MRI again confirms it

17.09.13 - last MRI, I hope!

I arrived way early for my 8:15am appt, which is better than being late. The lady at reception said they may take me early and as luck would have it they did. I had a lovely young man that sat down with me and DH for a chat. He confirmed no IV dye or IV to stop my bowels from moving so they got me in early so we had a bit more time up our sleeve for some extra pics. Best thing about spending 30 mins in this machine was no gown...I got to stay mostly dressed so I was nice and warm, im ridiculously cold most of the time. Upon disembarking the lovely young men that photgraphed my insides confirm they got some great shots of my uterus. Nice work guys lol. 

So, I gave it a week then called my GP for the results...Yup! Its definitely a unicornuate uterus! But a decent size one? Lol. No rudimentary horn that they can see, so still no surgery on the table. Still big question mark on the right ovary, seems to be a now you see it now you dont situation. So all good news so far.... Fingers crossed it stays that way

Right now that those tests were done I called the outpatients at hospital to make sure they were aware and no, was still on wait status, that was promptly changed and lovely helpful lady went on hunt for my HSG results. She also put me on the cancellation list as with only 2 more monthly clinics to go this year It wasnt looking hopeful to see specialist until after Xmas.

Not even one week later my cell phone rang. 3 cancellations! Yipee! All booked in with GYN 10.30am Friday 11th October. This is it. Everything is about to get very real!

Update to come next week...with some answers...Eee im excited and scared at the same time.

MRI Pelvis, second and final?

Letter! Fantastic. Second MRI booked, this time they will be getting up close and personal with my uterus and uber kidney. Last MRI of bowel was inconclusive so this plus HSG will result in diagnosis and plan of attack, hopefully the specialist will see me now.

MRI Pelvis prep includes no eating and drinking 4 hours prior, a IV med to suppress bowel spasms (Buscopan) and an IV contrast dye called Gadolinium which highlights different tissue and blood vessels and aids diagnosis. That one gets flushed out by the kidneys so must check how uber kidney will cope with that, ill put it on the many consent forms I'm about to fill out.

Progress! Feeling great that things are happening, will call ChCh Women's Outpatients tomorrow as I'm curious once this test is complete how long ill have to wait again to see GYN.

Will update again once I get the results and pics, maybe its time to start an album? Lol.

Soy, coffee and Thyroid

Well, it turns out my TSH and Thyroid antibodies are at it again. Confusing as I have now been taking the Levothyroxine for 8 months now and they had dropped a few months back. TSH now seem to be outside the normal range confirm I have a propensity to primary hypothyroidism. Annoyed as my levels need to be 2 or lower to be safe for pregnancy as anything above that heightens my chance of miscarriage and preterm labour not to mention risks with fetal brain development. 

January: TSH 3.8 mlU/L

April: TSH 1.2 mlU/L

August: TSH 4.67 mlU/L

Also Antibodies results show they are also very strong, 90-100% of cases of Hashimotos Thyroiditis and Graves Disease show antibodies. Less than 10% of normal individuals have thyroid antibodies.

January: Anti-Tg (thyroglobulin) 241 mlU/L

August: Anti-Tg (thyroglobulin)  537 mlU/L

January: Anti-TPO (thyroid peroxidase) 244 mlU/L

August: Anti-TPO (thyroid peroxidase) 871 mlU/L

It turns out that consumption of soy products, so soy milk and coffee may be causing issues with my body's ability to absorb the thyroid medication so I've emailed my nurse and GP to see if I have to stop my morning coffee...nooooo! Its the only thing I'm allowed these days haha. So, all in all we may have found a very possible cause of current fertility issues, I may be seeing the thyroid specialist after all. Will wait and see.

Right, heard from my GP and it turns out she never got my blood results but has managed to track them down. Thyroid TSH levels definitely up due to antibodies so shes up'd my Levothyroxine meds to 100 mcg Monday-Friday and 50 mcg on the weekends. Have to do another set of bloods in 6 to 8 weeks to check again. Means we cant TTC while my levels are up so more waiting. Should have MRI done by then.

Wow! it's official.

16.08.13 - "X-ray Day"

Today was my Hysterosalpingogram (HSG). This was it, the X-ray that would tell all, even though I would finally know for sure this was also the test I was dreading however it sounded a whole lot worse than it actually was.

The day started with a phone call while I was getting ready, it was Cashmere Radiology ringing to advise they had a roster change so there would not be a woman available to do the procedure till the afternoon. I advised her that I was fine with a man and confirmed I would see them at 11.00am, DH looked a bit uncomfortable with that till I reminded him my surgeon would be a man also. DH was coming in with me for the procedure so that made him feel a bit better haha.

I took the whole day off work as they had advised there may be dye leakage, bleeding and abdominal cramping afterwards and was not keen to be at work for that, so DH took a half day too. He went to his lecture, got me a coffee from my fav cafe on way home to pick me up. I wanted to get there early, I like to be early to all my appointments, you feel alot calmer and prepared when you're not rushing around. They had a fantastic selection of mags, so chilled for 20 mins before they called me.

I was taken through to a room to get changed into my robe where she explained the procedure so I just nodded and smiled as I had done alot of reading up and was fully prepared, so no questions from me, apart from "do i need to take out my belly piercing?" lol.

Righto - it was go time, the moment we have all been waiting for! She took me through to the room with the giant Xray machine where DH and I waiting to meet the gentleman that would be doing my procedure. He immediately cracked a joke so that made me feel really comfortable. 

Up onto the X-ray table I went, the actual inserting of the speculum and catheter was no worse than a smear test, im not going to say it didnt hurt but i was surprised how little it actually did. Within seconds the dye was injected and he slid me up under the machine, he took one of me on my back, one on my left hand side and one on my right hand side and we were done. Couldnt believe how quick it was. He then slid over the telly and DH was ushered over to me to see the screen.

IT'S OFFICIAL ... I am 1 in 4000 born with a Unicornuate Uterus and I have just the one fallapion tube ... but its OPEN which means its not blocked... seeing the dye through the tube and spilling out into my abdomen was the BEST NEWS EVER!! 

 There is absolutely no sign on the X-ray of a Rudimentary Horn or right-hand side of my uterus that we can see, I think the next pelvic MRI I have may look more into that, heres hoping otherwise I could be looking at a laparoscopic investigation or hysteroscopy (http://www.oxfordclinic.co.nz/procedure-treatment/hysteroscopy) not keen on the idea of either of those.

So let's see what the specialist says, i'm feeling really happy with the news, I had psyched myself up for the bad news, so feeling very relieved as there is a really good chance we could conceive naturally, still early days, but some positive news.. Yay for me!!

Will post again when I get my MRI appointment.

Dr Libby Weaver Seminar

I had the pleasure of listening to a very well educated, positive, happy, healthy and empathetic woman tonight at a seminar I took my Mum and sister too thinking they would get more out of it than I would. 

http://www.drlibby.com/about-dr-libby/

I was very wrong and it just reinforced decisions I have made and am continuing to make. She has reminded me that my health and happiness should be my main focus as I face what the next years of my life have in store for me. Few books of hers to read to get the most out of her message, but will remember the W of her A-Z on Womens Health tonight.. "why do we do what we do when we know what we know"... This is going to help me make better choices tomorrow, then the day after that, it will all be about baby steps, in the hopes we will one day hear some in our home. 

The HSG (Hysterosalpingogram)

Got an appointment! Well got my letter re the appointment...This time at Xray Department at Princess Margaret Hospital. Will get to know all the Radiology Departments in Christchurch at this rate. 

I have to wait until my next cycle (expected Tue 6.08) and phone to book the test for day 5-10 which is the best time to get the best result.

This is an important test for me - this will confirm my UU, my rudimentary horn or not and also check status of my left fallopian tube.

Here is a brief synopsis of what the test involves:

A hysterosalpingogram is an X-ray of the uterus and fallopian tubes which allows visualisation of the inside of the uterus and tubes. The picture will reveal any abnormalities of the uterus as well as tubal problems such as blockage and dilation (hydrosalpinx). 
If the tubes are not blocked by scar tissue or adhesions, the dye will flow into the abdominal cavity. This is a good sign but it does not guarantee that the tubes will function normally. It does give a rough estimate of the quality of the tubal structure and the status of the tubal lining. Some cases where the tubes appear to be blocked where they join the uterus, may in fact be normal. Often blockage at this location may be due to spasm of the opening from the uterus into the tube or from accumulated debris and mucus blocking the opening. This can be managed by passing a very thin catheter into the fallopian tube either at the time of hysterosalpingogram or during a hysteroscopic procedure.
A hysterosalpingogram may also indicate endometrial polyps, submucus fibroids, intrauterine adhesions (synechia), uterine and vaginal septa uterine cavity abnormalities, or the after-effect of genital tuberculosis. The hysterosalpingogram may or may not be able to detect pelvic adhesions, mild hydrosalpinx, small polyps, endometriosis, tubal phimosis (clubbing of the fimbria at the end of the tube), or immotility of the tube. Other tests, such as hysteroscopy saline sonohysterography or laparoscopy may be necessary to accurately evaluate your uterus.
Although the purpose of the hysterosalpingogram is not therapeutic, sometimes forcing dye through the tube will dislodge any material which blocks it. A number of women have become pregnant following a hysterosalpingogram without further treatment.
Generally there is no special preparation needed for this test. However, depending upon your diagnosis, you may need to take antibiotics to guard against possible infection. To ensure that you are not pregnant, the study is done between Day 7 and 10 of your cycle. Prior to the procedure you may take an anti-inflammatory medication (Aleve or Motrin). A small catheter is placed into the cervix and the dye is injected. You may feel heavy cramping during, and for several hours following this procedure. 
Cool - sounds like heaps of fun! Im strangely looking forward to it tho, will know once and for all!
Will update again once I've been :-)

Next stop, Christchurch Womens Hospital

So it's been 7 months, not much to report until today hence no posts, also I was starting to get impatient and you didn't want to hear all about that. Checking the mailbox every single day for my appointment letter was frustrating for both me an DH...Im a lucky girl for getting an appointment so soon tho, going public can be a nightmare.

26.07.13 - Appointment at the Assisted Conception Clinic, Christchurch Womens.

I was very nervous, not sure why, maybe its because i didnt want bad news, or maybe its because I didnt know what to expect today. Was also pretty excited something was finally happening!

Got to appt. early so they took me straight away. Nurse did my height and weight, only just scrapped through with the BMI and she made a point of saying so. Ive been trying really hard to keep on the weight. Apparently she also sniffed me she told me later, haha, apparently lots of people must lie about being smokers, lucky i quit 10 years ago isn't it.

I gave her my giant folder of scan results, radiologist reports and blood test results and she disappeared to find the specialist to go over my notes, we waited very patiently while they read over my mountain of notes and prepared their list of questions for me.

Finally i met the registrar and her medical student (I have a feeling im going to be a case study for a lot of the Uni of Otago students) so will meet lots of people by the end of this journey. I was so nervous I cant remember either of their names tho! Whoops.

So the questions begin. We talk about my periods, my bowels, my diet, my bladder, my thyroid, my uterus, my blood test results and other past health issues which all sum up why I was there to see her today. By the time we have finished talking they give me 'the pity look' which I now get alot and they have surely worked out that Im going to be quite a complex case. That can either be a good thing (if my surgeon likes a challenge) or bad if all of those above will mean we have a snowballs chance of growing our family and assisted fertility is not an option.

Sooo...the long and the short of it is I need to now go for a more detailed MRI of my pelvis to ascertain if I do infact have UU, find the ovaries, the one fallopian tube, make sure its not scared and blocked, see if there a rudimentary right horn that needs to be surgically removed. I will also be getting an HSG of my uterus, which i knew i would need so thats ok, (http://en.wikipedia.org/wiki/Hysterosalpingography) to give them more information on the shape and volume. My kidney function is being retested via the bloods I did today to see if I need to see the kidney specialist, my thyroid TSH levels are being retested for fertility and my notes will be sent to the Thyroid Specialist at Public to look over. In the next week or so ill be doing another 21 day blood test to see if my Progesterone levels have improved as they we very low and weren't looking good for ovulation back in January.

There has also been one more outcome from today - my registrar and I started talking about pain, if I had any with periods, whether or not I could have PCOS or Endo and we ended up talking about Kidney and Bladder infections as I will need to be especially careful with my Hypertrophic Kidney now, so mentioned to her that I've been tested several times over past 3 years for UTIs which came back all negative, she thinks I may have a type of Cystitis which is closely linked with IBS. Brilliant as I had already self diagnosed on google haha so we'll look into that eventually too. https://en.wikipedia.org/wiki/Interstitial_cystitis.

To conclude our next steps will be, more waiting, more tests, more procedures, more eating and weight gain, more exercise and sleeping and less stressing. Good things come to those that wait and stay positive :-) I don't get to meet my Surgeon/FertilitySpecialist until all results are in so he knows what steps to take next. He sounds very experienced so looking forward to meeting him.

Will update again when I get my next appointment. Hopefully soon.