Endometriosis story

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

Still miserable since 1996 with endometriois

by Donna
(Marksville La )

I am currently 45 years old. I have 3 healthy children ages 23, 24 and 27. When I was 24, I was told that I needed to have a partial hysterectomy. I had been having severe cramping, SEVERE back pain, when I would have my monthly cycle-felt like everything was going to fall out of my vagina!

Well, I had the partial in 1996. After 3 months, I started having horrible pain around my left ovary. I was told that I had fluctuating cysts and that I just had to learn how to deal with the pain. These cysts came and went for a very long time.... until around 2008. The pain was so severe, I could barely stand.

I was at work, and crying. A dear friend of mine referred me to her gyn dr. He was able to see me that day! I went in-he did a sonogram and found that I had a cyst the size of a head of cabbage! It needed to come out asap!

That was a Thursday-we did surgery on the Monday. He removed the ovaries and the cyst. The next day, I was having severe pain and had a fever of 105. They did urine and blood tests. Could find nothing! I was told they had to go in and explore otherwise, I would be dead within 12 hours.

So, feeling like there was no other option-I agreed of course. In the surgery from the previous day, my intestinal colon was kinked. They had to remove a lot of it. I was told at that point that I also had a severe case of endometriosis--which he said I had probably had for MANY years!!

I was NEVER told this until now. I felt like I had been lied to by my former dr all of my life!! after 2 and a half weeks in the hospital, I went home. I had such horrible pain for 2 months! But, started feeling better--went back to work...

WELL---- started having abdominal pain AGAIN!!!
Back to the dr.... guess what. He left a piece of ovary about the size of a pencil point I was told... and the endometriosis was growing wildly and another cyst had formed already! so, I was sent to an oncologist to see what other option was available.

He decided that it was best for me to start Lupron injections. I took one shot--felt great for a few weeks-then got the bill for this shot and it was $9,733.00-YES FOR ONE INJECTION!!!

There was no way I could afford to get another! So, I went back to my gyn dr... and we decided that we would try the depo shot. I took the depo shot every 10 weeks... my dr then retired...I had to start all over .. the new dr didn't want to give me the depo... so, naturally, the pain started severely again, the cysts started growing again... and the endometriosis is everywhere..

I have since found a new dr... giving me birth control pills orally to take.. so far, it seems to have the cysts under control.. but the pain is always still there. My husband had stuck to my side through it all... even when I say no... and its been months!!!!

I don't know what else to do. Yes, I have medical insurance... but the medical bills have piled up sky high!!! and I am still just as miserable as ever.

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