So it all started around the age of fifteen for me. I started noticing this horrible pain in my rectum when i was around my period. It would last for hours and all i could do was go away in my room and hide becuase i was ashamed of it, i didnt understnad why i was havingn thaat. Then a few months later I noticed excruitiating menustrual cramps so bad that i couldnt hardly breathe. I rememeber the first time i ffelt those. It was in June of 2004 I believe and it was aroudn lunch time. I had just fixed something to eat and all of a sudden i had this sharp pain rip thru my body like someone had just attempted to murder me. I became extremely nauseus and hobbled to the bathroom, thinking i was about to die (literally). This episode lasted about an hour i think. I had just started my period for that month and little did i know at the time that the horrible new pain i was feeling was something that would only get worse in the next few months and years.
I didnt mention any of this to my mom or even my sister at that time becuase i was embarrassed again. Well, for one thing I though i either had a stomach virus unlike any other or that something was wrong with me that i really didnt want to go to the doctor for. So I just waited and kinda forgot about the episode until suddenly it was the next month and here i was feeling it again, yet it was even stronger. I finally mentioned to my mom and sister that i was really hurting and of course my mom asked me if i thought i would need to go to the doctor and i said no because i was 16 at the time, embarrased of going to a gynecologist (i cant imagine why now, i've been so much...lol) .
So i just waited it out for the next few years having excruiating periods month after month, and probably after a few months like this i began to notice excruiating pain around ovulation also. I just kept my mouth shut about it , hoping no one would notice the pain i was in , so i wouldnt have to go to the doctor for this. I begged God every month to please make this pain go away. I even remember asking him why women have to go thru this. I should have been asking him why i have to go thru this, becasue little did i know that all women didnt go thru all of this.
Around the time that i was 18 or 19 i rememebr being in t h e bathroom during these episodes where i would be in indescriable pain, laying on the floor, crawling to my bed, half concious, blacking out from the unbearable pain, screaming with any strength i had for it to go away, trying to breathe like a pregnant woman...it was something that i discovered could keep me a little bit sane) . I would break out in the biggest sweats,a nd then i would be freezing, shaking uncontrollably....all while i am still in the worst pain ever, crying out to God to please make it go away.
After about 4 years of enduring this each and every month I finally became fed up. You reach a point, or at least i did, when i didnt care if my family knew abou the pain. I just wanted it to go away. In March 2008 I began to do some research about severe menstrual cramps, hopinig to find something that would explain why i am in severe pain. I looked at many things, however one word stuck out from the page: Endometriosis. As soon as i read up on it over Spring Break I was pretty sure that i had it. It fit all of my symptoms and explained why i was going thru what i was. I told my mom what i had found and she looked really impressed. I told her that i was tired of being in the pain and that i really wanted/needed to go to a doctor. So i went to my mom's doctor, Dr. N i will call her. She was so nice, unbelievably nice. She listened to what i had to say about the endo and agreed with me that i could very well have it. So i was put on micronor, which is a continuous bc pill...from april of 08 to nov of 08. Needless to say, the pain didnt go away, in fact it bcame worse. So i went to a GI doc (DR. C) and he ran MANY tests to see if the pain could be somthing GI related( because since june the pain was about 3 weeks out the month) . I had a pelvic ultrasound done, which showed ovarian cysts on my right ovary. I had a pelvic CT scan , small bowel study, colonoscopy, and more done with DR. C, which showed nothing. I finally went back to Dr. N in november 08 and we then discussed having a lap done the next month. I was put on seasonique to see if it made any changes, however like i thought it didnt. THen my lap was scheduled for Dec. 17. I had it and after all of these years of suffering i found out that i did infact have endo.
I am so sorry that this is extremely long, but I wrote this in the hopes that someone else suffering with endo can be diagnosed. It's a horrible feeling to have pain and not know why.
Through all of this I have been so blessed though. God is so good, and no matter what I have been faced with my God has supplied me with the hope to press on. I'm just getting started, why would i give up now?
Wednesday, March 4, 2009
so here's my stab at awareness!
Subscribe to:
Post Comments (Atom)
Posts
4 comments:
Allisyn,
Thank you for bravely sharing your painful and touching story.
I am so sorry you have been through so much. I wish I could give you a big hug right now.
Sadly, your story sounds all-too-familiar to me. It makes me want to cry when I hear stories of suffering like this again and again.
I have been in local (in person) endo support groups since 1992, when I was diagnosed. I started an endo support group in my current area in 2001. I started blogging last June.
I have written, spoken to, and met with hundreds of endo patients. Every single one of them has stories to share that give me chills. There is so much suffering in silence!
The average endo diagnosis is 9.9 years after the onset of symptoms. I read the other day that they are now finding an 11 year gap in the UK between onset of symptoms and diagnosis.
This shocking gap of time between when symptoms start and when women get a proper diagnosis is staggering.
There are many reasons fo delayed diagnosis:
patients who feel ashamed or scared to seek help, as you described
doctors who are not well trained in recognizing/removing endo
doctors who imply or outright tell patients "it's in your head"
doctors who misdiagnose patients with other conditions with symptoms that mimic endo
doctors putting patients on treatment without knowing what they are treating (such as prescribing birth control pills to treat the pain before they know what the cause of the pain actually is)
etc.
Endometriosis affects 89 MILLION women and girls. Endo is more common than AIDS and more common than cancer!!
(Source:
Ohio State University Medical Center -- http://medicalcenter.osu.edu/patientcare/healthcare_services/gynecological_health/gynecological_statistics/Pages/index.aspx)
Endometriosis should be getting MUCH more attention from the media... with FACTS not MYTHS. The type of suffering you described for years on end would not happen if awareness of endo increased to be comparable with other illnesses.
Women should not be ashamed of their symptoms. If a man has prostate problems, it's written about in detail, openly in magazines and newspapers' medical stories. Why not give comparable coverage to an illness affecting female patients?
The societal taboos associated with menstruation are a big part of the problem. If we're going to help ourselves, fellow patients, and future generations of girls... we have to get over our "shyness" and discomfort at talking about the various symptoms associated with endometriosis.
You have just done a remarkable job at that very thing!! :)
Your story is courageous because you've explained, in detail, the mental and emotional journey you went through in order to reach the point where you sought out the medical attention needed to diagnose and treat this illness.
I am very proud of you for sharing your candid, emotional story. I don't mean for this to sound condescending in any way. I mean I am literally PROUD of you for putting yourself out on the line with this post! Kudos to you! This will help others!
You have a wonderful day!! :)
I'm going to go write a tweet to send people to read this post. :)
Jeanne
Allisyn,
I just posted this tweet:
Check out Allisyn's emotional post re: endometriosis! Endometriosis Awareness Month. MARCH BLOGGING FOR ENDOMETRIOSIS AWARENESS! #endo
Your story deserves to be seen!
Have a great day!
Jeanne
Good post. You know, your Blog Title fits you perfect. Even in your endo story, your postive attitude shines through!
Allisyn, I don't want to point you in the wrong direction. I did sooo much research on this a few years ago. but now it's like I remember my conclusion to all the stuff I took in, but can't tell you exactly WHY I decided the route I took.
Right after my lap in 02 the pain was still there. It was in no way as extreme but there. My GYN wanted to put me on the Lupron Depot shot for six months in order to put it in remission. I chose not to. So please do your research first if this is offered to you. I was put on Aygestin (not sure if I spelled that right) This also gave me the side effects of menapause. I took that for maybe a year. Then since the pain was tolerable (with meds) I was tired of the side effects and they put me on seasonal. I took that until my SuperCervical Hysterectomy in 07. But let my tell you. I should not have waited that long. See I was scared of surgery b/c they cause scar tissue which in turn can cause pain. Any my GYN wanted to take my right ovary. (lost the left in 02')So by the time I had surgery again my uterus was twisted and pulled up. My appendics had to come out and my rectum had huge amounts of endo. I went to a Endo specialist and what he thought to be a two hr surgery turned into six..( i thought four but my dad corrected me:) Anyway I'm not sure if this rambling helps but the only advice I can give is to just soak up all the information you can. The internet is a wonderful tool. And make sure you have a GYN that is VERY experienced with endo.
Post a Comment