A journey of hurt, grief and desperation to be parents. We have sat down with a very brave woman to tell her story about her journey with IVF since finding out she had cancerous cysts resulting in removing her ovary’s.
“Watching my friends go through having children so easily pains me, watching other people going through IVF and being unsuccessful pains me also. I wanted so badly to be a mother and now its been ripped away from me and I never had a choice in the matter.”
My Husband and I live with a very cute Beagle and have been married for 8 years. I am 29 and he is 30. I have a passion for helping people and I love Dogs. My Husband works in IT and enjoys motorbikes and the odd DIY job.
Journey to conceiving
When did you decide you would start to try to conceive?
Initially when I was 24 we decided I would go to the doctor and see what I needed to do healthwise to be in the best position to have a baby. I wanted to be responsible and be the healthiest I could be before we started trying. At this stage there was nothing to suggest we would have any difficulty.
What was your experience trying to conceive naturally, if you were able to try this way? How long did you try for before seeking help?
Unfortunately, we were not able to try naturally. At my doctors appointment it was suggested I go for a scan as when I was a teenager I had my appendix removed and during the procedure they saw evidence I had a cyst that had burst near my ovary (completely normal for most young women, they come and go often, you would never know you had one).
At this scan they found a 10x9x9cm complex cyst. I was referred to a Gynaecologist to investigate further.
I had my first surgery to remove the cyst and biopsy it. During the removal they had to take majority of my left ovary with it and that is when discussions of IVF egg collection were first started- it may be a possibility if we need in the future. The biopsy showed I had borderline ovarian tumours. These are a strange type of tumour that are not benign and can turn full blown cancerous at the drop of a hat. This was really disturbing and scary news for us to take.
During the tumour removal surgery they do a pelvic wash to check for any abnormalities and it showed that there were indeed more abnormalities.
I went back for a check up and more scans and blood tests. For my blood tests my cancer markers were checked and they came back elevated. When we scanned my abdomen we found more tumours had grown. This time on both left and right ovary.
I went back in for another surgery which resulted in more loss of ovary tissue.
Now was the time for emergency IVF egg collection to try to preserve fertility. I went through 2 rounds of egg collection. The first we managed to get 6 embryos through to maturity, however, my Husband has a genetic heart condition and as we were eligible for public funding for the IVF we were not able to use these 6 embryos as they had all tested positive for the heart condition.
The second round of egg collection yielded 10 embryos, however 8 had the genetic heart condition.
We were able to freeze 2 embryos for use after I was given the all clear from my Oncologist and Gynaecologist.
I ended up needing 3 further surgeries resulting in the loss of both ovaries, tubes and an organ called the omentum. I had a scar vertically down my abdomen approx. 15cm long that had 23 staples. The last surgery was in 2020 when I was 27 years old.
How and when did you discover that you would have to have an embryo transfer to be able to conceive?
This was in July 2020 when I needed to have my remaining ovary removed. I had known for most of that year that It may be an option but it did not make it any easier when time came to take my remaining ovary. I felt like a failure as I was never going to be able to conceive the way regular people do. I know that I am not a failure but in my weak times I cant help still but to feel this way.
How long was this process, was it invasive, did you feel supported? Is there any advice you would give to people who were going to undertake this procedure?
For me this process was 5 years. I was so lucky to have a wonderful family and friend support system but also a work support system. My Specialists have been amazing as well and are always happy to assist me in whatever I may need.
This process was very hard not only for myself but for my Husband too. If I was to give any advice it would be to communicate your needs and feelings. If you don’t know what you need then let your partner or family know that. There were times when I was so consumed with fear or guilt or mental anguish, I told my husband I didn’t know what I needed and I couldn’t function properly that day. He would take that as a cue to organize dinner and to call friends or family or just to bring me a blanket, put on a cute movie and come cuddle me.
This is not supposed to be an easy process and you are allowed to feel terrible at times. Just know that there are people around to support you and sometimes you need to let them know you need or want help.
How long did you have to wait after the procedure to know if you have been successful? Having found out that it hadn’t been successful, what options were you given? How did you deal with the news?
I recently had both embryo transfers and found out both were unsuccessful. As you can imagine I had a big fat ugly cry the instant I found out. Then I went through different stages of grief.
I am currently trying to assess which direction my future will go in now that the idea of kids in it has disappeared.
The wait time after the procedure is 2 weeks, you have a blood test which detects levels of HCG in your system ( this indicates if you are in the early stages of pregnancy or not). Both times no HCG was detected for me. This was really disheartening as I had a great uterine thickness at time of transfer and the grades of my embryos were also great, my hormone levels had been checked before and were all of good levels too. My specialist has no conclusive evidence as to why the embryos failed to implant.
The options going forward are very slim. I will have to use donor eggs if we want to proceed. We would want to use my Husbands sperm but due to his condition we would need to test each individual embryo for it. This comes at a great cost per embryo plus the cost of IVF in general (we no longer qualify for public funding as we used up our 2 rounds). We are currently deciding if it is a good decision to throw upwards of 30k on this with the likelihood we will come out with no embryos to use.
I am still processing this news, it physically pains me every day and I feel like I am grieving for a future that is now not possible. Watching my friends go through having children so easily pains me, watching other people going through IVF and being unsuccessful pains me also. I wanted so badly to be a mother and now its been ripped away from me and I never had a choice in the matter.
Planning for the future, have you been able to make a decision with your partner about next steps? What options are open to you? How are you feeling about continuing your journey to become parents?
We still have not made a decision about next steps. It is such an emotional and financial drain on us not to mention the physical side I have been through and will continue to go through if we proceed.
There are still some options but we need to decide if they are right for us, such as embryo donation (where both of us would not have a biological link to the child but I would still carry it), and as mentioned before the egg donation but with us needed to check every embryo for the genetic heart condition (approx. and extra $1200 per embryo on top of IVF costs).
I am now wondering if we will not be parents and maybe we should put our energy elsewhere? But I still want to be a mother and know I could provide a wonderful life to a child.
Is there any other advice you would like to give, or any other part of your experience that you would like to share?
You are not alone. No its not easy and its ok to be sad.
There are a lot of support groups out there.
I know people think they are helping when they say “just relax- it will all work out”, “We can totally see you with a child one day”, “My friend went through IVF and they had a baby once they stopped with all the IVF stuff” – don’t persecute them for this.
This stuff is not talked about enough, they don’t understand and they don’t know what to say to be supportive. If you can explain to them how you feel and what you need then it will make it easier for them and for you.
It can be really easy to get stuck inside your own head, I know I do. Try to take some time away from social media and get in some exercise or fresh air. Go and do something that will totally distract you from all those emotions momentarily. But if you need then use resources such as councillors to help you come to terms with these feelings.
I would love to say this experience has made me stronger but to be honest I think my tolerance for handling shit has become so much more. These last 5 years have been exhausting and terrifying but it has made me really enjoy the little things and not take anything for granted. My husband and I are so much closer and we know we can take anything thrown at us. We don’t want this to consume our lives because if we cant have children we will only have each other for the rest of our lives so we need to enjoy it.
If this has helped you, would you consider sharing your story to help others too? Please submit your details through this form. Whether your story is about trying to conceive, pregnancy, surrogacy, loss or parenthood, we would love to hear from you.