Endometriosis awareness month - featured stories and advice from the 1 in 10
At Hug, we feel a special connection with the Endo community, people write to us with their (sometimes shocking) stories of pain, pills, and dismissal. We are so glad that Hug heatpacks have helped Endo sufferers, but we felt that some of these stories need to be public to help raise awareness and share advice from others who have 'been there' to those who might be in the earlier stages of their journey with Endometriosis.
We asked the community to share their stories, advice on getting a diagnosis, dealing with the demands of life with endo, and pain management tips.
We've compiled some of the most helpful and poignant comments from the generous contributions of the 1 in 10 who shared stories, advice and encouragement from life with Endo.
What has your journey with Endometriosis been like?
Laura "When I was first diagnosed, I cried my eyes out. I was so relieved to know it wasn't normal, to be validated. But I was also diagnosed at an advanced stage and my tubes were pretty much useless so that was tough... I wish in that moment I had someone to tell me that I was gonna be ok because here I am 4 years later, I made peace with my body, with the disease and even though there are rough days where the pain is just too much, I'm so grateful to be mostly healthy and to have built a good life for myself. I want to share a positive story and tell the girls that they're gonna be ok. You will survive this."
Jessica "My life with endo has been a rollercoaster. There have been times where I wanted to end my life just so I wouldn't have to cope with the pain anymore. I've struggled with infertility for the past 8 years and it has had such an impact on my physical and mental health. It's also ruined my dream of being a professional dancer, I trained for 7 years at a professional dance school and graduated with a double distinction in my diploma. I wanted to travel the world and dance professionally but my body had other plans. Then I met my partner and we wanted to start a family. I've had two rounds of ivf which were awful, one failed and one ended in an early miscarriage which was heartbreaking. We've since been trying naturally but there is a very slim chance that I'll fall pregnant sadly. It has definitely been one hell of a journey but I am the strong person I am today because of it. I've met some amazing women on my journey and it's been so amazing being able to connect with people who have been through the same as me or are going through the same. It really has saved me."
Sarah “It took me 12 exhausting years to receive a diagnosis, eventually I did have to go private and fund the surgery myself otherwise I still would not have a diagnosis.”
Miranda “The implications it's had on my fertility has been the biggest hurdle. I can't help but wonder how less the damage might have been, had I been diagnosed sooner... You know your body better than anyone - please persevere! If you feel like something is wrong, it probably is. My partner and I are actually starting IVF and documenting the whole process so if you want to follow that journey you can find me on youtube/instagram! (@miranda.burns) I'm really hoping I might help someone struggling with difficulty conceiving to feel less alone.”
Jade "My experience of endo...god its been hard. Its affected my fertility, my periods, my relationships, my mental health. This condition is extremely hard to deal with especially when you are dealing with daily pain like I am. I barely sleep and I'm constantly taking painkillers. I'm so glad I have the support through my followers and other endo sufferers on Instagram. It's nice to know others see and hear exactly how you are feeling, as they feel it too."
How did you get diagnosed with Endometriosis? (if you aren't yet, how has this journey been to date?)
Laura "My cousin had it and she thought my symptoms were lining up with this diagnosis so she took me to a gynecologist who diagnosed me, june 2017"
Jessica "After trying multiple different hormonal pills and pain killers, I had a laparoscopy where they found lots of endo."
Sian “I saved up to get diagnosed privately after experiencing symptoms for about 6-9 months. I say 'diagnosed' loosely as I'm aware that you can only be officially diagnosed via laprascopy, but they did find 'old' endometriosis (never explained what this meant but I assume lesions/scarring) via MRI. So we are working on the assumption that its endo!”
Sarah “I was diagnosed, after a 12 year exhausting journey, through Laparoscopic Surgery in September 2020.”
Miranda “Well! It was a lot of going back and forth to soooo many different doctors who were pretty darn dismissive. Luckily a friend recommended a new gynaecologist to try, and he had the initiative to offer me an internal scan. This showed that I had a large cyst on my ovary and so subsequently he booked me in for a laparoscopy. This confirmed Endo, and the surgery actually had to be extended by hours because the damage to my insides was so severe.”
Jade "I had a laparoscopy in 2015 and was diagnosed with stage 4 endo"
How do you manage balancing work/life with Endo?
Jade "Luckily I am now in a job with an amazing group of supportive colleagues which makes a world of difference. I sit at a desk so I'm able to use a heat pack or hot water bottle. I just keep on top of pain killers but don't take the ones that make me drowsy!"
Laura "I've been my own boss for a year now so it's much easier to take care of myself when needed to."
Jessica "I have such an amazing boss and I work for such a great company and they fully understand what I need when I'm having a really bad flare up. Life is hard but life is also what we make it, and it's important to have the best support network. My family and my partner are my rock and they make life that little bit easier."
Sian “It is really difficult. The fatigue really limits my ability to accomplish even daily tasks, and that's when the pain isn't so bad! When the pain is bad it is extremely difficult to continue to work full time and keep a house.”
Sarah “I am super lucky to be focusing on The Fanny Diaries at the moment so I work from home.”
Miranda “I'm soooo fortunate that my job as a radio presenter means I only work about 4 hours a day. Granted I spend an awful lot of time doing other freelance bits, but my show is only 4-7pm so with prep, that's quite short!
What do you find helpful when it comes to managing pain?
Laura "I'm trying to avoid meds at all costs so now it's mostly essential oils and also I've made big changes in my diet which helps a lot"
Sian “I try and limit how much anti-inflammatory medication I take due to adverse effects on kidney function etc but I will take some if I am really struggling. Mostly I use hot water bottles (and a very supportive husband)”
Miranda “Heat generally is my go to! I find that really helps. I also am prone to a peppermint tea/peppermint capsule for bloating pain, and I try to drink as much water as possible. Other than that, it's just prescription pain relief sadly.”
Sara V “Hug has helped me so much to diall down horrendous endo pain and cope with daily life with a chronic pain condition. I can wear it and have my hands free to answer emails or make a cup of tea. I can take fewer painkillers, and it's a great bonus that it can be used cold, I use it for headaches all the time!”
Jade "A hot water bottle as simple as it is is such a comfort for endo pain. I take zapain and oramorph from my doctor and top up with ibuprofen and anti sickness tablets if I need too."
Do you feel heard by medical professionals, family, those who matter?
Laura "My family has been very supportive from the beginning. But when it comes to the different doctors I've met, they were a few who thought I was exaggerating, that it was all in my head and that since I was a woman I was supposed to suffer"
Jessica "I don't think GP's have enough knowledge about it so sometimes I feel like I'm not being heard by them. My family and friends are so supportive but sometimes it's hard for them to sympathise because they don't fully understand the disease. The online endo community are amazing, they're always there to listen and offer advice."
Sian “My husband is amazing and it makes me life so much better to feel heard by them. My family is really supportive as well. Professionals have been a mixed bag. I've had one doctor who has been fantastic while others have made me feel rushed/a number.”
Sarah “Absolutely not by medical professionals no, my friends and family now take it a lot more seriously since I received an official diagnosis.”
Jade "I definitely don't feel heard my medical professionals apart from my consultant who is a specialist in endometriosis but barely get to see or speak to him. A lot of people just don't understand so it makes having this condition very lonely."
Miranda “I certainly feel heard by my family and partner; they are exceptionally patient and understanding. They give me space when I need it and support when I need it. Medical professionals however... less so!! I've had so many bad experiences I've actually lost count so unfortunately my confidence in doctors isn't exactly sky high. Fingers crossed they eventually prove me wrong! I'm lucky to have found a GP and Gyne whom I now trust, however they took over a decade to find (not okay!!).”
What advice or tips would you share with someone who thinks they might have Endo?
Laura "First, find a good doctor, you're not crazy, you're not supposed to be in that much pain and there's someone out there who will believe you and fight for you. And second of all, learn to find peace within yourself, it will help tremendously."
Jessica "Listen to your body and don't let anyone tell you or make you feel like it's all in your head. Seek a second opinion if you don't feel like you've been taken seriously. Don't be fobbed off with treatments that will just mask your symptoms, ask for a referral to a specialist and ask for a laparoscopy and excision surgery, they're your best option for pain relief."
Jade "I would advise anyone who thinks they may have endo to seek help from their GP and push and push till you get a gynaecology referral. Endo is only diagnosed through laparoscopy, don't be told otherwise!"
Sian “Go to your GP first with a list of your symptoms. If you aren't feeling heard book an appointment with a different doctor. Keep going even if you feel like you're being a pain, because you're not!”
Sarah “My advice would be to trust your gut instinct, you know your body and yourself. Don't give up, Fight for your Fanny!”
Sara V “Fight for a diagnosis, getting one opened so many opportunities for support and understanding I’m sure I wouldn’t have had otherwise”
Miranda “Once it's allowed, definitely bring someone with you to your appointments. Sadly, certain medical professionals just don't take some people seriously, so I always say there's strength in numbers. That person can be your advocate, your support and help remember parts of the appt that afterwards, you may well have forgotten due to all the stress. I took my mum to pretty much every appointment I went to from age 16 to 24!”
Learn more or contribute to our campaign
If you would like to contribute to our voices of the 1in10 campaign we would be delilghted if you tell us your story using our surveymonkey link below, we can keep details anonymous if you prefer! https://www.surveymonkey.co.uk/r/QHBJNY5 or get in touch with us at firstname.lastname@example.org.
To seek help and support for Endometriosis consider contacting https://endometriosis-uk.org/get-support to find a support group local to you.
To learn more about Hug explore our website and reviews.
At the request of some of our contributors, some names and contact details have been withheld for anonymity.