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.

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.

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 ...

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 .