Before I start to talk more about my latest IVF cycle, I need to mention that since 2013 and 2015, I have changed clinics three times to be exact. Reasons on each clinic I will go into as separate posts. I want to demonstrate that if you aren’t happy with the way a doctor/nurse/clinic is handling your journey, you really need to voice it, and if they still don’t listen to you after so many conversations, then maybe its better to search for someone who is going to listen to you and take you seriously. Not just wave their hand at you like as if your some annoying fly and take your money.
At the first IVF clinic we did three cycles with them. Two full treatments, with the second cycle we were successful in getting three embryos, so two were fertilised and hence the ‘bit cycle’ was the frozen embryo cycle. Unfortunately one embryo didn’t make it and the other one which at Day Three was the best developed we had ever had , was transferred into my oven but sadly it didn’t take. Standard procedures are that clinics give you progesterone which is help the lining of your uterus and also to help your embryo stick.
I was given Crinone which is a cream like gel that you place internally into your vagina, some side effects are like cramping, bloating and excessive sexual hormones (it always makes me SO freaking horny!! So for the TMI!). I got all the cramping, pitching, pulling sensations in my uterus that I truly believed that the embryo was implanting as sometimes that can also be a sign of pregnancy. Unfortunately it wasn’t in my case.
After that last frozen cycle, I saw the lady specialist and asked her (demanded actually) that I have more tests get done on me, just figure out why I wasn’t falling pregnant. There had to be reasons why the embryos weren’t sticking. After many discussions with “Dr Goggle” and going on a few IVF forums, I found that there some ladies who were having a biopsy test on the lining of their uterus to check for something called NKC, also known as Natural Killer Cells.
We all have NKC in our bodies. But some people (like myself) have more than what is considered normal. NKC are immune cells in your body can reject a foetus, stopping a pregnancy from going any further.
There are a lot of doctors out there that don’t believe in NKC, that believe that its all mumbo jumbo, not scientific facts and therefore some just won’t take you seriously (as it happened to me at my second clinic that I ended up changing to, but more on that at a later post) and say that there is no evidence that immune suppressive therapies improve your chance of getting pregnant. Well, there are women who I have spoken to, who also ended up changing clinics because they weren’t taken seriously or weren’t listened to, changed from one clinic to go to another clinic that dealt with NKC and boom! after being given the NKC treatment, fell pregnant. Whether its true or not, or just ‘lucky circumstance’, the fact is, treatment was given and a successful outcome resulted. Meaning, the doctor took the patient seriously and listened to them.
Going back to the explanation of NKC, your immune system works by fighting off any invading cells that it doesn’t recognise because they don’t share your supposed genetic code. A woman’s body can ‘reject’ the foetus because her immune response is not being properly suppressed.
I remember the lady specialist trying to explain to me that “we should perhaps change the drugs and see what happens next”. I refused and said no, before any more cycles are done, I wanted a biopsy and blood test done on NKC, to see if I had that. Reluctantly she finally agreed. At the same time, I had asked if she could also write a referral to the hospital to gynaecology department so I could have done a laparoscopy done, just to see if perhaps if I also had endometriosis. This part was like pulling a tooth out, however the specialist agreed in the end.
Endometriosis is a tissue like that which lines the uterus and cause so much pain every month your period is coming and can be found on the ovaries, fallopian tubes, and some areas of the the uterus. Also areas between the vagina and rectum, the outer surface of the uterus; and the lining of the pelvic cavity. The tissue grows and when its that time of the month, responding in the same way that the tissue of the uterus lining does: tissue builds up, breaks down & sheds, hence a period is formed. When the period flows out, the tissue and blood shed from endometrial growths has no way of leaving the body, so this causes internal bleeding and inflammation, which then causes that horrendous pain a lot women around the world experience. Endometriosis can infertility, scar tissue forming, adhesions & even bowel problems.
A laparoscopy is pretty much a surgery. What they do is instead of making a large incision (or cut) for certain operations, the surgeon will make tiny incisions and insert thin instruments and a camera into an area, such as into the abdomen, to view the internal organs and repair or remove any tissue.
The biopsy was done at the IVF clinic itself, in one of their rooms. My mum came with me for support but stayed in the waiting room as she didn’t want to be in the same room watching the doctor doing the procedure (chicken). However, lets just say, I wish my mum was in there with me, because again I experienced pain like I have never experienced it before! (FYI: not every woman will have the same experience. Some may not experience any of what I did… perhaps, I’m just more of a wuss)
OH. MY. GOD!!
It was horrendous. There was no anaesthetic given. Well, I was given two pain killer for pain relief prior to the actual procedure its self (oh thank God for that). (cue in the exasperated breath)
The biopsy was pretty much like having pap smear test done. Except the doctor cuts (chops) out a few areas of your uterus lining which gives a much more detailed result. After the procedure was done, I sat up and thought ‘OK… I’ve recovered, I’m going OK now. I’m feeling alright now…’
UM, NO I’M NOT!!
What was to follow… Let me just warn you first, I was not of sound mind or body because of the pain that was shortly to follow… the pain made me do it. I started to get really queasy, fast. My body temperature shot up, hot flushes came on thick and fast. I jumped off the bed and sat on the floor, just to feel the cold floor underneath me. Then I had to take off my top. I just had to. Yep, I yanked my top off in front of my doctor and nurse. The nurse quickly brought a bucket to me as I felt I was about to throw up. The pain in my uterus was growing bigger by the second, more… and more. I was literally withering on the floor in extreme pain. Seriously, I was curled up in the foetus position, moaning in agony.
(oh the embarrassment!)
The nurse then went and grabbed a wet cloth to try cool me down. Here I thought the HSG was bad… that was nothing compared to this! Oh minha madre! (oh mother of God!) I pretty much stayed in this state for up to an hour.
I could also hear in the back ground the doctor and the nurse, whisper that they have never had anyone have this type of reaction before. Well guess what ladies, not EVERYONE is the same and you are bound to have a first! My uterus is a very sensitive little soul, OK (…bullies).
Even though I had my mum in the waiting room, and my husband was at work, I never felt more alone. In some ways, going though this and the difficulty in trying to fall pregnant, I thought this was my punishment for maybe being a naughty daughter all these years, for being a bad friend & letting down people years ago and for being, well… just for being me. All those thoughts ran inside my head. And did for a long time. I thought I’m supposed to suffer alone. I know its a whole heap of crap, but when you going through a mental, emotional and soul destroying journey, you can’t help but be the most awful person to yourself. In some sick way, it comforts you. And you know that if you do it to yourself, no one else’s words can hurt you more.
Finally, the excruciating pain went away. The nurse put me in the recovery room and went and grabbed my mum. I explained what had happened to mum, she was left speechless. Believe me, this is a woman that always has something to say and if she was lost for words, well, I pretty much shocked her.
A few weeks later passed and I got the results. I definitely had NKC and it was extremely high.
CD56 (blood) and CD57 (uterus).
For the next cycle I was to be prescribed baby aspirin (which is basically any aspirin that is 80mg to 100mg), steroids (prednisolone – to start with 10mg, three times a day) and also clexane (which is an injection to thin your blood). All these are to suppress the NKC. I have to admit, hearing that there was finally (another) some sort of answer to my issue of not being able to fall or carry a pregnancy was kind of a relief.
Next stage, was the laparoscopy which the clinic’s receptionist was to have posted to the hospital. After getting the NKC results, I rang the hospital to see if they had received the referral. The hospital checked and said there was nothing there. I rang back to the IVF clinic and said the hospital hasn’t received my referral.
I asked if they could fax it. The receptionist said of course. The next day I rang the department at the hospital to see if they received it, she checked again – no. I was now getting a little frustrated.
I rang the clinic back and she assured me that she did fax it, even gave me the exact time it was faxed. I asked again (politely) to fax it again but to another number which the hospital admin lady gave me. The receptionist agreed.
I checked by with the hospital by later that afternoon. No referral.
By this stage, I was getting upset. I rang the clinic back saying the hospital still hasn’t received it. All the receptionist said, “I did it, theres nothing more I can do.”
I rang my husband in a flood of tears. Like all amazing husbands do, mine rang up the clinic and pretty laid right into the poor receptionist. What he said to her was pretty much common sense:
Husband: “Did you ring up the hospital to check to see if they received the fax?”
Husband: “How hard is to ring and double check with them, to make if they did or didn’t receive the referral? It would probably take you no more than five minutes to follow it up. And if they didn’t receive it – double, triple check the fax number. My wife is so upset, crying and I can’t do anything to comfort her ‘cos I’m stuck at work, and you guys know who hard this journey is for couples. You deal with this everyday. How hard is it to have some compassion and go that extra bit to help out your patients.”
Receptionist: “You’re are absolutely right, I understand. I will ring the hospital and…”
Husband: “Don’t bother, my wife will come over and pick up the referral and take it directly to the hospital herself.”
Husband: “For God sakes, the hospital is only just across the road from you!”
My knight in shinning armour hanged up the phone. Thirty or so minutes later I went to the clinic, collected the referral and crossed the road to the hospital and handed in the referral. That all only took ten minutes at the maximum.
After a couple of weeks, my husband and I decided to move clinics. This last round with them was hard work and it should never be that way for anyone. No patient is not meant to do any of the admin’s work: running around, chasing up/following up with a hospital or pathology department for referrals and test results. This journey is already horrendously hard. So far, my IVF experience was not going well. I’m not saying it’s like this for everyone who’s undergoing IVF. Quite the contrary! Its just mine was pretty much shit, and added that extra stress and heartache pain THAT no one should have to go though or put up with.
I had met two lovely ladies on an IVF forum, who happened to live in the same city as me. What are chances?! And we pretty much ended up group chatting through a phone app almost on a daily basis. They are both ten years younger than me and were also starting their IVF journeys around the same time as me. We gave each other a lot of support and comfort through those darkest moments, and I knew they would know exactly how I would be feeling. I can happily say that still ’til this day, we still keep in touch. Not regularly but we do check in with each other every so often to see how the other one is doing. At the time, one of the girls mentioned how she had changed clinics and was travelling up to an hour, to a country town to see this particular specialist. She spoke so highly of him and of the clinic. And because of her, I changed to the same clinic.
We made our appointment to see the new specialist and he was everything we could have asked for!
Understanding, patient and showed compassion. Straight away he had my husband and I do more detailed blood tests and I did another internal ultrasound in his office. He then asked if I ever had done a laparoscopy. I said no and that we tried so hard with the last clinic to get that done, and explained the ordeal we experienced.
He was stunned and lost for words. Right there and then, he arranged for my laparoscopy. In a months time, I was going to have a laparoscopy procedure done. It was scheduled two days after my birthday and in another country town. But we didn’t care. We were so relieved that someone was finally listening and taking our concerns to consideration.
At the reception desk I had to fill out some extra paperwork and one of the forms was for my clinic to release my file to them. The receptionist said I would need to take this to my old clinic so they could have the actual file. Right there and then, I burst into tears and started to hyperventilate. The very thought of having to face that clinic again, tore away at every fibre of my soul. I just couldn’t face them. Not again.
The IVF nurse who was standing by the desk, straight away came to my side and comforted me. I explained what had happened at the old clinic and the nurse was horrified and said she would handle it herself and for me not to worry about it anymore. The old clinic never sent my file to the new one and the new clinic actually tried exactly four times to get my file from the old clinic …but still never received the file in the end.