I first had symptoms from around 15 years old but always assumed the things I
was feeling were just how everyone feels (my friendship group enver discussed
periods). I went to the doctors for an unrelated issue at 19and happened to mention
my intense pain and crazy heavy bleeding. He was the person to mention that he
didn’t think that it was normal and needed further exploration, which is a very lucky
position to be in comparedto a lot of other people I know, as their GP’s often dismiss
their symptoms as “womxns things” or IBS. Every single person has different
symptoms and this is why it is so hard to get a diagnosis.
My own personal symptoms were :
❖ bloating that made me look 6 months pregnant that was also painful and felt like there was an elastic band
around my stomach,
❖ really heavy bleeding on my period, (using 5-6 pads a day and 1 or 2 at night) bleeding other times of the month, sometimes for the whole month,
❖ intense period cramps that standard painkillers didn’t help,
❖ lower back pain and stomach/womb pain at other times of the month.
❖ Nausea all the time.
I went to the GP about a totally unrelated issue and was lucky enough for him to hear about my other symptoms and recommend I go to the Gynaecology department at my local hospital. Thus begins the middle of my journey and this story. Everything below is my own personal experience and was also experienced whilst working at least one job, studying for a bachelors degree and a Masters degree and attempting to have some quality of life.
I was referred to Gynaecology and I am fortunate enough to fall within the radius of a BSGE accredited endometriosis centre and therefore have access to specialist Endo nurses and surgeons (although there are very few). Before my first surgery in 2017 I was swapped onto multiple different contraceptive pills, told I was TOO YOUNG at 23 to have endometriosis (even though I know 18 year olds with it), had multiple internal and external scans and had a coil fitted.All treatments recommended for endo are hormone related and this has major impacts not just on your own life but family, partners and sometimes friends. I persevered with the coil for 15 months almost and after pleading multiple times to have it removed, they finally put me on the surgery wait list and agreed to remove the coil at the same time. The Mirena coil may work for some, but managing and treating endo is so specific for each person. Unfortunately it made me chronically angry, depressed and made all of my other symptoms 100 times worse. My mental health (like many on hormonal treatments) took a massive hit, especially as I went nearly a whole year bleeding every single day. When I went back to the hospital just before signing the papers for surgery I explained how important fertility was to me as I wanted to be able to plan ahead, but this illness comes with a lot of uncertainty. The uncertainty among other things definitely takes a toll on your mental state, to be constantly in pain, bloated, nauseous, sleepy. To be constantly not knowing what is wrong with you, questioning whether in fact there is anything wrong with you at all. To not know whether you can have children. The toll it takes on relationships is indescribable. I have heavily relied on my partner to cheer me up, make me hot water bottles, take me to scans, blood tests, surgeries, listen to me worry and cry. It affects my ability to have a social life (some days more than others) and affects my energy levels because I’m always exhausted. These things are hard for me, let alone for another person and the support I have had has been unwavering and so vital. This support continued when I had my first laparoscopic surgery in June 2017 and they found stage 1 and 2 endo (not deep infiltrating) as was briefly explained to me in an anaesthetic haze. This was my “official” diagnosis and therefore made finding a treatment plan easier.
However, I still wondered about how this affected my fertility and my life in general. I was then discharged from the hospital and they sent me on my way.
However, my symptoms didn’t really improve and I ended up making my way back to the GP to be re-referred. To be able to send me back to the hospital I had to undertake a 4 month diet change, to ensure that my symptoms weren’t being caused by a food intolerance (they weren’t but I did learn I can’t tolerate much onion). After all of this I was sent back to the Gynaecology department.
After being referred back to the hospital and seeing a different consultant (who was also going to be my surgeon), I was told that during my first laparoscopy they didn’t remove a large stage 3 nodule of endo from nearby my bowel and I therefore needed this removed. I was then put on the waiting list for my second surgery and we discussed a treatment plan in the meantime. The wait time for surgery was between 3 and 6 months and I ended up waiting nearly 10. During the wait, it was agreed that I would put myself into a chemically induced menopause by having a 4 weekly injection into my stomach to reduce my pain and bleeding. At 26, whilst working full time and studying part time this was a big undertaking but it definitely helped my pain levels. However, I was nauseous every single day and night, I lost my ability to remember (and a year later still struggle) and I had intense brain fog where I couldn’t think of words or even get them out of my mouth.
In September 2019 I finally had my second laparoscopic surgery after a day of bowel prep (not the best experience of my life) and they removed the large nodule and other patches of endo that had grown within the last two years.
I’m fortunate that I have my fertility, but my timeframe is shorter than others if I want to have children. Since then I spent 3 weeks in recovery., came out of the menopause, submitted my Masters thesis and have managed my symptoms with one contraceptive pill. Currently my mental health and physical health are much better, but I am under no illusion that I could very well have many more surgeries and treatments in the future. Endo is a tough illness, but it’s not the end of everything and you can live a good life with this illness. That being said, I am fortunate to not have pain daily, to not need strong painkillers, to be able to work and exercise and have freedom, unlike a lot of people.
My main advice would be:
❖ Keep visiting your GP if you feel that something is wrong If period pain is preventing you from carrying out your normal activities, please seek medical advice.
❖ Voice your worries and don't be afraid to be open and honest about just how much what you’re feeling is affecting your life.
❖ Learn what works for you in managing your illness. (For me yoga helps my lower back pain and mental state).
❖ Try your best to not feel guilty for having a chronic illness and how it impacts your life.
I hope this has shed some light on a hidden illness and can arm other people in getting diagnosis and not feeling alone in the fight! Thank you x