So I have decided to do one of those photo challenges that sometimes do the rounds on Instagram.
Most of the time I think a big fat MEH to this sort of thing but this one is a subject close to my heart. Actually a bit south of my heart to be more accurate. More around the pelvic area, tangled around my ovaries and a little bit on and around the bowels.
You see, endometriosis, still a fairly unknown disease doesn’t just effect the reproductive area of women sufferers. Bloody cells similar to those of the lining of the womb can actually travel up as far as the brain, no way of escaping the body. And each time a woman with endo has a period, these patches of bloody hell inflame and bleed too, wherever they may be, causing havoc and excruciating, twisting, stabbing pains, often rendering the sufferer unable to do everyday tasks.
I’ve covered my discovery of endo in my body on previous posts when I was finally diagnosed in 2016 after trying for a baby for a few years prior, to no avail. I’d heard of it but never wanted to entertain that I might have it, but my husband had no idea what it was. Over the years I was told it was period pain which was ‘normal’. And then that I had IBS. I’d cancel social arrangements if they fell around my period, or dose myself up to the eyeballs if I had to attend. I’ve had to leave work meetings, embarrassingly sometimes half way through a sentence including when I was once interviewing someone for a job(!), making up some random excuse while I tried to cope with the blinding pain somewhere as private as possible.
It left me feeling really unsexy, totally at the mercy of my insides, no two days the same.
Anyway, I thought I’d blog my photo challenge rather than just Insta story it.
Week one is covering the following areas and yes, I’ve skipped ahead slightly in posting this blog but what you gonna do? I’ve skipped ahead because today my husband John has published a podcast interview I did with him last week, all about endo and a bit about fertility. So thought this post would be a good tie in and resource for more info for anyone who checks that out.
Where were we…
Day 1: You
Day 2: Endometriosis
Day 3: Your Symptoms
Day 4: Diagnosis
Day 5: Medications/treatments
Day 6: Years with Endo
Day 7: Hobbies/Interests
So here we go…
You (well, me)
Vicky, 36 years old. Diagnosed in 2016 after trying for a baby with no joy and after years of wrongly labelled pain. I work in Marketing in TV, prior to that at a record label. I have a tiny sausage dog and a wonderful husband.
‘We’d like to investigate to see if you have Endometriosis’. I’ll never forget when the gynae consultant I was finally referred to in 2016 uttered these words. I knew at a surface level what Endo was and I knew that I categorically didn’t want it thanks. I’m pretty peeved about endometriosis and the devastating effect it can have on some sufferers. I consider myself really lucky that despite my endo being grade 2/3 (out of 4) I still have a functioning reproductive system in terms of eggs of a decent quality and since my surgery a freed up right ovary that had previously been smothered and webbed down with endo patches in entirely the wrong location.
Unlike some sufferers, my symptoms usually peak around my periods. Some people have them all throughout the month. Mine flare up randomly at other times and I often have to excuse myself to get some air or run to the loo but for the most part, around my period I am utterly consumed by it. Typically the day before my period comes I start getting hot, spiky, jabbing pains around my pelvis, groin and lower back. They can make me feel sick. I just want to curl up and wait for them to pass in a few days. I ache all down my thighs and also get a sore arse. Then when my period starts I get a bad stomach, the spikiness radiates all over my pelvic region and intensifies to a point where I just don’t know what to do with myself. My mood is also greatly altered as I put on a fake smile and try to get by. Yeah, I’m fine. Honest. Since being in my thirties my periods have got lighter, so the flow of blood each month just doesn’t match up with the intensity of the pain in a way. Surely that amount of internal pain means I should be haemorrhaging no? No, the pain is contained inside, hidden from view. I find that stress really brings on my pains. I’ve said that to my doctors before who just don’t entertain it. When I feel stressed, I can feel the pain immediately down below, it manifests there. But no one tends to listens to that. Must be in my head right? Cool.
March 2016 when I underwent laparoscopic surgery plus a hysteroscopy, the standard approach for investigating for endo and to treat at the same time if found. And boy they found it. See here for the main rundown of the day plus more pics of my insides. I woke up from the surgery in agony, so groggy and sore in an area that no woman should feel pain outside of giving birth. It’s a sensitive, precious area that absolutely shouldn’t be burnt and lasered and cut. They told me I had stage 2-3 endometriosis which refers to the amount of locations it is found in rather than the severity of the overall condition. They’d also found a few cysts and noted that I also had adhesions. I was told that I was now cleaned up inside and should be super fertile….hahahahha. Sigh.
Medications / treatments
Over the years I’ve been on THE PILL even when I wasn’t sexually active to regulate my cycles and if I chose to, I could just skip a period one month if I fancied! I mean, WTAF. How is that recommended by a doctor? To entirely mess with your cycle. I’m not a fan of the pill in may ways. Various ones I tried made me MENTAL, put on weight, feel generally dire. And are we surprised? Fake hormones in weird doses that mess up your existing bodily functions. We are meant to have a monthly cycle, a release of our womb linings. Taking anything that inhibits this doesn’t sound good to me on a surface level. Painkillers have also been prescribed a plenty. When I was told I had IBS (wrong diagnosis, should’ve been endo all along) I was given pills for that too.
Then when I was FINALLY told I had endo, I took it upon myself to do all the research, meet interesting and clued up people (not just GPs or people who like to cut you open) to tackle it in a more natural way over the course of a year. I visited the endometriosis author and nutritionist Dian Shepperson Mills who tweaked my diet for both endo and fertility factors, started taking her recommended prescription of supplements and started to see a vast improvement. All because of diet changes, go figure.
After a few months of that protocol my yoga teacher recommended an Ayurvedic doctor which I was fascinated by, so I went to see her and she determined that my body type basically translated to FIRE. My insides were too inflamed, too hot. Sure. She had me pull back on foods like tomatoes, mango, papaya, nuts, white potatoes which can all be heating for the body and again I saw improvements.
Finally when I really started to ramp up the focus on trying to have a baby I turned to Chinese medicine, specifically acupuncture.
Hannah Watson is my go to lady for this wonderful therapy, based in her home clinic in Much Hadham (Hertford) and Ginger Health (St Albans). I would see her once a week as she worked teeny tiny needles into various points in my bod to start to bring my body back into harmony. She worked on my endo, my anxiety, my ovaries and womb and general reproductive system to bring back the balance and optimum functioning. Ovulation returned to normal, my endo pains greatly reduced and my general sense of wellbeing on the rise. She also introduced me to Moxa – a solidified chinese herb in the shape of a long stick that you light up at one end until it burns bright red and hold above the womb for around 20 mins, hovering it all around the pelvis. Heating up the womb between the end of your period and before ovulation is key for creating a hospitable environment for pregnancy to occur. And besides that, the endo pain was crushed because of it. The sweet sweet heat.
I also took to regular castor oil therapy at home. Finding an hour to switch off while a soaked cloth was laid over my womb and heated by a hot water bottle. Castor Oil is said to be able to break up stagnation, tumours, accumulations…so as an endo therapy it is potentially marvellous. Again the heat worked wonders for me too, my go to comforter.
Years with Endo
I mean who the hell knows? Since I started my periods as a young teenager? The great unknown as with a great many sufferers. Maybe 20? Maybe 15? I seriously don’t know which is a real frustration. Had I known exactly when it had occurred I would have been better informed with regards fertility and had more options at a younger age.
Hobbies / Interests
Not sure if this is a general question or more about what aspects of these things have been effected by endo. But in short…
I love yoga. The grace and restorative nature of it. If you get a good teacher you’re on to a winner. I am currently enjoying Living Yoga London with Rhyanne once a week plus do my own stretches at home. I recently bought a yoga bolster which is probably my favourite purchase of late and when I’m feeling a bit out of alignment I straddle that badboy (oh shush) to reset. If I’m feeling it, I love kettle bell workouts and pilates too but these more exertive activities can be hindered by pain if i’ve got a flare up.
When I’m feeling low or bleugh I will often force myself to go for a walk in the fields, whatever the weather. It fixes that shit immediately. Or a walk with my dog to the woods where we’ll often just sit on a tree stump and watch and listen.
I love getaways, to literally anywhere, home or abroad. With my hubs and often mini saussie dog. I love exploring and stumbling on new places, meeting new faces.
I really enjoy writing and want that to be a focus for my future.
And yes, cliche, I love a good book. Current read is ‘Everything I Know About Love’ by Dolly Alderton.
Now, on to week two.
You can follow my endo pic challenge posts on my Instagram Stories here.