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Rachel’s Story (Endometriosis)

Rachel's Story (Endo)The beginning of my story is going to sound very familiar to anyone who has experience with endometriosis. It started with really bad cramps, and I mean bad, curling up in a ball, dry-heaving, and crying in class bad which, as a teen, was humiliating, bad. But I was told some girls have it worse than others, you know? I was just one of the unlucky ones. I just had to deal with it and move on.
It started to get worse in college: my right side started throbbing dangerously directly before my monthly cycle. The first couple of times it happened, I was very close to rushing to the ER for fear my appendix was bursting. I never did because I didn’t have a fever, which would have been a symptom if my organs were in fact exploding. Instead, I went to a gyno, who said the pain might be a burst cyst but was probably constipation. Either way, she said it wasn’t a big deal and I was left feeling really dumb. After that whenever the pain returned I just curled up in a ball and waited it out.

My senior year, I bust a disc in my back and was dealing with sciatica. Suddenly, everything hurt, really badly, all the time, and there was never any relief. On top of that, I started having serious problems with UTI’s. I had always been kind of susceptible to these infections before, but it seemed like I was getting really bad ones every month. Once, I was horrified I had wet myself in public, but when I rushed to the bathroom, it was blood. At first the ER staff thought I was just overreacting to my monthly. I actually had a serious kidney infection. This was the first of a pattern.

A couple months later, again in the ER (this time with a bladder infection), I was told I had a large cyst on my right ovary. At the time the cyst was not really high on my list of priorities. All I wanted was my spine surgery, which was scheduled two months after graduation (It was a total success). However, during the months of waiting and recovering, we watched the cyst through ultrasound. It just kept growing. Finally, my ob/gyn told me it was either a chocolate cyst or a tumor and I should consider surgery.

We scheduled the surgery for October 1st, 2013. When I woke up, I had already been diagnosed with endometriosis. The cyst was the least of my concerns – the whole area was covered in lesions and blisters, some so deep that he couldn’t remove them without causing serious internal damage. One ovary was growing to the small intestine and the other was trying to become one with my pelvic bone. He cut apart what he could, even slicing a hole in my uterus to release blood and cauterized everything.

I was told if I had waited any longer for the surgery having children would have been impossible. As it is, I do have a chance. I’m on Lupron Depro shots now which gives me all the joys of menopause at age 24. I’m not sure how effective they are, because I still have a lot of pain, cramping, and sometimes I bleed for weeks.

I don’t know what the future brings, and honestly, it scares me. I don’t know if the treatment is working or not. I don’t know if I’ll be able to have children or not, which was a horribly difficult conversation to bring up to my then boyfriend (his response was that he loved me, not my uterus. We’re now engaged to marry this August, and I feel very blessed to have him).
But as scared as I am, I’m also angry. I’m mad that I never heard of endometriosis before being diagnosed with it. I’m mad it was never mentioned in any of the puberty books I read as a girl, and that it was never discussed in my sex-ed or health courses. I wish I had been told that there is such a thing as cramps being too painful, even unhealthy painful. I wish I had known while everyone gets UTI’s, frequent infections could be a sign of endometriosis. Maybe then, I could have asked my gyno about it earlier. Maybe then, I could have been on some form of treatment earlier versus later.
So why isn’t this condition more open to discourse? Is it because endometriosis is a women’s disease? Is it because the symptoms are embarrassing to talk about? Is it because there is no real way to diagnose it or to cure it? Because I think these are more reasons to talk about it. And maybe people were talking but I know I missed the conversation. I didn’t even know there was a conversation until I was diagnosed. I’m willing to bet I’m not the only one.

I guess I just wish I had known it was a possibility. But now, not only is it a possibility, it’s my life. The war had been going on for years, and I’m just now gearing up for battle. I really hope I win.

Rachel
Iowa
Submitted 04/21/2014

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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2 comments

  1. Rachel, I’m new hear but I just read your story and I am almost in tears, I can very much relate. Except I’m waiting insurance or money out of pocket for my laparoscopy/cystectomy. My gyno thinks I have endometriosis after reading up on it know already that’s what its got to be. I also wish I knew more of this sooner, and wish I was told earlier there was a chance that could be what’s been wrong with me. I also have a “left adnexal mass” they aren’t sure what it is but its been there three years almost 4 now so my gyn thinks its a dermoid.. When I have my menstrual cramps I feel like I’m dying worse pain by far in my life I knew that couldn’t be “normal” I’m almost 25. My fiance and I have had no luck with a baby and we’ve been trying 2/3 years:( I have no children, and I’m scared to death I won’t be able to have my own. But we can still adopt. I just recently for the past year maybe two been have been suffering with the frequent uti, and vaginal infections. If you ever want to talk you can email me or is there a messaging option for this site? I just found it. It helps me to talk to others who know what I am going through.. Obviously no one else would understand

    • Hi Jessica, I wanted to share my story and to let you know I understand just how you feel. I recently turned 30 and I do not have any children. I have come to terms that maybe I will never have kids even though I want them. My husband and I divorced this year but I have a wonderful boyfriend now who is loving, caring and so supportive. I feel blessed to have him in my life. This is the first time I have visited this site. It really helps to read about other womens’ stories about their strength and healing.

      I suffer tremendously from the inflammatory pain of endo. I am completely bedridden for 1-2 days each month, and the remainder of the month I suffer from stomach upset, gastrointestinal issues, and fatigue so great I sometimes find it difficult to even walk across the parking lot and up the stairs at work. Because of my heavy bleeding, my doctor tested my blood and told me I am anemic, and told me to start taking iron. I take iron every other day since it really upsets my stomach no matter what food I take it with. Because of all my endo problems, I reduced my hours at work to part time.

      I have struggled with painful periods and heavy bleeding since I started menstruating at age 12. I developed a very high tolerance for pain, however last fall was when the pain began escalating to a point where it was becoming unbearable. I had to call in several times. For fear of losing my job altogether, I voluntarily cut my hours since I felt like I could handle short days even on the days I was extremely sick. So far it is working out for me, but making it difficult to save money and to pay student loans and medical bills. This past January I had my first surgery. I had a painful and visible lump/mass in my groin area which my doctors did not know what it was exactly. I had a pelvic transvaginal ultrasound and they also discovered a 5 cm chocolate cyst on my left ovary and a 2 cm cyst on my right.

      After my surgery for the lump, my surgeon explained to me that the ‘mass’ I had was actually a hernia that was filled with endo tissue. They removed the tissue, repaired the hernia and ‘formally’ diagnosed me with endometriosis. My gynecologist told me that what I had surgery for was extremely rare and that I have chronic endo. Feelings of depression were starting to creep in from having been diagnosed with a disease which there is basically no cure.. so I focused my attention on work and leisure activities to try to combat the stress, and thought I could tolerate the pain and heavy bleeding/blood clots like I always have.

      For the past 6 months the pain has not subsided. On my worst days it feels like someone is literally taking a knife to my entire abdominal region and slowly carving out my insides. I know that sounds so gross, but it is the best way to describe the awful pain. I can only curl up in a ball with a heating pad, sometimes I just lay on the floor and kick and thrash around because I cannot find a position that relieves the pain.

      Just last week I begged my boyfriend to take me to the hospital so that maybe they could sedate me. I ended up toughing it out since I have been to the ER before and the only thing they could ever do for me is give me painkillers which I already have prescription 800mg ibuprofen that I take ( and they do not completely alleviate the pain). I am scheduled to visit the reproductive clinic and a doctor who specializes in endo, and to finally have the chocolate cyst removed (which should probably have been removed around the same time I had my first surgery).

      This disease has taken so much out of me, both physically, emotionally, and now financially too. The fatigue I feel from my body constantly fighting the inflammation has taken a toll. It is a deep fatigue, I experience a feeling I can only describe as being ‘bone tired’. It has interfered with my life in so many ways. My boyfriend and I had a lovely train ride scheduled to tour the countryside for my 30th birthday, but we had to cancel because I could not get out of bed. I cried equal parts from pain and frustration. However, I remain hopeful for a cure someday.

      My heart goes out to you and all the women who have shared their stories, and given me strength to continue my own fight. One of the toughest things is trying to maintain relationships with friends and even family. After awhile, people get tired of hearing ‘I’m not feeling well’. Since the symptoms come back over and over again I sometimes sense the impatience from those around me. They just don’t understand what we go thorough, which is why we have to find strength in each other and within ourselves. Also, I have started attending church, which has become another source of strength for me. All in all I feel blessed despite the disease I live with. I will keep you in my thoughts and prayers. Take cares and stay strong!!

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