Endometriosis: Looking in from the Outside
When my sister began to have abdominal pain four years ago my immediate thoughts were actually the same as the doctors in a+e; possible urine infection, miscarriage, ectopic pregnancy, kidney stones, appendicitis amongst a few others. After ruling out all on the first list she was eventually (finally – it takes a while) left with a diagnosis of endometriosis. My initial reaction was ‘I’m sorry you have endo whatty whatsis?!!’ I had honestly never heard of the condition and had no idea what it was, what it did, how you got it and why you did. It sounds awful asking somebody about an illness that you haven’t heard of, but it probably sounds even worse when you say ‘well it can’t be that, there must be something else wrong, there is no reason for you to get it!’ But the truth was I didn’t want to hear that my little sister had a condition that I knew nothing about, that could affect her entire life and one that doctors knew so very little about. I was so confused listening to her explain this condition and still today it completely baffles me that endometriosis affects around 2 million women in the UK and yet there is so little known about it.
So what is known about endometriosis?
The following is from the NHS website:
Endometriosis is a common condition where tissue that behaves like the lining of the womb (the endometrium) is found outside the womb.
These pieces of tissue can be found in many different areas of the body, including:
- the ovaries and fallopian tubes
- outside the womb
- the lining of the inside of the abdomen
- the bowel or bladder
The condition is estimated to affect around 2 million women in the UK. Most of them are diagnosed between the ages of 25 and 40.
Endometriosis is rare in women who have been through the menopause.
The most common symptoms include:
- painful or heavy periods
- pain in the lower abdomen (tummy), pelvis or lower back
- pain during and after sex
- bleeding between periods
- difficulty getting pregnant
Most women with endometriosis get pain in the area between their hips and the tops of their legs. Some women experience this pain all the time.
Other symptoms may include:
persistent exhaustion and tiredness
discomfort when going to the toilet
bleeding from your rectum or blood in your poo
coughing blood – in rare cases when the endometriosis tissue is in the lung
There is not enough medical evidence to prove why it happens, but one theory is that the womb lining does not completely remove all of itself during a period so, instead, it embeds itself into the organs – and yes this can spread!
The only option to control it is through surgery, which is actually also the only way to properly diagnose it as it does not show up on scans. The pain can be mostly managed through pain killers, hot baths, hot water bottles, basically how you would treat period pains. This can lead to many people believing that is all this illness is – a bad period. Do not be fooled the pain is far worse, the effects are far more serious and operations are essential.
They will also recommend getting pregnant– not my happiest of memories when my little sister was told to do this by a doctor regardless of the fact that she wasn’t ready, didn’t have her own home, wasn’t married yet (she was engaged and wanted her dream wedding) and was living with her boyfriend’s Mum at the time. It’s a shame they push women down this route in order to try and combat the illness. Pregnancy obviously stops your period as does breastfeeding. So no periods=no lining being irritated and therefore no endometriosis taking grip.
When I heard all of these facts I swear I was in a complete daze listening to her (as well as putting my head in the sand hoping it would all go away). My sister was 26 and so fit and healthy, you would never know from looking at her that she lives with a chronic illness day in day out. And for me, it is true that an invisible illness is very hard to understand, accept and get your head around. I don’t mean to come across selfish in this statement but it is a common problem amongst many of us – if we can’t see an illness affecting somebody outwardly, it is much harder to take in.
I have now watched her go through 5 surgeries in 3 1/2 years and each time she goes under that anaesthetic I worry a little more than the previous time. She has successfully had the endometriosis removed each time, but it still continues to fight it’s way back into her womb and has even spread to the bladder once and to her appendix, which had to be removed. It has also created little endometriosis cysts on her ovaries in the past; you know coz the other areas just weren’t quite good enough so it felt it needed to add a little bonus endo in!!! With each op she fights her way back to being strong again and carries on with her life as normal as possible.
Now, what I haven’t told you is that she does NOT take pain killers. When you live with a chronic illness like this it is very easy to become sucked down the pain relief road and to become reliant on these. In some cases, some affected women have to give up work due to the painkillers being so strong that they cannot function sufficiently whilst on them. My sister has chosen a different route and it is one she is desperately trying to get across to many more women out there, to help them through their pain, discomfort, depression and low self-esteem. Her cure? EXERCISE!
Jen is a qualified pole and aerial hoop instructor and teaches classes 4 nights a week, plus gives additional private lessons as well as enjoying her own training sessions. She is passionate about her dance and fitness and stands firmly by the fact that she is pain-free during her workouts. The reason? Well, it’s pretty simple really. When you exercise your body produces endorphins, the happy hormones, and these have a positive impact on your body. Do you remember all those times at school when your P.E. teacher told you that joining in during your time of the month would help? Well, they weren’t lying!
Jen continues to astound me each time she achieves something new and each day when she tells me how much pain she is in yet still goes off and teaches in the evening. She rarely tells people about her condition as she does not want it to take over her life. Even when she enters competitions she does not state that she has a condition and that she has had operations, as she does not want this to overshadow her performance or sway the judges somehow – she doesn’t need the sympathy vote. This leads nicely on to my proudest moment… watching her win a competition whilst being in chronic pain for months in the lead-up.
I will let you decide if you think this looks like somebody living with a chronic illness:
Even through all of this, for me, being on the outside looking in I wish somebody would come up with a cure, I wish there was something I could do, I wish I could take away all of the pain and I wish that so many women didn’t have to go through this condition and live with it for the rest of their lives.
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3 thoughts on “Endometriosis: Looking in from the Outside”
Oh yes I recognise so much of this unfortunately as I am a fellow sufferer. I have even had a hysterectomy and I continue to have problems now. People have no idea what endometriosis is or dismiss it as nothing but it is absolutely a chronic illness. Thank you for highlighting this ?
Oh my goodness I am so sorry you also suffer. I have heard that hysterectomys aren’t always the answer. It’s such a strange illness and even more strange that they know so little about it. Jen recently also took part in my inspirational stories so there is another post on endo which covers her wedding. You should read that one too ?