Hello there, I hope whoever is seeing this is well.
I started to experience pain, bloating and pelvic stiffness mind month around 10 years ago. When i approached medical professionals, I was fobbed off and advised that middle month pain can be annoying, I just need to get on with things. I was fitted with a copper coil and this made the symptoms much worse, and bleeding was terrible each month.
The started to affect me for longer periods of time and i started to experience pain and spotting after intercourse. I was referred to the Gynaecology team at my local hospital. They suggested that I be fitted with a Merina coil. When this did not alleviate symptoms, I was transferred over to the Endometriosis team and here I was advised that I was too overweight for a laparoscopy (I was around 19 stones). I would see the team every 4-6 months for an update, but keep being told that despite me losing some weight (I tried Slimming World, Keto and calorie counting) they did not want to risk laparoscopy.
Out of frustration, I took out a loan and went to Latvia for a Gastric Bypass in 2021. (very reckless i know, but i was desperate for answers and could not see an alternative). About 6 months later, I had a Laparoscopy (I worked in the hospital at this time and has been given recommendations for a certain surgeon. I received a call the day before surgery to advise that there had been some changes to the theatre lists and a different surgeon will be doing the exploration surgery. I had the opportunity to go back on the wait list but i wanted to get it over. I regret this now).
I was literally in theatre for around 25 mins. They fitted a new coil and eblated some cervical erosion during this time also. They claimed there was no endometriosis. I was very disappointed, this was my chance to get things sorted.
I would see a clinical fellow every few months; I would be in tears (out of frustration) at appointments and due to this, I was made to look hysterical. I was advised that I need psycho-sexual therapy as I am obviously feeling negative about my vaginal area and this is what is causing the pain. The next time I saw her, she made a therapy referral and suggested that i look into Fibromyalgia with my GP. I refused to see this woman alone from this point.
My GP performed an examination and noticed some raw areas on my cervix that caused concern. They wrote to the hospital to ask that this is examined. My husband came with me to this appointment, which happened to be with the same 'professional'. The clinical fellow flat out denied suggesting fibro to me previously. The examination was rushed, I was made to feel embarrassed and ridiculous; she advised that there is absolutely nothing wrong with the area and the GP was wrong to make a fuss.
I looked into private consultations and I could not afford what was being quoted. I paid for a private MRI, and a colleague at work gave me the details of the Gynae Radiographer, who was ever so kind to have a look over the MRI for me. She noted that there was most definitely endometrial scarring, ovarian scarring and Adenomyosis within the womb. I took this to the Gynae team and I was told that I would be discussed on their Endometriosis MDT. I heard nothing for months.
In the meantime, I was taking CoCodamol 30/500 daily as well as Oramorph when the pain got too much for me.
We lived in South East London at the time and the area was becoming increasingly unsafe for our children so we made the decision to move to Norfolk in July 2023.
My last appointment with the clinical fellow went the same as every other; there was nothing they can do for me and if I was adamant I wanted some form of treatment, they could offer a Hysterectomy. I asked about the MRI I sent over for evaluation; she hesitated and said it was discussed at their MDT and they decided to offer the hysterectomy. I asked when this MDT took place, It was months prior. I asked why I was not informed of this before now, she basically said it was not urgent information.
My care transferred over to a GP surgery in Norfolk who referred me to our local Gynae team. I was finally seen in October 2024. They ordered an up to date MRI.
In the meantime, I have been trying to get to grips with a new full time job, whilst living in pain daily. My bowels are affected, my pelvis is stiffening, my abdomen has ballooned and flare ups leave me bed bound and needing to take time off work, which has left me with issues.
I take Oramorph every single day and have become quite reliant on it unfortunately. By the time I am home, I am exhausted and fall asleep. This makes me feel so guilty and a burden on my husband and 3 children; we can no longer have days out without me being in pain and needing to rest.
I received an urgent letter to advise that the local Gynae team have referred me to the Endometriosis specialists in Norfolk and Norwich as unfortunately, the MRI shows deep, infiltrating Endometriosis and burdening Adenomyosis. I believe that this is a stage 5? Regardless, it will take around 40 weeks for me to see a specialist in Norfolk, even with a letter from the GP asking for this to be an emergency referral. I have found out that I also have Osteoarthritis of the Pubic Symphasis and a disc protrusion in the low spine.
I am so frustrated with how my journey has been so far; I have been made to feel like a hypochondriac and like an Opioid abuser. I have lengthy waits to see the Spinal Pain team and Physiotherapy as well. In the meantime, i'm just existing. I'm not sure how people are expected to keep living, providing for their family and keep a healthy mental state when it takes upwards of 10 YEARS for a medical professional to listen, sympathise and be proactive when it comes to women's health. I'm 36 years old and i'm honestly not sure what the future holds for me now. I cannot wash my hair by myself anymore and getting out of bed in the mornings is excruciating. I am currently signed off work, and this is additional stress because they're not happy.
Please do not take no for an answer and make sure that you are taken seriously if there is a health issue that is causing you issues in your day to day life. I have learned this the hard way.
Can't get a surgeon to take the risk of treating me!!
Specialist
Feeling SO let down 
Fed up and tired
Has anyone here discovered they have endometriosis/and or adenomyosis at a later stage in life? Just found out at 50!
