The ugly truth about Endometriosis

Recently, I posted several articles about my near death experience.

It’s not an exaggeration, I nearly died. Why? Because I lived my life without ever being diagnosed with Endometriosis.

In high school, not a month went by that I didn’t find myself at the school nurse. I wondered to myself, why didn’t other girls suffer like I did every month. Surely having your period didn’t mean that the world had to come to a standstill.

When the problem didn’t go away when I reached adulthood, I started going to Doctors in an attempt to make life better for myself. I became accustomed to having to take my hot water bottle to work with me during my period. It became normal for my colleagues to see me filling it up every few hours at the kettle in the kitchen. There isn’t much professionalism in your entire office knowing its your time of month but there was no other choice.

I was prescribed various types of pain killers. Some extremely strong ones that made me drowsy. I was prescribed various blood thinners. Told to be certain to take them when having my monthlies to avoid the pain. Not once in all my visits to various Doctors did anyone consider that it might not just be “normal” pain.

On my last visit to my gynae prior to going into labour, I came across a brochure on Endometriosis. I picked it up and saw what was a list of VERY familiar symptoms.

The Ugly Truth About Endometriosis | Tyranny of Pink

Symptoms include;

  • Severe and frequent menstrual cramps and pain during menstruation
  • Pain during sexual intercourse
  • Diffuse or chronic pelvic pain
  • Infertility
  • Heavy menstrual periods
  • Low back pain
  • Bowel associated or bladder associated symptoms

(list taken from endpain.co.za brochure)

I had nearly all of these symptoms.

When I brought it up with my gynae, her reaction was “you can’t have it, you can’t get pregnant with Endometriosis or at least the chances are very low”… and it was brushed off. Just like that my suspicions were dismissed. Looking back, I should have demanded she pay closer attention but she’s an experienced Doctor and I’m a first time pregnant woman with no medical background. So obviously she knows best. Well, if I can give you one piece of advice, it would be to trust your instinct. No matter what anyone knows, NO ONE knows your body like you do.

So I went into labour with no worries in the world and when my Uterus was lifted to get the baby out, it was severed from where it had been glued by my Endometriosis to my colon causing a rupture in my colon. A rupture that was left undiagnosed for 6 days. All the while my intestine was leaking into the cavity of my body and causing serious damage to my large intestine. I landed up in ICU and ended up with a Colostomy bag (read about that here) to allow my damaged intestine the chance to heal.

Thirty to forty percent of women with Endometriosis experience infertility issues! I was clearly not a part of that statistic but I nearly paid with my life for not knowing. My Dr now says that post surgery, my Endometriosis is very likely to have fused my various organs together causing one large lump in my body. How scary does that sound?

The funny thing is, so many people are already asking me about having my next child. Hold up – my baby is two months old and I nearly died bringing him into this world and you’re asking about the next one???!!! I don’t think another pregnancy is the way to go for this mamma!

Anyway the point of this post is to let you know that Endometriosis can take over eight years to diagnose! The exact causes are unknown though there are various theories about it which include retrograde menstrual flow (where some of the tissue shed during your period attaches to the pelvis) and genetic factors.

Is there a cure?

The simple answer is NO. There is no cure but there are treatments which can help ease the pain. The first step is being accurately diagnosed so that the correct treatment can begin. There are medications that reduce your pain or remove lesions which helps with infertility.

You don’t have to suffer alone so ask your Doctor if you suspect you might have it.

All the facts were taken from the End Pain brochure. For more information visit their website The Endometriosis Society of South Africa.

Jonelle | Tyranny of Pink

 

 

 

Comment

13 Comments

  • Simply Believe - Tyranny of Pink
    12th August 2016

    […] myself that life just happens. It’s not about anything you did. I just happened to have Endometriosis. I just happened to have a burst appendix. It wasn’t some divine intervention from the gods. […]

  • Please stop asking me when I'm going to have another baby!! - Tyranny of Pink
    18th July 2016

    […] see, I have Endometriosis but I didn’t know about it until it nearly killed me. It had fused my colon to my uterus […]

  • Dear Francis the Stoma, I won't be sad to see you go! - Tyranny of Pink
    26th April 2016

    […] the choice I would choose. My particular case is even messier than normal because I have Endometriosis plus scar tissue from multiple surgeries but I don’t want to live my life like […]

  • Monica Bruno
    19th November 2015

    Oh wow, Jonelle, I didn’t realize the extent of what happened. I’m so sorry! I have severe endimitriosis. I also had extremely painful periods in high school, but when I got on the pill, they went away. Later when I got married and tried to get pregnant, I couldn’t. After TEN YEARS of not being able to get pregnant, and going to see several doctors, one doctor (my current OBGYN) told me he thought I might have endimitriosis. I had read the symptoms, so I protested, telling him that I didn’t have pain with periods or any of the other symptoms. He told me he still wanted to check. It turns out, I had severe emdiitriosis. It was all over the place, pulling on on organs and the reason I was never able to conceive. Anyway, my story is very different from yours, but the message of needing to know your body is the same. Here’s to a speedy recovery!

    • TyrannyofPink
      Monica Bruno
      19th November 2015

      Hey Monica,

      Yup, things were really quite awful and I’m just so glad that the ending to my story isn’t different. I keep thinking in another hospital, the outcome could have been a lot less cheerful. Thank so much, I’m well on my way to getting better! I’m sorry to hear you also suffer from it. I think one of the worst things is not knowing WHY you’re suffering so much especially if you’re trying to have a baby. I was lucky, we only tried for two years. TEN is a very very very long time for no one to think oh wait, maybe it’s this really common issue! I’m glad you finally found a great OBGYN. It’s an awful experience that too many women suffer from for far too long! I’m glad that in the end, your story had a happy ending <3

  • Jessie, FlusteredMom
    19th November 2015

    So accurate. A frustrating and painful condition to live with. My mother had to have a hysterectomy because she was suffering so much.

    • TyrannyofPink
      Jessie, FlusteredMom
      19th November 2015

      It’s a real pity that a hysterectomy is seen as the “ultimate” treatment and yet doesn’t guarantee your problems will go away. In my case for example, my symptoms are all outside the uterus. Awful condition. Thanks for sharing your story!

  • Colleen B
    19th November 2015

    What an incredible story. I am glad you wrote this because I have heard about this before of course but had no idea of all it encompassed. Thank you for spreading awareness about this. <3

    • TyrannyofPink
      Colleen B
      19th November 2015

      Thanks so much Colleen! I always suspected I had it but it wasn’t ever confirmed. 1 in 10 women have Endometriosis which is an insane number considering most women probably never even get diagnosed. Thanks for reading.

  • Natalie “thebrondegirl” Young
    5th November 2015

    I’ve been diagnosed from endometriosis and it’s the worst thing. I had an op to removing any excess lining but periods haven’t stopped even though I’m on the coil now… Turns out I have a hormone imbalance too! I’m now being treated with the coil and the pill and that’s going to stop my periods completely. There is literally nothing more frustrating then having to explain to people you are in agony because of period pains and for them just to not get it. Hopefully they’ll be way more research into it so people may be able to start to understand it! And then incidences Like yours won’t happen x

    Thebrondegirl.blogspot.com

    • TyrannyofPink
      Natalie “thebrondegirl” Young
      5th November 2015

      Ahhh Natalie I feel your pain and suffering! NO one understands that you are not just being dramatic. The amount of times I’ve had people say “surely it can’t be THAT bad” that I’ve strongly considered punching them in the face. Thank goodness I don’t act on these thoughts 😛 I agree, more research needs to be done because “I don’t know what causes it or how to solve it” aren’t really much of an effort in my mind. xoxo

  • theeternalmuslimah
    4th November 2015

    came back for more. your blog has given me a reality check. We have so much to be grateful for

    • TyrannyofPink
      theeternalmuslimah
      5th November 2015

      and i hope you keep coming back for more 🙂 Your comments always make me smile.
      We really do have so much to be grateful for!!

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