Endometriosis – the Little Known Disease Affecting up to 10% of Women

day 96: period pain

Do you frequently suffer from extremely painful cramps that over-the-counter medications cannot deal with them? Do you suffer from fatigue and bloating?  If so, you might be one of the 10% of women who suffer from endometriosis.

Long story short, endometriosis is when the cells of the uterus lining grow outside the uterus, usually in the pelvic region (e.g., behind the uterus, on the bladder, on the ovaries etc.). It is a chronic disease, but many women never discover the reason behind their severely painful periods or their infertility.

Symptoms of endometriosis

  • Pain! Period pain, ovulation pain, during sex, when having a bowel movement or passing urine etc.
  • Fatigue
  • Diarrhea or constipation
  • Abdominal bloating
  • Heavy or irregular periods
These are the symptoms that doctors usually look for, but endometriosis may also be seen through symptoms such as:
  • Allergies
  • Getting sick often
  • Other immune disorders (such as Lupus, rheumatoid arthritis etc.)
  • Nausea
  • Dizziness
and many more.

Diagnosis

The only definitive way to diagnose endometriosis is through a laparascopy (“keyhole” surgery).
There is no cure, even having a hysterectomy does not guarantee a painfree life. The doctors can ease the pain through pain medication, and give hormone treatment to try to control the disease. During laparascopies the doctor can laser, cut or burn away the endometrial implants which can also give relief for a while. A lot of women also feel better when changing their diets and cutting out sugar, refined carbs, red meat, gluten (especially wheat), dairy products and artificial additives.
For more information, I’ve found these websites the most helpful: endometriosis.org and Endometriosis Research Center. For my Danish readers I’ve found this website incredibly helpful: Endometriose Foreningen.

My Story

I was officially diagnosed with endometriosis back in September 2010, but that was only the culmination of 7 years of doctor visits.

I’ve had painful periods for as long as I can remember, but they started getting a lot worse when I was 16-17 years old, the doctor put me on the pill which helped for several years (as it puts endometriosis in “sleep mode”). However when I was 21 I started getting migraines with aura, and was no longer allowed to take the normal pill, because it has estrogen in it (which coupled with migraine with aura increases the chance of stroke). After stopping the pill my periods became even more painful. I would spend at least 2-3 days in bed every month, because of period pains, I experienced pain and discomfort around ovulation, I was tired all the time, felt dizzy on most days, struggled with allergies (which only began developing when I was 12-13 years old, and which have gotten progressively worse over the years), I would feel bloated, get nauseous and seemed to catch every bug going around.
The first time I went to see a gynecologist I was so relieved to find that I didn’t have endometriosis… or so I was told, later I found out that it’s not possible to diagnose endometriosis solely through a pelvic exam. After seeing several more doctors and not getting any results, I was finally lucky enough to get an OB/GYN who actually knew about endometriosis. After keeping a calendar over my periods and pain they thought it likely to be endometriosis, I was referred for a laraposcopy. During the surgery I also got a hormonal IUD (the Mirena), it took a while for my body to get used to it, but since then it has been a life-saver. I haven’t had a period in a year, and my cramps are down to a minimum.

Questions

Do you or anyone you know suffer from endometriosis or another chronic, invisible disease? How do you cope with it?

20 Comments

  1. LK

    The allergy thing can be a huge clue in separating this from someone who has a hormone imbalance or simply “bad” periods. Also this is absurd pain, not just regular period pain which many don’t realize. I’ve often wondered if I have this but the pill has worked so well I would think not plus I have not developed allergies. Plus its partially an immune deficiency illness which many don’t think to look for. Spent a lot of time on this in class when we studied the female reproductive system.

    I’m sorry to hear you struggle with this but I’m so glad they found a way to control your pain.

    Like

    • Thank you for your comment LK! Yes the pain can be absolutely absurd, I remember having days where I could barely stand up.

      Well, the pill worked to control it for me in a long time, which is also why I didn’t push it with the doctors for that time period. The pill works well because it puts the endometric cells ‘to sleep’. Also, on the advise of my doctor, I took the pill continuously for 3 months at a time, so I’d only have a period 4 times a year.

      I’m impressed with your class! There are many doctors who aren’t even aware that it’s an immune deficiency illness and that allergies could stem from it.

      The IUD has been amazing for me, it has really heightened my quality of life as I have maybe 10% of the pain I used to.

      Like

  2. This might interest you. I’m a huge believer/follower of a paleo/primal lifestyle

    http://robbwolf.com/2012/06/05/endometriosis-pcos-episode-135/

    Like

    • I am actually a huge believer of the paleo/primal lifestyle as well – though not such a great follower (yet).
      I know I (all-over) feel much better when I follow the guidelines, and especially sugar can make me feel very bad really fast.

      Like

  3. I’m glad you found a doctor who was able to help. Sounds dreadful! 😦

    Like

    • Thank you Susanne! Yes it isn’t fun at all, which is why I wanted to tell people about it because it affects more women than we realize, and so many don’t understand what’s wrong with them. After my diagnosis even though it was difficult for me to accept that I had a chronic disease, more than anything else I felt such relief that I wasn’t crazy. (Doctors would basically tell me I was exaggerating and couldn’t possibly be in as much pain as I was).

      Like

  4. sana

    If people with endo don´t have their periods then can they have kids?

    Like

    • Thank you for your comment Sana 🙂

      The reason why I don’t have periods right now is because of the IUD, but most women with endo do have periods. However, about 40% of those with endometriosis might have fertility issues at some stage, but that is (usually) not because they don’t have periods, but because endometriosis can cause scarring around the ovaries and ovarian tubes.

      Like

  5. Hey, I was diagnosed with endo in March of this year after 10 years of doctor visits similar to you, so I can definitely relate. The thing that really pushed it for me in the end was that I started having to get up to go to the toilet in the middle of the night because of what they later found to be endo on my bladder (haha, almost wrote bladder on my endo there… may be telling). Also I got sick all the time and had lots of fatigue (but interestingly no allergies – although I do get stomach cramps from coffee.) The fatigue is actually the symptom that I’m having the most trouble with now since I’m on the Mirena as well. Have you found anything that helps you with fatigue?

    Like

    • Wow, 10 years!

      My endo was/is on my bladder as well – just before my laparoscopy I noted everytime I went to the bathroom – 16 times per day on average! I am definitely no stranger to the middle of the night toilet trips.

      I wish I had a solution for the fatigue, it is definitely my biggest issue now as well (and in addition to that I still struggle with a fairly weak immune system that seems to catch every bug going around). Please let me know if you find something that works for you! – And thank you for stopping by and taking the time to comment 🙂

      Like

Trackbacks

  1. How to Cope With Period Pains « Becky's Kaleidoscope
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  4. 30 Things You (Maybe) Don’t Know About Endometriosis | Becky's Kaleidoscope
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