Shell shocked after complex atypical hyperplasia diagnosis – Liz’s story

Sorry that this story of mine is so long but so much has happened all interlinked with each other I felt it is all important and might be useful to someone else in similar circumstances. At the beginning of this year after 3 years of no periods I had a couple of small bleeds lasting at most 2 days, shortly after I had an acute chest infection requiring large doses of antibiotics.

At a follow up visit re this at my GP surgery I asked if I would be able to have the steroid injection in my thumb which had been cancelled due to the infection, but he felt that I wasn’t totally clear, I’m a bit of a joker and said “Oh typical just my luck I end up with a massive infection, can’t have my steroid injection re arthritis in my thumb and yet again I’ve come on after 3 years period free”.

Nick my gp swung around quickly facing me and asked a few questions, next I knew I have a referral for a hand Xray and told I will have to go to Wansbeck hospital to the gynae outpatients as this isn’t normal. Despite having chronic back & neck problems, arthritic knees which do need replacements, desperately trying to lose weight as I am unfortunately very overweight I am not one for having illnesses, flu and colds pass me by and if I cut myself I heal quickly so how could anything be wrong?

Within days I had my appointment, Tony my husband also in shock came with me, I had internal scan etc and was seen by consultant who did a hysteroscopy finding 2 polyps and thickening walls of my uterus, biopsies were taken to which 1 of the polyps just fell apart, I could see by their faces they were concerned.

I’m a retired nurse due to my back problems (I’m only 55) and know those sideways glances and bright chatter. I returned a little over a week later expecting the worse to be told everything was fine histology was clear, no cancer and was told I would get an appointment to remove polyp and check womb in more detail. Again a few weeks later I attend the myosure clinic to have polyp removed only to find I have 6 polyps, quite large but everything seemed fine, off I go a little uncomfortable but happy.

About 3 weeks later I receive a very upsetting letter saying I need to see a clinician re abnormalities detected in histology, I ring my husband at work in tears so he can arrange time off to take me. At the appointment following an awful weekend of worry and fear I am told I have Complex Atypical Hyperplasia and as I am post menopausal I have around a 20% chance of it developing into cancer, so considering the speed at which all this has happened I literally wanted to lie on the bed and say get it out!

After discussion with the doctor who wanted me to try the coil and/or progesterone tablets hopefully to try getting it under control before contemplating surgery; I refused, I saw no option but surgery. Everyone I know that has had the coil for whatever reason have had problems and the thought of that inside me makes me feel ill. I also didn’t want this tablet as following acute side effects of the pill after my eldest son was born I was told I shouldn’t take hormone supplements and anyway my philosophy is if it’s not working get it out.

Due to my health issues and Trust policy I needed to go to the pre-assessment clinic and was advised it would happen quickly due to being higher risk. I got my appointment and attended but I am now waiting to have my operation, which if I had been able to get my assessment done as quickly as consultant had wanted I would now be post rather than pre-op as I was contacted by the gynae secretary to make a date for my op but not having assessment has delayed this, luckily she contacted the clinic and I was fitted in to a cancelled appointment.

Following this appointment though I might have to wait longer as I now have to wait for a Critical Care bed at the new hospital opened in Cramlington due to my complex needs. I feel so helpless and frustrated I used to be so decisive but after having been not nicely treat by my former employers following my back injury my confidence was practically nil, as well as putting weight on due to lower mobility and side effects of medication this aggravated my back and finding I needed to have both knees replaced sent my mood crashing so it has been a long haul to get where I am now. I then started to get concerned as my memory has become poor, I’m quite chaotic where before I was very organised and have panicked that I am developing Alzheimers.

Anyway I was also sent for Xrays to my right hand and I had further tests which found acute carpal tunnel syndrome to both hands and require an op to replace a bone at the base of my thumb due to arthritis. I had my 1st hand op to relieve the carpal tunnel with success and next day went to see my consultant re my knees, I had an x ray to both knees, expecting to get wrong for not losing weight, I sat down, he asked how I was and I replied sore due to op the previous day, he asked why I then told him all that had gone on this year. The next thing was like a scene from “House” he picked his phone up and went onto the computer texted a friend who is a top endocrinologist requesting he see me asap if possible explaining re all my issues and went on to explain that he thought I actually had an excess growth hormone problem which would explain my weight and many of the other issues which are often interlinked, so now I am looking forward to having had 1 minor op to a further 2 minor ops on my hands, a hysterectomy, 2 replacement knee ops and god knows what else this endocrine issue may involve and I thought 2015 was going to be a good year!

But if like me you are generally a person who always sees the glass half full, I keep thinking if I hadn’t had that chest infection I would have had the steroid injection and kept making excuses re my mini bleeds until I was sitting in front of the Consultant being told I am so sorry but the news isn’t good. So after all maybe 2015 is a good year and if what my consultant for my knees is thinking is wrong with me then it explains a lot and I tell all my family and friends don’t be an ostrich with your head in the sand if you think there is something wrong write all your symptoms down, how you have been over the last few months and go see your GP it just might save your life and if like you are not one for visiting him unless you are really ill he will take notice and refer you to the right people. Luckily for me I have a wonderfully caring GP surgery and am lucky to have caring and very clever consultants and their teams.

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in my own words book cover Now available on our online store and all other online book store’s. In My Own Words: Women’s Experience of Hysterectomy is full of many other real-life stories from women the world over.