Endometriosis story

  These stories can help other women so they do not feel so alone when trying to cope with effects of this disease.

My personal story of endometriosis

by Jessica Shea
(North Carolina)

Like many of the women here I suffered with the pain and symptoms of endometriosis for years, actually for about 15 years, and I'm only 28 as I write this right now.

I started my periods when I was 10 and for the first few years they were normal with no pain, they were just periods.... but around the age of 13 something just switched.

Instead of normal PMS I had incredible mood swings, depression and angst. The day I started my period, nearly every month, I had to be taken out of school because I would be vomiting, have a fever, and be shaking from the pain.

I couldn't keep food or water down, so taking tylenol or something wasn't an option. I went on birth control for treatment while in college which seemed to help for a time, but eventually every pill became useless and the pain came back ten fold.

I stopped birth control because I felt like it actually made my periods worse. The only one that seemed to help was Ortho Tri Cyclen.

This is terrible to admit, but my junior year of college when I was 21, my period just randomly disappeared (I wasn't sexually active so pregnancy was out of the question). I should have gone to the doctor to discuss what might be wrong, but honestly, I was so happy to not live in fear of my period every month and the pain it was going to bring.

I just pushed the thoughts out of my mind and moved on. Eventually my period did come back, and boy oh boy, was the pain debilitating!! I starting seeking out OB/GYN's and had two abnormal pap smears.

FINALLY I thought, I'm getting somewhere. They scheduled a colposcopy, which I thought for sure would point out something abnormal, but to my surprise everything checked out. My doctors eventually thought I was exaggerating the extent of my pain, so I let it go and just tried to cope month to month. You see, for me, the endometriosis didn't affect me every month, it sort of came and went every 3-4 months... until I was 26.

Flash forward to age 26, and I was in constant pain nearly every month. Sex hurt so badly I felt bad for my husband, he felt bad too, because he didn't want to hurt me. I was constantly bloated and tired, the fatigue, oh my god, it ran my life!

I was lucky to get out of bed on a good day! Finally, after having sex one night I had cramps like Ive never felt before and a 'pop' sound and feeling. I started vomiting and the fever came on instantly.

My husband took me to the hospital and they did a pelvic and trans-vaginal ultrasound, a pap smear, checked my blood for an infection or cancer, and nothing. They told me it must have been a cyst that popped, but they didn't follow up.

By this time I was exhausted. Exhausted from the pain, from the fear of every months period, of people not listening to me. Exhausted from the fatigue and not being able to live the life I wanted deep down to live so fully.

Finally, this past summer I actually blacked out from the agony. I went unconscious while starting my period, and my husband and I had had enough. It wasn't normal, and we were determined to find a doctor that would listen to us.

Eventually we got a referral to a doctor who didn't believe that my pain was that bad, but he started to treat me for infertility (small win, as my husband puts it). I had the iodine x-ray thing (SO PAINFUL by the way) and my doc insisted I was normal, everything was ok.

But we kept pushing for a laparoscopy. Whelp, I'm happy to say that I had my surgery this past Monday, and guess what?! I did have endometriosis growing on my uterus and uterine ligaments - which causes debilitating pain, gas and vomiting by pushing on the small intestine... hmmmm.. interesting, right? I wasn't crazy.

When I woke up from the surgery the nurse told me, "Don't move too much, you have three holes in your belly from the surgery," and I actually smiled! Why? Because prior to surgery my doctor was sceptical that he would find anything, he actually said that to me, and the plan was to only go through my belly button to look around... 2 additional holes later he had to remove quite a few large growths.

It's strange to say, I know, but after 15 years I feel so good knowing that I was RIGHT! You bet I'm going to gloat during my post-op appointment next week, haha. I know endometriosis is a chronic condition. I'm hoping I can get pregnant in a years time to help lower the oestregen levels. If it isn't possible that's ok, my husband and I are ok with adopting.

If you have endometriosis you have to be ok with the options you're given, we just had to remove the pain from my life and that's enough happiness for me right now.

I will also say that the endometriosis diet does really help! I started a few months ago and I noticed a significant change in my body - I still had problems, but the inflammation seemed reduced.

I hope that as I continue with the diet, with the endometriosis removed, that I can keep it at bay. We just bought a juicer and I think that staying vegan (but still eating fish) will really help.

I hope all of you understand that I've struggled for so long, but that I'm happy to finally have answers, and that the best lesson I can offer is that you have to push, push, push, be your own advocate.

YOU are not crazy. Believe me, I thought I was losing my mind... keep trying to new doctors until you find someone that either believes you, or won't challenge you. You know your own body, and I should've listened to mine more and advocated for myself long ago.

If you are too weak to do it, have a friend or family member do it for you. Without my husbands insistence we would never have scheduled my surgery (he actually had to ask my doctor 5 times to schedule it, really, 5 times... it was clear my doctor didn't think anything was wrong with me).

And I will also say that the day after surgery was painful, but it hasn't even come close to the pain I experienced nearly every month for the past years. I was given vicadin and I have barely touched it. I even stopped taking tylenol today - that's another thing Ill gloat over - my supposed high tolerance for pain is real. Take that doctor, ha ha.

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