Living with 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 10 % of the female population suffers from (to various degrees), yet it is mostly unknown.

Endometriosis is the second most common reason for infertility in European women; in my opinion, this fact alone should be enough to pump in money into endometriosis research.

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

I will now share some quite personal things, and I am doing this because I do not want other women to have to go through what I had to go through. I am also writing this to all of the partners of endometriosis patients who do not fully comprehend what this invisible illness is.

By Raquelgarcia80 [CC BY-SA 4.0 (http://creativecommons.org/licenses/by-sa/4.0)], via Wikimedia Commons

Endometriosis hurts very, very much. (Image credit: Raquelgarcia80)

 What is endometriosis?

Endometriosis is a bit of an enigma (due to the lagging in research); it is thought that some unfortunate women experience that 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. These nasty little blotches are called chocolate cysts and can be minuscule.  However, sometimes they grow and form large blood-filled cysts. The breaking of such a cyst hurts like a b%&#h and if they are too large, they need to be removed surgically (I think that the limit is at about 5 cm in diameter, but that varies between countries).

Here is a short and informative clip: what is endometriosis?

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 become high fever and excruciating 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.

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, and I don’t blame them, it ‘s hard to know; a belly that suddenly swells up after having eaten something wrong can be caused by many different things and it is particularly tricky since “wrong” seem not only to vary from patient to patient but according to the day of the cycle too. Genetic testing for gluten, fructose and lactose intolerance might turn out to be negative (though endometriosis can cause transient lactose intolerance).

There is nothing wrong with you, but you look six months pregnant, are tired and have constant pain (that varies from a dull background- to acute pain).

Common endometriosis-locations. By Female_anatomy.svg: Tsaitgaist derivative work: Hic et nunc (Female_anatomy.svg) [CC BY-SA 3.0 (http://creativecommons.org/licenses/by-sa/3.0) or GFDL (http://www.gnu.org/copyleft/fdl.html)], via Wikimedia Commons

Common locations of endometriosis.
(Image credit: Tsaitgaist derivative work: Hic et nunc (Female_anatomy.svg) )

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 / 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 (weheeey!!!). Water retention comes and goes and with it headaches and joint aches.

There are some studies that suggest that there are some autoimmune components to endometriosis where the body’s immune cells do not recognize the implants as “should not be there” which allows them to grow freely.

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 doctor’s.

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 is not just because you are a woman.

There is no cure for endometriosis, but there are several treatments and many other little tricks on how to cope: such as diet, meditation and sports.

How is endometriosis diagnosed?

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

There are several issues at hand here. Firstly, 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 myself referred to a psychologist for over a year, twice a week since I was apparently psychosomatically disturbed”.

These visits 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…

Secondly – do not ever let anyone tell you that excruciating period pains are typical. They.are.not.

Thirdly, “endo” is indeed a difficult disease to diagnose. 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.

It is difficult for a doctor when someone comes in with “stomach pain” particularly when the pain moves around and is just generally weird.  I completely understand that it is easy to wave it away and go on to the 15th patient you have in one hour, but please, just try to keep your eyes open for typical symptoms.

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!

Treatments

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.

One thing that I have learned the hard way is the danger of hanging out on an endometriosis forum where people are puking over how bad their treatments are working for them. Always remember that people are generally writing these things when they are the most sick. You will never hear from the women whose treatments worked well.

Often after a surgery, you will get progesterone prescribed. 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).

Contraceptive_pills_1000pxw (1)

The contraceptive pill. (Image credit: Anka Grzywacz)

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 (wohoo!!!). 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 with 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.

To end with a little sunshine story: I tried all sorts of hormonal treatments, but I got depressed by all of them (some women can take them and feel SPLENDID!) so 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!

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 density of progesterone receptors in the brain (and they may react more or less sensitive in different heads). If you eat progesterone (taking a pill), you will get the same concentrations in your entire body and this might be very good if you have endometriosis in stupid places like on the lung.

However, with an IUD, you might still stop the period and the bleeding into your belly at the same time as having very high progesterone concentrations locally around your ovaries and 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.

The IUD. By BruceBlaus. When using this image in external sources it can be cited as: Blausen.com staff. "Blausen gallery 2014". Wikiversity Journal of Medicine. DOI:10.15347/wjm/2014.010. ISSN 20018762. (Own work) [CC BY 3.0 (http://creativecommons.org/licenses/by/3.0)], via Wikimedia Commons

The IUD. DO NOT PUT IN A COPPER SPIRAL. THIS INCREASES BLEEDING AND IS BAD FOR ENDO-PATIENTS! (Image credit: BruceBlaus. Blausen.com staff)

This worked for me, perfectly! 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.

It 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.

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!

Eat well, sleep well, take all help you can from modern medicine, have fun and live life.

I AM NOT MY ILLNESS!

This is dedicated to all of my friends who have endometriosis.

Science Safely!

DSC_2528

…thinks that endometriosis can go fuck itself.

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.

Posted in Biology, Debate, Medicine and tagged , , , , .

Dr. Anna

Dr. Anna Zakrisson is a multifaceted biologist with degrees from world-renowned institutions such as Cambridge University, U.K. and the Max-Planck Institute in Germany. She has published a range of high-ranking scientific papers and crossed oceans on research vessels. She runs The Imaginarium science blog and YouTube channel and speaks English, German and Swedish fluently.

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