7 THINGS NOT TO SAY TO A WOMAN WITH ENDO
Emma H. 04/07/2016
A personal view on what topics may be difficult
Endometriosis is an invisible but often very painful disease. If you know someone who suffers from endo, it is very likely they won’t talk about it too much. If they do, they’ll most probably mention it only briefly, without much detail. Endo still remains a taboo topic that is not much talked about.
The truth is that behind this calm surface physical and mental battles are often fought. By the way, this is true for many other types of chronic illness, too, especially autoimmune ones (whose symptoms are often not visible at all).
Let me share my take on what topics can be difficult to handle. Please know that it’s not because the affected woman would not want to share (even though it is a very personal and sensitive topic). The reason often is that these issues are extremely complex and, therefore, cannot be resolved during a coffee break at work. They need (and deserve) much more time and space than that.
And of course, every experience is individual and different for everyone. The personal choices will be different for each of us, too. You may not like the things that I say, and you may come to the conclusion that your path should be different. And that’s alright. No two people can lead exactly the same lives. Please consider this post (and the whole blog) as a contribution to a wider narrative. The more we talk about these things, the better!
1) “I know how painful it can get.“
There is no doubt that the modern days are full of stress, junk food and omnipresent toxins. And that more and more women experience painful periods. And there is no doubt that pain is subjective, you can hardly compare your levels of pain with how others perceive it. All you can do is rate your pain on a scale from 1 to 10. The problem is that if a woman has endometriosis, her “1” (negligible amount of pain) would be perceived as a “4” or “5” by a healthy woman with no chronic pain (and a “9” by a man!).
Endometriosis experts have classified endo pain as being of similar intensity as a heart attack [1]. Imagine having a heart attack every month! Moreover, if a woman has endometriosis, it is very likely she gets pain not only with her period but also during ovulation, sex, bowel movement, or at any other point in her cycle. Endometriosis affects about 1 in 10 women. That means that there is only a 10% chance that women around you experience the same levels of pain.
I’m not saying all this in order to invalidate other women’s experiences with menstruation. To the contrary, I believe that the whole society should work on achieving healthy female cycles and a healthy approach to femininity in general. Without pain, without fears, without taboos. But please keep in mind that if your friend or colleague makes a comment about how bad she’s feeling because of her period, and she also mentions she suffers from endometriosis (or you know that about her already), it is highly probable that she’s been in extreme pain for several days (non-stop!) and needs to channel all her energy to perform even the most basic tasks.
2) “Why don’t you take the pill?“
Contrary to the first question, this one usually comes from men. It seems to me that lately more and more women have taken more interest in their bodies and health, and look for gentler methods of birth control than some ten or twenty years ago.
Hormonal birth control is not the miraculous solution (in general!) we thought it was. Stuffing your body with synthetic hormones brings along many side effects (often very unpleasant, or even fatal). The following can be considered mild ones: weight gain, zero libido, hair loss, apathy, mood swings, gut and immune system damage, insomnia, irritability, depression, thyroid dysfunction, and many, many others. I warmly recommend the book by Dr. Jolene Brighten called Beyond the Pill.
In addition to that, the pill can also cause thrombosis and embolism. And these can be fatal. We mustn’t also forget long-term risks. Dr. Claudia Welch, in her book Balance Your Hormones, Balance Your Life [2], describes in great detail what long-term risks synthetic hormones bring along. It’s been proven that they increase the risk of cancer (breast cancer, ovarian cancer, as well as other types of estrogen-related cancer). Moreover, there have been speculations that prescribing oral contraceptives to very young women can lead to a suppression of their reproductive system before it can mature and activate its natural functions.
Once the pill is discontinued, the body has a hard time “figuring out” how to function properly and a healthy cycle is lost.
But that’s not all. Endometriosis IS NOT cured by oral contraceptives! The only thing that happens is that natural processes in the body are deactivated. The system stops functioning as it naturally would. (Let’s keep in mind, though, that the endocrine system is highly complex and blocking a part of it will negatively affect its other parts.) Once you decide to ditch the pill, endometriosis symptoms will simply come back. The same applies to menopause-inducing hormones that, too, are used to treat endo. (And by the way, the same applies to “treating” endo by getting pregnant. Here, one natural process is substituted by another natural one. Once pregnancy and lactation finish, the original processes are renewed, and endo symptoms come back.)
If you're considering discontinuing the pill, I warmly recommend the book by Dr. Jolene Brighten called Beyond the Pill.
3. “Why don’t you have a surgery?“
Another question that shows a typical approach of the modern age – wanting quick fixes, ideally with no effort whatsoever. Well, life (and health) simply doesn’t work that way.
Endometriosis can be confirmed with certainty only after a laparoscopic surgery. Medicine considers this a simple, common procedure. However, thousands of women all around the world are a proof of the fact that this solution often does not lead to a successful treatment of the disease (in many cases, endo "comes back" within two years because it had not been removed 100%). Moreover, many women find out after the surgery that their ovary(ies) and/or uterus had to be removed as well. (This is a step that isn’t effective either because the endometrium tissue elsewhere in the pelvic region will still release its own estrogen). Plus, it is not rare that after the surgery the tissue scars and glues together even more, which leads to more pain and related problems.
This all means that many times women have to undergo several surgeries (sometimes even four and more). Andrew C. Cook, in his book Stop Endometriosis and Pelvic Pain: What Every Woman and Her Doctor Need to Know [3], quotes The Pain and Quality of Life Survey that interviewed over 7,000 women from 52 countries: 70% of women said that their surgeries were ineffective or the outcome was worse than before the surgery.
I warmly recommend reading the Fractured Femininity article on this topic.
The good news is that there IS the other side of the coin. If you find a highly specialised endo surgeon, who only specialises in endometriosis excision, there is a high chance that surgery will cure the disease, and endo will never come back. (Excision is one of the techniques that is used to remove endo. It uses a blade to remove all the endometrium tissue (so called wide excision). Full excision usually lasts four hours or longer, it is crucial (and time consuming) to find and remove ALL endo tissue in the pelvic region. On the other hand, other techniques (ablation, coagulation, cautery) are usually based on using a laser to burn off endo tissue, and take usually up to two hours. However, they usually leave some endo behind and the symptoms re-appear. If endo excision is done correctly, only one single surgery is needed to completely cure the disease. The disease will not come back.)
I recommend reading the above mentioned book for further details on endo surgery, finding the right surgeon, and on what to ask before the procedure, and much more.
Because endometriosis is a systemic inflammatory disease (it is classified as “suspected autoimmune”), there is a good chance it can be managed naturally (through an anti-inflammatory diet, adequate physical activity, enough sleep, meditation, etc.). This is my personal choice (at least for now) for the reasons described above. It is true that this means that I don’t have a 100% confirmed diagnosis and I have to officially stick to my doctor’s verdict of “hormonal imbalance”. But even if it was not endo, my pain and symptoms linger (and I choose to neither have a surgery, nor take synthetic hormones). Which means my options remain the same – listen to my body, and choose gentle and natural healing methods. As you can see, the topic is pretty complicated. If you ask me this question, I will hardly be able to give you an answer over a cup of coffee.
And then there’s a slight variation to this comment. I was confronted with it consistently after my excision surgery in March 2017. It goes like this: “You’ve had your surgery, so all is good now, right?”
…Er… Not really. I refused a hysterectomy, even though I was diagnosed with endometriosis’ sister called adenomyosis. Basically, my uterus muscle is destroyed and I still have internal bleeding every month. It still gives me a lot of inflammation and pain. And then there is internal scarring and nerve damage. I still get various degrees of stabs, twitches and pains at certain times of the month. There’s not much one can do about that.
Everyone assuming I was all healthy once I had had my surgery was extremely frustrating to me. It took me months to explain to people that it simply doesn’t work that way. Yes, I did get better, I don’t regret having had a specialist excision surgery. But is my life honky dory ever since then? Unfortunately, surgery truly doesn’t seem to be the one quick solution everyone has been hoping for.
4. It will get better after you’ve had children.“
Having children is another extremely complex and sensitive topic. First of all, about 40% of women with endometriosis end up not being able to conceive. Surely, I don’t need to stress how painful this topic can be for a woman who wants to have children, but cannot. But mind you, no less painful can it be for a woman who does not want to have children (for whatever reason) and the people around her somehow refuse to understand that.
Second of all, the situation here is similar to point 1 (“I know how painful it can get.”). Let me repeat again: Endometriosis is miles away from general period pain and issues. It is true that pregnancy can work wonders on a woman’s body. The progress of many diseases (including autoimmune ones) slows down, or even reverses, during pregnancy and lactation. However, many diseases come back, or even get much worse afterwards.
So there is a slight hope that the situation will change after pregnancy. But the majority of women with endometriosis are not so lucky. Plus, I don’t think we should decide on creating a new life based on our desire to prevent pain. I personally would find that a very limited view.
5. “What are you plans…?“
…for the weekend, for example. Frankly, if you’ve heard me say that my belly hurts (oh, how innocent that sounds), I currently have one single plan for the next two hours or so – SURVIVE.
It is not visible at first sight, I know. But once I feel the need to tell someone that I’m not feeling well, this is what goes on inside my head: There’s a chance I will break into uncontrollable tears because I’ve been in pain for three days non-stop and it feels like I won’t be able to take ten more minutes of it. Or there’s a chance that I will start screaming hysterically that I can’t take it anymore (and then break into tears). Or even better, I will ask someone to be so kind and knock me out, so that I get a break from the pain (that would be awesome).
6. “We’ll do it next time!“
People say this usually after I’ve cancelled my social plans. Of course, I know they do it in order to let me know that it’s okay and they’re looking forward to seeing me some other time. But for someone who struggles with chronic pain, this can be an unwelcome burden. What if next time is in a month (when I will suffer just as I do now)? What if next time is in two weeks (when I will suffer from ovulation pain)? Or what if next time is in a week (when all I’ll want is to sleep non-stop over the weekend to regenerate and get some energy back)?
Why don’t we create a new definition of “next time”?
Next time = a spontaneous moment that is not planned, an “on a whim” decision when all the parties are free and feel like hanging out.
7. “Is it really that bad?“
You probably won’t come up with such a question. It’s downright rude. It says you don’t believe the person (who, by the way, has revealed a very sensitive spot), and that you think they make things up (why on earth would they?), or that you possibly think they’re a wimp.
If, however, you did come up with a similar question as a proof of your sincere interest in the person and/or in the matter, I’d still caution you to bite your tongue and remain silent. If you truly want to understand the disease, ask concrete questions, demand details. Now you understand (after having read this article) how complex the whole topic is. So if you truly and sincerely want to start talking about endometriosis, I find concrete questions are the best means.
Let me also stress, though: If you don’t really feel like discussing this topic, it’s alright and no-one will get mad at you. We all fight our own battles and there’s nothing wrong with minding your own business. Silent understanding and sympathy go a long way.
To sum up
I understand that these phrases are said to show that people sympathize. And we all are grateful for that. My experience shows that if a woman decides to talk about endometriosis at all, it is mostly for practical reasons. She does not care to seek attention or compassion.
I see my illness as my own battle, people can hardly help me with it. And that’s fine. The only thing I need from the people around me when I stay at home, cancel my plans, or don’t want to join anyone for dinner (I don’t want to talk to anyone, or smile at anyone, or engage in small talk, for that matter) is for them to simply be aware of my condition, to give me space, to accept me for who I am until my pain goes away, and I can become a positive shining smiley face again.
[2] Claudia Welch. Balance Your Hormones, Balance Your Life. Da Capo Press, 2011
[3] Andrew C. Cook. Stop Endometriosis and Pelvic Pain: What Every Woman and Her Doctor Need to Know. Femsana Press, 2012
