True Stories

True story: "I had endometriosis & didn't even know it"

Jolene* only found out that she had this debilitating disease when she was trying to fall pregnant. She opens up about the emotional anguish she suffered as a result of the discovery.
 

endometriosis

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“My husband and I waited until we were in our mid-30s before trying for a baby. We were both busy with our careers and wanted to be financially secure before starting a family.

I’d always been pretty healthy. I was physically active, didn’t have any serious medical issues and had never undergone surgery or been hospitalised before. My periods had also always been regular. My hubby was healthy and active too, so, despite the fact that I was 36, I didn’t think that I would have trouble falling pregnant. After all, most of the women in my family had had their children when they were in their mid- to late-30s.

A surprising discovery

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After six or seven months of trying, my husband and I went to see a specialist to find out why I hadn’t conceived yet. Tests showed that I had ovarian cysts, or polyps, which were, thankfully, benign. I was told that these cysts were normal and that I had nothing to worry about because they would disappear on their own.

Unfortunately, my pelvic ultrasound uncovered another more serious problem – I had endometriosis. Up until that point, I’d never even heard of this condition, let alone imagined I had it. Strangely, I’d never experienced any symptoms, like abdominal and lower back pain, painful sex, abnormal menses, and abdominal fullness. In my teens and 20s, I’d suffered from painful period cramps like most of my friends, but I assumed they were part and parcel of menstruation and didn’t think I needed to see a specialist about them. Very often a couple of painkillers were enough to get rid of them.

More bad news

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My endometriosis was pretty bad and my doctor was concerned that it had gone undiagnosed for so long. Because there was so much scarring and inflammation in my pelvic area and a blockage of my fallopian tubes, he told me that falling pregnant would not be easy. He suggested removing the endometrial tissue that was blocking my fallopian tubes and going the IVF (in-vitro fertilisation) route later. That was the best solution to help me have a baby.

I cried buckets when I got the news. My husband was open to any solution but told me that he would leave the final decision to me. We did desperately want children but we weren’t sure if we’d be able to navigate the long road ahead. There were financial costs to consider, first of all, and second, we knew that having a baby was no guarantee, even after the surgery.

A distressing and exhausting process

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The next few months took a lot out of me, emotionally and physically. The surgery to fix the blockage in my fallopian tubes went fine but the doctors also discovered endometriosis around my ovaries. Unfortunately, I was told that this might also affect my fertility. Nevertheless my hubby and I still tried to conceive, but with no success.

I knew that IVF would be problematic because my ovaries were damaged as a result of the endometriosis. It would be difficult harvesting enough ‘good’ or quality eggs that could later be fertilised outside of my body. When I did my own research, I found out that women with endometriosis just have a different pelvic environment. The inflammatory substances tend to affect the function of the eggs, as well as their quality and quantity. I wondered if IVF was even a viable option. And then there was my age. I was almost 38 now and aware that it would be even more difficult for me to have a baby.

For the next year, I was so depressed that I wanted nothing to do with my doctors. I’d gotten most of the endometrial tissue removed, which is what I needed to do, but it was clear my body just wasn’t conducive to pregnancy. That made me angry and I decided not to make any baby-related decisions for a while. When my husband and I decided to see our doctors again, I was pushing 40.

The sad reality hits us

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The older the woman, the harder it is for her to fall pregnant. Shortly before I turned 40 I decided to try IVF. It was my final attempt to try and have a baby. It was a long and expensive process, full of disappointments along the way, and my husband and I cried a lot together.

After a few failed IVF attempts we decided to give up. As I expected, I just wasn’t producing enough good eggs. I was 42 by now and resigned myself to the idea that I would probably never be a mum.

Several years of trying for a baby and being extra-vigilant about my reproductive health really took an emotional toll. My world had revolved around becoming pregnant and now it was time to walk away from my dream. It was a depressing and stressful time, so much so that I had to take six months off work so that I could give my mind a break. I felt beaten, but worse, it hurt to know that I would never have kids of my own.

I’m 43 now and my husband is 45. We have talked about adoption but my husband feels that we’re probably too old to be running around after a child. We don’t even know if we meet the age criteria for adopting a baby in the first place.

All my friends and siblings have children so I feel like an outcast in a way. I know that starting a family isn’t the be-all and end-all of life, and nobody has ever made me feel bad for not having kids, but I still feel like a failure. I’m especially sad for my husband because my endometriosis denied him the chance of having kids with me.

I wish I’d learnt about the endometriosis sooner. Then again, who knows if the problem was that bad when I was younger? My advice to women is not to delay having kids, because you never know if it’s going to be difficult for you to conceive when you’re older. Sure, it’s hard juggling babies and a new career when you’re young, but in my opinion, the heartache of knowing that you’ll never have kids of your own is even worse.”

*Name has been changed

Basic information on endometriosis (from Singapore National University Hospital, Women’s Center)

What is Endometriosis?

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Endometrium is the tissue that lines the inside of the womb (uterus). During the menstrual cycle it increases in thickness in preparation for pregnancy and if that does not occur it is shed off. The bleeding that occurs during the shedding off is what is called as the menses.
Endometriosis is a condition where the endometrium is also found in other areas of the body, usually within the pelvis. Like normal endometrium, this tissue also responds to hormones secreted by the ovary and is built up and shed off the same way. However unlike the normally sited endometrium, this "internal menses" has no way to get out of the body.

Over time, this process can lead to the formation of ‘chocolate' cysts (brownish fluid-filled sacs) in the ovaries or scar tissue and nodules (bumps) around and on the surface of the pelvic organs. Also, sometimes the internal bleeding from the endometriosis can cause the organs in the pelvis - the urinary bladder, uterus, ovaries, tubes, and the intestines to stick together (adhesions). Endometriosis is not cancer.

Why does it occur?

The cause is unknown but several theories have been put forward. The most widely accepted theory is ‘retrograde menstruation'. According to this theory, during menses some of the menstrual blood flows backwards into the pelvis through the fallopian tubes. This menstrual fluid has some endometrial cells which implant on the reproductive organs or other areas in the pelvis. These implanted cells cause endometriosis.

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