What was the beginning of your endometriosis journey like before you knew what was happening?

I always used to get sick or diarrhea around period,losing weight, back pain. Low mood and flu feeling. When I started noticing more extreme symptoms though was when I came off of the coil with no form of hormonal contraceptive. The pain was so bad I couldn’t stand straight. Felt so nauseous and sweaty, back pain and stomach cramps horrendous. Heavy bleeds and just general pain all over. My heart rate was also always over 100 even at resting. I was exhausted all the time. I. Thought it was my body getting used to being regular again. I perservered for a while but I couldn’t bare anymore and told Dr and nurse how bad it was and couldn’t cope so they said put coil back in. The coil didn’t seem to help and always felt in wrong place. I told them I could feel it and I was still in pain but with less bleeding. They thought maybe it slipped,had a scan to find its position. They said it was fine but could see a big cyst on ovary, then sent me on my way and nothing else was said. I continued suffering.started getting what felt like utis that no antibiotic fixed, it was just the feeling of an inflamed bladder all the time that made me desperate to wee even if I wasn’t. Started getting migraines as well. Was on waiting list to see gyny told them my symptoms and was told no none of that’s related and can’t be possible. Listed off so many symptoms, that they just told me was normal and don’t mean anything. I went in hopeful and left deflated and unbelieved and silly, I saw 3 different Drs from gyny that all had nothing to say apart from it’s not possible. I was back and forth with Drs but nothing was ever documented properly. Then one said let’s take coil back out and see if it makes difference. They did and then I was discharged and apparently was all better according to my notes.

Then I got to the point of being in such debilitating pain, I couldn’t walk, I was vomiting from pain. Had migraine,Sweats, Diarrhea. I was so tired and unfunctioning I couldn’t make it from my bedroom to the bathroom nextdoor without slowly crawling on the floor. I honestly thought I was dying. Nearly called ambulance as I was alone. But some how got through just laying on floor curled in a ball. But as Drs kept telling me I was fine I just dealt with it. But these episodes started happening every 2 to 3 weeks where I did end up going to a&e where a Dr suspected appendicitis but after tests for that she suspected endometriosis but couldn’t do anything for me. She told me to go back to gp and get scans done. I couldn’t wait again for referral so I paid for a private scan the next day with someone that had experience with Endo, who said it was very likely from scan as my uterus was fixed like concrete. No movement and there was a very large cyst. Still the same from years ago altho double the size. I took this scan to another gyny Dr on nhs and he said ok let’s do a laparoscopy and remove cyst and explore at same time. Then finally after 7 years of the extreme symptoms starting I was diagnosed with deep infiltrating endometriosis stage 4.

When were you diagnosed, and what was your journey to getting diagnosed like?

I have written my journey in above question.

After 7 years of extreme symptoms starting, altho suffered as a teen.but was Always on pill. Also always suffered with chronic pain fibromyalgia and hashimotos. Finally diagnosed with D.I.E stage 4.

Drs kept telling me I was fine all those years. Finally got diagnosed at 39 years old. Id still be waiting if I didn’t pay for private scan though as I only just got my nhs referral appointment over a year later for my 1st consultation where they were just Going to send me for an MRI.

What did it feel like to finally have a name for what you were experiencing?

I was so relieved to finally be believed and know I wasn’t crazy and there was a reason for my pain. The surgeon said it was way worse than he expected.

How does endometriosis show up in your body and daily life?

It has taken my life. Constantly in pain. Constantly exhausted. I’m here surviving but not living. I’m struggling every day with work. Had to reduce my hours. Struggle with finances now as I just can’t cope with work or daily tasks. I’m always worried about toilet facilities and what I eat and if I’m Gona flare up or belly suddenly Gona bloat 10 times it’s size. Have to live in baggy clothes, I don’t go out anymore. I just feel miserable all the time and there is no help. I am light sensitive, sound sensitive, have the worst brain fog and cant make sentences sometimes. I look exhausted and in pain, my hair is falling out and dull, constant headaches, pelvic pain, lower back pain, hip pain. General all round stiffness, sickness, diarrhea,irritable. These are only a few symptoms which now seem to be more often than not. My next appointment with an actual endometriosis clinic could take up to 2 years so I’m now just left on my own again.

How would you describe the pain or physical challenges of endometriosis?

Ruined my life. I feel like what is the point right now. Its hard to feel joy and have nice experience when all u can think about is pain and exhaustion.

Do you have “good days,” and if so, what do they look like?

My good days are just days I can walk less bent over and I might manage a bit of work without my brain overloading too much. I may have 4 or 5 days a month now of “good” but good is just more tolerable pain and mental capacity.

How has endometriosis affected your education, work, routines, or ability to make plans?

I have no life anymore, I can’t plan because I worry. I can’t get a new job cuz I’m worried they won’t want me with this and also having more sick days and the thought iv trying to learn new things when I can barely function in basic needs is terrifying. I can’t eat cuz I’m too tired. I feel like I bring everyone down.

Has endometriosis had an impact on your finances or access to care?

Yes majorly. It’s hard to prove you need help financially and it’s hard to work when this disease is so unpredictable.my hours are so reduced I can’t even afford to do the things that will help give me some relief. The extra stress also makes things worse.

What has your experience been like with doctors, specialists, and navigating the healthcare system?

Awful, never believed, always made to feel crazy. Always waiting 6months to a year for next appointments. Such a long process and hard to fight when you are already exhausted. My gp just kept wanting to give me antidepressants and anti anxiety meds and counseling.

What has your experience been with treatments, surgeries, medications, lifestyle changes, or other approaches?

My bloating is worse since my laparoscopy excision. I don’t feel better. Iv only just started taking dienogest which is making more tired and sick. The coil helped with periods a bit. They actually gave me gas and air to insert this time.

I already eat quite well, I found I can’t have caffeine anymore, def less sugar and no alcohol helps and more natural food.

What has it been like to live with a condition that often isn’t visible to others?

Exhausting, I just don’t want to pretend anymore. I hate people only see a young female. Sometimes I wish I could have a walker to sit on and help me walk but I feel people will just judge me.

Have there been times when you felt dismissed or not believed about what you were going through?

Always, until my recent diagnoses. But ex partner never believed it, he said I was lazy. No Dr has every believed me, just thought my mental health was unstable. My work place is getting better but still a long way to go to feel comfortable.

What has the emotional or mental side of living with endometriosis been like for you?

I really feel like giving up a lot. I’m not living anymore I’m just here waiting for next painkiller or next appointment.

Ruined my relationships, my ability to thrive, learn, have confidence, changing career just go out and do normal things without pre planning an emergency exit plan I have no money, can barely work and receive no help. I feel useless in every way.

How has endometriosis affected your relationship with your body, identity, or sense of self over time?

I used to love my body, my identity. I now don’t want to look in mirror and don’t like any clothes on me and have no confidence. Plus scars now and weight gain. Plus spots from the pill.

How has endometriosis affected your family relationships, friendships, or dating life?

Non existent and don’t feel I can make new relationships with anyone, I feel numb and the brain fog is unhelpful.

But I’m lucky I have good parents

Has endometriosis had an impact on intimacy or your sexual life?

Yes.

If relevant to your experience, how has endometriosis influenced your thoughts, decisions, or experiences around fertility and family planning?

I’m running out of time and don’t know what to do and no1 will give me advise. I can’t imagine having a child while feeling like this but would like to know my options about saving eggs etc without costing a fortune.

Beyond treatment, have you found anything that genuinely helps you cope physically or emotionally?

Having one person that believes you. Reflexology used to calm me, but can’t afford Anymore.

Do you feel supported in your journey? Who or what has helped you most?

Not enough. Just finally being diagnosed helped a bit.

Have you connected with others who have endometriosis, either online or in person? What has that experience been like?

I follow people on Instagram to not feel alone and listen to podcasts

How has your relationship with endometriosis changed over time?

It’s just got worse and I feel like it has robbed me of life. But no1 takes it serious.

More broadly, what are your thoughts on how the medical community understands and prioritizes endometriosis?

It’s not good enough. To wait 2 years to get into a specialized clinic. To be left alone after being diagnosed. For Drs to not have a clue what the actual condition is, is quite awful. My gp has no idea. For the average diagnosis time to be around 9years of suffering is not good enough.

How do you feel endometriosis is represented in society or the media? What would you like to see change?

I would like there to be more awareness about it being a full body debilitating chronic condition. I would also like more awareness for young teens who start with painful periods to have more knowledge and be investigated for the right treatment for them. Because it seems the quick answer for teens is go on the contraceptive pill to help period but this causes problems in the future. Pill is not the answer. Help prevent future debilitating symptoms.

What would you like more people to understand about endometriosis?

It’s a full body chronic inflammatory condition that effects every part of you. Everyone is different but it’s not a period problem. It invades your whole body

When you think about the future, what fears, concerns, or hopes do you have?

Do I have a future? I hope there will be a better way to manage symptoms.