my experience with endo

[Hc1992]

I’m 30 female and was diagnosed with endometriosis in early January 2023.

Prior to that I had two admissions through A&E where I had a severe infection with abscess around my ovaries and fallopian tubes. I had an emergency surgery in the second admission as my previous infection had collected in the middle of my abdomen and I had a laparoscopy to clean out the infection. It was then that I was diagnosed with suspected endometriosis as a massive cyst (6cm in Nov 2022) was noted on my left ovary. However, this was only confirmed when I did a proper ultrasound to identify endo 2 months later.

I have to say that I’m glad I initiated the endometriosis diagnosis through private healthcare earlier rather than later as the NHS had an extremely passive approach and suggested multiple rescans months apart to check if the endo was growing. If you know how endo works, you’ll know that it grows with every period. As you can imagine, the anxiety grew as I waited for each scan with the thought that my body was a ticking time bomb that could go off anytime, and waiting and meditating could not solve the anxiety from the illness. The surgeon that confirmed my diagnosis was from my home country found endometriosis on my left ovary, right ovary, pouch of Douglas, rectovaginal and rectum. They told me that I should get surgery soon (within 1-2 months), but I did not have insurance back home so I had to find a surgeon back in the UK. My symptoms were not severe, just occasional aches where the cyst grew. The pain was bearable but I was worried that my condition would worsen. Fortunately, I was prescribed Visanne/Dienogest which would manage the symptoms of endometriosis in the mean term.

The events above kickstarted my journey to find proper treatment for my condition in the UK. I googled up all the top endometriosis surgeons in London and called them up one by one to get appointments. I knew I wanted someone who could confirm my diagnosis in the UK and perform the surgery to eliminate all the traces of endometriosis tissues in my body. However, most of the top doctors had a long waiting list up till May. Fortunately, I found a surgeon that had availability, good reviews online and was very confident about being able to operate on me. He was reassuring about how this condition has probably existed years ago and how the prior infections had sped up the diagnosis, which could be seen in a positive light. At that point, I was constantly scared and anxious about being in hospital again or being infertile and never being able to have biological children. On top of that I was wracked with guilt that I might not have done enough to take care of myself (personal hygiene, practicing safe sex etc). So having the doctor reassure me that I had done my best was a relief. Fortunately, I’m booked for a surgery end of the month (April 2023).

It has been a challenging year health wise as I also work in a high stress environment and went on a mental health break for two months prior to hospitalisation. Further, the hospitalisations had also meant I was in and out of work constantly and I found it difficult to manage work commitments and health appointments. Whilst work allows the flexibility but the expectation still felt the same as I could still walk and speak like a regular human being. Little did I know my mental health was deteriorating as I could not focus at work which has lead to a downgrade in work quality and performance. I was constantly foggy and struggled to understand work tasks. This took a significant hit to my confidence as I found that I could not deliver work to what was expected. And I found myself lacking the drive and motivation to go to work.

I struggled with perceived weakness as I could not cope with the new symptoms of my condition as well as work on finding my motivation at work and working on development areas at work. Everything felt personal and everything felt like an uphill battle. My colleagues and managers did not understand the irrationality of my decisions at work and this made me feel under supported and isolated from people at work. This was extremely difficult and I found myself to be easily triggered at work and easily paralysed by stress. I was extremely hard on myself thinking why couldn’t I cope with this as I knew I wasn’t the only one going through this. However, nobody talks about this.

No one talks about the mental stress one goes through when dealing with a stressful work environment as well as coping with a life altering diagnosis. I know it’s not fatal but it does change your quality of life and definitely your outlook on life in terms of personal goals, relationships and career. These are big things that change your mindset driving the decisions in your life.

I’m sharing this story of mine as I think nobody talks about the mental and emotional impacts of this disease and how it interacts with other stresses in life. I don’t have all the answers yet, but I hope talking about it here helps validate that these challenges are real. I’ve definitely realised health is wealth and there isn’t a point in chasing that paper trail if you don’t feel healthy enough to enjoy life.

Whilst it isn’t in my nature to prioritise mental health in the past, I’ve definitely made more conscious decisions to prioritise my health this year. Even if it is just things like eating well, drinking less, doing small workouts and reaching out for help when needed. Sure I get knocked out of balance sometimes but I know I’m trying my best and that’s the best thing I can do for myself now.

Happy to talk to people with similar experiences or who just want to rant about how they feel! I know it can be difficult talking to friends and family and colleagues who seem to show pity when you tell them your story and jump straight into offering advice but knowing that they just simple can’t relate to what you’re going through. Sometimes, I don’t need advice. I just need someone to sit in the mud with and to have a moan. 😂

[Lindle]

Unfortunately the NHS is so underfunded that treatment of endo is way behind what it should be. But general lack of knowledge of endo is a worldwide problem and we do have experts here. It is a case of finding them - there certainly needs to me a much more 'joined up' system from GPs upwards. We do have a few private endo centres here and fortunately you seem to have located one. On a side note endo doesn't grow with every period - there seems to be a preoccupation with a link between endo and periods, including on the website of endo uk, and it seems this is holding up progress in understanding the disease (in so far as we understand it at all) and the effect this then goes on to have on treatment options with it regularly being said that stopping periods will stop endo growing.

[Hc1992 in reply to Lindle]

interesting point about the links between periods and endo growing/worsening. Which website were you referring to? Was it endo UK?

[Lindle in reply to Hc1992]

Yes it's on endo UK as:

'Endometriosis is the name given to the condition where cells similar to the ones in the lining of the womb (uterus) are found elsewhere in the body. Each month these cells react in the same way to those in the womb, building up and then breaking down and bleeding. Unlike the cells in the womb that leave the body as a period, this blood has no way to escape.'

This then gets reproduced in press articles and on other sites. It's hard to know where it first originated but this notion that endo is effectively a period in the pelvis only lasting for 1 month and just being an adhesive condition fails to address the complexity of what we know can be a devastating progressive disease. It's hard to know how this is allowed to persist. It would be like some organisation deciding to redefine cancer as a condition that can't kill and reproducing it across all public material without anyone ever addressing it.

[Endolemon]

I have been suffer all my life with severe periods and anemia but was thinking it is normal. When my perimenopause started at 38 then life started moving to hell. Horrible bawel pain , fatigue, enlarged bloated belly ,depression. My marriage was broken. Now I am 46, finally diagnosed with Endo and waiting for an operation. I am happy that I got diagnosis cos it explains everything . I can say this condition is affecting your mental health a lot. And affecting your ability to work, to socialise, to have relationships, to live...

And when people tell me "just think positive" I keep myself quite 😅😅

[Hc1992 in reply to Endolemon]

I’m sorry to hear it was undiagnosed for so long. But glad to hear you’re lined up for treatment!

it definitely impacts your mental state. It’s difficult when people around you seem to constantly encourage you to look on the bright side like it’s easy but they don’t go through what you go through everyday. We can’t expect them to empathise when they don’t know what it feels like to go through the symptoms. It is the pain and the constant feeling that you’re not well enough and not wanting to feel like a burden or a debbie downer around people. that keeps you from enjoying life and feeling the connection you need to keep your spirits up.

But I know my friends and family are trying their best and they actually care so I know I’m not totally alone.

Good luck with your op! Let me know how it goes!