It's happening!!

Good things really do come to those who wait! After nearly 24 months of waiting very patiently for public funding we made the top of the waiting list for IVF! Looks like 2015 will be our year. Surgery, recovery, everything couldn't have been timed better. Finally a win! 

Letter received 31 Oct advising we had reached the top of the list. Conveniently my cycle was only due this week so had a week or two to chill and wait. Cycle started 4 days early so caught me by surprise, must have been the long cycle last month, Clomiphene really screws with things.

So called clinic yesterday (CD2) and booked in for my Pre-IVF ovary scan and BMI weigh in. They booked me in for Friday but I advised the new patient Coordinator that I also need a trial Egg retrieval as RE keen to confirm that entry into my Uterus through my slightly left deviated cervix wouldnt comprimise the delicate procedure. My new nurse called me back and asked if I could shift appt to tomorrow as my RE wanted to do both. So this morning after DH and I went for our PreIVF bloods I went next door (they have blood lab next to my Fertility Clinic), they took me early which was great as i had prepared a very full bladder (maybe oversculled slightly in waiting room) i was ready! Thats for sure.

Nurse took me through to the procedure room and I got all gowned up. Small room! Esp with 3 of us in there. Had a quick chat about my previous scans and straight into it. Its pretty much like having a smear done, they use the long contraption to simulate harvesting my eggs while using a doppler to check where it entered my Uterus. no problems there she said and we all took a sigh of relief. Got dressed and headed to her office/medical room in the clinic part of the building (interesting setup!) for my internal ovary scan. That all went smoothly, we could see at least 15+ small follicles doing their thing so she is confident we should have enough on the left ovary. The right? Well we are leaving that one till stimulation to decide what we are doing there. Only option would be laprascopic retrieval and lord knows I dont have that kinda money. Its a wait and see. After that all that was left to do is call to book consent meeting to 'lock it all in' as DHs sample would be with the clinic Friday.

Confirmed.. Consent appt next Tuesday 25.11. We will be sitting down to go through the whole IVF cycle timeline with the RE. Looks like egg retrieval will be February 2015 due to avail appts. arghhhhh! Its really happening!

Called the hospital to let them know we wont be booking on for our 6th Clomiphene cycle, my nurse as Womens Hospital was super excited for us!!! Aww bless xx I said id keep her posted and no doubt if we are successful, she will see me pass through Fetal Medicine anyhoo, they cant get rid of me just yet.

So there you have it. Things moving quickly. Will certainly update again when we know more next week.

TTC - Clomiphene Cycle #5 - Oct 14

Tuesday 21.10 - Finally AF arrived, CD34 which means the Clomiphene is definitely causing me a few issues as almost always on time. I had my new 50mg prescription from the hospital all ready to go, so much easier not having to get my tablets cut in half. CD3 arrived and started taking meds, decided to try 7.30pm this time just incase of side effects with the increased dose, we'd soon know by the morning.  Weekend was super busy but was great, didnt seem to be having any issues apart from being thirsty. Was a long weekend and meds finished up on the Monday night. I had a thai curry for tea which I ate in a hurry and took my meds straight after. Lets just say not the greatest idea as was up all night with extreme nausea and vomiting, spent Tuesday working from my couch with a bucket. Im slowly starting to come right by CD12. 

Day 10 bloods showed my Estradoil levels were in the 1900s! Wow thats my highest yet, last month only in 300s and highest ive been is 700s so dosage increase definitely working. I'll post results when I get them from GP. Waited to get the call to come for scan.

Scan was 1pm Friday 31.10, Halloween. I had a new lady today, she had studied up on my notes which is great, however didnt realise id had surgery and my diagnoses was back to UU. I quickly filled her in on Streak Ovary and we started with a Doppler Scan to have a look at that one first as told her I had been getting pain in that location. She couldnt find a good shot of it so we moved onto internal scan for Endometrium and Lefty.  My lining was really thick this month, even I could see the difference so be interesting to see what it is incomparison to my normal 7mm. Cervix looked good, she had a quick hunt for the second cervix and tube they thought that had found last time. No sign. Left ovary had ALOT of follicles but we couldnt see and dominant ones. GREAT! At that stge I knew it was Streaky so we went back over and this time started scaning bit lower. Boom! There it was, so its right on my waist stretching from my right hip bone 4-6 cms across. It looked huge, so we came at it from all angles until we came across two sizeable follicles that stuck right out. Great stuff she said, I said not really as the are not going to be scooped up, ie no Right Fallopian tube. Oh well, thems the breaks, i had known it was that side as I could feel it, just was secretly hoping it wasn't. So we decided to wrap up the scan so I could get back to work. 

One of my Nurses from the hospital rang my cell at 5.30 to give me the good news re my follicles and I also had to explain to her that it was now a dud cycle and said id talk to her in another 20 days when we start Cycle 6 hoping Lefty will cooperate this time. That will be last cycle before Xmas, not sure if we can do one around Xmas, id rather keep going while we wait for New Year IVF news.

In the meantime I think ill pay visit to my GP and try and figure out why Im feeling tired, itchy and nauseous. 

Update when I know more.

TTC - Clomiphene Cycle #4 - Sep 14

First cycle back after a couple of months off and it was terrible! My cycle arrived right on top of a nasty virus, I had just started to feel better by the Saturday (CD3) and meds began. Still on 25 mg, not long till the mood swings, temp spikes and the nausea kicked in. I had mostlyrecovered by the time i went for my CD10 bloods which i did on CD9 as hospital had to check them being a Friday. I went before work and phoned hospital when i hadnt heard by 3pm. It turns out my Estradiol was only in the 400s. It should be in the 600s for them to book a scan. So we decided i should go for a retest on Saturday which I did. Hospital phoned Monday and my levels had dropped to the 300s so cycle therefore cycle void. Strange! Was it the op? Was it the virus? Was it the 2 month break? None of us really know. All I know is that I havent felt well for the rest of the month so hoping that improves before next cycle.

OB/GYN has decided to bump up my meds to 50 mg for next cycle (October) so watch this space!

Post-op appt and Fertility Clinic

Monday 8.09.14 - we had both the post-op appointment with the OB/GYN that performed my surgery and our first specialist appt with the Fertility Clinic. They ended up being on the same day due to my surgeon being very ill the week before and pushed all his appts. Both went really well.

At the surgery follow-up we discussed the fact my Bicornuate Bicollis Uterus is now back to a Unicornuate Uterus with no rudimentary horn or fallopian tube, not even a second cervix! No other pelvic mass (pelvic kidney). interesting! We talked my Endometriosis and how long it would take to grow back, we would be looking at 6 months or so, advised to get a move on fertility wise. Likely cause of Endo is my periods travelling backwards up fallopian tube. Common apparently. He checked my incosions, all healing very well, couldnt believe how small they were! Will post a before and after at some point, i thanked him for not turning my cute button into an outie, looks like ill be able to wear my piercing again, DH is going to love that! Last but not least we talked about that ovary. "Ill have that" he said, when im finished with it of course. Not sure if he wants to actually keep it?? Or just wants it out, its a functioning streak ovary, thats not meant to happen, so think he was calling dibbs as he might want to research. Really not looking forward to that surgery as apparently it can cause  hormonal inbalances which can shorten my life span, if it stays put I risk cancer, so decisions mine really. He is also very confident we could harvest eggs from it laprascopically, cost to do that privately tho... Eeek.

We went for lunch to ponder on that conversation before we headed off to our next appt.

We arrived at the fertility clinic early (as we do for all our appts). We read girly mags and endometriosis pamphlets while we waited, which seemed to be some time, busy place! Finally my registrar from public hospital called us round. So glad it was someone I know and someone that knows our situation.    She also knows the surgeon that did my surgery so a win/win. She and I talked about the paperwork re waiting lists and confirmed dates etc a she went to check on waiting list times, turns out the public funding has already run out for the year so we will be waiting till next calendar year. She advised she had been talking to senior fertility specialist at the clinic about me, and the dicky ovary, and they were discussing the need for a laparoscopy, as specialist at public was 'waiting to see' if i needed one. She was shocked and surprised when told her I was nearly 3weeks post op with Stage 2 Endo and Adhesions removed and showed her pictures of my functioning streak ovary. She took the pics through to the other specialist as it shows its quite roomy up there by the liver, however her response was what I expected, they wouldnt harvest eggs from that ovary as they only harvest through the vagina and it definitely would not be covered by public funding. Great! IVF just became very tricky.

Right, so plan is we will do 4 more Clomiphene cycles starting September taking us into the new year in the hopes that left ovary keeps firing instead of the right and with the Endo removed it might actually work this time! We are not bothering with IUIs at this stage in the piece but still possible we can do 1st round IUIs x4 then a cycle of IVF but we would be stupid to not go for IVF x2 with my increased chances of late miscarriage and preterm labour.

I hope to have an update for you once I talk to hospital at end of this week.

Finally on the waiting list!

We got finally got mail from Fertility Associates. The letter was sent the same day as my surgery, how weird is that. 

CPAC score done, its above the threshold, we are on the waiting list!! Woooo! Finally after a year since our specialist 'forgot' to send the letter. Date entered 1/07/13, the base call up wait is 10 months from waiting list entry date, so it might happen pretty soon!

Also enclosed was a letter for our first publically funded First Specialist Assessment. Monday 8/09/14. With my Registrar from Christchurch Womens, handy she works at Fertility Centre too. That will be the week following my check up with my OB/GYN at Forte on Tuesday 2.09.14 to go over results of the surgery. Couldn't be more perfect timing really, we can share the results with them and have pics of my anatomy and that dicky right ovary behind my liver, thats whats going to cause us all the grief, esp with IVF. This will be also before next cycle of Clomiphene with A.C.C starts too so can make some decisions about that too.

Next update will be a biggy!

Recovery... and finally some answers!

Its done! Surgery was Monday 18.08. Inbetween rushing everything through my health insurance providers and sorting out leave for work I popped over to Forte Health last Wednesday and booked myself in. DH took me shopping that weekend for comfy clothes and supplies as i was spending a night in hospital.

Arrival time was 3.30pm. My last meal was 7am that morning and last drink of water 12noon. We were early, as always, and didnt look terribly busy. Turns out we were still in waiting room an hour later with the persons there before us slowly but eventually getting called in. DH looked more nervous than I, we reassured each other. Finally i was called through to Theatre consulting room 1. This is where I met nurse Jenny, the lovely and attentive nurse that would make the next hour bearable. She did my post op paperwork with me, measured me for my compression tights, and explained there was someone still in theatre, then an hour long surgery ahead of me, so we would just be chilling here till they were ready for me, lucky we had the ipad, mobile, books and mags. I had a wee spike in temp so they chucked me in my gown early to see if id cool off a bit, id had a cough earlier so they took my ventolin inhaler to give me later.

That next hour went really quick, the Anaesthetist came and greeted me the same time as my surgeon. It was 6.30pm by this point so they were keen to get moving, as was I. I signed on the dotted line and they shot through to Theatre leaving me with their assistant who took me via the loo, I was getting a catheter put in anyway but wanted to make sure i was empty first.

Very nice operating theatre, had a cool organic looking mural up one of the walls, nice relaxing environment. I jumped up on the table and they strapped my pulse reader, ecg pads for my heart, blood pressure sleeve, cannualla in and then within few minutes felt them pump me full of anaesthesia, breathing mask on and off I went. At some stage after that they would have catheterised and intubated me, glad i was well asleep for that. 

It was just under 2 hours when I opened my eyes for the first time in recovery. Very groggy, couldnt move my head much, but not vomiting or struggling to breathe so that was great. DH was called through to come sit with me, this was about 8.30ish so i was the last one in recovery suite, had the place to myself which was good as it had been full an hour earlier. Pain scale was only 4-5 at that stage due to anaesthesia still wearing off but gave me some tramadol to see me through.  As i had woken up really well, drank some water and was talking coherently they decided to take me up to the ward and continue obs there. It was about 9.30pm once i was settled down on the ward, bonus of going private is that I had own room and ensuite. Fraser parked up next to me and we watched telly for a bit while i had pulse and blood pressure taken again. Was starving but only managed two little sandwich fingers, that would see me through till breakfast.

DH decided to go home about 10.30pm as he had to have food and get some sleep to be back for breakfast. After he'd left i watched TV for a bit and drank as much water as I could to get the drip out. When nurse came close to midnight she gave me some panadol and unhooked my drip, yes! Time to stand for first time and try a toilet stop before sleep. Getting up was good but took a while to get my balance, off we went, felt good to be walking, those tights are not comfortable!

Made it back to bed, but then the ribs and shoulder pain first kicked in, must be the gas moving round now that I am. She went and got me a warm blanket and wrapped that around my shoulder and neck. That really helped. This is a common complication as the gas pushes on all the nerve endings for shoulders which are down near your diaphragm.

I slept 12.30am-3.00am, there was lots of obs checking for other patients, so lots of machines beeping. I was sleeping so they didnt wake me up.Managed to get back to sleep about 4-6am, then next round of obs and panadol was before my surgeon came to chat just before 7.30am. Wound check was fine, my incision in bellybutton still swollen but my other two incisions are not weeping or bleeding.

Results! I still have to chat with him about it all at my followup next week however here is the procedure he ended up doing, plus his conclusions:

Laparoscopy & Division of Adhesions & Removal of Stage 2 Endometreosis http://www.nzendo.org.nz/about-endometriosis, plus a Hysteroscopy. 

The endo was very isolated to my left side and around my ureter so he had to be very careful not to slip as its my only one. Looks like no second cervix was located unless it is very well hidden, no rudimentary horn, no hydrosalpinx as does not believe is a right fallopian tube, it is a strange mass but cant figure out what it is. He was also unable to locate the pelvic mass believed to be a kidney, so back to the drawing board on that. He has now confirmed I have a Streak Ovary up behind my liver. This is supposed to be a non-functioning ovary but for some reason its functioning? Once we have a successful pregnancy he wants to take it out as soon as possible, it has the potential to become cancerous and its location is not ideal. Still its growing follicles and ovulating?! Fascinating, first time his clinic has dealt with one i believe. Pictures to come soon. So looks like im back to a UU diagnosis? Will find out next week. He also thanked me for the very enjoyable (not in any way boring) surgery. 

So! With the removal of adhesions and Endometreosis OB/GYN is confident the clomiphene will work now. We have decided to skip this month as we cannot confirm if this post operative bleeding is my cycle or from the procedures, keeping an eye on it as its leaving me very lethargic and unable to stay on my feet for very long. 

My darling husband has been wonderful, feeding me, keeping me warm and hydrated, helping me to shower and taking my compression stockings on and off. I have had a lot of shoulder and rib pain so its been very hard to breathe, on a mix of ibuprofen and paracetomol to see me through until gas subsides. I think once my bruising and swelling comes out ill know how long ill need off work. At the moment im of no use to them, can hardly sit, stand or stay awake.

Was it all worth it? ABSOLUTELY! My photos and reports will now be written up and used for teaching, i am rid of the adhesions and Endo and have more of a chance the Clomiphene will work.  What doesnt kill you makes you stronger right.

Will post again once ive had my appt and off the meds. Apologies if I have not made any sense, taken me all day to write this.

Surgery next week. Wow that was fast.

Tonight was the night. DH picked me up from work as we were lucky to get a 6:15pm appointment. Private is sooo much nicer! We arrived at Forte Health, the new hospital on the fringes of the CBD. Very fancy, gosh, how lucky are the wealthy! We were early again, seems to be a habit of ours. We met with the OB/GYN, he had been studying up on me before we arrived, the Nurse told me afterwards she got ALOT of results through for him to look through. I waved my giant filofax at her that i was carrying and said "I know". He asked why i was here and then read out my referral letter (ill get a copy of that tomorrow) from my GP. Basically it was a second opinion, cause I can. We talked about why we think the hospital had no desire to look into my abnormalities, he agrees that if its not affecting my fertility, the Assisted Fertility Clinic would not want to know really, how do we know its not affecting my fertility? Its strange masses filled wiith fluid? Surely cant be good to leave them be? We talked about the discovery of the ovary and he is not sure thats actually an ovary as the mass seems quite large. What appear to be ovarys could be any fluid forming. He thinks its possibly a unformed kidney? Either way it needs checking out. Next we talked about pain. Yes, I get pain, all over my abdomen and back, in my shoulders. Never debilitating, but unexplained pain. As this pain is during certain activities and various stages of my cycle, he wants to check it out to rule out its not Endometriosis, that would explain possible problems with bladder and bowels maybe? 

So, all going well with the pre-approval via Medical Insurance company tomorrow, in 6 days time (Monday 18.08) I will be in surgery for a Diagnostic Laparoscopy +/- Laparoscopic Excision of Endometriosis and Hydrosalpinx (fluid filled tube). http://en.m.wikipedia.org/wiki/Hydrosalpinx. He will not touch any uterine horn that he finds without my consent, that would be a separate op. He believes there is only a tube visible on the scans. He will however investigate the right mass behind my liver, he would not remove without my consent but will assess its viability for laparoscopically removing eggs from it. Its awkward that I am now spread across 3 specialists, but he agrees we could all benefit from his findings. 

Eeeek, going under the knife and all the risks associated, lots to think about. First time since having my tonsils out. Due on in 2 days time, so close to my op, but wont be on Clomiphene this month, will have to ring hospital and let them know.

Will update this tomorrow once i get the surgery booked, so many hoops, forms and phonecalls, oh, and talk to my workmate about the leave she wants to book on the day he wants to operate! Sighhh.