Living With Endo

In this incredible interview, Lucy honestly speaks about her whirlwind journey with Endo: the pain, the fears, the frustration, the heartache and coming to terms with living with the condition.

1. What exactly is endometriosis and when did you first find out about it?

Endometriosis is tissue similar to lining of the womb growing in other places, it can grow on the fallopian tubes or the ovaries and in some extreme cases has grown into other parts of the body. It is considered to be a long-term condition which can affect girls/woman of any age and symptoms can vary between each individual. However, common symptoms are severe period pains and pain across the stomach and back. In my case, I had the above symptoms but also pain in my legs and knees, irregular heavy periods, extreme fatigue and awful period pains to the point where I had to have regular pain killers, hot water bottles, heat pads and often forced myself to sleep. There is currently no cure for endometriosis.

I started my periods when I was around 14/15 and to begin with, they were manageable. I had period symptoms which I believed were ‘normal’ for my age and thought not much of it. Around 2-3 months in I started having irregular periods, with having 2 period cycles a month. So effectively, I would have a weeks break in between and then be bleeding again. They were extremely, extremely painful, I would roll around on the floor crying, more so because the pain was relentless it would not go away, particularly painful in my knees which I always thought was odd. At the time, I was using pads and I just remember the bleeding being so heavy and having to regularly change my pad, it was honestly non-stop from the heavy bleeding to the severe pains. At first, I dismissed it as my hormones and my period cycle settling in, but months and months went by and there was no change.

I think I had just turned 15 when I decided to visit the doctors with my mum. It was in that first appointment ‘endometriosis’ was mentioned as a potential reason for my irregular, painful periods. In that appointment I had also learnt my mum had also suffered with endometriosis; (however, it is key I mention, endometriosis is not necessarily inherited from a family member. There is still no clear cause on what causes endometriosis). Although the doctor had mentioned endometriosis she ruled it out due to my age and instead said being young and my hormones all over the place was probably the reason behind my period pains and therefore, suggested I went onto a pill instead. So it was agreed I went onto the pill and I left. However, when I went home, I began my own research on endometriosis as It was something completely new to me, and that is when my battle for diagnosis began.

2. What obstacles and barriers did you have to overcome? For nearly 8 years I protested in being screened or even investigated for endometriosis. I was constantly told it was probably due to my hormones or the type of pill I was taken, I would mention endometriosis, but it was dismissed, and it was purely because of my age. I saw multiple different doctors who each recommended me to try various different pills, the Implant which all were unsuccessful for me, yes they worked as an effective contraceptive but they did not ease the pains, the irregularity of my cycle became worse, at one point my periods were lasting for 7 weeks. At some stage, I was on two different pills at the same time, or even when I had the implant in, I was also taking a pill, it was relentless. The tole it took on my body, my hormones, my skin, my mood swings, I was all over the place and absolutely exhausted. The other major issue was having irregular periods, I would never know when I was due on, it would just happen, there had been multiple occasions where I had been at school or at work and I would just start bleeding.

During those 8 years, I think the biggest problem was, I now did not know if this was due to all the pills I had been taken or was it my own body. It became a really difficult time for me. One thing that did not change was the pain and the amount of blood, nothing, no pill or implant could help ease those symptoms. I remember very clearly the day I had enough, I had just put a pad on and was sat at my computer doing some work. In less than an hour, I had to change my pad due to how much I had bled, and I remember my mum saying to me, when she was younger, she would have to change her pads every hour. I had also been keeping a diary, tracking my periods, how they were etc. I was now 22 I believe, and I took it to the doctors and demanded I was investigated for endometriosis, I had my diary as evidence, my medical history with all the different pills etc and said I had enough, this was affecting my life and something needed to be done. Finally, after 8 years, I was investigated, I had internal, external scans and a laparoscopy where I was finally diagnosed with endometriosis. Interestingly, the gynaecologist who I had an appointment with before my surgery, listened to my story about my history with my periods and turned around and said you have endometriosis. I remember walking away from the appointment and sobbing, not because I had endometriosis but finally after all those years, I was right and now something could be done about it.

3. Who did you have to turn to about this?

I would have to give my mum huge recognition for supporting me throughout that difficult time. She was able to relate with me as she was a sufferer herself. The amount of hot water bottles she must have made me, constantly paying for period products as I went through them like crazy and just being that shoulder to cry on. She came with me to most doctors’ appointments; she was a huge help throughout it all. Additionally, my partner was incredible. He saw me at my worst with my periods and would never shy away from helping. Towards the diagnosis stage he attended the appointments with me and was with me the day I had the procedure. He has always been understanding and supportive. I also turned to close friends at work, who also suffered with endometriosis and we shared our own journeys. This really helped me to relate and take my symptoms seriously and made me continue to protest in being seen.

4. How has Endometriosis impacted your life? / What is the hardest part about living with endo? I am now more acceptive of Endo now I have been diagnosed with it. At the beginning, I was constantly thinking and worrying about why my periods were the way they were and how I was going to cope with it. Since being diagnosed, I can understand my own body better and how to look after it. After the surgery, I still take a pill and suffer with irregular periods and heavy bleeding but the pain is less and more bearable, I also take prescribed painkillers to help reduce my pain and blood. Mentally, I am must stronger and I owe to the fact after all those years of protesting and fighting to be investigated, I was right and now I can take control on what happens next. I can decide what happens to my body, no longer taking recommended pills or implants which in fact did not help all, they just distracted away from the real problem. I have this condition and now I have to live with it.

I would be lying if I said all my worries have gone, as mentioned above, endometriosis does not go away, not even after treatment and for some individuals it can cause fertility problems, something my mum struggled with and resulted in me being an IVF baby. Therefore, it is something which crosses my mind frequently, but I am lucky as my partner and I have discussed openly about having children in the next couple of years to help reduce endometriosis causing fertility problems for us. The fact there is no cure yet on getting rid of this condition can sometimes impact me, but I just think I have to look after my body and make choices which can support my journey with endo rather than challenge it. It is what it is.

5. Are there any support groups?

Browsing through Instagram you can often find support pages and groups for endo. I also signed up to a website based on endo where I receive weekly newsletters or columns from people sharing their stories with endo. Helps to show you are not alone with this journey.

6. What advice would I give? If you believe you may have endo or any concerns with your periods or symptoms please do not give up and go and see your doctors, no matter what age you are, do it! You know your body best and if you think something may not be right or is impacting your life, then take control and tell someone. It takes only one person to listen to you and for you to be heard. Do not suffer in silence, reach out to endo communities, reach out to those you think can help you. One thing I learnt from my journey is to not give up. I only hope now, I can help other suffers speak out, it is important. From my experience, getting investigated and diagnosed with endometriosis is a much more challenging journey than suffering with it, take control and be heard.

Remember you can check out Lucy's print piece over on our instagram www.instagram.com/wyld_n_womanli . Lucys print will be available to purchase on Monday 15th March @ 6pm on our Etsy Store www.etsy.com/uk/shop/WyldnWomanli