Endometriosis story

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

Total Hysterectomy at 29 due to endometriosis

by Jennifer
(Louisville, KY USA)

I only found this site today, wishing I had found it much earlier. Not knowing where to even begin, I guess the beginning is a good spot.

When I began my period at the super young age of 9, I was troubled from the word go. By the time I was 12, I had a period that lasted for an entire month, but was too embarrassed to tell my mother. This landed me in the hospital getting blood & iron transfusions.

I was on birth control therapy for several years & decided at 25 to try to get pregnant. I went through hell & back with tests, fertility drugs, more tests, but no diagnostic laparoscopy & about 45 extra pounds to boot!

After 9 months, I gave up. I figured if the powers that be decided motherhood was for me, it would happen naturally. By the time I reached my 28th birthday, I was miserable, having a period every 10-12 days, being so heavy I had to double up on protection, always keeping an extra pair of pants handy & should've bought stock in Midol, as I took them more than what was recommended.

I finally decided to go to my primary care doctor, since my gyno had lost his license due to malpractice. Just my luck, a quack!!

That decision forever changed my life. I explained my issues & was looking to get back on the Pill to regulate myself, deciding babies were totally out. She sent me for what I thought was an unnecessary ultrasound, finding a considerable mass on my right ovary.

My heart sunk, I just knew it was cancer since she said it wasn't a cyst, but a solid mass.I was immediately referred to another gyno who felt I had endometriosis before she even did the diagnostic laparoscopy. This was never, ever mentioned before.

Once she did the lap, she determined I had in her words, "the worst case of endometriosis I've seen in my 25 years of practice"; giving me a Stage 5 diagnosis, not even sure that is a stage, but apparently it was that bad. My options were grim, hysterectomy after 6 months of Lupron to shrink the endometriosis, 6 months of Lupron with lap to remove as much as she could with IVF, if she could harvest any viable eggs or nothing with no guarantee of living past my 35th birthday.

After great consideration & other consultations, I opted for the hysterectomy. For 6 months, I felt like I was totally possessed, Lupron could very well be the devil!

It's now been 6 years since my surgery & I am beginning to wonder if in fact I am beginning to experience some endometriosis symptoms. I didn't realize that endometriosis could come back after a total hysterectomy, but I have experienced some of my old symptoms & have attributed it to my lack of hormone therapy or phantom pains.

I've not taken any hormones for over 5 years, but am suffering from extreme fatigue, insomnia, zero sex drive/desire, poor focus & memory, lower back & hip pain, bloating, digestion interruptions (from one extreme to the other), no energy & unsettling anxiety because of all the symptoms above.

I feel so fortunate to have a partner in which I am totally open with & is understanding of my menopausal craziness, that's what I reference it as. I've been to the doctor over the back & hip pain, only to be asked if I'm depressed since nothing shows on the X-rays.

I've been to a chiropractor thinking I needed an adjustment, leaving with more pain that I went in with. I've been on different antidepressants, all which made me crazy & mean; telling me, my brain chemicals are fine. I finally broke down last week & made a doctor's appointment for a hormone replacement consult.

I don't know what my options are at this point, but something has to change. I felt really good for several years after the hysterectomy, but the past year has been brutal. I never knew there were other women out there that have experienced the same things I have & am currently going through.

It's nice to know I am not alone, I thought no one truly understood what it was like & although I would never wish this disease on anyone ever, I am grateful you ladies have shared your stories. I feel relieved that finally, other people have affirmed that I am not really crazy!!!

I was beginning to think it was psychological & was afraid that others think the same since my aches, pains & mental status are all unexplained. Thank you all so very much, I just feel better knowing I am no longer alone in this.

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Sep 10, 2016
Severe Endometriosis
by: Jaydra

Mine started when I was 11. My paediatrician and GI Dr. thought maybe I had irritable bowel syndrome. Even tho my mom repeatedly stated that my bowels were regular as clock work. Then drs. said I was probably trying to start my period.

They'd ask me over n over what does the pain feel like and rate it 1-10. My answers were always same...feels like a knife twisting inside and rated beyond 10. Keep in mind this started when I was 11. I started my period at age 14. Finally had sonogram and fluid was very visible. It was cyst rupturing on my ovaries.

hen an obgyn scoped me and stitched what he thought was ruptured hernias on my pelvic floor which happened to be torn window like adhesions known as endometriosis that had attached everywhere to my bowel bladder etc.

I'm 27 just recently my tailbone has been extremely sore and my bones ache severely and my hands and feet are very swollen. Fibromyalgia.. and guess what endo, sore tailbone n Fibromyalgia are all related. I WANT A HYSTERECTOMY BUT WILL IT GET RID OF THIS EXCRUCIATING PAIN I'VE ENDURED FOR 16 miserable years?

Sep 15, 2014
by: Anonymous

I am 29 and have suffered with endometriosis for over 10 years and just had a total hysterectomy less than 2 weeks ago. Now that I am researching all the hormonal replacement therapies and the side effects of early menopause. I am scared. I had suffered with endometriosis so long that I almost wished I would have continued instead of trading it for all of this.

Apr 07, 2014
Thank you!
by: Anonymous

I came across this after doing a little research and I am so glad I did. I also got my period at the young age of 9. At 23, I saw a gyno, underwent a lap, and was diagnosed. Lupron (medical menopause) was absolutely horrible. I had the Mirena IUD inserted 2 years ago and I am feeling worse than before.

I am seeing a gyno in a few days to have it removed and explore my options. I am now 29 and considered a hysterectomy as I cannot take another day of lower back/abdomen pain. Almost all women on my maternal side have had this at or before 30 due to endometriosis. Your story has moved me. You are not alone. I hope all goes well for you. Thank you for sharing.

Jan 28, 2014
New info for relief
by: Anonymous

My mom made me go out and buy the Feb 2014 issue of Ladies Home Journal because an article titled 'Solved: 20 years of Mysterious Pain' sounded too much like me. There is a center in Atlanta that specializes in treatment AND excision of endometriosis. I have not been there nor do I gain anything by posting this, but this article gave me hope that just maybe there is relief in the future for me. Their website is www.centerforendo.com

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