an appt. for a time that suited us.  The earliest available appt. that fitted in with work was late November so we had five weeks to wait.

So back to waiting.  I had a pre op appt. pretty quickly so I did hope that the surgery may just get squeezed in before Christmas but that was not to be.  I have a heart murmur so I had to get that checked before they would approve me for surgery.  Nothing is ever easy is it?   Luckily the echo was done within two weeks which is extremely quick now I just had to hope all would be okay for the surgery to actually happen.  I don't know what I would do if they said they couldn't go ahead.

J had his SA appt. late November.  We saw Pete he asked us some questions, how long we had been trying, if I had ever been pregnant, that type of thing.  Then he asked if we were on the IVF waiting list, when we said no, he asked why not.  So I explained that I had been unable to get anyone to refer me.  He said that my GP could do it.  I told him that my GP's had told us that they couldn't to which his reply was "rubbish!".  The SA results would go back to Mr P and he would write to us with the results.  The letter came through, but instead of results, the letter stated the test needed to be repeated.  I booked another appt for Jan 13th.

I heard nothing from the hospital for my surgery before Christmas.  On my return to work after the Christmas holidays my boss asked if I had a date yet.  I telephoned Mr P's secretary to find out so I could let my boss know.  She confirmed I had been booked in for Feb 15th.  I was surprised as I had expected to just be told not yet and have to keep waiting.  I finally had a date.

J had his second SA done and the results came back as sub optimal and that Mr P would discuss it with us at my post op appt. Now it was just 4 weeks until surgery.  I just let everything be for 4 weeks I needed to relax and not worry about SA results.  I concentrated on work and getting things done before Feb 15th.

It is now 8pm on Feb 13th.  I am nervous, anxious even but also hopeful.  I hope that this is the surgery to decrease if not rid me of pain.  I hope this is the surgery that makes our family a possibility.

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).

Monday, 7 February 2011

My First Blog Award

I started this blog as a way of getting things out.  I am one of those people who hold everything in.   I am a very private person and find it difficult to talk about my thoughts and feelings.  After finding a blog from facebook and following that for a while I soon learned of many other blogs that I wanted to follow.  Blogs that make me feel normal.  I am not the only one in this world suffering and in pain.  I never believed anyone would read my words and here I am with my first blogger award.

So here goes  
The Rules:
1.) Thank and Link back to the blog that gave you your award
2.) Share seven things about yourself.
3.)  Award 15 recently discovered great bloggers.
4.) Contact the bloggers to let them know you've given them an award.
I have no clue what I am doing so hopefully these links work.
Thank you to Lenzey over at Life, Love and Living In It for this award!

Ok here goes seven is such a small number but now I feel under pressure.

1. I am the middle child of three girls
2. I have been married for eleven years this year
3. I will be having surgery next week for my endometriosis and while excited I am also terrified
4. I am an aunt to three nieces and three nephews aged from 21 down to 4.
5. I am a qualified trampolining coach, which I should really take back up, I spent so many of my teen years on a trampoline.
6. I love to go to concerts and I have The Script, Kylie, Elton John and Take That all lined up for this year already (and that is just up until June).
7. I am from Wales and proud to be Welsh.

I promise to think of better things if I am every lucky enough to get another award!

Apart from number 1 these are in no particular order.

1.  Single Infertile Female: Now What?  For introducing me to blogging and sharing your story.
2. Life with Chronic pain
3. See Mel Run 
4. One Egg Please
5. My Journey with Endometriosis
6. My Journey to Fertility
7. My Autoimmune Life
8. Life With Elle
9. Infertile Myrtle
10. Endo Confessions
11. The Mud and the Lotus
12. Stare if you must ......
13. That Girl with Endo
14. Two's company, Three's a Family
15. The Miss Ruby
16. The Princess and the Peestick

Oops that is one too many but I couldn't leave one person out!

Saturday, 5 February 2011

Life on Lupron

There are many women out there who simply refuse to go on this medication.  I really didn't know much about it when my doctor suggested it as the treatment option I needed.  I knew it brought on menopausal symptoms which is what I told Mr E and he gave me a prescription there and then for HRT (or add back as some of you call it) to help alleviate those symptoms.  I trusted him as a doctor that he knew what he was talking about.

I had my first injection on October 13th 2008 and one have one every four weeks.  After reading on the endo groups I am a part of on facebook I was glad I was having them every four weeks and not the longer lasting 3 monthly injection.  I am not good with needles and when I saw how much liquid was being injected in to me I was not impressed.  It really wasn't that much but like I said I don't like needles can you imagine what I would have thought if there was three times as much in there!  My husband was with me and always the one to keep me calm made a big joke which made me laugh.  Some people would probably kill him when he does things like this but for me it was just what I needed.

I had the injection in my left arm and it left my whole arm sore and achy.  I hadn't returned to work yet since the surgery so I was able to go home and relax. Once home I did just that then started to get bored.  I had towels that needed folding and putting away.  So I went and folded them into a nice tidy pile picked up them all up and swiftly dropped them all.  It was one of those laugh or cry moments and I had to laugh I was so tired of crying.  The ache in my arm was like a had a dead arm and it just couldn't take the weight.  I piled them back up and left them for my husband to carry upstairs to be put away.

Apart from the aching arm the first week was a breeze.  Everything was normal nothing changed.  Then after that the hot flashes and insomnia started.  Wow the heat was amazing and one of my friends had bought me one of those hand held fans oh how I was thankful for that.  I had started the HRT the same day I had the first injection and I like to think that it really did help with all the symptoms.  I had hundreds of hot flashes it was winter and being wrapped up from the cold weather really wasn't needed I had my own internal (though broken) thermostat.  We had been invited to a friends 50th birthday party and it was packed and the heat was too much to bear so I went and sat downstairs where it was quiet and cool.  I am lucky to have good friends and husband and someone was sat downstairs with me the whole time.  Sometimes they to were hot and needed to cool down but they stayed that bit longer to keep me company.  I remember someone saying that they were having hot flushes due to the change and I said "yeah me too" to be told not to be so stupid I was way too young.  That made me angry why would I say it if it wasn't true okay it wasn't real menopause but medically induced all the same in my book. 

The insomnia was strange for me I had never had a problem sleeping before.  Seriously I can sleep for 10 hours every night.  I have always been like that, always needed a lot of sleep but never felt like I was actually getting enough.  I had been to my doctor about it many a time.

Apart from the hot flashes the worst symptom for me was the emotions.  One minute I would be fine then crying uncontrollably and then rage.  When I say rage I mean rage!  It was like I could have quite easily have killed someone or had a good go trying.  That is so not my personality I would not harm anyone.  Those emotions though they overwhelmed me and I had to fight hard to have at least some control.  I had bought a pair of sketchers and was returning them as they didn't fit.  The lady on the counter said they couldn't take them back as they had been worn.  Those emotions were triggered and I had to fight to keep my hands by my side as I explained that that was what they were like when they were delivered and if you looked at the sticky labels that were still fully intact you could see that they hadn't been worn.  It was a battle to remain normal but I managed it and I got my refund.   The fresh air when I got outside the shop was just what I needed.  I had many walks during this time the fresh air would help clear my head it just made me feel better.

My husband learned to stop asking if I was okay when I was crying he now knew it was just the side effects and that asking me how I was just made me angry.  To be fair he was a saint during this time.  He often went out and just left me be.  That gave him a break as well as me.  It was as hard for him as it was for me there was nothing he could do except for be there when I did need that cwtch (that's a hug by the way).  I also learned that if he could put up with me like this at my worst he could put up with anything. 

Lupron also caused joint and muscle aches and pains but I didn't really notice these so much.  Probably because the pain I had been in before surgery had been so much worse.  I compare all pain back to that now nothing touches it anymore.  I sometimes get pain that is bad but rather than being a 10 it is more a 6 maybe a 7.  I feel lucky in that way some women suffer that level of pain daily and worse.  I almost forgot the night sweats waking up soaking in your own sweat there is nothing like it.

March 2nd 2009 I had the sixth and final injection it was a relief to know that they were all done.  Now to just get through the next four weeks.  Then to see how long the side effects would last and when my period would return.  All the side effects gradually eased off the hot flashes were the ones that hung around the longest.  My period returned in June and was "normal" I was crampy but it felt like that was how it was supposed to be.  The Lupron had stopped my period I had just had one light one in early November that had only lasted four days.

Since the Lupron I have had no other treatment for endo.  I have painkillers for when I need them and that is all.  I also have, still, never been pregnant.  The surgery and Lupron have not helped in that respect and this is what I have spent the last two years fighting for.  To get someone to listen and hear me and help me become a mother.  For my husband to be a father.  And for the three of us to become a family.  Maybe one day that dream may still come true I hold on to Hope.