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 .

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.

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... 

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.