I am taking on a 1in10 Challenge to raise vital funds for Endometriosis UK! Thank you for taking a look at my page. I would like to first give a brief explanation of what endometriosis is, if you are interested in learning more about it, please see Endometriosis UK’s website as they have lots of useful information available. Following that I will tell you about my challenge and explain my reasoning, then if you would like to read on, I will share my personal journey with Endometriosis so far, so you can see the sort of effects this disease can have on people.

What is Endometriosis

Endometriosis is the name given to the condition where cells similar to the ones in the lining of the womb (uterus) are found elsewhere in the body. It is a chronic and often debilitating condition that can cause painful periods, painful sex and pelvic pain outside of periods. It may also lead to infertility, fatigue and bowel and bladder problems.

Endometriosis affects 1 in 10 women and those assigned female at birth, that's as many as diabetes yet very few people have even heard of it.

My 1 in 10 challenge

I wanted to get involved in raising awareness and funds for Endometriosis UK this Endometriosis awareness month and got to thinking about what I could do, what am I actually any good at? The theme being around the number 10, because this horrible disease affects 1 in 10 women. I can’t run 10 miles, or do 10,000 steps a day. Most physical challenges that are likely to gain any attention are unfortunately out of my grasp. So what am I good at? How can I get your attention?

I’m good at what so many women are good at - silence. Staying quiet when we are told pain is normal, or sometimes it happens for no reason; so just deal with it. Silent when every test comes back normal and you’re being told nothing is wrong with you. We are silent because history has taught us that being loud and demanding help gives us the diagnosis of hysteria, whereas silence is more graceful. Don’t make a fuss, nothing’s wrong so just push through that pain, and please, do it quietly.

So this March I would like the sound of our silence to do the talking for us. I am committing to 10 days worth of silence, that’s 240 hours of silence in March. From the 1st to the 30th of March, I will wear my ‘Endo silencer’ and stay silent for 8 hours each day. On the 31st of March, my silence will end. I will be in Newark precinct, outside Boyes, giving out information and talking about Endometriosis. I will answer any questions, and will be happy to talk about my experience so far with Endo. It would be great to see plenty of people there. Whether you suffer from Endo (or suspect you do), know someone who does, or even if I’ve just caught your attention and you’d like to learn more, I’d love to meet you and chat. I’d also be happy to offer support and signposting towards help if anyone is struggling on their journey to diagnosis, to getting treatment or anywhere else on their journey.

So please help me this Endometriosis month to ENDO the silence.

My journey so far

When I first started experiencing Endometriosis pains in 2018, I was at work on a sleep in. I woke up with pain in my back and pelvis, I was confused and concerned as the pain continued building, luckily my shift was ending and I went home and made an appointment with my GP, as the pain continued it eventually honed in on the lower right side of my body. (Eventually when I get my diagnosis, much further down the line, this is explained by the fact that my right ovary had become stuck to my uterus because of endometriosis lesions) Appendicitis was suspected and I was told to make my way to A and E, which is out of town. Lucky for me I have a wonderful family and one of my Aunts was able to take time away from work to get me there. A and E doctors were combative, asking why I thought I had Appendicitis even though I had previously had an ovarian cyst, I was shocked by their attitude, considering a GP had suspected this. I found some doctors don’t like it if someone else suggests a possible diagnosis, even if it’s coming from another doctor and not the patient. Doctors obviously were able to confirm I didn’t have appendicitis, or a cyst, nothing major was happening so I was referred back to my GP for further exploration.

The GP’s ran blood tests and sent me for ultrasound scans, prescribed strong painkillers like Tramadol that made me sick and then carried on repeating the same tests they had already tried. This all takes time as you wait for appointments for these tests that have already been done and shown nothing. I was in a never ending cycle of repeating the same thing over and over and expecting different results. Two years had passed and my patience had grown thin, with every flare up I had the pain got worse and worse. I called for an ambulance a few times as the pain was so bad that I would be passing out on my bathroom floor. Before I say this, I would like you to know I do value paramedics, they are life savers and perform such an important role in our community, but like all people, they are only human, they see drug seeking people a lot and unfortunately they assumed I was one of these people. They would eventually realise when they were helping me that I was actually in severe pain, their attitudes towards me would soften. Doctors in A and E were worse, on one occasion I was told that nothing had come back in tests, so nothing was wrong with me, sometimes pain happens for no reason. They stopped running any tests and would just ask me if the pain was gone and then send me straight back home again. With the attitudes I got again and again from the medical professionals the damage was done and after a few times I avoided calling for help unless I was absolutely desperate, eventually I stopped asking for an ambulance at all, I just suffered with the pain, trying tens machines and meditation and taking more pain killers than I should. At times I was scared the pain would kill me, eventually I hoped that it would. I did at my lowest point try to commit suicide by taking an overdose of pain medication, luckily I came to my senses as I knew this would just transfer my pain to my loved ones so I called for help. Till now only my mum, brother and sister knew about this, but I feel it’s an important part of the story, to show how the pain, medical gaslighting and absence of answers can drive someone to such despair. I lost my job and eventually my home because of this disease too. I also developed Fibromyalgia, where the central nervous system doesn’t function correctly and I believe this damage was caused by my body dealing with so much pain for so long. 6% of women with endometriosis also have fibromyalgia, whereas the percentage of the general population is only somewhere between 2% and 3.4%. As a side note this was only two years or so after my flare ups first started, on average it takes over 8 years to get a diagnosis.

I knew I couldn’t continue in this never ending circle so I started researching my symptoms in hopes of finding an answer. It didn’t take me long to come across Endometriosis, something I had never heard of. It’s something a lot of people have never heard of, even though it is as common as diabetes. I couldn’t understand why something this common and this debilitating wasn’t more widely known. Every woman should know about this disease, know what to look for and when to seek help. I learned as much as possible about the disease, suggested it to my GP and secured a referral to gynaecology. I began to feel the fluttering of hope, finally there was progress, the cycle was interrupted. When I eventually got my appointment after quite some time on a waiting list (covid had impacted waiting lists a lot) I told the consultant about my symptoms, the pain after sex, the type of dull building pain and where I had it (pelvis, back, under my ribs), the fact I had these flare ups during my cycle. He looked me dead in the eye and said you don’t have endometriosis. The hope that had been building while I waited for my appointment was dashed, my stomach turned as I realised I was going to have to fight for diagnosis and treatment. I asked him how he could possibly know that when the only accurate way to diagnose Endometriosis was with surgery and this was where he showed he hadn’t listened to what I had been saying, he had gotten stuck on the fact that I had suggested a possible reason for my pain, remember how I said some doctors don’t like that? He told me that I didn’t have pelvic pain, that it wasn’t cyclical (during my periods), that doctors just immediately send women to gynaecology without looking into anything else first. I had to remind him I had told him about my pelvic pain and the fact it was cyclical, and his rebuttal was that I had pain under my ribs and in my back, which doesn’t tally with endometriosis. I told him endometriosis can travel outside the pelvis. His reply, yes but that’s rare. He was determined this wasn’t endometriosis. I cried as our argument continued, I felt like I was a fingertip away from answers and he was blocking them. He ordered an ultrasound to check my kidneys (this particular test had already been done three times, but hey, run it again) I insisted on a laparoscopy if his test on my kidneys came back fine. He put me on the pill, which didn’t end up helping me.

After the my fourth kidney ultrasound that came back clean, I had an appointment with my consultant again. He insisted that I didn’t have endometriosis this time because my periods had mostly stopped but I was still getting pain. I argued that although my periods had mostly stopped except for some spotting, my flare ups still seemed to follow the same pattern as if I was still getting my periods, the pain was starting earlier each month and lasting longer. I wasn’t willing to give up this line of inquiry without having a diagnostic laparoscopy. The response was fine, but it will be a waste of time and there's a long waiting list. That’s fine, I want the surgery. Eventually after some more waiting, I had a surgery, thankfully not performed by my consultant, as at this point I honestly didn’t trust him. The surgeon found endometriosis in my pelvis, the adhesions were bad enough to stick my right ovary to my uterus, he removed the endometriosis. After my surgery, my pelvic pain and the pain I would feel in my right side stopped, but I was still getting the pain in my back and under my ribs. When I next saw my consultant, he asked me what made me think I had endometriosis. STILL so against the diagnosis! I was flabbergasted. I informed him it had been diagnosed during the laparoscopy. No apologies for his attitude, just oh ok. I let him know I was still getting my cyclical pain in my back and under my ribs, he insisted it must be my fibromyalgia, because other types of Endometriosis are rare. Again I insisted, The pain has always been happening at the same time as the pelvic pain, I have confirmed endometriosis in my pelvis, so although rare there is a chance it could have spread further. He offered to put me in a chemical menopause, because when my pain continued it would be proof that it wasn’t endometriosis. I accepted and I have now spent two years in a chemical menopause. As each three month injection runs out, I get a few painful days, but not as bad as it used to be, I can’t have HRT because when I started taking it the flare ups came back. What he hoped would prove me wrong hasn’t. After a year on the injection, I asked for surgery again, because I don’t want to have to be in a chemical menopause indefinitely, although it helps until it starts wearing off and I’m ready for the next injection, it can cause Osteoporosis, which is a thinning of the bones, I would obviously like to avoid this. With the first bit of of real honesty from my consultant, he told me he couldn’t deal with endometriosis outside of the pelvis. I appreciated this so much, I don’t mind if something is outside of a doctors expertise, no single person can be an expert on everything. I asked for a referral to an endometriosis clinic and I have been on that waiting list for over a year now. As I’ve been in a chemical menopause for over two years I will soon be having a scan to check my bone density. So that brings us to now, I’m waiting, I’ve grown quite good at that since 2018. I’m quietly hopeful for seeing an endometriosis specialist, but I also have dread mixed in there, I’ve experienced doctors who are attentive, helpful and caring, I’ve experienced doctors who are combative and care only about their egos, it’s the luck of the draw and I’m honestly not sure how much more fight I have left. I’m tired of fighting with doctors to get basic care. I avoid doctors at all costs now, if I can make do without them I do, because every appointment comes with a side of dread now, even when it’s with a doctor I know that will listen to me, it’s irrational when I know I’m going to be speaking to a ‘safe’ doctor, but that dread still claws at me and I think it always will.

I don’t want other women to have to go through what I went through. It’s been 8 years since the pain first started, it only took me about 3 and a half years to get my diagnosis. Some women would only just be getting close to a diagnosis now, the thought of this makes me want to weep. I only got my diagnosis as quickly as I did because I researched, I suggested the possibility and I fought tooth and nail to be listened to, not everyone can do that and frankly they shouldn’t have to, my journey has left me with medical trauma that has left me scared and dreading every interaction with doctors. Please help me to spread awareness of Endometriosis. With more awareness, women can have the knowledge they need to insist on more timely help. More awareness means doctors will have more experience of the disease and what pathways they need to send their patients on. More awareness will mean more research into less invasive diagnostic techniques, better treatment and better outcomes for the 1 in 10.

Thank you