5 Women Share Their Experience With Endometriosis
Charlotte Dormon, 42
It took me five years to get a diagnosis. My symptoms started when I was 26. I was bloated daily, and experienced lots of flu-like feelings, headaches, painful sex, kidney pain, bladder infections, and general digestive discomfort. The pain always got worse around my period, and the worst was the constant gut pain. I lost count of the number of times I went to see my GP – they either told me it was IBS, PCOS, or just in my head. I was in and out of hospital appointments and was given various medications to try and deal with the problem – from antidepressants to painkillers – but nothing worked.
Eventually I was advised to get a private scan. They discovered adhesions around my ovaries and bowel, and I was told to take this information to my GP and ask to have laparoscopy surgery with a gynaecology expert. After the surgery, they found endo tissues around my uterus, bladder, ovaries, bowel and kidneys.
A diagnosis didn’t make things easier. The doctors offered me pain medication and told me getting pregnant would help, but a baby just wasn’t on the agenda for me at the time. I was also advised to use a coil with progesterone – but it didn’t suit me at all. It was then that I put effort into researching more holistic treatments.
There’s more to treatment than medication. At the time, my job was very demanding, and I was working crazy hours. I made a concerted effort to reduce my stress levels, leaving work on time and booking in for yoga and Pilates. I went out of my way to make sure I ate healthy food at work and spent hours reading about natural solutions for endometriosis. CBD oil is fantastic and a great way to reduce inflammation – I take it daily and increase the dose when I am ovulating or before my period. Not all brands were created equal, but i-cann 1,500mg CBD Oil does make a difference. I also take Pukka or Link Nutrition turmeric capsules daily as well as omega-3 fish oils to reduce the pain; milk thistle to detoxify the oestrogen from my body; and ashwagandha to reduce my cortisol levels (a big factor in period pain). I also went to see a pelvic physiotherapist to reduce my scar tissue, which has been incredibly helpful.
Knowledge is power. To this day, I still read countless articles and books about endometriosis. Prioritising your health really is essential. Beating Endo by Dr Iris Kerin Orbuch and Dr Amy Stein is the best book I have come across on the topic – it’s a wealth of information.
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Stef Williams, 29
The pain started when I was 21. My symptoms became increasingly debilitating, including crippling stomach pain, pain during sex, and fatigue. I also experienced unexplained weight gain, bad skin, disrupted sleep and severe depression.
Initial GP appointments left me feeling hopeless. The doctor was so dismissive – she made me feel embarrassed and like it was all my fault. She asked a lot of questions about my sexual history and the judgemental tone of her questioning made light of a situation that had nothing to do with my personal life. The next time I went to the GP was six months later as the pain was getting continuously worse. I brought my mum with me and fortunately ended up getting a referral to a specialist.
A gynaecologist finally diagnosed me with endometriosis. I wanted a second opinion, so I did lots of research to find another specialist, as well as seeing a bowel doctor due to the additional symptoms I was experiencing. After seeing several other doctors, they all agreed it was endometriosis. However, I was told it’s not possible to 100% diagnose it without keyhole surgery. A year later, I underwent laparoscopic surgery to remove the endometrial tissue outside my uterus. They also inserted the Mirena coil, which can be used to treat the condition.
It's important to listen to your body. When you go through something that impacts your life as much as this, you have no option but to take it seriously. Long walks, Pilates and shorter fitness sessions helped me get through. Balance has been key – eating wholesome foods has been beneficial and, looking back, I used to lean towards sugary and fatty foods when I felt tired and in pain, which probably made my symptoms worse.
Seek advice and support where possible. There are so many other women going through a similar experience to you. It’s also important to stay strong minded about your health – you know your body best and don’t let anyone undermine your pain, not even a doctor.
Keira Rumble, 31
An ectopic pregnancy triggered my endometriosis. I experienced an ectopic pregnancy in January 2019 and a few months after emergency surgery, I began to experience extreme bloating, debilitating pain and a sharp pain on one side of my body. Due to Covid, my laparoscopy surgery was postponed for several months. When it did happen, the specialist found my body was riddled with endometriosis, covering my ovaries, pelvic wall, uterus, bladder, bowl and ligaments. I know it can take years for women to receive a diagnosis, so I was extremely lucky.
I spent months on heavy painkillers. I had a lot of brain-fog and the lower back pain and bloating was debilitating. I had a heat pack attached to me constantly, which helped alleviate some of the pain, but I was left with burn marks across my stomach. The pain was indescribable.
After my surgery, I made the decision to undergo IVF. Fortunately, we fell pregnant quite quickly and I am now seven months post-partum, although the pain has now returned. I am looking to undergo further surgery prior to doing another round of IVF. I also regularly see a women’s physio, have acupuncture and eat an anti-inflammatory diet to avoid flare-ups. I also take high-dose fish oil and magnesium, which helps to control my symptoms.
Period pain and severe bloating is not normal. If your GP dismisses you, it may be time to find someone that can help you get to the root cause of your pain and discomfort. I also sympathise if you have endometriosis and are struggling to get pregnant – the extreme bloating can be seriously challenging and like a blow to the face, especially when you look pregnant, but aren’t.
Amie Mechen, 34
My journey started when I was 19. I’d always had debilitating periods from the moment they started at 15 and had already had laparoscopy surgery twice for ruptured ovarian cysts by 18. I was also diagnosed with polycystic ovaries and was told then that my chances of having children naturally were slim. When I was 19, the pain got significantly worse – I even collapsed at work a couple of times as a result. I ended up in A&E several times and had scans, but sadly endometriosis doesn’t show up on scans – it can only be diagnosed during surgery.
The combined pill provided some relief. After years of pain, I was put on a combined pill, which masked some of the symptoms, but that wasn’t a long-term option as a baby was my goal. I was finally diagnosed with endometriosis at the age of 26 after my fifth miscarriage. After months of investigations, it was concluded to be the probable cause of my recurrent miscarriages. I then had surgery to remove the endometriosis from my womb lining just before trying again – I feel extremely lucky to have two children now. Pregnancy was also the only time I had a break from endometriosis.
When it comes to treatment, I’ve tried everything – the pill, Mirena coil and norethisterone, which is a type of progesterone that can stop periods to help you better manage symptoms. The side effects were horrible, but it worked, and I’ve had a better quality of life since using norethisterone. I recently had a follow-up scan and MRI, which have shown the endometriosis is now under control.
Cutting out sugar has been life changing. It was hard – I love chocolate – but sugar is a significant inflammation trigger. I’ve also been trying a low-FODMAP diet and have cut out dairy, bread and alcohol. It hasn’t been easy, but the results have been amazing. I’ve also found moving my body every day and managing stress has had a real impact. Flotation therapy and infrared saunas are also a great way to relieve aches and pains.
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Jo Gifford, 44
I’ve been living with endometriosis for 25 years. I first went to see my GP back in 1996 when I started experiencing excruciating abdominal pain, pain during sex, crippling fatigue and pain throughout my cycle. My GP ran a raft of tests, checking everything from my gallbladder to lymph nodes, but they ultimately sent me away saying there was nothing they could do. It was labelled ‘women’s problems’.
A diagnosis came eight years later. After a great deal of struggle and several instances of arriving in A&E in severe pain, getting a diagnosis helped me feel seen and understood. To know everything wasn’t just in my head helped me mentally, and I could start to become a more empowered patient.
Being pregnant when you have endometriosis is both a joy and a challenge. I fell pregnant with twins after having an operation to remove the latest regrowth of endometriosis. I still feel unbelievably lucky to have been able to carry them and become a mum, which I know hasn’t been the case for a lot of women living with endometriosis. A twin pregnancy with the condition was a challenge, though. The scar tissue from the adhesions and multiple laparoscopies were painful as my womb grew and my body changed to accommodate the twins. My energy levels were already compromised, so carrying babies – which is already a drain on our reserves – was exhausting.
Reducing inflammation can help. There’s so much more awareness around the symptoms of the disease now, and being aware of what the symptoms are helps in finding the right support. I wish I had known the impact of alcohol and certain foods, which can increase inflammation and exacerbate symptoms. Eliminating wheat and dairy has helped, and I’ve been a huge advocate for cold water swimming in recent years – it really helps boost my overall wellbeing.
Ultimately, it's about finding acceptance. Since my diagnosis, I’ve had seven laparoscopies with excision, and have been managing the pain through mindfulness, exercise and nutrition, as well as reaching a place of understanding with my body and letting the pain be when I need to rest. For now, I’ve chose not to have a hysterectomy due to other complications that might arise, but I’m now nearer to menopause and finding my own way to thrive.
Visit JoGifford.co and listen to her podcast here.
For more information on endometriosis, visit the NHS. You can also get support from Endometriosis UK, the country’s leading endometriosis charity.
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