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Crystal’s Story (Endometrosis)

Crystals Story EndometriosisHi everyone,
My name is Crystal Doyle. I am almost 20 years old and just had my first lap surgery about 5 weeks ago. I have suffered from bladder infections and all sorts of things since I was a little girl. I  got my period at around 12, and ever since then, with every year that goes by, the pain has gotten worse and worse.

I knew something wasn’t right when I went to at least 10 different local doctors several times every month, and I just got the same reaction: that it was just a bad period, and I should just deal with it. Each doc made me try different things. I have tried pills, peppermint tea, NuvaRing, Mirena, and now surgery. I know it’s only the early days, but I have just had my first period after my surgery, and it did not feel any different than any period before the surgery. I feel exactly the same. I still get pins and needles all down my legs and sweat and stomach cramps like hell, and the feeling of being about to pass out because of how much it hurts to pass bowl movements. Even to just urinate it still hurts. I have had the last 6 weeks off work because of the surgery, and I just cant handle it. I feel as if I’m never going to be able to live a normal life, eat normal food, have kids, and hold a decent job before getting fired for having so much time off work. I am so scared that it’s just going to get worse. I go for my full results from my surgery next week, and I will find out my chances of having kids. I am so thankful that I have a caring, amazing husband-to-be. I just feel like, no matter how much you explain it to people, they don’t understand, and it’s really starting to take a mental and emotional toll on my life.

I just want to know if everyone else goes through this emotional and mental state at some point also?

I just wish they would do more to find a cure. There are so many women out there finding it hard to get jobs and live stable lives.

I read positive, strong quotes everyday to keep myself positive. I will keep fighting this illness!

Crystal
Queensland, Australia
Submitted 09/11/2014

The informational content of this article is intended to convey a personal experience and, because every person’s experience is unique, should not be relied upon as a substitute for professional healthcare advice.

This story is intended to convey a personal experience and, because every person’s experience is unique, should not be relied upon as a substitute for professional healthcare advice.

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4 comments

  1. Hi Crystal,
    I just want you to know that you are definitely not alone and I really can to the mental and emotional – not to mention physical – pain and stress this disease cause. What makes it worse is that it is still so widely misunderstood. Getting diagnosed was a nightmare that spanned over two years, although I now know that all of the days spent crying with a hot water bottle whilst menstruating in my teenage years, were a sign that I was already a sufferer.
    Every time I feel that I’m in a good place, I get another flare-up. I’ve had six-month periods, chronic pelvic pain – that appears when walking, after bowel movements, during sex, that radiates down my legs, that expands to my back and vagina – I get frequent fatigue which is just debilitating, and in the last month I’ve developed severe bloating, weight gain around the abdomen, loss of appetite and fullness, and now I’m just an emotionally exhausted wreck. The irony is that I was diagnosed with minimal endometriosis, so every day I am continually baffled by the extent it has managed to affect my life and wellbeing. I hope your fertility chances are still positive, I have the mirena in, but I also get prostrap injections to put me in a false state of menopause, which has helped. Maybe you could try that as well until you’re ready to conceive?

    Being a sufferer is hell on earth, but I refuse to let it overwhelm me. All I can do is fight the bugger like a girl with holistic therapies, herbal remedies, special diets and when I feel up to it, exercise. You will beat it and I wish you all the strength in the world. Xx

  2. Hey Crystal,

    I just wanted to give you some insight on my story as well. I was diagnosed at 15, and I too had the surgery. My first period right afterward killed me. I was in total tears trying to get though that dreaded week! But after that first one, and my healing time, by the time the second one hit the pain did improve. I was put on Lo-Loestrin 24. My doctor explained that the lower doses of birth control seemed to help significantly compared to other birth control doses. When I was on the birth control I felt great. Like I could finally live again. Unfortunately my health insurance was cancelled on me (I am now 22 and my mom moved out of state; she’s no longer carrying me) So now I am battling the Endometriosis bare backed. But you are not alone & what you’re feeling is totally normal. I know it’s way passed your check up, but I really hope everything turns out great for you.

    Best of luck & remember, we are our own worst enemies. Keep your chin up!

  3. Hi Crystal. My Name is Noël. I had lap surgery about a year ago to remove 4 ovarian cysts and was “diagnosed” after 10 years with endometriosis. Nobody explained endo to me and how bad it was but I thought surgery would help. I’ve been in more consistent pain now since surgery. Just today I had a breakdown realizing it is not going away or getting better. As I lay here in bed wanting so badly to go for a hike, I can hardly roll out of bed without grunting and grinding my teeth. Still shocked how painful it is. I suffer mainly with lower back pain, pelvic pain and fatigue. I always considered myself a very tough girl/woman especially now at 36. I’ve been told for so long nothing is wrong with me. I believe the doctors for a while and just told myself to deal. Well I am still dealing with the pain but I am praying to God he will heal me and maybe the doctors may be able to help me to. I hear you and I am fighting like a girl right along side of you! Keep up the positive attitude and I’ll be praying for you and all those that suffer along with us!

  4. hi my name is denise reynaga I just found out that I have endormetriosis also and yes I am not liking it as well but my doctor said there isn’t a cure I feel tired everyday and also go through a lot of pain cause by it I had thought it was cancer at first and I read up on it after and they have a lot of the same symptoms but what I try to do is think positive and trying exercising alittle everyday I heard that it helps also I was told if u drink too much caffine its bad for the sickness praying for u always

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