- Joe Sims
Suffering with Endometriosis
Morning our lovely community,
I hope you are all surviving what seems like the start of a though winter for us all.This weeks nomination comes from our lovely member Holly, she told us about Ally and her on going struggle and her urgent need for help. Living with a disability on disability allowance I assume is more challenging at present than ever and all of this while being a single parent, I can’t imagine the stress.We want to let Ally know she has 500 people who are rooting for her and hope the operation will ease the pain from this awful and also rarely talked about disease.
Much love from all of us
Here is Holly’s nomination in full.
Dear 500 Reasons TeamI would like to nominate a lady from our local community, Ally. Ally is a single mum to three children. She has chronic, severe endometriosis, which has affected her life since it was misdiagnosed during her pregnancy with her third child. The extent of her condition was only discovered when her planned c-section quickly became an emergency: the scar tissue and adhesions were so severe that they couldn’t reach the baby. Thanks to a specialist surgical team, all ended well, and baby and mum were safe. Further information on endometriosis can be found here: What is endometriosis? | Endometriosis UK (endometriosis-uk.org)Since then, Ally's endometriosis has become completely debilitating, especially in the last few years. She has complicated adhesions and scar tissue bound around her uterus, ovaries, bladder, bowel and throughout her pelvis, all causing significant secondary problems. In addition, the pain from the adhesions has rendered Ally almost immobile – she can get around a room slowly using furniture for support but is largely incapacitated. As a consequence, she is registered disabled; leaving the house is impossible now, and limited only to medical appointments. She is no longer able to work and is reliant on disability benefits - which she finds hugely frustrating and frightening given the cost of living rises. She is no longer able to drive. Ally is now having a hysterectomy on Friday - two years delayed due to Covid - with the appointment coming through only days ago. Under the care of a new consultant at the specialist gynaecological hospital of St. Mary’s, Manchester, it is a complicated procedure and the full outcome and its effect on her other organs and mobility is uncertain.Whilst Ally is relieved her operation is finally going ahead, it has been an incredibly challenging few months. Her landlord decided to sell their house she was renting, so she had to look for a new place to rent with her 3 children. She has managed to find a house with a bedroom downstairs and moved in just a couple of weeks ago. It’s still not ideal – at the moment she can access the downstairs toilet herself, but her elderly father has to help to get her upstairs and have a shower each day as she cannot manage this alone until she has rails and mobility aids which have not yet been fitted. To make things more complicated, external suppliers have been unable to secure a permanent Wi-Fi connection at home. Anyone who has experienced children of school age will appreciate the ongoing angst that this is causing, not least as it is limiting their ability to access schoolwork. Her broadband provider has now said that Openreach have reported an infrastructure problem that is still “under investigation,” and the wheels are turning very VERY slowly. Until then, the family are having to buy and top up a mobile wi-fi hotspot. Anyway, all this is to illustrate that Ally has way more on her plate than seems fair at the moment. She is obviously also concerned about her health and ability to cope post-op, as well as the children’s well-being during her time in hospital.I just know that some extra money from 500 Reasons would go such a long way in Ally and the children’s lives, just to get them over these next couple of months with money being one less thing to stress about. Disability allowances don’t go far, especially right now. I’d like to think it would mean that the unknown of her first bills in her new home as winter draws in aren’t quite as much to worry about, and that she can top up data on the wi-fi hotspot for the kids, stock the freezer with easy family food that the children can prepare, the odd taxi journey for the children to enable them to visit Mum in hospital, or even pay for a bit of help around the house for a few weeks whilst Ally recouperates and gets herself back on her feet.She is so excited at the sheer hope of being able to get her life back on track after this surgery. I just know that anything at all to oil the wheels for a month or two would mean a huge amount for them. I would be hugely grateful if you could consider this nomination. Many thanks,Holly