Total hysterectomy at age 28 after 5 other surgeries to remove endometriosis

by Kate English
(Alabama, USA)

I had a full hysterectomy at age 28 in December of 2012. Just a little over a year ago. It was my 6th surgery.

I was diagnosed with Endometriosis Stage IV in March of 2012. It was done by my old OBGYN and she left the disease behind and in my pelvis and also left behind a dermoid cyst.

I was told during my post op appointment that I had severe endometriosis and she got what she could. She injected me with Lupron 5 days post op.

I was given no info, no pamphlets on Lupron. I was just told it was my next course of action if I ever wanted to conceive. Which I did very much so. My life dream was to be a mother of 6 or 4 children.

I had horrible reactions to Lupron and knew something was still very wrong. But My surgeon had told my parents while I was in recovery that my pelvis was clean and I just needed to let the Lupron work. I finally made an appointment and went to talk to her about seeing an Excision Specialist. She advised against it.

I went anyway and I went a state away to The CEC (Center for Endometriosis Care) in Atlanta, Georgia. I had an excision laparoscopy in May of 2012, the day before my 28th birthday. It was over a 4 hour surgery where I would be diagnosed with Stage IV endo.

It covered every organ in my pelvis almost, even my appendix. The surgeon removed my appendix. He removed 2 large endometriomas and the dermoid cyst that was left behind. My sigmoid colon was immensely involved and was stuck to my pelvic side wall. It was a mess.

My surgeon also removed a polyp that was in my uterus. It was also suspected then that I may have Adenomyosis (Endometriosis of the uterine wall...uterus). I was 146 points out of the 150 on the grading scale as far as the severity of endometriosis.

Fast forward to July, I was having severe pain still and issues with bowels. I sought the help of a local surgeon. He did an excision surgery where endometriosis was found and he freed up my left ovary which had adhered itself to my pelvic side wall.

He removed cysts from my ovaries. He also removed another polyp from my uterus and freed up adhesions.

He injected my pelvic floor muscles with Botox.
I was in the ER 2 days post op as I was in severe pain. I had a ruptured endometrioma cyst and blood pockets in my pelvis. I also had an adverse reaction to the Botox injections. I was on Demerol for months and bedridden.

Fast forward to November and I was having severe pain and in and out of the ER with large rupturing cysts.

I contacted my Specialist back in Atlanta, GA. We scheduled another excision surgery. My Left ovary was removed due to large cysts. Adhesions and endo were removed again. I also had a PSN to sever the nerves to and from my uterus. I also had a Mirena IUD inserted while under to help.
It was basically my last chance at saving my uterus and remaining ovary (R).

Fast forward 2 weeks and I was still bleeding. I normally had post op bleeding so did not think much of it. Until it kept getting worse. Then, I began passing fleshy blood clots. Then I started haemorrhaging after 2 failed ER visits.

I called my new local GYN and he saw me and yanked out the IUD on the exam table as blood dripped down the white paper that lined the table.
The next day I kept bleeding...and bleeding. It just kept coming.

I called him again and he said to come in. I waited and it seemed to slow down so I called back and reported that to the nurse. Fast forward a few hours and I was bleeding even more. I called and he told me to come in. He immediately called the OR for an OR table after doing a pelvic exam. I was prepped and had an emergency D&C in a matter of hours.

After surgery, the GYN said he could not find the source of bleeding and would encourage the hysterectomy. He said he thought the IUD (since it had perforated my uterine wall...had cause Endometritis.

I called my Specialist in Atlanta, GA again and scheduled the hysterectomy for 2 weeks later.

Three days before my hysterectomy, I could not take the severe pain any more. I went to the ER in Atlanta and was admitted. My right ovary now had several large cysts on it. I then had an emergency hysterectomy on December 11th, 2012. That day will forever be seared in my head, body and heart.

Pathology showed Endometriosis and Adenomyosis.

Here I sit a little over a year later and in severe pain. I just lost a job I LOVED due to passing out and puking from the pain and swelling on the job. It is extremely painful to have a bowel movement and I am in severe pain.

I know endometriosis pain oh too well. I lived in denial for awhile and now my body is yelling at me to get help.

I just do not know where to turn. I have seen 4 local Dr's and they all say I am high risk and there is no way I can have endometriosis after a full hysterectomy. And even if some endometriosis were to be left behind or missed...I am not on enough synthetic estrogen to feed it. I know my body.

I am beyond desperate and on the verge of losing all hope. I have fought and fought. Here I sit feeling like I am back at square one, or worse.

I pray for strength and hope daily. I raise awareness on Instagram daily so that I can give this awful, life changing disease a voice. We need a cure and to be heard. My heart goes out to future generations.

I believe if I were diagnosed earlier...I would not be sitting here typing on this laptop at 2 am in severe pain.