The NHS Need To Take Endometriosis Seriously

Today has been a difficult day for me. It seems I am having more bad days than good now and once again I have to deal with the chronic symptoms and horrific pain this disease has inflicted upon me.
I am still relatively young but my body feels old and beyond the 47years I am.
My story probably has many similarities to you but I feel I should do my part in bringing awareness to others.

My doctor never told me

I was diagnosed incidentally in May 2019 during a hysteroscopy and sterilization surgery. Although the surgeon found my uterus and left ovary attached to the rectum and bowel wall he failed to find the time to come and see me after the surgery and to tell me his diagnosis. In fact, it was nearly a year later after spending time in hospital with chronic back, hip and pelvic pain that persuaded the doc to give me a CT scan that  incidentally showed an adnexal mass. He was an orthopaedic surgeon but a nice man and did what I would expect any Dr to do and refer me to  gynaecology.

I have been let down

Looking back on my medical records that I recently requested, it became quite obvious to me I have been let down by the medical profession and the NHS. They should have picked this up sooner.
I have a long standing history, going back 20 years of anemia, migraine, ovarian cysts, hip, pelvic and abdomen pain and severe lower back pain, sciatic pain. My symptoms had though worsened over the years but my GP had  never recognised this and had always treated each symptom individually never linking them together.

Blaming my symptoms on everything but

Each year was worse than the last and it was always blamed on the chronic back and hip pain I suffered as a result of an accident. They had sent me for an ultrasound a few times, l think to appease me but in truth nobody really cared. It was convenient for them I had had a back injury and so everything got blamed on that. The constipation I was told was due to a sedentary life style even though I was a professional dancer , I taught dance and had always led a very active lifestyle. The weight gain, I couldn’t shift was blamed on my diet even though no one actually took the time to ask me what my diet was like. I was lucky in that my fertility was not affected and although it took me some time to fall pregnant I was able to conceive.

Hitting a breaking point

As the years past. The symptoms worsened until I broke down during a visit to my Dr.  In Jan 2019. I had spent time in hospital in excruciating pain with my lower back and pelvis. This was targeted as the cause once more until I insisted my GP carry out some blood tests. She had bloods done that showed I was very anaemic. I had had heavy periods for a while and in my twenties I was told this was normal and it wasn’t unusual to have this but again my Doc had failed to look further into the cause and panned me off with iron tablets that caused a cycle of troubles worsening the constipation I already had. Unlike other types of endometriosis. My endometriosis when it was eventually diagnosed to me  was at the severest stage and had infiltrated into the vagina and the bowel wall, the rectum. I had two bilateral endometriomas and I was in a bit of a bad way but trying desperately to keep going.

Fighting with the NHS for help

I had to fight with the NHS for an urgent referral to gynaecology even though it had taken them a year to give me the diagnosis that they had  had in their possession all along. I was not offered treatment right away either, instead they sent me for 2 MRI’s that again confirmed adnexal mass both ovaries and also bowel involvement  I was referred to a colorectal surgeon who didn’t even acknowledge endometriosis as a cause of my symptoms at all and the questions I had related to this she never found the time to answer and I could never get gyn and. Colorectal consultants in the same place at the same time so neither knew what the other was doing but would use that absence of person to blame for the continued delays I was facing.

Left upset and in pain yet again

Eventually at the end of Jan this year 2021. I got a face to face appointment with the gynaecologist. I had been in and out of hospital since Oct 2020 with bowel impaction. I was hoping he would have a plan of action which he did not. He couldn’t refer me on to the specialist centre either saying he still didn’t know what the colorectal surgeons had planned for me and so again, I was left, upset and in pain to face it all again.

Don't give up hope

I haven’t given up hope that one day soon this will get sorted but you have to be adamant and keep a diary of your symptoms , the treatment and even what your Doc says. With this you can then push to be seen. I am hoping this will be the case for me on Monday when I see the gyn once more I will be sure to let you all know. Keep strong, and firm and don’t give up. Today I also started a campaign on the need for education, funding, a definitive diagnostic plan and the ability for patients like myself who have severe endometriosis to be referred immediately upon diagnosis to a specialist centre and lastly that this horrific, life altering disease is recognised as a disability and a support team is put in place.