Signs of ENDOMETRIOSIS – What if your period pain is NOT normal?!

"But you don't look sick"

Doctor Anna's Imaginarium Anna Zakrisson - science communication consulting

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Signs of endometriosis – a women’s disease

The most common signs of endometriosis are excruciating period pains, bloating, long periods with excessive bleeding, tiredness. You will often receive comments such as “I have a hard time believing that your period can be that bad” or “But you don’t look sick”.

There is no cure for endometriosis.

Traditionally, research into illnesses and diseases in women have been fairly under-funded in comparison to the research that has been put into whatever unfortunate medical events that may strike down men. One example is the extremely common illness endometriosis, which approximately affects around 10 % of the female population (to various degrees), and is the second most common reason for infertility in European women.

Yet endometriosis remains unknown to most people.

I too have endometriosis and have several surgeries and gazillion hormonal therapies behind me.

There is no cure for endometriosis

What is endometriosis?

Endometriosis is a bit of an enigma (due to the lagging in research). Hence, there are many hypotheses to why endometriosis occur:

  • Retrogate Menstruation: one hypothesis has been the menstruation blood is not expelled through the usual routes but is emptied into the stomach cavity. There, the cells attach and start to grow, like benign tumors that bleed into the stomach cavity during menstruation.
  • Induction Theory: this hypothesis states that the peritroneal cells that line the inner of your abdomen are transformed into endometrial-like cells by hormones or immune factors.
  • Surgical Scar Implantation: it is possible that endometrial cells attach themselves to damaged tissue during a surgical incision.
  • Endometrial Cell Transport: it is also possible that endometrial cells are transported around the body with the lymphatic system.
  • Immune System Disorder: there is also some data available supporting that immune system dysfunctionalities may be a reason for endometriosis.

…or there may be a combination of several of these factors.

There seems to be a genetic component involved, so if your mother, sister or any other close female family member has been cursed with this f***wit of an affliction, there is a high likelihood that you might develop it too.

These nasty little endometrial-like implants are sometimes called chocolate cysts and can be minuscule.  However, sometimes they grow and form large blood-filled cysts that may need to be removed surgically if too large. The breaking of such a cyst hurts like a b***h. I know. Sometimes, the endometriosis is almost see-through and grows into organs. This is why you need a very skilled endometriosis incision expert for your surgery.

Endometriosis can also form lesions and scarring in your belly which can result in excruciating pains particularly if the intestines cannot move freely anymore; they might have become fused to your uterus or your stomach wall causing pain and discomfort during and after large and/or irregular meals.

In some rare instances, these lesions can cause the intestine to twist and become blocked. If you suddenly get a high fever and excruciating stomach pain, call an ambulance ASAP! Luckily, this is very rare.

Many endometriosis patients are sub-fertile. However, there are patients with children, myself being one of them. IVF might also still be successful.

Signs of endometriosis
Signs of endometriosis: cyst hotspots of an average patient.

IBS and Endometriosis

Many patients with the diagnosis IBS (irritable bowel syndrome) have endometriosis. IBS is often one of those diagnoses that you get when the doctor is not sure what the heck is going on. IBS is a syndrome and not an illness in itself.

Most likely, IBS is caused by a multitude of underlying conditions, one of which seems to be endometriosis. For some people, following IBS-friendly diets help. For me, I notice no difference at all.

PMS all the bloody time

Most endo-patients get severe period pains and also pain during ovulation. Their bleeding patterns sometimes change to a ridiculous 20 days out of 30 (like it did for me), and it is heavy. You turn anemic: you have constant hormonal surges from all those little hormonal implants in your belly and have PMS 24/7.

Water retention comes and goes and with it headaches and joint aches.

Due to the illness (pain and bleeding and, and, and…), as well as some of the hormonal treatments (not all!) you will most likely have zero interest in sexual activities when you have an episode. When you are in these episodes, you just need to remind yourself that it is OK and that after surgery or when it has calmed down, or you have found a treatment that works for you this will most likely go away.

Everyone is different, and we find different ways to cope with this. Ask for help when you are at the doc’s office.

No sex drive might to some sound like a minor thing, but translate this to a man who comes into the physician’s office and complains that he has so much pain that he can no longer have sex. He would be taken very seriously!

It is indeed very serious, and do not let anyone tell you that it isn’t, just because you are a woman.

Doctor Anna's Imaginarium Anna Zakrisson - science communication consulting

How is endometriosis diagnosed?

It took several years for me to become diagnosed, a story that is very common. It takes an average of ten years from the appearance of the first symptoms to diagnosis. I find this too long.

There are several issues at hand here. One is that many women find it hard to be taken seriously when they have stomach pains. It is very commonly put down to psychological reasons. Yes, the idea of the “hysterical woman” still exists in this darn day.

I was referred to a psychologist for over a year, twice a week since I was apparently psychosomatically disturbed”. These visits suddenly stopped after my emergency surgery when they realized that I had growths and lesions in my entire belly and that my pain had been very real. Well, I told you so…

Do not ever let anyone tell you that excruciating period pains are OK. They are not.

It is difficult to diagnose endometriosis

Though I’m of course angry at how long I had to wait and how little they believed me, I have to say a few words in the defense of the doctors treating me. It ‘s hard to take someone seriously who looks fine in the morning (I wasn’t really), screams of pain during lunch and then goes for a long walk in the evening.

I had a belly that suddenly swelled up after having eaten, but not always, I was tired and edgy and had extremely painful intercourse, and would probably have thought I were mad had I met myself, and so did my doctors.

However, the knowledge of many doctors is lagging by decades, and this should not be the case for such a common illness. Endometriosis patients often have cysts, but not all, therefore, to just rely on an ultrasound for diagnosis is a bad idea.

My case stands as a good example of this. Nothing could be seen on the ultrasound, but when they performed the laparoscopy, I had stage III endometriosis, and most of my inner organs had grown together and needed to be separated.

Do not ever let anyone tell you that excruciating period pains are OK.

Signs of endometriosis: my suggestions for doctors

I would suggest you to ask the patient if there have been changes in pain levels around the period and ovulation (none of my doctors asked me that). I would also give the patient a pain diary where intensity, as well as position of the pain is given (there are some wonderful apps for this).

Let the patient write in the diary for a month and then re-evaluate. Also, if bloating and pain are reduced by high-level progesterone (gestagen) treatment, it might very well be endometriosis. If the patient is coming back again and again with this weird pain and her life is restricted by it.

For God’s sake! Take it seriously!

A cure for endometriosis?

There are several treatments for endometriosis ranging from surgical removal of implants (try to do this as rarely as you can since the surgery itself cause scarring) and hormonal treatments.

Hormones and endometriosis

Often after a surgery, you will get hormones prescribed, such as progesterone. Progesterone is what you find in mini-pills, but you will likely get them at a much higher dosage. You should not take estrogen. Endometriosis grows from estrogen, but there are some rare instances where your doctor might prescribe the combined pill (estrogen + progesterone). Listen to your doctor!

Signs of endometriosis

The idea is to starve out the endo-implants that might have been missed during the surgery and to stop your period for being so heavy and if you are lucky – it might stop completely.

Other treatments that might be given post-surgery and more temporary are gonadotropin-releasing hormone (GnRH) agonists (that will put you in a temporary menopause) or testosterone treatment (this is given incredibly rarely due to the bearded side-effects that may not be reversible).

There are also some new medications that are so-called aromatase inhibitors (Visanne) that have proven successful in some women.

As with everything there are side-effects, but honestly, you cannot compare yourself to a healthy person, you must instead compare yourself with or without the treatment. Does it help? Does it make my daily life better? Will I have to put up with this treatment if I want children later?

These are all personal considerations and you should really talk it through with your doctor.

Signs of endometriosis

The IUD – my savior!

To end with a little sunshine story: I have tried all sorts of hormonal treatments, but I got depressed by all of them. However, don’t let my bodily reactions decide which treatment is the best for you.

Many women can take these medications and feel great!  Nonetheless, I stopped taking my meds and my condition worsened. I refused to insert an IUD (hormonal spiral) since I had read in so many forums that it was bad, bad, bad! I was a stubborn idiot.

One day I got the verbal equivalent of a *bitchslap* by my fantastic doctor at the Endometriosis Centre at Charité Berlin. I agreed to try the IUD after she explained why I should: We all have different numbers of progesterone receptors in the brain (and they may react more or less sensitive in different heads).

If you take progesterone (taking a pill), you will get the same concentrations throughout your entire body and this might be very good if you have endometriosis in stupid places like on the lung. However, this might cause your brain to get moody if you are so inclined.

With an IUD, you might still stop the period and the bleeding into your belly by having very high progesterone concentrations locally around your ovaries but very low concentrations in your head.

The low head concentrations of progesterone may be below your “progesterone threshold” so that your progesterone receptors in your brain do not go completely haywire and result in you feeling down and sad.

Nonetheless, t might take up to three months before your body has gotten used to your treatment. In these three months, you might experience mood swings and spotting and irregular bleeding. You need to have patience before you know for sure if the treatment is for you or not.

As with everything there are side-effects, but honestly, you cannot compare yourself to a healthy person, you must instead compare yourself
with or without the treatment.

My life with endometriosis

I am still in pain and I still have issues, but it is now all at a level that I can live with. Some days I cannot eat certain things and some days, I need to go sleep early as my body is not collaborating, but most of the time I feel bloody brilliant.

The IUD might not be the solution that works for you, but my point is that you need to try things before you know. Do not be a silly stubborn idiot as I was and do not let people on a forum tell you with all certainty what is best for you. Only you can know that in collaboration with your friendly doctor.

Find a good doctor at one of the amazing endometriosis centers that are popping up all over. I have had fantastic experiences with the ones in Uppsala, Sweden and Charité Berlin, Germany. These doctors have helped change my life and I am eternally grateful for that. Thank you!

Signs of endometriosis

These doctors have helped change my life and I am eternally grateful for that. Thank you!

Eat well, sleep well, take all help you can from modern medicine, have fun and live life. This is dedicated to all of my friends who have endometriosis.

Doctor Anna
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Brinton, Roberta Diaz, et al. “Progesterone receptors: form and function in brain.” Frontiers in neuroendocrinology 29.2 (2008): 313-339.
Riazi, Hedyeh, et al. “Clinical diagnosis of pelvic endometriosis: a scoping review.” BMC women’s health 15.1 (2015): 39.
Bourdel, Nicolas, et al. “Systematic review of endometriosis pain assessment: how to choose a scale?.” Human reproduction update 21.1 (2015): 136-152.
Zorbas, Konstantinos A., Konstantinos P. Economopoulos, and Nikos F. Vlahos. “Continuous versus cyclic oral contraceptives for the treatment of endometriosis: a systematic review.” Archives of gynecology and obstetrics292.1 (2015): 37-43.