Written by: Jess Porritt (@sowhatifisew / @yoga_with_jess on Instagram)
The month of March may be long gone but for those who spent it wearing yellow, lobbying medical professionals and actively telling anyone who would listen about the second most common gynaecological condition in the UK. For the 1 in 10 women in the UK living with endometriosis, the reality of this condition will never be far from forgotten. As with many gynaecological conditions endometriosis is vastly ignored and/or misunderstood by the general public, as society continues desperately to ignore anything relating to gynaecological health in order to avoid embarrassment.
We may celebrate pregnancy, but god forbid we discuss periods.
Endometriosis is a condition whereby the lining of the womb is found outside of the womb and it attaches to areas within your abdominal cavity. In medical terms, endometriosis is defined as the presence of normal mucosa (lining) which has undergone ectopic implantation and is known to compromise female fertility in up to 40% cases.
Endometriosis occurs due to a process referred to as retrograde menstruation which essential means we have our period backwards. Unlike in normal menstruation, where uterus lining sheds and exits the body through the vaginal canal, endometrium (womb lining) attaches to various surfaces in the abdominal cavity where it still likes to act like your womb lining. This means that the ectopic endometrium thickens throughout the month and then sheds when you have your period. Thus, enabling it to spread further inside your body causes sufferers to be in lots of pain throughout their menstrual cycle.
Any lady will tell you (if you dare ask her) that menstrual periods are painful enough when they are inside your uterus, let along inside your entire body.
Endometriosis causes excruciating levels of pain alongside any or all of the following:
- Joint, limb and back pain (throughout your cycle, particularly ovulation)
- Painful sexual intercourse
- Heavy bleeding
A major limitation into diagnosis and therefore early treatment is that ectopic endometrium doesn’t generally show up on any scans. The only way to truly diagnose endometriosis is through laparoscopic surgery.
Consequently, many cases of endometriosis go undiagnosed for unacceptable lengths of time. It is not uncommon for a women to discover she has the condition when they can’t get pregnant or after a misdiagnosis that leads to surgery. Whilst I appreciate few doctors want to risk the complications of surgery unnecessarily, there are still doctors who don’t believe endometriosis to be a real-life medical condition. I’m know periods are often painful, but sometimes it’s not that simple.
Jess was diagnosed with endometriosis when she was 21 after being rushed in for emergency surgery on her appendix. Here’s a short version of her experience with endometriosis – she also left some advise at the end –
“It feels strange to say I was lucky to find out this way, but I was and I am. No doctor can deny my symptoms and tell me that I must be making it up because there of pictures of the patches of endometriosis on my ovaries as well as on other ligaments and muscles. I will backtrack a little tell you how I got here.”
“When I was 15 years old, I started getting horrific period pains; hot flushes, nausea, pain so extreme that I couldn’t move. . . The nurses said if I wasn’t better in the morning they would take me to A&E because it was probably my appendix. In the morning, I woke up and my period had started. Having two or three days of agony around my period became normal and the nurse recommended I start the pill.”
“The pill helped a lot and continued to help until I was 18. It’s true that the two treatments for Endometriosis are surgery and hormones; they advise you to stay on the pill or the coil if you can. This is because the pill tricks your body into thinking that you’re pregnant so it can slow down or stop the spread of endometriosis throughout your body. However, when I was 18 my body went haywire and my periods started changing, then suddenly out of the blue they stopped.
For five months.
I saw a doctor and they thought I might have PCOS (polycystic ovary syndrome) and I was sent for tests but there was nothing there. After what felt like an eternity of switching pills and enduring crazy periods, I decided enough was enough and came off the pill completely. For me this was an excellent decision but it’s worth noting that lots of women find the pill or the coil very helpful with symptoms of endometriosis. When my best-friend said to me, ‘Didn’t you used to have bad period pains?’ I dismissed it and thought they would be fine by now and it was probably teenage hormones.”
“Accordingly, it was at that exact moment, whilst we were walking back from the shops that I got stabbing pains in my ribs and diaphragm. By the time we got home I could barely stand upright and I was found me on the kitchen floor unable to stand. Fast forward a few years and now here I am, 22 and waiting for my surgery to excise some of the tissue.”
“Living with endometriosis is weird; I know there are woman who have it much worse than I do and frankly, I whole-heartedly take off my hat off to them because my god it’s hard.”
“It really isn’t that unusual for me to have a day or two in the month when I can’t stand or I’m literally screaming with pain. I can feel myself ovulate and it’s not fun. To add to this, I get a horrific muscular stabbing pain for about one week whenever I need to pee, which makes me feel sick for a minute. To top it off, I haven’t even mentioned the morning sickness and hot flushes that I get every now and then.”
“Although it has taken a while to recognise the flip side, I have to admit to the retrospectively funny moments such that on the days where hormones control every cell in my body, I have been known to burst into tears after dropping my phone (or actually no apparent reason at all!) and typically end up consuming my body weight in chocolate fingers. Other women get horribly heavy periods or terrible bloating which can heavily affect their mental health. Calling out a woman for “being on her period” may be a joke, but please be sensitive that pain and/or mood swings are not a choice.”
“There are ways to cope though, this article isn’t just one long whinge-fest. Yes, endometriosis is horrible, but I promise there are steps that can be taken for ourselves and for the new generation.”
“Daily life with endometriosis is all about accepting where you are on that day and going with it. There are some days when I feel great, I can go for a run, do some shadow boxing or spend all day walking around and being social. There are also days when I can’t go to work because my body is agony and standing up isn’t possible. There are days when I just feel exhausted and I’m very nearly sick every time I eat and there are days when a nice yoga session and a sit down are all I need to feel normal.
So I’m going to finish this post with my four top tips for living with endometriosis.
1. Learn – Literally, learn everything you physically can about your condition, your body, your cycle and take ownership of it. Keep a journal of symptoms and read about the scientific side of things; ask your consultant loads of questions. The more you know, the less scary your condition is; instead of being a huge nebulous blob of fear and emotion, it becomes a list of manageable symptoms. I know my cycle to theday, I know what symptoms I get when and trust me it makes life quite a bit easier. I would recommend using the app Clue which I have since suggested to a few friends – it’s so great to see them swear by it too
2. Find what works for you! – My boyfriend and I often joke that about 80% of my problems can be solved by a hot water bottle and that works for me. Some days doing some yoga or exercise really helps, other times I’m all about hot baths, regular painkillers and hibernating like a bear. It’s a chronic condition so invest some time in self-care and find strategies that help you in every situation.
3. Accept support – Recently, I discovered that endometriosis is something you can take to occupational health at your workplace and see if they recommend any adjustments for you. I’m getting different type of chair at work to support my lower back, where I happen to get a lot of the associated pain and have since found that I don’t have to take painkillers constantly. Equally if friends and family want to help, let them. Tell them what you need and what helps. I recently had a bad bout of pain when I went home and when I told my family that I would need painkillers and a hot water bottle and possibly space to either be sick or curl up, they felt better because they knew a couple of concrete things they could do to help me.
4. Don’t stay silent (in fact, do the opposite!) – This is something you can do for yourself or your friends, children, co-workers. If you have horrific periods and you haven’t been diagnosed and/or if you are getting symptoms that don’t seem right (such as passing out, throwing up, unable to stand) please go and give your GP a visit. If they don’t seriously, go and see another! Painkillers simply are not enough – they may (or may not!) numb the pain but they are not the cure! Menstrual health is going to be taught in British Schools as of 2020 but we need to make sure that all of the women around us KNOW when something isn’t right and have the confidence to go and see a doctor.”
For more information and advise on the signs and symptoms of endometriosis, please visit Endometriosis UK. I’d like to give a massive thank you to Jess Porritt for sharing her story and encouraging me to learn about this undermined disease and its incidence rates.
Featured Image by Oberholster Venita from Pixabay