Endometriosis; What it's like, have your pain taken seriously and how to get diagnosed
Following our first real Endometriosis stories blog at the beginning of the month we received an influx of emails from Endo sisters with more to share, so we have compiled their experiences, advice and stories to once again share with the wider community in the hopes that we can do what we can to raise awareness.
If you are here because you are suffering what appears to be very serious period pain or undiagnosed chronic pain we hope these generously shared experiences and truly fantastic advice will be helpful for you.
What has your journey with Endometriosis been like?
Anouska “When I was first diagnosed I felt confused, scared and alone. It took years to find a specialist who understood me, but by then my endo had spread. We need more support 💛”
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.”
Amanda “It’s been horrible getting to this point. I never thought I would get to this point in fairness. I also never thought I’d be RELIEVED to be told I had an incurable disease.. but that relief was just bittersweet. Recognition that it wasn’t in my head, wasn’t that bad or wasn’t there at all was the best feeling.”
Julie “It has been 30 years of horrific pain, heavy bleeding and infertility. It is a horrible, painful disease that not only wrecks havoc on your body but on your mind as well”
ENDOvisible Jewlz “Endo has turned my world upside down more times than I can count but it’s also made me a fierce advocate and warrior. It’s made me realize I have a fire to fight for myself my family and the next generation future. It’s made me passionate about uniting for the fight despite my pain and frustrations. It’s helped me try to focus on what I’ve gained vs what I’ve lost.”
Nichola “Having Endo has changed my life. As much as I tried to resist it, adjustments have been made. It's made me who I am, it's part of me. There are days when I'm okay with it, then days come when it all just gets a little bit too much. If you are waiting for a diagnosis, never give up. I was 33 when I got my diagnosis (but fainting since my periods started at age 11) Fainting happened a lot in my younger days.
Church, swimming pool, sweet shop, school hall, pharmacy. Later in life at music gigs, hospital and in bars. Before diagnosis I was hospitalised many times with expected appendicitis. When I eventually got my diagnosis and over time I have seen many different doctors and specialists, who's options are very different. In the early days it confused me. I was told so many times I had endo because I didn't have children, I should have children (it will stop it) Why do I not have children? Have a hysterectomy, that will cure you. After my last operation I was told I was cured of endo!! Hallelujah Jesus lives!! I could write a book of all the ridiculous advise I've been given. Education should start early, knowledge is power! Having an invisible illness comes with its own set of challenges. If you know anyone with an inviable illness, be kind. Put yourself in their shoes and consider what they could, and are most probably be going through. For you this will be for a fleeting second, for them (me) it's eternal. Behind every smile lies an ongoing battle both physically and mentally. Being chronically ill is exhausting. Be patient, their limitations will probably be different to yours. Listen, support. Have some empathy. Consider they may not be able to take part in all activities, don't let them feel left out. Don't be afraid to ask questions.”
How did you get diagnosed with Endometriosis? (if you aren't yet, how has this journey been to date?)
Anouska “Urgent laparoscopy”
Jade “I had a laparoscopy in 2015 and was diagnosed with stage 4 endo”
Amanda “I was diagnosed 3 years ago at 27 after having symptoms since I was 13. I was diagnosed via laparoscopic surgery.”
Nichola “It was 2011 and happened by sheer luck. I went for a routine smear test, the nurse asked about my periods (I was having 2 a month) I had come off the pill, which the doctor had prescribed as a way of controlling my nightmare periods. I explained to the nurse that I had been asking the doctor for years and years why my periods were so bad. I faint (a lot) they were very heavy, terrible pains. No girl looks forward to her period, but I genuinely dreaded them. She arranged for me to have a scan of my ovaries. As I was undiagnosed, this took place at a maternity ward of a hospital!! The radiologist asked lots of questions while I was having the internal scan, she told me it was most probably endometriosis (I had no idea what that was at the time) and allowed me to see what she was looking at on the screen (my insides) I never understand why all radiologists since are very secretive about showing you the finds of your own body during your scan! It's my body, let me see please. It was fascinating to see, but terrifying at the same time. I was littered with cysts, like a consultation! I was referred to gynae and had my first laparoscopy in December 2011. My knowledge of endo at the time was practically non existent, but I was incredibly lucky to have a highly skilled specialist. I've since had 2 further operations, with a 4th imminent.”
Julie “Laparoscopy after 10 years of issues with bleeding, pain and collapsing”
ENDOvisible Jewlz “I had symptoms from birth; chronic infections, digestive issues, and chronic fatigue. It increased as I got older to ligament issues, heavy cycles, immune system issues etc. I had my first colonoscopy at age 14 and first laparoscopy at age 16. This was when I was diagnosed. I was told pregnancy would cure it. I lost four babies. Hysterectomy would cure it? Here I am with thoracic and endo on my brain. I wasn’t treated for endo by excision until age 34.”
How do you manage balancing work/life with Endo?
Anouska “Have been unemployed for years... I cannot find a balance that works for me.”
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!”
Amanda “It can be difficult at times. I don’t know when a flare up will come so it can come out of the blue and interfere with work and personal life. I hate making plans and a last minute flare up forces me to cancel.”
Nichola “I'm very lucky to have a very understanding boss. I work extremely hard, but I am able to take sick days when I have debilitating flares. I'm not very good at taking it easy and allowing my body to rest. I tend to muddle on through.”
Julie “I have just had to have a full hysterectomy and bowel resection as my last resort after two previous surgeries to remove endo 😪”
ENDOvisible Jewlz “I’ve had too many jobs to count and have tried everything from working part time to working self employed but it’s hard to byukkd stability. Many businesses slandered me for not believing my medical condition.”
What do you find helpful when it comes to managing pain?
Anouska “Tens machine and rest”
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.”
Amanda “I love my Hug. It is my lifeline. I’m also a big fan of laying horizontal... even though that’s not practical most of the time.”
Nichola “I do gentle yoga once or twice a week. Lots of HOT baths. CBD cream is a god send. My warm Hug rarely leaves my side. Numerous heating aids. Ovira tens machine is good for while out about when the weathers too warm for heating aids. Suppositories I find much better than oral medication. Anti-sickness meds for when it's really mad, but I still puke when I have bad flares. I find the mediation and breathing techniques used in the yoga classes come in very helpful. Talking to myself and reminding myself, the pain will pass, breath through it. It may feel like your dying, but you won't! I also take various vitamins. I have fibromyalgia too so I take vitamins and nerve blockers to dull the fibro and endo pains. Gentle walks are good, I have a walking stick which enables me to be out longer. Distraction of any form day day to helps. I love baking and gardening. I'm part of the local endo group. I'm so glad I found them. Monthly sessions (before the pandemic) made me feel like my pain was valid and I wasn't in it alone. Hearing others people's stories and experience brings a feeling of belonging, and 'phew', I'm understood.”
Julie “Heat, and hot baths”
ENDOvisible Jewlz “HEAT for abdominal pain and ICE for brain lesion, TENs unit for overall pain, massage, yoga, and all things stress management. I try to stay up on supplements as well as CBD to help with symptoms. I also do pelvic floor therapy.”
Do you feel heard by medical professionals, family, those who matter?
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.”
Amanda “It took a long time to feel heard. But I knew my body and knew something wasn’t right. I felt like a broken record and I feel like I have lost friends because “they get periods too.” So their lack of understanding has pushed me away. I never thought I’d find a boyfriend who understands but thankfully he is great and is an amazing support.”
Nichola “With medical professionals on the whole, not really. The last specialist I saw, didn't think there was anything wrong. I pushed for surgery when he advised me against it. But I'm glad I stood my ground. Once he could see inside there was lots of endo to be removed in areas not seen in the MRI scan. Adhesions over my urethra, ovaries stuck to the side walls, deeply embedded endo. I'm glad I pushed for surgery, had it been 10 years earlier I wouldn't have had the courage to. My doctor is great though. He takes the time to explain clearly and listens. Family sometimes understand, but it's difficult to explain when they don't experience it. I share a house with my best friend. She understands it and see the worst of it. She's great at getting me to rest after a flare, bringing endless cups of tea, and 'do we need to do to the hospital?'”
Julie “Only when I was under my last Consultant, he was the first person I though truly understood”
ENDOvisible Jewlz “I never have felt heard and have always felt crazy. I was recently battling bouts of high blood pressure and was told by my doctor to stop taking it. I then found out it was due to my brain lesion. I now have an among general disturbances, cardiologist, and neurologist who are all very informed on endometriosis. I finally feel heard after 40 years.”
What advice or tips would you share with someone who thinks they might have Endo?
Anouska “Keep a diary and present to your GP. Do not be dismissed.”
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!”
Amanda “Listen to your body. Be the broken record. You know what’s right and what’s not.”
Nichola “Don't be scared to speak to your GP about the pain you are experiencing. Your pain is real. If you are not taken seriously ask to see a different GP. Keep a pain diary. It's really easy to remember the pain while your body is submerged in it, but once it's faded or dulled down your brain has an amazing way of letting go. Keeping a diary will make it easier when you speak to a GP or gynae. It's very easy to be flustered during an appointment. Your diary will prompt you. List all your symptoms and rate them on a pain scale of 1 to 10. 10 - I'm dying here, to 1 yeah I can get out of bed take a shower, and the day is manageable. Write a list of questions you have, take them to any appointments and don't be afraid to ask.
Make notes at any appointments you attend. You might find it beneficial to take someone with you, who could also take notes and or remember information you may forget. If you have a scan or MRI and the results have no findings, or if blood tests come back normal, or nothing can be felt through an examination, it doesn't mean there's nothing there. Trust your body. You live in it, you'll know when something isn't right. Push for the next stage. Ask to see a specialist, push to have a laparoscopy. Living with an invisible illness comes with lots of challenges, be the best advocate for yourself that you can. Down days will happen, take each day as it comes. Read, read and read some more, educate yourself. Remember everyone is different, everyone's endo is different. Don't compare yourself and your endo to anyone else's. Don't judge fellow endo suffers for their beliefs. What works well for you may not work for the next person. It's not one size fits all. Be kind to everyone, share experiences (I'd imagine some of them will be similar) Join an endo group, talking helps. Listening helps. Your part of the endo community, you'll never be alone. Don't be afraid to tell people about your illness.”
Julie “Get a referral to an endo specialist as soon as you can, don’t wait or be fobbed off”
ENDOvisible Jewlz “Go to a specialist if possible. If not possible seek a doctor who knows about endometriosis and who’s willing to get to the bottom of your symptoms. If your doctor only spends 10-15 minutes with you get another doctor. You want someone vested in caring for you and who will spend time figuring out your symptoms to find a solution.”
At the request of some of our contributors, some names and contact details have been withheld for anonymity.
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 read the original Endo awareness month article at