30 Things You (Maybe) Don’t Know About Endometriosis

In honour of Invisible Illness Week 2013 I have decided to repost this post from the old blog. I have previously written about what endometriosis is, as well as how to treat period pains.

  1. Estimates of women suffering from endometriosis during their reproductive years rangers from a low of 3% to a high of 15% (personally, I think it’s probably somewhere around 10%, as it is fairly underdiagnosed).
  2. Endometriosis is a chronic disease. There is no definitive cure – not even a hysterectomy is a guaranteed cure (see number 18 and 19).
  3. Many doctors, even OB/gyn’s don’t know the full range of symptoms related to endometriosis, and many don’t know how it’s diagnosed. E.g., at my first pelvic exam I was told I did not have endometriosis. Later I’ve found out that there’s no way of diagnosing endometriosis through a pelvic exam. The only way to know for sure is through a diagnostic laparoscopy.
  4. On average, it takes 5-10 years from the first time a woman seeks medical attention for her symptoms and until she receives a diagnosis. It took 6 years in my case.
  5. Most women in the US would have big problems getting their insurance company to cover their surgery. Some insurance companies will not pay for any treatment for gynaecological problems (including endometriosis) for the first year of its diagnosis, so a woman who suspects she might have endometriosis wouldn’t be covered for the diagnostic surgery. Other insurance companies will only pay for the surgery, if the woman has attempted to become pregnant for 2 years without success. So, if you are not planning on having kids any time soon, you are out of luck, and, either way you’ll have to suffer for another 2 years. Also, 60% of women suffering from endometriosis don’t have fertility issues.
  6. 40% of all women with endometriosis will have fertility issues (defined as being unsuccessful in achieving a pregnancy after trying for a year).
  7. There are 4 stages of endometriosis, defined by how widespread the cells are found, how deeply they’re implanted and if there are adhesions. Stage I is the mildest and stage IV the most severe.
  8. Ironically, the stage has nothing to do with the severity of the pain. This still baffles doctors, but apparently there is no correlation between amount of pain and other symptoms experienced and the depth of the endometric implants.
  9. Stage III and stage IV is most likely to have fertility issues, as there might be adhesions between the ovaries and other organs in the pelvic region, or the ovarian tubes might be blocked by endometric implants. This can often be helped with a laparoscopy where the adhesions are removed by laser, but there is a chance of damage to the ovaries.
  10. The biggest symptom of endometriosis is pain. Period pain, pre-period pain, ovulation pain, pain during sex, pain during bowel movements, back pain, lower back pain etc.
  11. Other symptoms include fatigue, dizziness, headaches, migraines, allergies, depression, urination problems, problems with bowel movements, immune system problems etc. etc.
  12. There is a link between endometriosis and lupus (an autoimmune disease).
  13. There is a strong genetic link.
  14. The doctors don’t know what causes endometriosis. One theory is retrograde menstruation (menstrual back-flow into the pelvic region). Problem with this theory is that retrograde menstruation happens in 90% of all women, but only 10% get endometriosis. This still doesn’t explain what goes wrong in those 10%.
  15. Some doctors think it is due to problems with the immune system, the body doesn’t recognize that it should be attacking the endometric cells. Women with endometriosis also more frequently get colds, flus etc.
  16. It is not just period pain. Only you know how bad your pain is, if you need to take any more than standard OTC painkillers, you ought to be checked out by your doctor. It is not natural to be in agony every month.
  17. Contrary to popular belief most women with endometriosis aren’t “cured” after having a child. Most women with endometriosis will feel better during their pregnancy, and from a few months up to a couple of years after the birth. It is believed that the longer you breastfeed after giving birth, the better the chance that you will feel better for a while.
  18. Some women will even continue to suffer from endometriosis after their menopause. The doctors still don’t understand why.
  19. Keeping with this, in about 25% of all cases where a woman has a complete hysterectomy, she will still suffer the pains of endometriosis afterwards.
  20. One of the best options to keep endometriosis down for a couple of years, if you don’t want kids right now, is to take the pill in continuous cycles, only having a period a few times a year. This sort of puts the hormones on a “break”, which keeps the endometric implants from developing.
  21. More aggressive hormonal treatments include taking male hormones, to put the body into a temporary menopause for up to 6 months, but side effects might include permanent voice change and hair growth.
  22. During a diagnostic laparoscopy it is usually agreed with the doctor beforehand, that s/he will remove any endometric implants and cysts that is found. This can help relieve the pain and symptoms of endometriosis anywhere from a month and up to a few years.
  23. Many women suffering from endometriosis have several laparoscopis, or laps, performed.
  24. Having endometriosis can distance you from friends and family. They might not be able to understand why you’re always so tired, or wonder if it’s really that painful.
  25. It can affect your career. Often it’s hard to have a “proper” career, when you’re exhausted all the time, and spend several days a month in agony.
  26. Some women who suffer from endometriosis have more days with pain, than days without pain. One week of pre-period pain, a week of period pain, then one week of feeling decent and a week of ovulation pain, then the cycle starts again. Please note; you do not have to experience this much pain to have endometriosis, it is very individual.
  27. Some think that the only thing that really had a chance of curing endometriosis is a change of diet. No sugar, no gluten, no dairy, no red meat (beef, pork, lamb), no artificial additives and there’s disagreement about whether soy is good or bad.
  28. One of the biggest helps, when dealing with endometriosis, is having a close friend or friends to help you deal with it all. It’s important to have someone, other than your doctor, to talk through treatment options, but also just to have someone to listen to you. Someone you can complain a little too, when you feel like you’ve had a few too many bad days in a row.
  29. It’s important to keep in mind, that most people do not understand this disease, most people haven’t even heard of it. You might get insensitive comments, but bear in mind that most people don’t actually mean anything by it, they’re only showing their own ignorance.
  30. Endometriosis is a chronic, invisible illness. You cannot look at a woman and tell whether she has endometriosis or not. She might smile, but that does not mean she’s not in pain.

 

3 Comments

  1. LK

    Gosh this sounds awful. I hope you’ve found a way to relieve some of that pain.

    Like

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