Misdiagnosis is Common when you have Endometriosis

Endometriosis is a debilitating illness experienced by women of any age, and is not limited to middle aged women nor does it have set symptoms or conditions.  This in itself makes it very difficult to diagnose.  One of the things that stands out about this is that women who have a little of the disease may experience excruciating pain but someone who has a lot of it may not experience any at all.

The disease itself is caused when small pieces of uterus tissue break away from the uterus and move to other parts of the internal organs, usually it is only very small and hardly noticeable by any standards.  However this can settle in the bowels, the intestines, the lungs, brain, anywhere in fact, and that is why it is such a major problem. You see, when a woman has her monthly cycle the cells in these small pieces of tissue will respond to the hormones and fill with blood as they would do if they were still in the uterus.  It can cause IBS on a large scale, and also depending where these cells are, a woman may end up crippled or disabled by its effects. 

Because it is such a difficult disease to diagnose, many women spend years being misdiagnosed and think they have other illnesses such as IBS (Irritable Bowel Syndrome), arthritis and so on, and on average to diagnose endometriosis it takes about 8 years of constant symptoms.  You may be in excruciating pain, be unable to walk, your muscles may be always tired, you may be irritable, and yet every test your doctor does will come back absolutely.  This is very frustrating because you know how you feel.  Some doctors may suggest that your pain is down to anxiety and may refer you to a psychiatrist and for many women in such horrible horrendous pain, who know it is not down to anxiety, that can be even more frustrating. 

It would be advisable as a sufferer of this illness, that if you have certain symptoms, ask your doctor his/her opinion and perhaps they will stop referring you to specialists who quite frankly, specialise in other things like rheumatism, or psychiatry, and perhaps they would send you to an experienced gynecologist instead, who understands endometriosis and what you are going through.  

Symptoms can include the following but not exclusively:

1. Severe abdominal pain, worsening during your period 

2. Leg pain and cramps so painful that you cannot stand up or walk any distance 

3. Diarrhea, constipation and bowel pain 

4. Tiredness, lethargy, sleep disorders 

5. Bleeding a lot during your period 

6. Unexplained excruciating pain anywhere in the body that seems to worsen during your period 

Because you may experience one or even all of these symptoms you may feel depressed or anxious as a result, not the other way around, i.e. your anxiety causing these symptoms. 

If you feel that your doctor is not listening to you, you are not alone.  Some women have experienced a lot of ignorance about their disability.  When the tests done all come back absolutely fine, and you should be an Olympic athlete by all standards, it is very frustrating and a doctor who does not understand that you are in pain can make things all the worse, for then you do doubt your sanity (but you still have the pain) Some doctors have laughed about it and some have said “oh that’s just monthly”.  The truth is endometriosis is not just monthly, and you may be in pain all the time 24/7.  

If your doctor is being unsympathetic it is best that you see another one if possible and ask for a referral to a gynecologist.  

When you do see your gynecologist, you may have what is called a laproscopy. Basically a small camera will be inserted either through the belly button or the vagina perhaps or even your rectal passage, to view where the endometriosis cells are. Afterwards you may have surgery, such as a hysterectomy, or removal of your ovaries. Other treatments include the insertion into the vagina of what is called the Mirena coil which contains progesterone.  Another treatment is to effectively “burn off” the endo and therefore relieve symptoms. None of these treatments are 100% however.  As a sufferer myself I have been on Zoladex for the past few months. This switches off your hormones and should have the effect of relieving the pain. On this treatment you still have to take HRT to keep your bone strength. 

Sometimes there is no real proof of Endometriosis, only symptoms so it is important to keep a diary of your symptoms and add whether or not they get worse during your period.