2018……..The year i am starting to fundraise. Fundraise for what i hear you ask??
When i got diagnosed 16 years ago with MRKH, i was offered no ongoing support emotionally or psychologically from the hospital. This has had a huge impact on my mental wellbeing over the years which has led me to be on antidepressants due to high level of anxiety,depression and grief. Grieving for something i have wanted since being young and that is a family of my own, to be called mummy and my husband to be called daddy.
After finding Facebook support groups back in November 2017 for MRKH and speaking to ladies form across the globe and locally in the North of England it seemed that there was no support available. The main source of support came from the specialist doctor and nurse from Queens Charlotte Hospital in london. So naturally when i found this information i enquired about attending the clinic, they need a variety of medical records to confirm diagnosis. On enquiring at my G.P surgery, there seems there is nothing on my records to show any past records past the last couple of years, so back to square one i decided to enquire if any hospitals in the local areas had heard of MRKH and if fundraised would they be willing to put a specialist in.
To my dismay various hospital trusts said no, even the hospital i got diagnosed at in sheffield said they had no future plans to accommodate my request. So a random tweet to Leeds Teaching Hospital trust and around a month later i have found a specialist in MRKH based at Leeds fertility clinic and we are in talks with the trust to work together to raise funds for a psychologist to sit back in on clinic appointments with patients, so all care providers can be together and the patient benefits from all angles medically, emotionally and psychologically.
What is sad is that Professor Balen said that i am not the first lady to say this about no ongoing support and that i should have been referred all those years ago and that all hospitals in the North should know by now where to refer, which has me even more determined to raise awareness and help provide support for the other ladies that need it.
I feel that i have finally found the support i have needed for the last 16 years as i am currently waiting for a referral to be made by my G.P to the clinic and also without the support and friendship of the ladies the groups i have joined who ‘get it’ i wouldn’t have found my voice and have the confidence to be on this thrill seeking adventure i am now on to fundraising.
If anybody would like to help and be involved in the fundraising, Please do get in touch via email firstname.lastname@example.org
Thanks for reading.
The childless Aunt xx