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.