My Endometriosis Journey and how having PMI changed my life

Every two weeks, I create a newsletter for ActiveQuote advisers in which i give product updates and market insights/articles relevant to their role. With March being Endometriosis Awareness Month, I wanted to highlight the condition as it is one that comes up more frequently in customer conversations.

Along with some facts and more information about the condition, I decided to share my personal story with them as a case study for really showing how much having PMI can change things. A colleague also suggested I share my story here, so here goes!

I suffered painful and heavy periods from the very first one. They were debilitating at times through my teenage years and I was put on medication to help with pain and heavy bleeding.

As with a lot of women who experience this, I was always told it was just a heavy period and put on the contraceptive pill to help my symptoms. While they did do that to an extent in my younger years, coming into my 30's things got significantly worse. The coil no longer helped my symptoms and I was sick of taking hormones constantly and felt that my body needed a break.

I was around 34 when i finally had a GP that agreed to refer me to gynaecology (NHS) after finding that I was severely anaemic due to the heavy bleeding i was experiencing. During the 4 years that followed, I had 4 laparoscopic procedures which included investigations, excision, ablation and sterilisation, all on the NHS and although they found adhesions and a bulky uterus, they never really diagnosed me with anything.

Yet my pain didn’t stop and I was still experiencing heavy bleeding.

I remember seeing the NHS consultant again 6 months after my final ablation procedure because my symptoms were worse than ever and he actually told me: ‘we’ve done all we can for you, some people just feel more pain than others’

I just remember feeling so belittled and helpless. I knew something was wrong but was made to feel like it was all in my head.

In December 2019, our company health insurance moved over to Bupa and MHD underwriting and I researched Cardiff Gynaecologists and booked in with a private consultant at Spire who specialised in Endometriosis. I had my first appointment in January 2020. My appointment in total lasted just over 2 hours.

The consultant asked me to tell him everything; from the very first period to the current day. He also did an examination and I then went for a scan in a different part of the hospital. The radiographer instantly spotted areas of my uterus that were thickened and abnormal, along with a mass inside my uterus. He sent me back with his findings and the consultant reviewed them there and then. He told me I had Adenomyosis and he also strongly suspected Endometriosis and the mass was likely to be either a fibroid or an adenomyoma. He just looked at me and said; ‘You’ve had enough haven’t you?! and you’ve really tried everything, I’ll agree with that. Would you like a hysterectomy?’

The relief was indescribable and I was incredibly emotional. I finally felt listened to and that the end was in sight.

To make sure a hysterectomy was the right way to go, the consultant started me on a medication called Zoladex. This temporarily shuts down the ovaries and the production of oestrogen, so it mimics a hysterectomy and the menopause. Due to the pandemic, I was on that medication for about 9 months but I’d never felt better!

In January 2021 I had a radical hysterectomy at the spire, removing my uterus, fallopian tubes and ovaries. I had the surgery in the morning and was home the following day. I had a private room and the nurse care was exceptional. Before my surgery, the consultant and the anaesthetist came to chat with me about the procedure and then the consultant also came back in the following day (a Sunday!) to tell me how things went. During all my procedures on the NHS, I never once spoke to the consultant immediately before or after my surgery.

When I went back for my 6 week check up and histology results I found out that my uterus was twice the size of a 'normal' uterus due to the amount of adenomyosis. I had multiple fibroids in the endometrial wall, multiple cysts in my fallopian tubes and ovaries, a large adenomyoma and several areas of endometriosis stage 2. The consultant said said ‘wow, good riddance!’ and I couldn’t have put it better myself.

The initial recovery from surgery was uneventful. However, I am now in surgically induced menopause so will take medication for many years and it's no walk in the park! But........... I’m now completely pain free!