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There is Life With Endo

By Lynne

I am a 45-year-old woman who has had endometriosis (stage IV) for many years.

I have tried many different things over the years to help alleviate the debilitating pain the disease causes, but to no avail. I take good care of myself, do gentle exercise and do not eat meat, consume no dairy products and am even careful about what skin products I use.

I also had adenomyosis, and each month when I had my period, not only did I bleed heavily, it also felt like someone had reached in through my abdomen and grabbed my uterus and held on to it as hard as they could for at least five days. I had a couple of uterine fibroids too.

It wasn't unusual for me to end up at our local emergency department because the pain meds I had been prescribed were doing nothing for the pain. On a few occasions I was admitted to the hospital, often for a week at a time, to get the pain under control.

I was fortunate enough to have a child 10 years ago, and the pain from giving birth was easy compared to the pain from endometriosis: at least with my labour pains I got a reward...my son. Endometriosis pain gives you no reward, and you never know when it will give you a break, if at all.

I finally decided to have a total hysterectomy at the beginning of this year to see if I could get relief.

The doctor did a total hysterectomy: removing my ovaries, fallopian tubes, cervix and uterus, while supposedly doing some excision surgery at the same time. I had extensive adhesions as well. Unfortunately, I had complications from the surgery the next day, and ended up back in the operating room because I had lost a third of my blood.

Since this surgery I have been in and out of hospital due to continuing pain. My surgeon refuses to believe I still have pain. I am now faced with trying to find a specialist who believes me when I say I still hurt. I have been told, “No ovaries – no pain.” I know this is not true for myself and for many other women who have had hysterectomies.

I know many of you may read this and be shocked at what has happened to me, but I wanted to share my story to give you all hope. Although my life has been a bit of a nightmare since my surgery, I am determined to find a good doctor and also to get well. I gain strength to get through this by helping women who have the disease to help themselves and empower themselves with knowledge.

I know this disease can bring us to our knees at times, but please take strength in knowing that you are not alone. If we choose to educate ourselves and speak out when we are not getting the treatment and care that is our right, it's possible that we are helping to make the lives of women that come after us better.

I have been unable to work because of my endometriosis, and I live on a very limited income, but each day I am thankful for many things in life that money could never buy. I wish you all strength and empowerment in your fight against this disease and everything that comes with it.

Another thing that can help is a knowledgeable, understanding doctor who "thinks outside the box." Once a woman finds this type of doctor, she can have a great partnership with him or her on the path to being as well as she possibly can be.

Together, we truly can make a difference!

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  • A publication of:
  • Women's College Hospital