Are you worried something isn’t quite right with your periods? Been told you may be suffering from Endometriosis? Or have a friend or family member who is?
Whether you’re concerned, or simply want to understand what living with the disease is like, you’ve come to the right place.
So let’s reveal the truth about what Endometriosis feels like.
What IS Endometriosis?
I don’t want to dwell on this question, I want to get straight into what Endometriosis feels like, and Google is your homeboy for an explanation of the disease itself. But I will give a brief, and I mean brief, overview.
Endometriosis (also known as Endo) is a disease that causes tissue that is like the lining of your womb, called endometrial tissue, to grow outside of the womb.
This tissue acts as endometrial tissue does. It swells and bleeds according to your hormones. The only difference is that there is nowhere for the blood to go, only to pool in your pelvis!
It can cause scar tissue. It can attach most commonly to your womb, bladder, bowels, the ligaments, muscles, and pelvic walls that encase them. It can also attach these organs together. In rarer cases, it can be found elsewhere in the body too.
As I said, brief. I’m not a medical professional, so if you’d like to know more there are plenty of resources available, like this one by Endometriosis UK.
Setting the record straight
Before I begin, I want to make the record clear. Endometriosis is an extremely variable disaese.
It is said that 1 in 10 women have it, and that the extent of the disease in your body does not directly correlate to the symptoms you experience or the pain levels you experience.
This means that you can have very light, superficial endometrial tissue on a very small area on your womb, for example, and have severe chronic pain that is disabling.
And on the flip side, the disease could be so advanced that it has stuck your organs to each other, called by the term ‘frozen pelvis’, but be totally unaware that anything was even wrong as you have no pain or symptoms.
Therefore this post is a view into what MY endometriosis feels like. The next person who suffers may have some, all, or none of the issues I write about here. With that said, lets see what Endometriosis feels like.
One of the main symptoms to start us off with what Endometriosis feels like, is period pain. And no, I know, everyone gets period pain.
But this is the type of period pain that disables you, it means you cant go to work, you can’t attend school, hell you can’t even stand up to get there. It might be that you can’t move, you’re sick from pain or pass out.
Your periods should not stop you from functioning. It is not normal. If they do, see your GP. If they dismiss you, get a second opinion and ask reception if there is a GP with an interest in gynaecology.
I think I have a relatively high pain threshold. At that time of the month, I physically can’t stand, I can’t walk, and I can’t sit. All I can do is lay in bed and wait for it to pass. I’ve been known to hobble to the toilet or crawl up the stairs.
It’s not limited to the usual cramps either. On top of abdominal pain, I get lower backache (that’s just re-appeared in the last two months, from my teens), groin ache, pains in my legs and butt, and more. In fact, when my periods first started back up, the only period pain I had was groin ache!
I’d also like to point out that to have Endo you need to suffer from long or heavy periods either, that is often a symptom of Adenomyosis. I generally have a period that lasts between 24-48 hours and is very light, but my pain goes on for days before and days after it’s over.
Oh and did I mention that those periods can happen whenever? (Dads wedding, 10 days after the last one, beige jumpsuit, and 10 minutes before my speech. Need I say more.)
You thought the pains were only once a month?
Ovulation, when that little searing hot lava feeling ball of an egg gets released into your Fallopian tube. And for two days you ponder upon whether it feels more like someone is twisting a steak knife, or a Philips head screwdriver into your ovary.
I’ve noted how these pains tend to start just as you are pouring boiling water to make yourself a nice cup of coffee. Then all of a sudden….
I didn’t start off having ovulation pains. I’d say it took about 10 months or so. But now? Now I have to plan for it like I do my period.
Again, trying to stand is futile, and I have been found on the kitchen floor more than once curled up in a ball because the pain is so bad it knocks me off my feet. So I just have to settle into bed and ride it out.
Other Endometriosis Pain
When we consider what Endometriosis feels like, we can’t forget that the Endometriosis pains aren’t always limited to your cycle.
For me, a baseline background pain is pretty standard now. I wake up most mornings, when it isn’t either of the two times above, on a pain scale of about a 2-3/10. Most days, by mid-morning I can hit my peak. And often go to bed on an evening as a 5-6/10.
Other pains consist of, but not exclusive to, abdominal cramps, hip ache, butt pain, groin ache, ovary stabs, scar tissue pulls, shooting down inner thigh, numb or tingling legs, aching tops of feet, vagina pain, feeling like someones kicked your pelvic bone, and much, much more.
As I said earlier, it can attach to your bladder and bowels, so ibs, pain pooping, or pain and issues urinating aren’t uncommon either.
Honestly, I whimper when I pee, as I get that screwdriver feeling between my bellybutton and right hip each time, and it lasts anywhere from half an hour to all day.
Due to the amount of pain caused by Endo, it’s hardly surprising that it can limit your mobility.
I get the groin pain that it all started with if I walk over 50 meters, not only that, but it lasts 2 days after too. This means that it really limits how much I can walk, and how far. Especially if being out of bed the next day is a necessity.
People often seem shocked that Endo can cause such mobility issues, while they don’t say so in words, their tone says it all. Often asking what else you have too? But when it can affect everyone so differently, it makes sense that for some, mobility can be affected when it comes to considering what Endometriosis feels like.
I use a walking stick on a daily basis now, but am also looking into getting a wheelchair too, to enable me to do the things I used to love without putting myself through the pain and days out of action.
For those of you unsure about using mobility aids I want to say this: It is okay to use a walking stick, or a wheelchair if you think it will help you. There is no requirement of you, these things are not limited to the elderly or paralysed. If you think it will help your day to day living, try it!
Fatigue is sooooo much more than only getting a few hours sleep and walking up tired. For those people reading without disablity or chronic illness, please think of this the next time you want to say “yeah, I’m tired too.”
Fatigue is not getting a wink of sleep because you’ve been kept awake all night by something, be it pain or the unknown. It is sleeping 12 hours a night and waking up still exhausted.
Fatigue is having to take a rest half way through putting the sheets on the bed, or half way to the washer to put your clothes in. It is feeling fine, seeing a friend or family member or half an hour, then having to spend the rest of the day in bed because it has used all your energy.
Energy isn’t something you can rely on when you have a chronic illness or disability, and that is included in what endometriosis feels like. You may wake up one morning with enough energy to conquer the world, but one task may deplete it all. Or you may wake up from the longest most restful sleep you’ve ever had, with not even enough energy to get dressed.
If you’re interested in understanding more about this, I urge you to look up the spoon theory. The origin story of this theory, you can read here. The theory itself has coined the term ‘spoonies,’ and in my home, now a common theme is heard from me of “I just don’t have the spoons.”
Ok so this may be less of what Endometriosis feels like physically, more of how it affects your body, then, what Endometriosis feels like emotionally.
For many women with Endo, problems are had when trying to concieve. Then, if they are successful, many women either have their symptoms alleviated for 9 months, or many feel far worse off. Some people lose all sympoms after giving birth, many don’t.
This is why, as someone with Endometriosis, you will always be told to “get pregnant, because my cousins, friends, sister had a baby and now she’s fine.”
If you are one of those people who say such a thing, know this, pregnancy is not a treatment for Endometriosis. You may be telling someone to get pregnant that can’t for fertility reasons, or that just doesn’t want kids. You may also end up being the reason that someone is out there, in the future, worse off than they were with the disease, now with a child to care for too. Please think before you speak.
Personally, I don’t think I want children. This may change, and that is the reason I came off the depo injection and this whole thing unravelled in the first place. But for now I don’t.
My insistence on this is helped along by the fact that I don’t know if I CAN. Why would I want to build myself up to having children, to then be shot down, finding out I can’t bear one?
And I’m sure the same is for many women, in different ways.
Unfortunately, the doctors can only tell you how the Endometriosis visibly affects your reproductive organs from the outside. You won’t know how they are really affected until you try.
This means that those who are severely affected have had their dreams come true, conceiving after they were told the worst. Others, have been on the flip side of the coin, being told it looks fine, only to find out that no matter how hard they try, they are unsuccessful.
What Endometriosis Feels like isn’t all about the physical aspect of things. It’s a mental battle.
If you struggle to understand how depression could affect someone living with Endometriosis, even after reading through all of the above, I honestly would have no words.
Not only do we deal with the above on a daily basis, but so much more too. We deal with the comments, and reactions of “so it’s just a bad period?” The stigma surrounding periods meaning that it is still a difficult disease to discuss, sometime even with medical professionals!
We deal with the amount of loss in our lives. Loss of plans made, loss of friends,e loss of mobility, loss of fertility, loss of freedom, loss of work, loss of energy, loss of ourselves. Loss, loss, loss, and I could go on.
There is so much more than meets the eye. Guilt is a major player to battle too. Guilt of cancelling plans, of having to be looked after and cared for, of not being able to do your ‘fair share.’
Then you have the difficulties in getting a diagnosis too. You can be poked, prodded, scanned where you never realised was possible to scan, and at the end of it be told the only way to know for sure, is through surgery. That’s if you’re lucky enough not to be dismissed after the scans show nothing of course.
It can be such a difficult condition to come to terms with, and likely a lot of that is due to stigma. I honestly think that had I been diagnosed with a different, more well known disease, that my mental health and acceptance to the physical affects would have been a different matter. Now don’t get me wrong here, I’m not saying that it would be easy with artiritis for example, because I’m not, by any means.
But what I am saying is when something is dismissed by many (and it’s not just men) as “just womens issues” it can make the journey harder.
Oh, and by the way, you don’t have to say it. We can tell that you’re thinking it, your face and body language say it all.
Treatment Side Effects
How could I leave treatment out of the mix?! I mean, we really have very few options when it comes to treatment.
You have your normal birth control, that may or may not make it better. Hell, it might make it worse by making you bleed constantly too.
You have a laprascopy. Invasive surgery. That is where they inflate your stomach with gas, go in through keyhole incisions and burn or cut the little buggers off. It might work, and they never come back. They might be back in a few months. You’ve got luck of the draw. Or, it might make your pain worse. It might start new pains, and now you have scar tissue to contend with too.
Oh, this is also the only certain way to be diagnosed.
And finaly you have drugs like Prostap. Or for you Americans out there, Zoladex. Prostap is what I know so lets focus on that. If you can’t tell by the name, Endo is not what this drug is intended to treat. Instead, it is for… did you get it? Prostate cancer! Yup.
When used in women, these drugs effectively shut your hormones off, and induce a chemical menopause. You’ll often be put on to Hormone Replacement Treatment (HRT), like if you were going through menopause for real, to offset the symptoms of it and the additional loss of bone density.
While this may bring some ease to your Endo symptoms, it can also bring its own cohort of issues. Not to mention it starts to lose effectiveness almost as soon as you’ve felt the benefit. After 3 months I was pretty much back to ground zero.
And that’s about it other than pain killers (that are often opiates, and we all know the complications with relying on those, but there’s a significant lack of options).
As I mentioned in my intros of sorts, answering the question of what endometriosis feels like, is not a simple feat.
While the above is some attempt to enlighten some, and make others feel like they are not alone, please do not take what I have written as gospel.
Many people have varying symptoms, and as I said at the beginning, some people will never even know they have the disease due to lack of symptoms.
Just because are diagnosed with Endo, does not mean that you will experience everything on this post. Likewise, you may experience an array of things that aren’t listed here. Even my symptoms do not stop here, but I’ve noted the most persistent and those with most effect.
One important takeaway point that I would like to make is this, you won’t know how someone’s illness is really affecting them, without speaking to them. So if you want to help, offer up an ear, without judgement. But please, don’t be offended if you’re turned down, it’s not about you.
So tell me, if you have Endo, how does this list compare to what Endometriosis feels like for you?
If you are reading this for a friend, family member, or just out of interest, let me know if it has helped to better your understanding of an otherwise misunderstood chronic illness!
As mentioned in this post, the disease is so different for everyone. So, I feel it is important to educate yourself on the experiences of multiple women, and not just base the information on one person’s accounts. With that said, Chantal of Endo-warrior has a fantastic post you can check out by clicking here!
If you suffer with Endometriosis and want to travel, here is a post with some hacks to make it easier!