Shelley's Story "Was it Irritable Bowel Syndrome?"

My nightmare with endometriosis started with my periods when I was 12.  My very first period was agony.  Coupled with the pain with my periods, I would get extremely bad breath. I'm not sure if it's connected, but it would go away a day or so after my period had started.  After a few visits to the doctor, I was diagnosed with Irritable Bowel Syndrome.

However, periods weren't my only problem. I got severe pain when ovulating. I was on a 28-day cycle so every 14 days I would have pain. At the time, I didn't understand that it was ovulation pain.  It wasn't until I was in my 20s that it clicked.  The ovulation pain was different from my period pain.  When I was ovulating, I would find it incredibly painful to sit down, go to the toilet, and generally move around.  I was at the doctor's quite often over the next few years and was given different things to try and fix the Irritable Bowel Syndrome, which obviously didn't work; my bowels worked fine (3 times a day).

It wasn't until I had heard that a friend of a friend had been diagnosed with endometriosis and had had a laparoscopy that I started to think maybe I had that.  I was in my late teens then. I brought the subject up with my doctor but she didn't think I had endometriosis, and that my problem was Irritable Bowel Syndrome. I didn't do anything more about it at that time as I had become accustomed to the pain and it was part of my life.

Then one day while, ironically, I was again at the doctor's I read an article in a magazine on endometriosis and there was a wee questionnaire at the end of the article which stated that if you answered "yes" to three or more of the symptoms, you probably have endometriosis. I answered all five with a yes.  So I took myself off to a specialist as I thought that my doctor probably wouldn't refer me as she had diagnosed me with something else.

I had my first laparoscopy when I was 30.  The specialist told me afterward that while I didn't have a lot of endometriosis it was in the most painful position.  I was extremely lucky it hadn't moved onto my bowel; it was pretty close.  My first period after that laparoscopy was a dream.  I couldn't believe how pain-free and easy it was.  Sadly, six months after that operation I was back to painful periods and painful ovulation.  I was also told after that operation that I wouldn't be able to conceive naturally and would need intervention if we ever wanted to have children.

I also had a Mirena put in to help things but that backfired.  When the Mirena was inserted, I had a local injection in my cervix which was painless.  However, when the Mirena was inserted the pain was excruciating, and ever since then whenever I get my period or I'm ovulating, I get that same pain in the same place.  I had severe pain with the Mirena and after three months I decided that it needed to come out.  When the doctor went to take it out, it had already worked its way out and would have come out the next time I went to the loo.

Five years later I discovered I was pregnant.  It was a huge shock as my husband and I had decided that we wouldn't use any intervention to have children and we wouldn't adopt either.  So we got on with our lives and children weren't a part of it.  I had a beautiful healthy baby girl and 22 months later had another beautiful baby girl, conceived naturally too.

I had hoped that my painful periods may ease up once I had had our babies, but that didn't happen.  In June last year, I had another laparoscopy which found that the old endometriosis had resurrected itself.  Unfortunately, my periods were, and still are, painful since that operation.

We have been trying for the last two years to have another baby, without success.  I had a miscarriage earlier this year.  I dearly want to have a full hysterectomy as I'm over the pain.  It's been going since I was 12 and while it may not be more painful, the pain is long.  I have seven days out of a 28-day cycle pain-free and I'm over it.  I just need to decide whether we keep trying for another baby or call it quits and I'm very close to calling it quits.  I'm not a big fan of painkillers all the time, I only use them when I can't cope with it as I'm worried that I will become addicted to them.  It is also a pain that wears me down and sometimes I struggle to get through a day.  It's not fair for my girls that I struggle to do things with them.

I just can't wait for the day when I'm pain-free and it's all over.

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