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.