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3 years ago, aged 28, I started having really painful, heavy periods. It hurt having sex too. I got really uncomfortably bloated. After about a year, I went to the GP and they did blood tests. They referred me for an ultrasound (external) through the NHS. They said I should go on the Pill (I refused - for context I was on the Pill age 16 to 26 and then had the copper coil age 26 to 27, but had copper toxicity so didn't have it in long. The Pill makes me very depressed).
My ultrasound came back fine and I was prescribed tranexamic acid to help with the heavy flow and dismissed.
The pain got worse. I passed out at work twice because of it - the first time as I fell I hit my head which I had to have glued.
I went back to the GP a little while later and was told they couldn't help me and to try taking painkillers earlier on to help with the pain. I managed it as best I could, working from home during my period and having a hot water bottle on my abdomen constantly.
Then I started getting pain outside my period. Its like a stabbing pain or a knife being twisted inside me. Again I went to the GP. This time the female GP looked me in the eye and said "Abbi some people just get painful periods."
I am fortunate enough to have medical insurance through work so I made an appointment to be seen privately.
Straight away the gynaecologist suggested it could be endometriosis and explained that the only way to know for sure would be to have a laparoscopy. I asked if there was anything else we could do beforehand. She prescribed me mefenamic acid which works wonders for the pain. She referred me for blood tests for my hormone levels which show I have low ovarian reserve (low count or quality eggs). She referred me for an internal ultrasound which found a 3.5cm endometrioma cyst on my left ovary.
I had surgery a few months later on 4th December 2023 where she removed the cyst, tested my fallopian tubes (all ok) and found endo on my ovary, my uterine pouch and my ureter. She couldn't remove a lot of it due to risk of complication.
Since surgery (9 weeks ago) I haven't had anywhere near as much pain and I am thankful I have an answer to what has been happening to my body.
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?
3 years. I was 28 when symptoms started and 31 when I got diagnosed.
What were your initial symptoms? Do you feel they've progressed or gotten better over time? What symptoms do you currently live with?
Painful periods, heavy periods, bloating, pain during sex. Got worse after approx a year.
I still live with all of them but luckily know how to manage it (as best I can) now.
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?
NHS didn't care and dismissed it as painful periods. My (private) gynaecologist (Dr. Salma Noor) is empathetic and understanding and very experienced in endometriosis.
How do your symptoms/pain affect your overall wellbeing? Have you experienced any challenges in communicating your struggles to others?
It gets me down. I have to cancel social plans and work (I really like my job). This makes me feel low in myself and unmotivated because when I try to do things I can't. No one understands it unless they have it themselves. Luckily work has been very accommodating.
How is your support system? Do you feel supported? Do you feel that your family and friends try to understand and support you?
Kind of - my family and a few close friends are very understanding and sympathetic and have supported me particularly when I had surgery. There are other friends I expected to be there for me and they haven't been.
How is the quality of your medical care now? Have you found that medical professionals that you trust? Or are you still searching?
I am a bit worried as I can no longer be seen privately and must go back via the NHS now for future treatment. However, I am hopeful that I will receive treatment quicker now I have a diagnosis. I trust Salma Noor, my gynaecologist, and surgeon completely.
Are there areas (relationships, work, hobbies) that have been particularly affected by endo?
Yes, but only during my pain episodes - I can't go to work, or if I do I need my hot water bottle with me or to lay down regularly to breathe through the pain. I also can't exercise as much as I would like during these times. I have to cancel social plans.
What strategies or treatments have been effective in managing your pain? Are there specific activities or lifestyle changes that have helped to alleviate symptoms?
Mefenamic acid, Tranexamic acid, Hot water bottle, Laparoscopy (hopefully! Still only 8 weeks since), peppermint tea, TENS machine. I'm vegan which I think helps as I eat healthily and don't eat dairy or red meat which I believe are triggers. I try to avoid too much gluten. I do yoga 4-5 times a week and run/weight train a few times a week too. I have a good sleep pattern too and try to avoid stress (yoga helps with this).
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'm not sure. I think it's worse when I am stressed. Also, paracetamol and ibuprofen don't help my pain.
What do you wish you knew earlier in your journey?
How much the worry around my fertility would impact me. I am worried I won't be able to conceive. I'm already 31. I thought I was going to the doctor about painful periods and I realize that actually the concerns on fertility are more predominant for me.
Have you found the endo community to be helpful throughout your journey? What does community mean to you?
So helpful but I also find everyone has different experiences/stages etc, it's not a one size fits all.
Are there any misconceptions about endometriosis that you've encountered?
I didn't realize stages of endo don't translate to pain levels. I also didn't realize it couldn't all be removed; I thought they would just zap it all out.
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?
Speak to a specialist ASAP. A gynaecologist and or an endo specialist. Keep pushing for answers. You know your body better than anyone.