trust your instincts

This post is going to be a pretty detailed affair, I will try my best to keep from overloading you with information, but this is where I share the reasons for me wanting to create awareness about AS. I will explain in as much detail as needed how something I feel that was so obvious went un-diagnosed.

Just over a year after our first miscarriage we made an appointment with the leading Fertility Clinic in our city. This is the positive part of this blog so I’m happy to start with this. We got so incredibly lucky, it just so happened the specialist we were scheduled with has been our saving grace. Don’t get me wrong, I believe all the specialists at this clinic are undoubtedly fabulous however the pure gentleman that we got assigned to, well we cannot speak highly enough of this man, and I say this, sitting here still baby and belly-less. You see if our ultimate goal is not reached my husband and I will know that our specialist has done absolutely everything he can to try and make it happen, there will be no stone left unturned and that is an amazing piece of mind to have in this situation. We have total faith in him.

During our initial consultation with DR Awesome (I will call him this for the purpose of this blog) he asked the standard questions, organised the routine tests of bloods and sperm. He also did an internal scan during that consult (my internals not my h-bands) which he picked up what he thought may have been a fibroid. Dr Awesome suggested a Hysteroscopy. Now being in NZ we have public health care and private health care. The services provided by Dr Awesome and the Fertility Clinic were on a private level so we paid for this ourselves, however the cost of investigative procedures, treatments and surgeries privately were beyond our situation and we had only just started the journey so weren’t ready to pour our house fund into it just yet.

Dr Awesome referred me back to my local hospital (the same one that preformed both my D&C’s), and requested they carry out a Hysteroscopy. A Hysteroscopy in layman’s terms is where they set you up just like you’re having a smear test, the Dr insert’s a tube through your cervix into your uterus that pumps in fluid and then inserts a tiny camera. The purpose of this is to have a good look inside the uterus and to check the tubes are clear and visible.

A good few months after the referral I was called in to my local hospital. The Gynaecologist that did the hysteroscopy had a wonderful nature, and great bedside manner, I don’t wish to talk ill of her but this really is where the failing started, well I guess the failing started at the first D&C but I digress. As this was just an investigative Hysteroscopy (not an operative one which we will talk about later) I was wide awake and felt everything. My husband was sitting beside me and we had two nurses fussing over me, all the staff were lovely and so caring. The screen was set up beside the bed so we could all see that the camera could see. Once she was inside my uterus there was no looking at the screen for me, the pain was immense, my eyes were full of tears and I was squeezing my husbands hand to death. I did not want the Dr to abort this mission otherwise we would have had to re-schedule and do it under a general anesthetic (that would have meant another couple of months wait). I just wanted to get it done. I am unsure if the pain was worse than expected being that my uterus was full of adhesion’s or if its always that unpleasant.

The Dr couldn’t access half of my uterus and her initial thought was an under-developed uterus. To confirm her findings she sent me for an MRI. Being this was all done under the public system it was another month or so before I got the MRI. This was a long time to sit on this bit of unconfirmed information. My fingers did a lot of googling during these months.

The MRI showed nothing out of the ordinary, I was sent back to the Gynaecologist that preformed the Hysteroscopy who decided that as nothing was amiss on the MRI my uterus was fine.

I can now understand her reasoning for getting an MRI and why nothing abnormal showed up. You see the MRI shows the shape and formation of the uterus (which she thought was the problem), what it doesn’t show is what is going on inside the uterus. I remember being so confused, my emotions were all over the show. On one hand yay I don’t have a half developed uterus, but on the other hand I have spent the last 9 – 10 months going through these motions and still have no answers. We are back at square 1 again.

This is the part that I am most angry about, not the initial D&C that I believed caused the damage. I am of course upset about that however I do understand errors occur, the suction was set too high, hey who knows maybe I have an extra soft uterus or something. Although I do struggle with the fact that the Dr who performed the D&C would have gone on to do a million more no doubt, without a 2^nd thought about me, yet that one move has caused so many tears, so much heart ache and pain and frustration, it has literally ruled the last 3 years of my life and she is none the wiser.

Regardless, my real frustrations come in here, the Gynaecologist who performed the Investigative Hysteroscopy had 3 massive flashing lights blearing at her. 1. I had explained the change in my cycle since the D&C, the sudden lack of periods, the intense pain and the lack of fertility. 2. She had my notes in front of her, so although my husband and I told her about the D&C, the suction being too high & the concern of damage it was also written in my hospital notes. 3. She couldn’t access half of my uterus when she was in there!!!! Okay so the MRI came back clear, of course it did, the outside of my uterus was fine, she should have read those 3 blearing signs and kept investigating. Before we even went to that Hysteroscopy my husband and I both felt that the way my body had changed post the D&C’s it had to be related, we explained all our concerns to the Dr. I had not even heard of Asherman’s Syndrome at this stage, if I had I would have pushed for more tests…………. but then I’m not the Dr am I. I trusted she knew what she was doing. I pleaded my case and she disagreed there was anything more to it.

So the report goes back to Dr Awesome stating that nothing untoward was discovered and there is nothing of interest. My fertility issues are flagged as unknown infertility.

We go on to do 3 rounds of Clomiphene with the Fertility Clinic. Clomiphene is a fertility drug that boosts a women’s ovulation. Your cycle is monitored by blood tests and scans. Fertility Drugs, like many drugs out there, have some interesting side effects but I will talk more about that another day.

So after all 3 clomiphene cycles failed the next step was IVF. We met with Dr Awesome and I explained my concerns, I told him how sure I was that there was more to it and that there was something wrong. He listened to us as he always has, he suggested an HSG (hysterosalpingogram). Normally as nothing was found with the Hysteroscopy the HSG would be a waste of time, but we needed more certainty. My husband and I didn’t think twice, we went private for this test, it was the best $930.00 we had spent thus far. An HSG is a radiology procedure where they inject a dye into your uterus (again through your cervix) and take pictures. It is supposed to show the dye filling the uterus and going up and out both tubes. The radiographer called it within 5 mins “you have Asherman’s Syndrome” he said. Once I had cleaned myself up and got dressed he explained it in detail to me and showed me the pictures.

The best way I can describe it is, if you have a deflated balloon the walls of the balloon rest against each other but when you blow it up the walls separate. Well imagine those two walls glued together. That was my uterus. I had an opening at the cervix so the dye could enter but down the center of my uterus in the main cavity there was no dye. The D&C had caused damage and the walls of my Uterus had fussed together while healing. The adhesions were the glue.

Normally the best method in diagnosing AS is the Hysteroscopy, had my AS have been picked up earlier we would have saved a truck load of time and of course money but more importantly we would have saved a lot of tears! I cried so much during these 1^st couple of years, the emotional strain really pushed my personal boundaries. I cut myself off from friends and family, I avoided social situations like the plague and I drank way too much wine……. okay so that wasn’t really a bad thing but you get what I’m saying, it sucked! I hated my body and I was starting to hate myself! Throw some fertility drugs into that mix and my husband will be the 1^st to tell you it isn’t pretty.

However finally we have our answer, okay so it’s a shitty answer but it’s an answer and we were stoked just to have that. I had finally proved I wasn’t crazy after all, my instincts were right and we could start moving forward.