The Value of Support Groups
When I was diagnosed with endometriosis at age 28 – 16 years after my symptoms had first begun – it was more by accident than by design. I had been suffering mysterious pains following a miscarriage and my OB/GYN, having run out of other options, decided to perform an exploratory laparoscopy.
I thought it was normal...
“It’ll be a 20 minute procedure”, he told my husband and me. “After that, we can decide on a treatment plan.” Two hours later, he finished removing the extensive endometriosis he had found inside me. “How were you not in extensive pain during your period?”, he asked me later. I was, all the time, but I had been told that it was normal.
After explaining, in the most cursory terms, what endometriosis was, my doctor sent me on my way with the advice to start trying for a baby again soon. I didn’t think I needed more information; I thought I knew what endometriosis was. I finally had a proper medical explanation for my debilitating period pains.
It was not until a decade later, when I had moved from Canada to the UK, that I found a support group for women with endometriosis. I hadn’t really been looking for a one; I was researching treatments for endometriosis as my periods had become horrifying again. I stumbled upon a group and I joined their online forum. Reading the stories of my fellow sufferers, I felt as if a whole world had opened up to me. Not only was I not alone with my pain, but there were so many other issues in my life that were the result of endometriosis.
Finally, an explanation
For example, there was the fatigue. My husband always complained that we never went out anymore. We never really had any fun. Which was true, and it was because I was always tired. For years, I chalked it up to the fact that I worked full time and we had young kids. I conveniently ignored the fact that my husband also worked full time and cared for the kids, and he had energy to spare.
Then, there were my moods. As the years progressed and my endometriosis got worse again, my moods sunk lower. I snapped at the kids more. I was less tolerant of my husband’s quirks. I didn’t have any fun anymore and I often felt depressed.
The surgery that changed my life
Reading about other women having the same low moods and fatigue – and learning that it was due to endometriosis – contributed to my getting a hysterectomy. I could deal with the pain – after all, I had been in pain for 25 years: I was tough – but I hated the fact that my relationship with my husband and kids had become strained. Two years ago, I bit the bullet and had a full pelvic clearance (hysterectomy with removal of ovaries and cervix).
This surgery changed my life. I am not kidding. I emerged from my recovery a changed woman. I am full of life again, energetic and optimistic. Even my children told me they feel like they have a different mother. My husband and I have fun again (and not only outside the bedroom!). If it wasn’t for that support group I had found, I would still be plodding on in my life, trying to get by with the birth control pill and pain management.
Support groups are important, and we can’t stop providing comprehensive information to women afflicted with endometriosis.
Have you ever experienced a "weird" symptom and wondered if it was endo related?