How long did it take for you to receive a diagnosis? How old were you when symptoms started? How old were you when you received a diagnosis?
It took 7 years to get my diagnosis, my symptoms started at 13 and I received my diagnosis at the age of 20.
What were your initial symptoms? Do you feel they've progressed or gotten better over time? What symptoms do you currently live with?
When my periods first started they would be extremely painful with cramps that would feel like I was being stabbed and took my breathe away, these also would happen around ovulation. They were also very long, I never had a period shorter than 7 days and some even lasted up to 12 days. I would also struggle with fatigue during the week before it would start and during. I also struggled with back pain and constipation.
I went to my GP who put me on a combination pill at the age of 13. This helped take the edge of for a while but inevitably the pill would stop working after a few years and I would change onto a new pill. I kept doing this till I was 19 when my pill stopped working completely.
I would throw up from the painful cramps, pass out and bleed inbetween periods. After a year of being off the pill my symptoms got significantly worse I was having even more painful cramps and leg pain and numbness. This started to be everyday and would be triggered by exercise, stress and things I ate and drank. This would also cause my abdomen to feel like it was filled with cement causing me to bloat which was really uncomfortable.
Now after my laparoscopy I still experience a majority of the symptoms I had before except I currently don’t have periods.
What was your experience with healthcare professionals during the diagnosis process? Were there misdiagnoses or misunderstandings? Did you experience any dismissive attitudes regarding your symptoms?
At 13 the GP told me I just had bad periods and that was normal and it can be controlled by using the combination pill. Each time I’d go back they would just put me on a new pill.
When I was 19 and I knew something was really wrong I got told to drink more water, eat more fruit and they proscribed me pain killers. One doctor diagnosed me with vaginismus and told me it was stress that had caused it. Many of the doctors I have seen after my diagnosis repeatedly ask me if I want to have kids in the future.
The only useful person I have seen is my consultant who is an endo specialist. When I first saw him and described all my symptoms he said he’d be shocked if I didn’t have endo and scheduled a lap for me the next week. He continues to have check ups with me every 3 months and is constantly looking at new ways we can try and improve my quality of life.
How do your symptoms/ pain affect your overall wellbeing? Have you experienced any challenges in communicating your struggles to others?
Before I got diagnosed I wasn’t able to drive due to my symptoms. I had to be signed off work for a month. I struggled to communicate what was happening to work because I didn’t know myself what was causing all this pain.
I hadn’t been believed and been told I was making a big deal over nothing for so long by healthcare professionals I started to believe I was making it up. I struggled with depression around this time.
Since my surgery I still struggle with anxiety around flare ups and leaving the house in case I flare up when I’m out and feel like I have to put on a brave face when I’m not at home.
I have struggled sleeping due to the pain keeping me up at night that now even when I don’t have pain I still wake up and can’t go back to sleep.
How is your support system? Do you feel supported? Do you feel that your family and friends try to understand and support you?
I have had the most amazing support system ever! My family have been so amazing in getting me the help I needed. My parents paid for my private consultation and I was able to use their private medical insurance to get the treatments I needed. Both my family and my fiancés families came and looked after me after my surgery.
My fiancé has been incredible it’s been very tough for him to see me go through this and to hear starting a family might be tricky for us. However he always looked after me when I’m in pain, come to any medical appointments I want him at and always supported any decisions I’ve made.
How is the quality of your medical care now? Have you found that medical professionals that you trust? Or are you still searching?
I have found a great consultant who specialises in endo he’s given me different treatments and has been looking for new ones that could improve my life
Are there areas (relationships, work, hobbies) that have been particularly affected by endo?
I struggle with work when I’m having a bad day sometimes I’m so exhausted just from driving to work and then can’t concentrate because of the pain. It’s been really hard to go back to work since my diagnosis and go back to ‘normal’
I stopped exercising before my diagnosis but have now been able to get back into it. However, I need to take breaks now and sometimes I’m not able to do it at all due to the pain or feeling dizzy.
What strategies or treatments have been effective in managing your pain? Are there specific activities or lifestyle changes that have helped to alleviate symptoms?
To reduce flare ups I now try and control my triggers so I don’t have caffeine anymore and limit my alcohol intake. Along with eating anti inflammatory foods.
To help mentally and limit stress I have counselling which is helping me come to terms with living with a chronic illness.
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?
I flare up even with all the things I do to try and prevent them but it happens less often now.
I tried a combination of a coil and a progesterone only pill that wasn’t very effective. It stopped my periods but didn’t do much with reducing my pain and leg numbness.
What do you wish you knew earlier in your journey?
Painful periods and pain/ bleeding during and after sex is not normal.
Have you found the endo community to be helpful throughout your journey? What does community mean to you?
It’s meant more to me than I can put into words. Seeing other women going through the same thing as me is so validating and I don’t feel alone.
Are there any misconceptions about endometriosis that you've encountered?
That it’s just related to periods and can only affect you during your period. You can’t have endometriosis because your blood tests and scans are clear. They found I had PCOS before I found out I had endo and healthcare professionals almost stopped trying because they thought they’d found what was wrong with me when my symptoms matched endo exactly.
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?
Don’t let people dismiss you, you know your body and if you know something is wrong keep pushing till you get taken seriously.
Tell someone you trust about what you are experiencing. Have endo and getting diagnosed is a very lonely experience that can really effect your mental health. Remember you are not alone and there are people around you who will love and support you.