Hi. My name is Debbie.
I got diagnosed with stage 3 endometriosis in 2022. I first had symptoms of endo when I was 13.
In 2018 I got really sick and ended up in hospital for a week with a horrible infection that was thought to be appendicitis but it wasn’t. They did multiple tests to see if they could find anything that would indicate what was wrong but nothing came back except for a cyst on my right ovary to which a gynaecologist said was nothing. I continued on that year having horrible periods and sickness times where I would end up visiting A and E all they ever done was a blood test and send me home until one gave me co-codomol it didn’t help with the pain it only made me sleepy. I was in college and with the stress and feeling ill so much there were times I couldn’t eat. By the end of college I was underweight and had lost my period. ( I was at a equestrian college) I was riding a lot and doing other exercise and I hadn’t noticed.
When I left college I couldn’t get a job and ended up moving home so I got my weight back and my period came with. And so did all the symptoms
During covid I was living at home and my mum noticed how sick I would get and how often. At this point I was sick at least 3 times a week. I had done my own research at this point and had self diagnosed myself as a woman with endometriosis and i started reading books. My favourite one till this day is The Dr will see you now by Tamer Seckin. It was the book that got me through that initial time of knowing it was endo.
My mum and I rang the GP and had a conversation about my symptoms- very bad period cramps that made me vomit and pass out, diarrhoea, nausea, migraines, shooting pains down my legs especially when walking, not being able to eat full meals.
When we spoke to the dr I was worried that it would be brushed aside and told your a woman deal with it. But this dr said ok I think you might have endometriosis I’m going to refer you to a gynaecologist . I started crying on the phone hearing those words that she actually listened to me. A 20 year old woman crying and thanking the dr for actually listening to me. The dr had put me on birth control never thought I would hate something as much as I hated that stuff. It made all my symptoms 20 times worse
My parents decided that the NHS would take to long as I was basically sick all the time so I went privately.
The first dr I went to was very rude and said that I was too young and because I was on the autism spectrum that there would be no chance in me ever having endo and that a bit of pain is normal. He never spoke to me and only asked my mum 2 questions and that was it he never looked at me he just read my file and judged me. I left that room crying and feeling totally belittled. I cried the whole car ride home thinking am I just going crazy now.
A while later we went to see another dr a lady this time. I said I never wanted a man with this issue ever again to my mum so we found this other lady.
When I walked in I felt welcomed and she just sat an listened to me rant and let out all of my issues and symptoms and she done an ultrasound because I had said about the one found in 2018. It was still there but it had grown and she immediately said yes you need surgery we’ll get you on that list. So March 2021 I had my surgery. It was a challenging time.
There is no specialist in Northern Ireland so I had ablation surgery and removal of a cyst that was 5cm by 7cm removed. She also done a D and C as I had polyps in my uterus which extended the heavy bleeding and large clots that I would pass.
Since surgery I found out that it brings up past trauma. I was sexually assaulted when I was 17. And I was very angry and depressed after surgery and I didn’t know why I was feeling all these issues arise. When I went back for my review I told the dr what was going on and she became very concerned as I had said that a bit of the anger was at her but I got over that and she sent me to a Psychiatrist just to speak everything through. I got diagnosed with depression and PTSD . I worked through it and have put things in place to cope and deal with the feelings when it comes.
Since my diagnosis I have grieved that little girl in me who would go out and go horse riding and do ballet and not have issues with her legs going numb and tingly and not being hung over a toilet for hours being sick. I don’t remember what it is like not to be in pain every day and night.
The worst part is you still have to act like a whole functioning human being and to not look sick every day when you just feel like staying in bed and just giving in.
The best part is we have this community that is together and we see each person and we know what it is like to feel alone in what feels like a very lonely illness.
How is your support system? Do you feel supported? Do you feel that your family and friends try to understand and support you?
I feel like some of my family are understanding but others I feel just think I’m being dramatic about it. They just don’t see me when I'm sick
Are there areas (relationships, work, hobbies) that have been particularly affected by endo?
My horse riding has been really affected by my endo with my sciatic pain. Though I have found that recently it’s not been to bad so I have started back recently to see but I’m only going 1 time a month
What strategies or treatments have NOT been effective in managing your pain? Are there specific activities or lifestyle changes that you've made that didn't help to alleviate symptoms?
Birth control was a big no for me.
What do you wish you knew earlier in your journey?
I wish education would add in period and menstrual health
Are there any misconceptions about endometriosis that you've encountered?
That it only affects you when you are on your period. I taught that person a lesson that day
What advice would you give to someone who suspects they may have endometriosis? Is there any guidance you would offer to those recently diagnosed or struggling with their journey?
Talk about it. Don’t bottle it up. Say to the Dr. and if they don’t listen go to another one.
