Endometriosis story

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

Had hysterectomy in 2011 in 2015 it has returned!!

by Apryl Martinez
(Grandview, Wa USA)

In 2011, after years (since I was 14) of going to dr's and ob/gyn's, I was diagnosed with endometriosis. I had tried everything, including birth control. Nothing worked. I was in so much pain I couldn't perform my daily chores (I'm a housewife). My stomach had become so swollen I looked like I was 9 months pregnant.

When I went to the store people would actually ask me how far along I was. I had the hysterectomy in April of 2011. The doctor diagnosed it as stage 4. I cannot tell you how many dr's I went to that told me their was "not a thing wrong with me ", or "you'll just have to learn to cope" and "here take these pills, and you'll be fine" .. I cannot tell you how many times I walked out of a dr's office in tears thinking their was no hope, or caring person out there any more. I thought I was a lost cause.

Then I was talking to one of my friends and she said she had been diagnosed with endometriosis. That was the 1st time I had ever heard of it. So I researched it when I got home and sure enough their were all my symptoms in black and white. So, I finally found a surgeon who agreed to do a hysterectomy. When we were talking about having surgery, he stated to me that having a vaginal hysterectomy would be better, because, it was less invasive, and healing time was much faster.

Now, ladies we all have an inner voice, something that says it's right or it's wrong - please remember to always pay attention to this voice in your head. The doctor and I disagreed on how the surgery was to be done. He wanted me to do it vaginally, I wanted him to cut me open and take it out. So, I won by not allowing him to do it vaginally and thank god too!!

If he would have done it vaginally he would have ripped my colon to shreds. The endometriosis had been entangled with my uterus and my colon. Their was so much endometriosis it looked like a dump truck had backed up to my stomach and poured it in. Please pay attention to your bodies, even against advise of doctors.

The doctor "cleaned" up my ovaries, and put them back in so I wouldn't have to do hormone therapy. That was in 2011, now in 2015 it's back and I'm not sure what to do because whatever I do is not a cure. If I have surgery again, and they take my ovaries, I'll be placed on hormones which actually feeds endometriosis. So, the only hope I have is just to become a man!! Lol

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Mar 15, 2017
To gigi
by: Anonymous

Gigi, I have no insurance, in 2001 i had a laparoscopy, and was told it was everywhere, all over. I have horrible problems with stomach and bowels, and sometimes it truly does feel like you are about to give birth from the other end...until I read you post, I thought I was alone in that last symptom.

Mar 09, 2017
Dr sinervo
by: gigi

Cynthia. Can you elaborate on your experience with dr sinervo?
I have recently had a hysterectomy and am still experiencing the pain. I feel like I am going to give birth but from the opposite end.

Feb 29, 2016
Hysterectomy or Not?!
by: KLetendre

I have endo and considering a hysterectomy, my pain levels go up and down everyday...I can barely walk one day and the next day it feels like menstrual cramps...I have pain daily, there's not a day I'm pain free. I have 3 children and am happy....but I'm worried that if I have the surgery and endo returns then what are my options after that? What am I left with? What are women with endo left with what other options do we have? And having two daughters scares me because what if they develop endo?! It's not me being negative but it's a good possibility that they will have endo....so confused and frustrated. ....

Jan 13, 2016
Have had 16 surgerys for endo hysterectomy and still have pain
by: Tonya

Please help I've been having severe pain since I was 14 I found out in 1999 I have endo. I had a hysto. When I was 25 only able to have one child I eventually got "hooked" on pain pills - oxycontin I tested + for weed and can't even get my Dr to write me pain meds now, so I buy them off the street - mind you I major in criminal justice what can I do I hurt so bad.

Dec 28, 2015
I know how to relieve your pain.
by: Geneve

I was diagnosed with endometriosis when I was 18, I am 38 now and still have it after 3 laparoscopic surgeries & several hormone treatments. Ladies, we will live with this disease for the rest of our lives. It feeds off estrogen, so as women, we will always feed it, hysterectomy or not, because of hormone replacement therapy.

I have found a few things that work great. Depo Provera has been my God sent because I get my period every 9 months. Melaleuca has a crème called Pain-a-Trait, fabulous for rubbing on your belly or your lower back. It stops cramping in a couple of minutes. For those of you in a marijuana legal state, Dixie Elixers puts out an oral tincture called Synergy. It is a 1:1 ratio CBD/THC, one dropper full under your tongue will knock out pain in just a couple of minutes.

For less painful sex, there is a marijuana lube called Foria, zero pain and no cramps after orgasm. Stay away from soy. In the body it looks like estrogen so it flares up endometriosis. DO NOT take Danozal!!!!!!! It is a male hormone and it will make you grow hair in strange places, you will lose your boobs and your temper will be very violent. If any of you have questions feel free to call me 970-355-9811. Good luck ladies. Keep your chin up.

Dec 27, 2015
Endometriosis & Hysterectomy
by: Anonymous

I had severe cramps, heavy bleeding and other disabling symptoms while in the military (1986-1996). They always told me my period was normal. So I just lived with the pain for another 4 years.

I found a doctor to do a laparoscopy in 2001 and found endometriosis. I went on depo for the next few years but it made my depression worse. I stop taking it in spring of 2003 and my endometriosis came back with a vengeance. I ended up have a hysterectomy with a bilateral oopherectomy in May 2004.

Things were good until December 2004 when I started having low back pain, low pelvic pain and painful intercourse. I went back to my doctor and he could barely examine me. They did an ultrasound and I had a cyst on my remaining ovary. It was an endometrial cyst the size of a raquetball. I had it removed March 2005. I went on HRT for a few months but didn't like the side effects.

10 years later I still feel as though I still have endo. Every surgery I've had since then has been laparoscopic and through my belly button. I still have low pelvic pain every now and then. I also have random pains around my belly button that they can't find the origin.

Dec 03, 2015
There is hope!
by: Cynthia

Hi I had abdominal pain for at least 8-10 years and went through a couple colonoscopy's, a couple endoscopy's, many ultrasounds, I even swallowed a camera pill to take pics the length of my intestines and no answers. I was told it was in my head, I just couldn't handle pain, I was an addict seeking pain meds and much more terrible things no woman should have to go through.

I am a pharmacist who hadn't been able to work for 4 years now because of the pain. Our house went into forclosure, we filed bankruptcy and have 2 kids that I have struggled to take care of. My docs here in Colorado gave me the options of birth control pills, Nuva ring, drugs that put me in menopause and have terrible side effects and doing surgery to burn it off every few years as it always grows back.

After much research I found Dr. Sinervo in Atlanta who only does endometriosis and rather than burning off the top layer he completely cuts it out from everywhere. I am 2 months post-op and can honestly say for the first time in 10 years I am pain free. It is truly a miracle and if you want more info respond on here and I will email you details. Good luck, God bless!

Jul 20, 2015
I feel your struggle
by: Anonymous

I had a hysterectomy this last December. It was great for a few months but the pain has came back. My doctor put me on a gluten free diet. Everything I have read says its supposed to lessen the pain if not get rid of it all together. Maybe you should talk to your doctor about whether or not that is a good route for you.

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