Parents of POI – A Mother’s Experience

“My daughter went to the GP at the age of 15 following no sign of her periods starting and having Thyroid on both side of the family, We were dismissed and told to not go back until she was 16 but not straight away wait a few month this was all at the start of COVID.

February 2021 aged 16 & 4 months we had a telephone consultant with a different GP Practice who were very understanding and sent her for a full blood test to see what was happening. Following these blood test this then lead to a GP face to face appointment but at no time was POI mentioned it was talked about the possibility of PSO or endometriosis as these both also run in both families. By this time she was meant to be starting her GCSEs but unfortunately this all took a huge toll on her mental health as she was not like all her peers.. no boobs etc.

We then had to wait for 3 more rounds of blood tests to be done all the while not receiving any news numerous calls in to the GPs not getting anywhere. Eventually in April after what felt like a life time and numerous chasing GPS we got a referral to see a consultant. I took her as but by this time she was half the person she was 6 months ago she struggled to eat or sleep or concentrate on school, it was heart breaking.

We were taken to a side room on the ward for the consultant appointment this was due to the consultant pushing through her appointment. I remember sitting there with our masks on thinking oh all will be ok she will be put on something to help her body start…. how wrong was I. We sat there and her consultant started talking and asked a few questions which was answered to the best we could then I remember the Dr saying your ovaries have shrivelled up and you are I keep saying “ I am sorry are you trying to tell me that she was going through the menopause” by this time we were both in tears even though I was trying to be brave and strong but inside I was broken I felt I had let the most precious person in my life down.

Her consultant was amazing and told us about the daisy net said she was always available if we needed anything…

I don’t remember the drive home, and having to make the call to her dad who couldn’t be with us was hard as I have not started the menopause phase in my life so felt this was all wrong.

Anytime she was not in a good place I could phone Dr and we would have a call straight back by the end of the day. She has been seen by a lead consultant at Birmingham who was a little disrespectful we felt as she went on about having a boob job if the HRT never worked.

We have met with the midland branch of Daisy who have been so supportive and caring and we will continue to use them.

I can not stop feeling like I have let her down or failed her but I will not stop fighting for her to get the treatment she can. We are currently having to try and get funding for psychological help as nearly 12 months into this she has had no mental health support apart from her consultant.

I wish that there was a reason this had happened but there isn’t and I know if her brother or cousins or friends go on to have children it will be so difficult for her and us as parent to see her suffer but I know in time she will love them all with all her heart as she is a fighter and an inspiration to me and her dad who we are so proud of.

She now needs to find her next direction in life where university or work but what ever the rout she know she is not on her own.

To all parents whom are going this with their amazing, strong, courageous ladies it is you too who are amazing as you have to be strong and not let them see you crying”