Together is Better
In this website, you can read and join to my beautiful journey. Share your own experiences, in comments or attach a picture of yourself and share your story in this form, If you don't mind I will publish on the website to encourage others with your strength and braveness. I would love to know your stories and ideas as well. We can learn from each other and be a part of a lovely community whose members are open for a change and on the bright side of life.
“I have had endometriosis symptoms for over 10 years, but I don’t yet have a diagnosis.
Doctors insist that what I experience is normal, but I know it isn't.
So far I haven’t found any treatment that worked for me. The pill drove me suicidal. The Mirena IUD made me bleed for 10 months straight. I wish that doctors understood more about the nuances of each body and had better testing systems for them, and stopped blanket-treating all period issues with the pill.”
— Anonymous South Africa, 23
I first experienced severe gynaecological pain when I was only 12, before I’d even started my periods. This crippling pain continued to visit me every month for a whole year until I eventually started my periods. Once I started my periods, the pain got even worse. It reached the point where I experienced it every day of the month and was rushed into A&E twice monthly (once during my period and once during ovulation) and would often be given morphine as pain relief. I kept being told it was ‘normal teenage cramps’. I also lost a lot of blood, easily using up to 12 tampons and pads an hour. Due to the amount of blood lost, I became anaemic and suffered from chronic fatigue.
I was 14 and my quality of life was non-existent; I could no longer go to school because of the pain, chronic fatigue and being in and out of hospital all the time. I finally had a laparoscopy in 2010 and diagnosed with endometriosis.
I cried with happiness when I was diagnosed with endometriosis because it meant my symptoms were no longer 'phantom' pains but actually a real condition!
Since my diagnosis I have been on GnRH for four years which has allowed me to complete my school education.
At times having endometriosis has been isolating, debilitating and restrictive: I have never known adult life without it. I know I wake up in pain most nights but
whether I like it or not, my endometriosis inadvertently shapes my life and who I am.
Every day I dare myself to challenge my endometriosis, be it teaching someone about it, empowering a fellow sufferer or breaking a taboo by simply talking about it. I became an ambassador for Endometriosis UK because I wanted to help the charity to continue to educate, empower and break down the taboos in anyway I could.
Eventually if enough of us tap the wall it has got to tumble — and it doesn't matter whether it is for us or for our grandchildren — we cannot suffer in silence forever.
Alice has a blog, which aims to empower women who have endometriosis.
“I’ve had endometriosis symptoms for about two years, but no diagnosis yet. I am on the waiting list for an ultrasound. I've been offered mefenamic acid (prescription painkillers) but no treatment yet because [the diagnosis] hasn't been confirmed. My experience with the healthcare system has been pretty good, apart from the GP assuming I am a woman (which is usually how I am read by other people so I am used to it). They listened to my concerns and explained the next steps.”
— Anonymous UK, 22 (1)
I started getting problems from my first period aged 13. However I wasn’t diagnosed until aged 19. My endometriosis resurged about 18 months ago. How many ways can you say ‘Ouch?’ The main symptom is pain. I have chronic pain in the pelvic area, painful menstruation, pain when my bladder is full and pain when I empty. I also have referred pain in my back, thighs, hips and knees. I have been treated with an injection in my stomach, the rest of my treatments have been surgical and tablets, liquids, patches - all to treat the pain. I have a series of different types of painkillers and dependent on the severity of the pain and the area of the pain, I use different ones. Sometimes, a combination of them. It’s become quite a skill determining what works.
I have Stage 4 endometriosis so I had a bowel resection in August 2013. I think one of the things I’ve struggled with is that people mistakenly believe because you’ve had surgery, you should be fine now. I still have a lot of pain. Also putting on a brave face can be hard. It’s seven steps from my bedroom to my bathroom. I know this because I’ve counted them, because on a regular basis I steel myself to make the walk.
Life hasn’t felt “normal” for quite sometime.
As a trained nurse, I know and have been taught the value of talking therapy. Endometriosis does not only affect you: it affects your family, your partner, your children, often your siblings – in fact, I have a close relative with endometriosis, too. Dependent on how we may feel, the affects can be transferred without intention onto other people in the family. No area of my life is untouched, even intimacy.
If you experience pain during sex it can be difficult for your partner too, men don’t want to cause you pain, so lots of talking about it together helps - it’s just making sure you take the little steps to help make your situation that little bit lighter. My family help out a lot with tasks which I am unable to do at the moment and this helps to alleviate some of the strain on me. I try to remain as active as I can and to just take one day at a time.
“I’ve had endometriosis symptoms for 20 years and got diagnosed five years after my symptoms started. As far as treatment goes, I’ve used birth control, Lupron, had a laparoscopy, and a TAH-BSO (Total Abdominal Hysterectomy and Bilateral Salpingo-Oopherectomy—the removal of the uterus including the cervix as well as the tubes and ovaries). My experience with doctors has not been great. They were always more concerned with my fertility than my pain, despite me saying, in no uncertain terms, that I never wanted kids. I also tried an endo support forum but never got into it. The language was never inclusive, always just saying ‘women’.”— Anonymous USA, 34
“I’ve had endometriosis symptoms since my first period at 10 years old. Now I’m 24 but I still don’t have a diagnosis. Doctors tell me it's normal and we have to accept the pain. [As far as treatment goes]
I was on the pill, but I got very depressed
and lethargic and stopped taking it after a few years. My experience with the healthcare system has not been good. They all want to me to take the pill, even when I tell them how it affects me badly, and they don't acknowledge that my symptoms are problematic, they usually tell me to just take painkillers and deal with it, I wish they would listen and take me seriously, even just to diagnose me officially. Right now I feel like I make things up when I can't work and am in too much pain, because I know the pain is too much but it doesn't get validated.”
— Suz Germany, 24