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My journey with endometriosis has been such a whirlwind and it actually feels quite nice to sit down and write about it, as I usually tend to try and block it out until it hits me full pelt in the face once again!
Two surgeries and two babies later and I am sat here with a hot water bottle not knowing whether to target the endometriosis pain in my stomach or back. Due to breastfeeding my son for the last 6 six months, I technically should be having a break from periods and symptoms – but it seems my third period since birth is lingering and causing another flare up.
Twelve years ago, when I first went to the doctors with my symptoms, I was one of the lucky ones to receive my diagnosis within four years. On average, it takes seven years for a woman to get diagnosed with Endometriosis. At the tender age of 18 I was suffering with heavy and painful periods, stomach pain, bowel pain, back pain, pelvic pain, severe bloating, reactions to food and alcohol, acne and fatigue. The final straw for me was having to leave a gym class totally embarrassed, as a flare up left me in so much pain and discomfort I could hardly move. I remember sobbing the whole way home. I went back and forth to the doctor for a couple of years being told I had IBS and food intolerances, before one day I just demanded to be referred to gynaecology for further testing. I was so young, and my life was being impacted so much. I changed my diet and did all sorts with zero improvement, and I knew in my gut this wasn’t just IBS.
I went through a couple of years under my gynaecologist with many appointments of uncomfortable examinations and scans before the word ‘endometrioma’ first got mentioned on a scan of my ovaries. I asked the sonographer what this meant, and she told me it could be a condition called endometriosis, but I would need to speak with my specialist.
This finding led to me being booked in for my first laparoscopy. This is keyhole surgery which can be both investigative and a form of treatment. Laparoscopy is the only way in which an endometriosis diagnosis can be formally given. From the time that word first got mentioned to me up until the day I lay in that hospital bed, I didn’t so much as even Google the word endometriosis. I didn’t want to know. I was so relieved that maybe there was something wrong with me and I wasn’t going mad. But I also wondered how there could be something wrong with me.
My gynaecologist gave me a brief overview and what I took from it was the lining of my womb was growing where it shouldn’t and was sticking my organs together. It was causing inflammation and pain, impacting my periods and meant I probably wouldn’t be able to have children. Oh, and there is also no cure, and it keeps growing back once removed. The medical explanation of endometriosis is; cells similar to the ones in the lining of the womb 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 can cause inflammation, pain and the formation of scar tissue. Endometriosis can affect you from puberty to menopause, although the impact may be felt for life.
After four years of real suffering, at the age of twenty-one I went in for my surgery. I signed to say that if endometriosis was discovered, my specialist could go ahead and remove as much as he could as part of the beginning of my treatment. I woke up to a stage four endometriosis diagnosis after a long six hours of surgery. It was a success and lots of tissue was removed but unfortunately, I had lost most of one of my ovaries. There was a small amount of ovarian tissue left to aid with fertility in the future, but I was told at that time it would be very unlikely that I could now conceive naturally or at all. It is a funny old age to be told something like that. I was never a maternal person anyway and I felt like to deal with that kind of news I needed to just shut it down and decided there and then I didn’t want children. George, who I had been with for four years at that point really did want children, so we decided to park that topic and would cross that bridge when we came to it.
Recovery for me was tough. You automatically get signed off for two weeks following a laparoscopy so that is how long I thought it would take to recover. It really bought me down when I realised after two weeks I was not going to be back on my feet for a long while yet. While I only had three visible keyhole scars, my insides were in bits. I had had so much endometriosis tissue burnt away by laser including an organ! And was expected to be back up and at work after a couple of weeks. Another example of how poor endometriosis care is in this country.
I had always wanted to travel the world and when George and I met, we decided when we got into our twenties we would save up and do so, instead of settling down straight away and buying a house. I always wondered in the back of my mind if this would now be possible or not, but I was determined not to let it stop me. The year that followed my surgery was tough; A&E trips, emergency coil removal, infections, scar tissue pain and flare ups and even passing out in an airport from pain. It knocked my confidence more than I ever knew but I was given the all clear to travel with a big stash of hormone medication and we just went for it. 10 months away from home and it was the most amazing experience ever. I had one bad flare in Vietnam which saw me taking a trip to the hospital, but we carried on after a close call and I continued to rebuild my confidence with mountain treks and all sorts. It was just what I needed.
In the years that followed, I went back to my specialist as things took a turn for the worse with symptoms. During hormone medication trials, another laparoscopy and excision surgery through a global pandemic, we worked like mad to re-save our money, buy and renovate a house and I started my dream floristry business.
After surgery, recovery and many meetings with different specialists, we decided to start trying for a family at age 27. As we grew together and experienced the world, my feelings towards having a family changed and we decided it was something we wanted. My little business was thriving, and it wasn’t going to be on the cards until we were thirty, but I was told after my most recent surgery that it was now or never, and we had to try for 6 months before I would be referred for fertility treatment.
We ended up trying for a year as I just couldn’t face going through treatment at the time and it really took its toll. Every month when my period came again it was just devastating and I thought it was never going to happen. I was feeling so low, and it was impacting my life and relationships, I couldn’t even be happy for people announcing pregnancies, so we decided to opt for the treatment.
The date was booked and the week leading up I was feeling a little off, so I thought I would do a test. I was pregnant. It felt like the universe had aligned for us.
Fast forward two years and we now have our beautiful daughter Bloom, aged two, and our little son, Sage, aged six months. We started to try again when Bloom was around nine months old as we knew we wanted to grow our family, and that if we had a chance it had to be quick. After just a few months, Sage was on his way and we couldn’t believe how truly blessed we were.
Even though I exclusively breastfed Bloom for a year, my periods returned with a vengeance after just four months and brought a whole load of endometriosis symptoms with it – which of course stopped when I fell pregnant again.
Six months postpartum this time and breastfeeding again, last night was the first time I have needed my hot water bottle for pain. I have had a few periods and honestly, I really fear what’s next. I have suffered with my back since my first surgery and they discovered quite a bit of tissue around that area in my last surgery, but it wasn’t able to be removed. This would be a bigger operation and going in through the back. I know that within the next year I will need to see my specialist again and I have no clue what the future holds. I don’t want to be having surgery anymore, I have my babies who rely on me – but if I need to to be the best mum I can, then of course I will.
It seems research and treatment for endometriosis is getting taken a lot more seriously these days and I really hope this continues and a cure will be found soon. It is a devastating chronic illness and I know I am truly blessed to have the health I currently have and my family.
I don’t know what the future holds but I really hope we can continue to grow our family and one day I might have the time and energy to continue work of the book I have written on endometriosis and my experience.
Mum of two, Isabelle Iles, is a lifestyle and fashion influencer. After suffering with Endometriosis for over a decade and undergoing two major surgeries, Isabelle shares her experiences to raise awareness of the chronic illness that affects 1 in 10 women in the UK.
