Dienstag, 1. September 2015

How endometriosis keeps the quality of life of many women at bay, and that too many doctors even know nothing about this disease

Yes. Take a deep breath and sit down. Today I unpack with a very personal issue. One topic which I realized only for a few months ago that it has caused me all the bad sufferings in the past 26 years.

A pain that made me cry so much over the past months. And with each cycle, it got worse. 

A pain I know, so many women suffer from!

It is the chronic disease endometriosis. Before you read on, for me is very important to emphasize
that these are my own experiences and my own understanding about this disease. (In the german version of this text I mention some helpful links where you can get professional and objective information. In Switzerland, it is believed that 10% of women (in Germany we speak of 20%) suffer on Endo. Further: I apologize, that my english is not perfect. I am a Swisslady and do not talk english every day.) :-)

I suffered for too long, I know that now! But everything has a meaning. Finally, it was this spring, I "knocked on the table":

I decided that I put an end to it there and then!


Let me begin with explaining endometriosis:

Endometriosis (lat. "Endometrium = cervical mucous") is a chronic disease of the
uterus which is located in the inside of the uterus. This mucous is expelled in the abdominal cavity of diseased women. There, the mucous can be deposited on various points (endometriosis):

  • On the ovaries / fallopian tubes
  • In the vagina
  • In the intestine
  • In the tissue between the rectum and vagina
  • In / at the bladder
  • In ureters
  • rarely in other organs such as the lungs or nervous

Since the endo-mucous are hormone-dependent, they also bleed and produce cramps at every cycle.

The more they spread, depending on the location of fixing, the less or very bad the woman suffers in these convulsions and internal mini bleedings.

Depending on whether organs are affected and how strengthens the endo-mucous grow into them, the sooner they get ill. The longer the disease is left untreated, the worse the symptoms become. Each surgery adhesions arise, which unfortunately reinforce the complaints.

There is no cure, except the removal of the uterus, which usually is discussed only for women aged 40 and over. And the cure also depends on various items, which are very individual from one woman to the other.


Until that point, a woman is stuck in a vicious circle, from the production of endo-herd, their removal, hormone revenue, bacterial infections, infection of other organs, formation of surgical adhesions, short complaints freedom after surgery, new endo-mucous, loss of workplace a.s.o.

The consequences of endometriosis are very individual and can include:

  • Strong menstrual cramps
  • Back pain, sciatica
  • Diffuse abdominal pain
  • Swelling / distension of the abdomen (looks like being pregnant)
  • Pain during and / or after intercourse
  • Blood in the urine and / or dejection, pain when urinating or defecating
  • Infertility
  • Fatigue, lassitude, nausea (up to vomiting), migraines, blood pressure problems, heart rate fluctuations
  • psychological impairments as a result of the above: melancholy, depressive moods, despair, not-understanding, can be questioned by itself, and much more.

Many women get socially large problems. The spasms can require hours to days of bed rest. The nervous system is extremely irritable and affected women often have no power to take on additional work load.
This in itself causes a big conflict as the fear of facing lack of understanding, or even loosing the job is immense. 

Yet, you know that from one point to the next you wake up and have no strength to get through the day.
People around you start stamping this as 'lazy' or 'hypersensitive'. Even those, dearest to your heart.
In addition, many women start on an odyssey of doctor visits, surgery and medication.
All this drags heavily on our forces, our positive attitude and detracts dramatically from the quality of life .
What saddens me the most is that relationships fall to pieces because of it all. Because some endo-women hardly endure sex (which is very different) or the hours after, they can connect no joy and no desire with it anymore.  

This is as frustrating for men, as it is for women. 

Some men manage to stay patient and support their partners - but some break under the situation.
Lack of support makes everything even more difficult!

'Why will I not get grandchildren from you?' - a question commonly asked by mothers of affected endo patients. 

Imagine what is is like, when you try to give an answer and all you get is a blank reaction? 
Or friends no longer want to hear about your pain? Your boss is unwilling to pay for your 'failures'?

From my own experience I can tell you how much relief can bring just a good diagnosis and proper education about this disease.

If you yourself finally know why you function not "normally". That we are not mentally ill, but that the weak nerves is a logical and comprehensible symptom of endometriosis. If the partner knows why his wife is suffering! When the family realises that this chronic disease is to take "real" and serious!

However, what has shocked me the most, is the fact that most doctors - even gynecologists - know nothing or too little about endometriosis.

It is an unfortunate fact that even medical specialists, gynecologists, proctologists and other specialists of internal medicine are unfamiliar with this disease!
The fact that none of us women accurately identifies the same picture of symptoms, makes it definitely more difficult. The disease shows itself very individually. Many women do not even have symptoms, although perhaps already present cysts or adenomyosis (special form of endo only in the uterus). 


But why don't doctors do some research after consulting us? Inquiring, willing not to give up? Why do they "sell" interventions by interventions, with which we even or mostly get treated wrong?

My path started as I was 14 years old.

At that time the doctors were removed a two kilo tumor in one ovary. The abdominal incision was considered the "modern methods", leaving behind a more than 20 cm long seam. The intervention had saved my life, and so I saw it too. I focused on the positive thinking, namely on got a new "life". To have cancer without offshoots and survived without chemo. This setting gave me the strength to be brave! And to get up again.

The following complaints to the intestinal tract that strong migraine attacks during the menstruation and susceptibility to other chronic diseases (rheumatism) took their course. Today I know that probably already then, my uterus has been ill (adenomyosis) and I ended up with the adhesions from the OP and the intestinal problems in a vicious cycle of painful and monthly recurring cramps.
None of the specialists in renowned hospitals in Zurich and Aarau recognized "the rabbit in the pepper."

I had to go from the family doctor to Gyn and from there to the rheumatologists, for proctologist and back. An engaging, an embarrassing investigation after another. Many professionals (doctors and nurses) I have endured, they laughed at me (!) and have decided that I simulate and think out the bad complaints. One doctor (as I was 20 years old) apologised after the 2nd intervention, because they found a cyst yet located in the other oviduct.


After that for the first time I had fed up and demanded intuitively with my young 20 years (in retrospect I know that then I felt very good that my uterus is ill) the removal of the uterus. Doctors were shocked and convinced me in interviews, what serious consequences this would have for me as a woman. What is true, determines. The uterus and ovaries are very important organs, in order to live feminine and healthy for us women. As a 20 year old, young lady this would have a very strange impact (especially because of the hormones) to me.

But I did not care! I did not want this pain! I wanted to be able to work normally! Go dancing! Enjoy life!

With about 32 years - after other endless doctor visits, tests, procedures, hormone revenue and watching how partners leave me, once again I called the hysterectomie. This time with less force. Because I had no energy anymore. But again, I got a "no"without offering alternatives to me. Without proper diagnosis. With a pitying glance, they dismissed me back into everyday life, to my exhausting symptoms.

Last year, with 39 years, I learned during a new examination that I can finally forget my deep desire to get children. However, I didn't get a specific diagnosis. She explained my suffering was because of "my circumstances" and the fact that I have only one ovary since 25 years.
I resigned. Accepted brave. Cried and howled all night long.

But it was a good thing. Because I let my fertility go. I went through a grieving process, which triggered healing in me. And this spring it made my decision easier. Finally possible, aged in 40 years, I got to know a new doctor, who explained that the only solution for cure is the removal of my poor, sick uterus.

And now despite the hysterectomy I feel more feminine and as a woman than ever ever before.
Dear Reader. To write this article is very, very difficult for me. Because it means that I "merely lay"(was soll das heissen?). That I'm talking about a taboo. About things we hide. For shame. Because of a lack of education.

During the months between my bicycle accident (concussion) in the end of april and the end of july (hysterectomy) I've had thousands of hours of time to think about endometriosis and alternative options. I have used the time.


And I knew one thing for sure: I will do everything in my power to educate other women and shake up physicians - the system!

And there is my writing and I run this blog, it is very natural to use these funds. The future will show to what I will be ready further on.

I hope, therefore, very pleased to have made you a little concerned.


Do you recognize yourself in some of the symptoms? Maybe you know you have endo, but so far have not found anyone who understands it and you?

Go to your Gyn and request clarifications regarding the endometriosis / adenomyosis! Listen to your inner voice, don't accept small talk! Request unabashedly and completely serenely more professional opinions. Be loving and patient to yourself. You are perfectly fine!


Or recognize themselves as family members, girlfriend or partner of an endo patient? Then I would ask you to endless patience and understanding. I ask you to never-ending hugs for the endo woman. I ask for your endless support for my fellow sufferer but also their partners, even if it is "by far" and in loving, compassionate thoughts! They need this supportive energy. Understanding! Try to find out how you could relieve this woman, if she wants. In the household, the children's hats, go shopping. With insightful and personal conversations. To bolster them. With respect and esteem. With a sincere smile.

This is now the place to thank my family from the bottom of my heart.

My parents were with me in the recent months and such a strong support and an unbreakable grip, I can not describe it better. Even my siblings were a great gift for me  - each in his own way - from good thoughts until visiting into hospital and good talks. My friends accepted my request at a distance and are still there. THANK YOU.

And for you, dear reader, I still have something now. A request.

Please share with us your thoughts. Share this article in your social media. I want to reach many women and their families with this post. Every single comment, each added experience or medical supplement may be important for these people! Share the article. Pass on the link to it.

Please do it as i do it for us women. To elucidate. To alleviate the discomfort of many women.


Your voice is important.


Thank you very much, your Chantal Perrinjaquet

P.S.

In the end of september I will upload the audio-version of the blab-session of 28. september on iTunes. I will translate it simultaneously. Please visit my Podcast called "bewusst bei mir" and enjoy this episode in english.


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