Living with Endometriosis and PCOS
There are many, many reasons why you might need to track your diet and how it affects your body. We’re always trying to bring more of those to light so that people who recognise their symptoms and struggles in another’s story might be able to get the help they need.
We met Danielle via Instagram after she purchased one of our diaries to help her manage IBS that stems from having Endometriosis and PCOS (Polycystic Ovary Syndrome). We asked her if she’d be interested in sharing her experiences with us, of growing up with these two chronic health issues, and how she manages life with them now…
“I was diagnosed with Endometriosis and Polycystic Ovarian Syndrome (PCOS) when I was 17. It felt like I was ages getting to the bottom of my problems, but realistically I’m one of the lucky ones. Most women aren’t diagnosed for an average of 8 years from when they start ‘complaining’ of Endometriosis symptoms. Endometriosis is a chronic illness where cells similar to the lining of the womb, grow outside of the womb. They form adhesions on organs, tissues and ligaments and can cause organs to stick together. It’s not really known what causes it. Symptoms include heavy periods, pelvic pain, leg pain, bowel and bladder trouble, fatigue and abdominal pain.
I was about 15 when I realised something wasn’t quite right. Periods became unbearable to the point where I was vomiting and fainting from the pain. I was sent through the public health system first as my (old) GP thought I was too young to have Endometriosis, despite having the majority of symptoms. Odd appointments here and there, a different doctor every time. One asked me if I discussed my periods with my friends (which I didn’t-I was 15 and mortified). When I said I hadn’t he asked “then how do you know yours are that bad?”. This was after I had told him about the vomiting and fainting, and wearing ‘night-time’ pads during the day to cope with the heavy bleeding. Another doctor told me I had migraines in my stomach. I was lucky that my mum was very aware of my symptoms and knew herself that there was more to what was going on than those doctors were willing to find. It was at this point that I went to a different GP and got referred to a private consultant gynaecologist.
And so it all began.
I was 17 when a doctor actually listened to my symptoms and wasn’t patronising!!! Doctor number 1 (there’s a few consultants involved in my story) gave me a laparoscopy. A laparoscopy is a type of keyhole surgery. An incision is made at your belly button, in your lower left abdomen and on the pubic line. It’s a day procedure so no major hospital stay and recovery is usually around 2-3 weeks. This doctor also gave me my diagnoses. I had endometriosis and PCOS. The endometriosis adhesions were removed and that was that. I was given some information on both conditions, but no medication or hormones to help deal with them. I asked about hormones (i.e. the pill) and was told I wouldn’t need it, that I would be fine after the surgery. I’ve since learned that this was a very unusual practice. Even now, almost 8 years later, I rely on the hormones from the pill to help manage the fluctuations in hormones caused by Endometriosis. Earlier this year, there was a referendum held in Ireland on abortion law and who did I see on a leaflet supporting the ‘no’ campaign?? Doctor number 1. This made me question whether or not her own beliefs were involved in my treatment (or lack of).
I carried on with life for the next few years but in 2016, things got worse. My pain was back with a bang. It’s not the kind of pain you can always kill with hormones. It’s like a pulling and dragging all over your pelvis. Walking is painful. Sitting is painful. Lying down is painful. Initially, I didn’t experience fatigue. However, as I got older and my life became busier, fatigue and I became well acquainted. I decided it was time to go back and see if another surgery would help. Doctor number 1 had left the hospital I had been to before so I naively made an appointment with the consultant who had replaced her (Doctor number 2). She had a copy of my notes, she knew my diagnoses. She suggested another laparoscopy and the Mirena coil. During this surgery (April 2016), more endometriosis adhesions were removed, a D&C (scraping out of the inside of the womb) was performed and the Mirena coil was inserted. I had read a lot about how the Mirena coil can control endometriosis growth and symptoms. I was looking forward to feeling better but once I recovered after the surgery, I felt worse than ever. I was bleeding almost every day and I had brutal pelvic pain. I knew I had to go back to a consultant after discussion with my GP but I really didn’t rate Doctor Number 2. My mum done a lot of research and this led us to Doctor Number 3.
I met with Doctor number 3 in January 2017. This man explained my PCOS diagnosis to me, which nobody had ever done before. I wasn’t aware that PCOS gave me a higher chance of developing diabetes and having a miscarriage. He gave me medication (Metformin) to help me control symptoms and explained how I could work towards getting rid of PCOS. He also explained that the hormones in the Mirena coil were not recommend for a woman with PCOS. This explained the excessive bleeding and lack of relief post surgery. I had the Mirena coil removed and instantly felt relief, but not near as much as I’d hoped. I had severe pelvic pain whenever my bowel or bladder was full. I was struggling to walk without pelvic pain and had to leave work early because the pain was too much. I developed high blood pressure (at the age of 23) and was sent for a heart echo to find the cause. The cardiologist put the high blood pressure down to my body’s reaction to pain and I was put on blood pressure medication. I was having my blood pressure checked by my GP one day and I broke down. I thought the pain was in my head. I didn’t understand how the pain could be so bad when I had just had surgery. My doctor and I agreed that I would try a very mild ‘mood booster’ as she put it. I hoped that by taking this medication, the pain would go away. But, it didn’t. I went back to see Doctor number 3 in August of the same year. He recommended another laparoscopy and had a cancellation for 2 weeks later. This was my most invasive surgery yet. My bowel and left ovary had become attached by endometriosis adhesions, I had other adhesions removed and another D&C. I felt amazing after this surgery and Doctor number 3 was my new hero. I was able to come off the blood pressure medication and the anti-depressants.
Earlier this year, I started to notice a correlation between bowel troubles and my cycle. At the same time every month, I had a week of constipation. I was able to map this, along with the return of pelvic pain when my bowel/bladder is full, and brought it to the attention of Doctor number 3. He ordered some blood tests and I went back a few weeks later. In the meantime, my GP ordered a colonoscopy for me to investigate the possibility of Endometriosis in my bowel. I will never forget the taste of the colon prep drink as long as I live! The colonoscopy revealed that I didn’t have endo of the bowel, I have hormone related IBS. I’ve had to change to a special gluten free, low FODMAP diet. It’s been hard and no matter how well I do sticking to it, I still have trouble at certain times of my cycle. I had another appointment with Doctor number 3. He gave me the AMAZING news that somehow, my PCOS was gone. I was elated, I couldn’t believe that I’d managed to get rid of it and all that comes with it. I was so happy that what he said next didn’t sink in until I relayed it all to my sister. I asked ‘and what about my endometriosis?’ and he replied ‘it will get better once you have a baby’. There are sooo many things wrong with that. Who said I want kids? If I do have kids, I don’t want it to be for a ‘my sister’s keeper’ reason. What if having a child doesn’t help and I end up resenting them? What if I can’t have kids? Infertility can affect up to 50% of women with Endometriosis. As a consultant gynaecologist, he would have known this. The more I thought about that simple remark, the more upset I became. I thought I had found a doctor who could really help me, but I’d preform my own surgery before I’d go back to him.
As much as I wish it didn’t, Endometriosis has an impact on my life every single day. The pain just sneaks up on you. One minute you’re fine, the next it’s like someone is twisting a knife into your ovary. I get back pain, leg pain, hip pain, pelvic pain. I have to cancel plans last minute. I’m constantly tired. I feel like I’m complaining all the time. I push myself further than I want to so I don’t feel like I’m missing out on things or letting people down. I have a hot water bottle attached to me at all times and a constant supply of nurofen plus. The worst part? I don’t look sick. I never even look pale because I’m so fair skinned anyway. You can’t see Endometriosis, it doesn’t even show up on scans. Some people can’t get past seeing it as bad period pain and others just think I’m being dramatic. I’ve developed IBS because of it and this comes with its own problems. I feel bad complaining about it because I know there are so many people who are much worse off. I’m able bodied and able to work and have a life. But, the older I get and the more I learn about my Endometriosis, I’ve learned to appreciate the fact that while others are worse off, I still have to respect my pain and symptoms. I feel lucky because my mum never let me feel sorry for myself. I didn’t want to get up one morning and she asked me if I was going to stay in bed for the rest of my life. As annoying as it was at the time, it stuck with me. That’s probably why I graduated university with an honours degree (despite many, many naps) and now have a good job and life I love. My friends and family (especially my sister) understand my limits and know when to supply hot water bottles. As much as I wish it wasn’t, Endometriosis is part of my life and I just have to find a way of dealing with it. Giving up gluten and trying to stick to low FODMAP foods has definitely helped with bloating and tummy trouble. I know when to rest and when to push myself. I now know what to ask a doctor and what not to accept. I know where to go for support and information. And I know to trust myself and not what other people think is or isn’t wrong with me.”
A huge, huge thanks to Danielle for sharing her experiences with us!
If any of this resonated with you, or you also live with PCOS and want to find out more, or connect with others who are experiencing similar issues, Danielle recommends getting in touch with the Endometriosis Society of Ireland: “they are a fantastic group of ladies. They have a website and an instagram page and attend all of the Endometriosis conferences and always post up to date information! I’ve written to them a few times for advice and they’re so quick to get back to you and very helpful. They also host pod casts and invite different consultants to speak!!”