Tuesday 9 December 2014

Consent Appointment, Test Results...all booked for Feb 2015!

Tue 25.11.14 - IVF Cycle #1 Consent Appt, 1.50pm. The day had finally arrived.

DH and I decided to take afternoon off this day. 1) because I was soo anxious I could hardly concentrate that morning and 2) my Dad had surgery. We arrived early as we do for all our appts. Waiting room was full of couples today, avoiding eye contact as per usual, nervous looks on faces. 

Our RE called us in, it was DH's first time meeting her. Think he was relieved to finally see a woman as my last two OB/GYNs have been men. We got straight onto Blood and Semen Analysis. My Day 3 Bloods look fine apart from my Prolactin levels shooting up again. If you head back to start of blog this has been an issue before. Turns out stress is a likely factor, she asked how much stress ive been under and i laughed out loud! "Everyday" i said. DH's bloods had nothing to report, so far so good until we got to the Semen Analysis. Turns out this whole time DH has had sperm antibodies at levels of 100%. What does that mean you ask? Simplified it means there wasnt much possibility of us conceiving naturally and did 6 clomiphene cycles for nothing. Sighh. More info below...

It is possible to develop antibodies to sperm.  Almost always, sperm antibodies are generated by the man producing the sperm.  Most commonly, sperm antibodies are generated after vasectomy.  The areas of the testicles where sperm are formed, and the entire tract that delivers the sperm as ejaculate is immunologically isolated from the rest of the body.  Proteins on the surface of sperm are never in contact with the body to either be recognized as part of “self” or, under normal conditions, be deemed as foreign material.  Performing a vasectomy interrupts the normal barrier between the portion of the body which produces sperm and conducts them to the exterior at the time of ejaculation.  Once the barrier is breached, the body’s immune system discovers a new set of proteins, and believes them to be foreign invaders.  Therefore, the immune system begins to make antibodies.  Antibodies are large proteins which attach to sperm, and can interfere with motility or cover the head of the sperm, so as to interfere with the acrosome reaction.  To explain the last term, the sperm head is covered by a packet of enzymes called the acrosomal cap.  As part of the process the sperm undergoes to be able to fertilize an egg, the outer membrane of the acrosomal cap breaks down, releasing the enzymes.  Enzymes of the acrosomal capchange the membrane covering the sperm head behind the acrosomal cap allowing the sperm head membrane to fuse with an egg cell membrane.  Once fusion of these 2 membranes occurs, the boundary between sperm head and egg disappears, and chromosomes of the sperm enter the egg to fertilize it.  If the sperm head is covered by antibodies, none of these processes can occur.
Trauma to the male reproductive tract can also cause a defect in the barrier between the sperm production area and the immune system. 

So what that now means is we need a specialised form of IVF called ICSI. Its quite common actually, RE said the use it for at least 50% of most cycles performed. It is where they select one of the best sperm and inject it straight into the egg.

After talking about all that we had a quick run through of the timeline of the cycle, how the drugs worked, when retrieval willhappen and answered any questions DH had, she then checked her calendar.

"February, around the 23rd, how does that sound?" Marvelous! My grin was ear to ear. Even tho we were desperate to get started there was alot going on and DH and I needed to be ready. So we're all booked in.

I start my drug training as soon as my cycle starts in January so hoping thats when my workmate is back from leave, otherwise im going to be one busy girl trying not to wigg out. Then the countdown is on! Im really hoping my New Year resolution of early nights, healthy eating and no stress comes to fruition. I neeeeed this to work.

This year has been tough! I cant wait to start a fresh one. Update you when I know more.








Wednesday 19 November 2014

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.


Monday 13 October 2014

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!

Monday 8 September 2014

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.



Friday 22 August 2014

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!




Tuesday 19 August 2014

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.

Tuesday 12 August 2014

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.


Thursday 24 July 2014

Second opinion maybe?

GP visit today, was glad i went as it was her last day at my medical centre but my original doc still isnt back from maternity leave so ive decided to follow her to her clinic. She told me today that I'm a really interesting patient and would like to keep me. She has really helped me the past few months and knows all about my current health, my TTC situation plus shes been through IVF so she knows the ins and outs.

Outcome from today? Im getting a second opinion. I have been referred to a private OB/GYN who is also a senior consultant up at public. She has referred me for Diagnostic Laparoscopy or a Hysteroscopy http://en.m.wikipedia.org/wiki/Hysteroscopy or both, or none. Depends on the outcome of my consultation with him. Luckily at this stage its still diagnostic so Southern Cross have confirmed ill be covered as long as my procedures are not to improve my fertility, that will all have to go public, he should be able to refer or consult with my specialist there too. GP said its very important for us to know exactly whats going on in there and to get a diagnosis of my anomaly before I do IVF or get pregnant and scans arent the way to do it, it's all been missed way too many times. She agrees they should have looked at the whole scan, not just for the UU.

So, Tuesday 12.08.14 (Mums birthday) ... I shall meet this new specialist and he would have gone over my scans, notes and letter from GP to come up with a plan of attack.

GP and I also talked about the removal of my ovary and tube, she's worried it will drop my CPAC score, so am I, all because of the risk of hyperstimulation and egg retrieval... god I hope I get pregnant on the Clomiphene! None of us are keen on that idea at all. 

We will have to wait and see... more waiting.










Monday 21 July 2014

Good things come to those who wait

Today was A.C.C outpatients day. Arrived early as DH picked me up from work, being 3 degrees outside we took one car today and decided outpatients waiting room was warmest place to wait. Weren't waiting for too long, they took us in early, same thing happened last time so that's good.

My nurse came and grabbed DH and I and put us in a consulting room and said "Dr will be in to see you". In came my registrar? Hmmm, he must be busy...again. As its an acute hospital that is fair enough but 10 mins is all I needed!

She started by saying "has anyone actually told you what we found on the last lot of scans?". I said that Pip the radiologist and Penny my sonographer had explained to me quite a bit during the scan and the rest I read up on (such a medicine geek).

Finally talked a bit about my periods as I had a pretty non-existent one this month but we all agreed that was probably the Clomiphene, we did a pregnancy test just in case however that would have been a miracle child for sure if positive as only one day of BMS during fertile days and right ovary ovulating into the middle of nowhere that month.

So gist of it is my registrar still won't tell me if its Uterus Didelphys or Bicornuate Bicollis, she is just going by what the radiology report says, which is Bicornuate Bicollis, I'm still not convinced. They say my right cervix and right uterus are non-communicating so they are pretty sure the fluid is not leaking through to my left uterus as this could be causing issues with embryo implantation, not sure they are going to confirm that either as no referral for High Resolution MRI as previously recommended in earlier radiology report. They are pretty certain that my Left uterus is working nicely and could contain a pregnancy (with its own set of complications of course). No mention what-so-ever of my possible pelvic kidney, I'm sure if it was a worry they would have mentioned it.

Useless Right Uterus will be staying put..Right Ovary might have to come out, along with the fallopian tube that is attached. This would significantly reduce my egg count, so they are waiting for the Day 3 bloods I did on Saturday to come back to look at my egg-store number. They are concerned once they pump me full of drugs and they want all follicles firing that it may cause issues due to its location as they can get quite big in size, in the pelvis they have extra room to growm, also as they harvest eggs via the vagina (which they will do with my left) they are not comfortable harvesting them via my back, if they go through with the needle they could puncture an organ or do some damage so they are talking to Fertility Associates. If they are not keen either it will be coming out, so surgery would have to be done well before IVF.

Lastly, specialist STILL hasn't done the IVF letter of referral to Fertility Centre, so sign of it on my file even tho my nurse had advised me that he was onto it last month. So my registrar is onto it. If he had of sent it last year my 12 month wait would have been up this September-December, instead it looks like ill be waiting till next July, unless they can backdate it, which they have promised me they will. I should have been scored months ago! thank god my GP is onto it... I now have a Chart Number at least.

So, what next? I have a GP appt on Thursday to talk all this over with her and find out what I need to do in meantime in regards to the possible pelvic kidney and the fact that might be causing the pain in my right hip. I'm back on the Clomiphene next month (for the next 5 or so months) as they are confident that 9-12 cycles should still keep my ovarian cancer free, hope they are right as thats the last thing I need really. Certainly going to do it anyway as still a chance if we catch the left ovary firing that it could work. Anything's worth a go really at this point. I still have a few phone calls and emails to send to get to the bottom of this backdating/IVF time frame so I'll post when I know more.

Feeling less patient now but glad we have some movement. Baby steps. I couldn't do all of this without my darling husband. Even though he must be getting really frustrated and disheartened he still remains my rock.

We just need to remember ...




Friday 18 July 2014

Back to the Assisted Conception Clinic

Post arrived! that was quick! My clinic appointment to see my GYN on Tuesday 22.07 at Christchurch Womens to discuss outcomes of last scans. It might not be a double uterus!? from my radiology report it seems they now think it is BICORNUATE BICOLLIS. Sooo... no clomiphene for me this month which is a shame cause after last months high progesterone levels (results to come) and huge follicles 21 and 22mm! I had a feeling the clomiphene had just started to build up in my system again.

To take my mind of things decided to get our IVF paperwork done and posted, luckily i had already had smear/high swabs done last year so got them faxed off too. Day 3 bloods to send in there tomorrow and then we are done! CPAC Scoring can begin. Soo thankful my GP got the referral through as dont think letter from specialist has made it there yet :-/. Please dont let it be too much of a wait. 

Well next update will be Tuesday night after my appointment. In the meantime here is my radiology report from my last (and longest) internal ultrasound, you may have to google a few of the words (im slowly learning some medical terminolgy), but you will get the jist of it...its an interesting read! Going back on my previous scans and MRI turns out a right rudimentary horn was previously mentioned..

Ovulation induction .

E2=2849.

History of left unicornuate uterus and solitary left kidney .

 

FINDINGS:

Transabdominal and transvaginal scans were performed.

Correlation is made with previous ultrasounds and MRI pelvis

17/9/2013 .

 

Uterus: The left uterine horn and cervix is identified, as seen on

previous imaging . It has endometrial thickness 16 mm .

Today, it is also apparent that there is an atretic right uterine

horn. This is confirmed on retrospective review of the MRI from

17/9/2013. The right horn has a small cervix which does not appear to

be in communication with the vagina or left cervical canal and is

most likely stenosed . Distal to this there is a tortuous tubular

structure extending towards the right inferolateral pelvic sidewall

which measures up to 6 mm in diameter consistent with dilated uterine

cavity/fallopian tube . Tubular content is anechoic on ultrasound

consistent with fluid, and high signal on the T1 MRI sequence

consistent with blood products .

 

Left ovary: normal appearance and size, normal location.

26 x 15 x 33 mm, volume 6.7 mL.

There are 19 small follicles measuring up to 7 mm in diameter . No

dominant follicle .

 

Today, after review of the MRI scan, we scanned her right upper

quadrant where we discovered the right ovary in the right lower

abdomen, just below the lower liver margin . It measures 56 x 26 x 29

mm, volume 22 mls, and contains a dominant 25 mm follicle, a further

follicle measuring 21 mm and several small follicles .

 

Laterally in the right adnexa, adjacent to the pelvic vessels, there

is again an ovoid solid lesion which measures 33 x 9 x 21 mm . It

does not contain any definite follicles . This was previously thought

to be ovarian tissue but given that there is definitely right ovary

in the right abdomen lower quadrant, I wonder whether this is a

pelvic right kidney .

 

COMMENT:

 

Normally located left ovary contains 19 small follicles .

 

Today we have discovered several new findings in this patient which

are confirmed on retrospective review of the MRI scan . The uterus is

in fact bicornuate, bicollis, with an atretic right horn, likely

stenosed at the level of the cervix .

 

In addition, she has a right ovary which is located in the right

lower quadrant of the abdomen, and contains a dominant 25 mm follicle

. On MRI there is a tortous tubular structure extending inferiorly

from the right ovary ? fallopian tube.

 

Previously right adnexal tissue has been identified and this is again

seen and I wonder whether it may be a small non-functioning pelvic

right kidney .








Friday 4 July 2014

How could they have got it all so wrong?

Halfway through my ultrasound Penny came across what she also believed to be a tubular structure in my right Adnexa, which is the pelvic region whete your ovaries sit.

Hmmm, she was confused. I asked if it could be a right rudimentary horn with fallopian tube as they had previously believed i didnt have one. Not sure she said but she was having a fair hunt around.

It was then she came across sonething else which surprised us both... a SECOND CERVIX!

She went away and studied the scans shed taken with the radiologist, they both went back over previous MRI again and both came back in to scan once again. It seemed their hunch was right! She had found what we believe to be a DOUBLE UTERUS, otherwise known as UTERUS DIDELPHYS. Two single horned separate uteruses but both cervixes in one vagina.

Wow ok! Thats not a UU? So instantly Ive gone from half a uterus, to two halves. Only one being viable tho as number two looks smaller, no lining, filled with fluid, not in good shape.

But wait, theres more! The radiologist had another hunch and wanted to investigate what they had believed was a tiny right ovary in the caecum in the right illica fossa which is in behind the bowel in the right hip (where ive been getting alot of pain). After a lot of pushing to move bowel out of way, there it was!! My RIGHT KIDNEY! The missing one. It turns out I have what appears to be a non-functioning very small Ectopic Kidney in my pelvis that failed to move up into the right place. Connected with a good blood supply, but not working that we can see which is why my lefty grew to the size it did to compensate.

She wasnt finished there, she instructed Penny to scan up behind my liver... and there was my RIGHT OVARY! Where my kidney should be, and there on it were two 25mm follicles ready to burst. Its unlikely its linked through to my right uterus, but DH and I make call not to proceed with BMS as if sperm and egg collide inside my abdomen somewhere would cause big probs. Good news s that ovary could be used for IVF as easily accessible.

So, looks like we are back to square one, all the specialists and radiologists are having a meeting about their findings and ill hopefully be back in clinic next cancellation. Paperwork for IVF arrived tho so eager to get forms and bloods for that one and make onto the waiting list asap.

Ill update when I know more, im going to leave you with the picture my radiologist drew on a paper towel of my possible UD. Top left my ovary, bottom left kidney.




Saturday 28 June 2014

The hunt for my elusive right ovary - Clomiphene Cycle # 4 - June 14

Got my period on my DH's birthday! How romantic xx we went to a movie so got to sit and rest for two hours which was great. I seem to take a while to come on, im getting alot of what they call old blood, then one day of heavy bleeding, then tapers off. Clomiphene started 20.06.14. No side effects again this month, the odd hot flush but really bitchy again haha.

Day 10 bloods arrive, levels look good! Will post results at a later date. Waited for phonecall re ultrasound, tuens out its going to be Saturday if they can fit me in. Didnt hear from them in the morning so went out, helped Mum and my brother take my little nephew shopping for his 3rd birthday, exhausted after chasing him around Farmers off we went to Mcdonalds. After losing him in the playgroubd i grabbed him before he coukd run back in and my cell rang. Holding his jumper with one hand and cell in other i only just managed to answer it. "Hello is this Trudi... Can you come into Womens for a scan asap as i can fit you inbetween acute cases". Heh! Great timing, let Mum with the boy and raced out of the mall and up to hospital. Turns out radiology is closed on a Saturday to the public so i had to ring through to let in. I hung in a dimly lit room on my own for a bit until Jo could scan me.

No dominant follicles on my left ovary this month. Thats strange..? Well it must be my right! The ovaries alternate per month and if you count it back the last time would have been April, our month off.

So the hunt for my right ovary commenced. A previous MRI had seen it, so had a previous Ultrasound. We tried everywhere internally and externally. During the internal i saw a puzzled look on 
Jos face. My TV screen was off that day so couldnt see what was going on. She then mentioned shed found a tubular structure filled with fluid. My right fallopian tube?! Could it be? So she followed it along, still no sign. She stopped there and said she was sure the specialist will want to know about what she'd found. The radiogist called me later that night and said not sure who to tell but no follicles to mention. I said no worries ill follow up Monday. So rang nurse, she suggested another blood test see where levels at incase im running late.  Dashed up to lab at hospital gave blood and went back to work. Cell rang in the morning, they can scan me at 1.30pm today. Levels must be still up?

So, todays scan was with Penny. Turns out its the same Penny my sister had in Fetal Medicine. Shes lovely and funny. I apparently have a nice cervix and my anatomy is great to photograph. I start with my usual "Do my notes say I have UU and one kidney and a missing right ovary? She looked at me and said i thought we were only doing ovulation induction scan? I explained my dud follicles on left so must be right and we just have to find it. She was determined, as was the previous radiologist Rex, but i had faith in her that shed find it.

Neither of us were prepared for what happened next... this will need a whole separate post... 

Tuesday 10 June 2014

TTC - Clomiphene Cycle #3 - May 14

Tuesday 20.05.14 (CD3) started my next Clomiphene cycle which the hospital decided to keep at 25mg per day based on the good results I had last cycle. No sense in putting it up unnecessarily as it will put me at a greater risk of hyper-ovulation.

No physical side effects that I could see this month apart from the odd spike in temp but most definitely mood swings! My goodness, did help that there was a little bit of tension in our household trying to find our house-guest alternative accommodation. I was a real bitch! There were many apologies for this as no one wanted to be around me really.

Day 10 bloods came in ok for the follicular part of my cycle, levels look good so was booked in for an ultrasound.

28.05.14 - US @ Christchurch Womens Radiology - this time I had a lovely medical student doing my scan, she said she would be supervised so had no problem with that. I told them both before we began that I had a UU and again this was not mentioned anywhere so was told to always mention that at the beginning, save everyone a lot of time.

This time we got some really great scans. Ive called the hospital to get these saved to disc so I can post a few for you all.


I had 17 follicles this time! wow, 7 more than last month. Only once single dominant follicle again, this time measuring 15mm x 17mm x 12mm. My endometrium thickness was the same as last time at 7mm, and the search began for my right ovary, this turned into a bit of a wild goose chase, they looked everywhere, both having a go, trying to push my bowels out of the way. We gave up in the end, so the radiologist had a look back at my MRI from Sept 13 and thinks that I may have a tiny right ovary deep to the caecum in the right iliac fossa. Long story short right under my bowels where you appendix would normally sit.

Nurse called late that arvo to confirm no hyper-ovulation and told us we were all systems go for BMS commencing Friday 30.06. We decided to go for everyday of my 7 fertile days this month and wait and see at the Day 21 bloods (taken on day 20 as it was a Friday so Nurse and I could chat afterwards).

She phoned that afternoon of Friday 6.06 to say Progesterone looked good for ovulation this month and we will now commence the 2WW. 

Here were my results:

Progesterone - 45 nmol/l
Reference intervals:
Follicular        1 - 4
Mid Cycle
Luteal           15 - 100
Post menopausal  <4
Estradiol - 507 pmol/L
Female Reference intervals:
Follicular        46 - 600
Mid Cycle
Luteal           160 - 770
Post menopausal  <200
Male Reference interval <160

LH - 23.1 IU/L

FSH - 8.1 IU/L
LH reference interval:
0 - 9 years       0 - 2.5 IU/L
>=10 - 15 years   Prepubertal range 0 - 2.5 IU/L. 
Levels rise during puberty towards adult ranges.
Adult male        2 - 9 IU/L
Adult female      Follicular                2 - 8 IU/L
                  Mid Cycle                 10 - 75 IU/L
                  Luteal                    2 - 8 IU/L
                  Post Menopause            >15 IU/L
                  Antenatal                 <1 IU/L
FSH reference interval:
0 - 9 years       0 - 6.5 IU/L
>=10 - 15 years   Prepubertal range 0 - 6.5 IU/L. 
Levels rise during puberty towards adult ranges.
Adult male        2 - 12 IU/L
Adult female      Follicular                3 - 10 IU/L
                  Mid Cycle                 4 - 25 IU/L
                  Luteal                    2 - 8 IU/L
                  Post Menopause            >20 IU/L
                  Antenatal                 <1 IU/L


Its Day 24 of my cycle today and I am feeling very tired and uncomfortable which I normally am prior to my period. We have decided to take a early detection pregnancy test this month before Day 30. I am incredibly nervous and trying not to get my hopes up. Hubby's birthday next Wednesday so hoping for an early birthday present... we will see. Will post results.

Well Saturday came, we decided to do the HPT first thing in the morning. It was a fairly quick BFN but had a very very faint second line at the 10 minute mark, so we waited till Day 30 to see. AF came on Day 32 this cycle. 

After doing some reading on 'timing' I have realised that those on Clomiphene can have their cycles lengthened and also ovulated later than usual on Day 19 or 20. This doesnt help! Our timing was all round O on Day 16 which tested positive on the OPK? im confused now. Just something else to talk to my Nurse about, that and the pain im getting in my right hip. Found info online about Clomiphene increasing your chances of Ovarian cancer so not taking any chances with my 'missing' right ovary.

Anyhoo, May wasnt our month, so lets try for June. Cycle 4. Ill post again soon.

Friday 28 March 2014

TTC - Clomiphene Cycle #2 - Mar 14

Before we begin, we are getting to the part of my blog that might need some translating so here is a helpful link to some fertility acronyms that might help you out.
http://www.fertilityplus.com/faq/acronyms.html

Wednesday 19.03 (CD1 #2). Time to call my nurses at the hospital. Spoke to Stephanie and she confirmed we were all go for the same dose this cycle (25mg from CD3-CD7) as we would assess the dose and look at putting it up if we had no luck again this month.

Friday (CD3) arrived and I decided to take my dose at 6.30pm when I got home from work. They suggest you take it at the same time every day and take at night to reduce side effects as you can sleep through them. Few hours in and feeling ok. Thats great as last cycle I had the hot and cold sweats by this point.

CD4 - CD7 went ok this time, I had a few things to note like nausea, moodiness (my god I have a patient DH) and this time had very dry eyes and sinus resulting in some blood in my nose. Strange as it sounds I found a lot of similar experiences online.

I made it! that was nowhere near as bad as last month. Maybe I have some good luck finally coming?

Friday 28.03 (CD10), time for my blood test. This is to test the Estradiol and FSH levels to confirm if an ultrasound is ready to book as these levels indicate the possibility of growing follicles. I have to get these bloods done before 9am in the morning to ensure the results are back with the nurses in the afternoon. 1.00pm got a call on my cell and it was Stephanie to see if I could come in at 2.30pm for my ultrasound. Great! meds worked! Work was fine, I just said I was going and rocked up to the hospital in time, lucky my work is so close.

My sonographer was lovely. We had a chat about why I was there, she would be scanning my endometrium lining and ovaries to confirm follicle size. She asked if id had one before and I let her know my journey thus far which is great as they had not noted my unicornuate uterus or renal agenesis, that would have made for an interesting scan! haha. She took a few 'good shots' of my kidneys and think she even got a good 3D of my uterus. It seems mine is of a decent size for a 'half', lucky me.

So...here are the results of the scan. Endometrium is 7mm, that is kind of the baseline as far as linings go, but its a pass! they think it should be cushy enough for an egg. 
Follicles... 10! good job Left Ovary! Only one of these seems to be mature @ 16mm which is actually good news for me as reduces the chance of multiples. Good size for follicles is actually 17-18mm and over but as they grow 2mm every 24hrs we should be looking good for O which should be Tue/Wed (CD14/15). Right Ovary could not be spotted on this occasion due to a large amount of gas in my bowels (stupid IBS) so we have no idea where it is or what its doing at this stage but its not connected to anything so shouldn't be an issue. Feeling a wee bit anxious about this as my cycle is currently a reviewed cycle so Im not that closely monitored which means if we did end up in a multiples situation it may not be picked up till later, we will deal with that when time comes I suppose. 

Time for some BMS! (Baby making sex). Nurse has suggested we go for every second day at least to ensure enough of the boys hang around for O and DPO. DH not complaining at all haha but will need to work around our current house guest situation.

Next blood test is Tuesday 8.04 (CD21). This should confirm O and I hope to have nothing but good news for you all, what ever will be will be.

Well test results looked good for O, so my nurse said, for those that need them, I have included the reference intervals below:

Progesterone - 57 nmol/l
Reference intervals:
Follicular        1 - 4
Mid Cycle
Luteal           15 - 100
Post menopausal  <4
Estradiol - 635 pmol/L
Female Reference intervals:
Follicular        46 - 600
Mid Cycle
Luteal           160 - 770
Post menopausal  <200
Male Reference interval <160

LH - 18.2 IU/L
FSH - 7.1 IU/L
LH reference interval:
0 - 9 years       0 - 2.5 IU/L
>=10 - 15 years   Prepubertal range 0 - 2.5 IU/L. 
Levels rise during puberty towards adult ranges.
Adult male        2 - 9 IU/L
Adult female      Follicular                2 - 8 IU/L
                  Mid Cycle                 10 - 75 IU/L
                  Luteal                    2 - 8 IU/L
                  Post Menopause            >15 IU/L
                  Antenatal                 <1 IU/L
FSH reference interval:
0 - 9 years       0 - 6.5 IU/L
>=10 - 15 years   Prepubertal range 0 - 6.5 IU/L. 
Levels rise during puberty towards adult ranges.
Adult male        2 - 12 IU/L
Adult female      Follicular                3 - 10 IU/L
                  Mid Cycle                 4 - 25 IU/L
                  Luteal                    2 - 8 IU/L
                  Post Menopause            >20 IU/L
                  Antenatal                 <1 IU/L
 
So we waited... and waited... from Day 21 - Day 30. It really is the worst part, esp for the ridiculously impatient... I think I did quite well not to cave and HPT. It's also really hard as most pre-pregnancy symptoms are the same as PMS so you really can't sit around worrying about it all day.

So, Day 30 arrived and so did AF. It was pretty normal with one day of heavy bleeding then 2 days of very light flow. Safe to say it was definitely AF and not implantation bleeding.

We decided to take April 14 off as DH's father was very ill and our house guest also still living with us (not a stress free situation). Was the right choice as one week later my father-in-law passed away :-( May has to be the month! we are conceiving for him as we hoped he would be here to meet his grandchild. I know he will be here in spirit tho xx

May 14 will be our next cycle, waiting to hear if they will be putting me up to 50mg, after speaking with my GP she has advised to be cautious of this due to multiples and my lack of housing for them, also to find out my Fertility scoring so we know were we will be at for IVF waiting lists etc, just incase Clomiphene doesn't work we can plan for the next stage.

Fingers and toes crossed.






Tuesday 25 March 2014

TTC - Clomiphene Cycle #1 - Feb 14

Wednesday 12/02 (CD1 #1). I decided it was time to call the hospital to start my first Clomiphene cycle...why wait? Still not up to 56 kgs (BMI baseline of 20) but decided to call the hospital anyway. My nurse at GYN Outpatients was really helpful, normally it would be a case of needing to lose weight, so she said "lets just do it" and see what happens. So she faxed a script through to my chemist for me to pick up and start on Friday (CD3).

Later on that day I found out my husbands grandmother passed away. Tickets were booked for Sunday morning Christchurch to Auckland so we could meet Fraser's sister from Sydney there and drive to up to Whangarei to be with the family.  

After talking to my mother that night she asked if it was a good idea to be starting this cycle with all of this going on? I said, of course! we will be fine, sooner we start the better.

Thursday (CD2) I called the chemist to confirm the script was ready to be collected and they queried why I had half a tablet for Day 3 to Day 5, I said I suppose that's right? I later on found out later in the month that this was not right, on reflection I should have checked with the hospital.

Friday came, Valentines Day (CD3). As I take Thyroid meds in the morning I opted to start my Clomiphene in the evening, so after I got home from work I took my first half a tablet, so 25mg. Later on that night I definitely started to feel hot and cold, wondering if I had picked up a bug. After doing some packing I decided to go off to bed.

Next morning I got out of bed in a rush as things to get done before we left for Auckland but after getting up I found that I could hardly walk fron lethargy, nausea and dizziness. Great... side effects from meds? bug? wasn't sure, all I knew is I got worse throughout the day and was anxious as I had a 7am flight the next morning (Im a terrible flyer anyway).

I made it to Auckland in once piece, just! after a very nauseating drive to Whangarei I spent the next two nights hardly sleeping due to intense stomach cramps, hot flashes and headaches so bad I could hardly move my eyes or head. I managed to make it through the funeral and family get together.

When it came time to leave Whangarei the following Wednesday I was stoked to be going home, and off the meds, still blaming them for these "side effects" which later I found to be common for alot of women but not that common.

CD10 arrived Friday 21/02. Time for my blood-test. Went in before work as need to get them done before 9am so results will be across to hospital that afternoon. Testing for FSH, Estradoil, etc. Results came in, weren't good, so off next day for another blood-test in the hopes we were too early, and nope, levels dropped again. No ultrasound for me this month, the whole cycle was a bust. Nurse said she was concerned my dose wasn't right and she would check with GYN, lets get it sorted and try again next month. I counted out my 30 day cycle and realised that cycle would be just before my 34th birthday.

Saturday 11 January 2014

Time goes by, sooo slowly.

Im normally a patient person but this past year has gone sooo slow. I knew I was in for a long wait tho, they keep telling me good things take time. 

My weight gain has been painfully slow. Jan 2013 to Jan 2014 i think ive gained just under 6 kgs. Im nearly at my optimal weight to start my meds, will be sitting just inside the optimal range so the next 28-30 days will be lots of eating and sitting round to make sure i keep that weight on.

Starting to freak me out a little that by next Christmas we could have a new family member to celebrate with, not getting my hopes up to high tho as my Thyroid is going to make TTC very difficult.

Ill update again when i find out more about the Ovulation Induction. Bring on February!