Endometriosis story

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

Diagnosed at 37, 2 surgeries later and considering hysterectomy at 42

by Carrie

I used to have dainty little periods. 5 days, no cramps or mood swings, and I used the tampons with one drop highlighted on the box, even at night. I was strangely smug about the ease of my monthlies as if it was a mark of my good character and no muss no fuss brand of femininity.

I grew up in a periodless household- my mom, as both my grandmothers and an aunt, had a hysterectomy early due to female problems. I come from a legacy of endometriosis on both sides of the family tree, as well as ovarian cysts bigger than grapefruits that weighed more than newborns.

After the women in my family had 2 children, they closed up shop permanently and were seemingly glad to do it. There were no feminine hygiene products in my house and no discussion of what to expect. In fact, I was made to feel embarassed of my period. I remember once receiving a free sample of Always in the mail and attempting to bring it into the house undetected, and my mother startling me at the front door. I threw the pads into the bushes, which she saw, and I was doubly shamed to have to retrieve them in front of her.

I also recall a fight with her in my teen years in which she yelled “If you are so grown up why don’t you buy your own kotex.” Shame permeated the issue- once the dog got into my bathroom waste basket and chewed up all my used pads and my stepfather took me aside to tell me I had to clean it up as my brother shouldn’t have to see that kind of thing.

Throughout my teens and twenties periods were a nonissue- I was relieved and grateful to for it to arrive on more than one occasion. In my early thirties I started having more cramps, and a dull ache in my right leg during and after my period. I got married at age 37, and around that time a huge change occurred. I began bleeding between periods- and cramps were debilitating. I was diagnosed with endometriosis then, but I suspected that as I knew my family history.

I was in China at the time and I was booked in for a laproscopic surgery to remove cysts. What was supposed to be an hour surgery became 5 hours and my new husband had to sign papers approving a 5 inch incision across my abdomen as the drs found endometrial tissue and scarring had made a mess of my insides. They had to move my organs around to scrape scar tissue off of my bowel, ovaries, and uterus.

He never really recovered from my surgery- I think he distrusted me for getting sick so soon after we were married. It was not what he signed up for.

After a month long recovery which included a bad reaction to the surgical glue and multiple injections to the incision, things improved for a while. About 18 months, to be exact. Then the pain and bleeding started again and I went back to the Taiwanese Dr with the terrible bedside manner and was told that cysts had grown on my left ovary and it was unlikely that I would be able to keep it.

I rode my bike home in shock. Would I grow a beard and become mannish? Would I have enough hormones? Could I have a child?

On the day of the surgery I asked the Dr to do everything he could to save the ovary. I walked into the operating room and lay down on the table (in China you walk to your surgery- a kind of surgical “Dead Man Walking”) and I was asked to roll over on my side. We had not discussed the method of anaesthesia and I balked at the prospect of an epidural. The Dr won that battle of wills and the next thing I remember was him waking me from surgery to show me my diseased and cyst covered ovary in a glass jar. He wasn’t able to save it.

I recovered from that surgery but the endometriosis continued to worsen. I endured cramps and terrible periods for another year while I was married as we were trying to conceive. After that relationship imploded and I left the rubble and pollution of China behind I decided to get back on the pill to regulate my periods.

The first couple months on the pill were fine. Then in June of this year I started bleeding again. It’s now late November and with the exception of about 10 days I have bled consistently for 5 months. (There was a 5 day international booty call in October where I was able to hold back the flow with a combination of creative medication and the power of my mind).

I have been under a Dr’s care here in Poland, a lovely young OG/GYN who I can actually text if I have a problem. We have tried 3 different kinds of birth control pills which have in turn caused paranoia, depression, and lethargy. I am flooding- dropping clots as big as a fist, having to get up 3 times a night to change my monster mega pad, actually hearing the blood flow out of me in my yoga class.

And, as the endometrial lining is wrapped around my bowel, I have pain deep inside of me and spend a night a month cramping on the toilet. It’s gross, painful, and nobody wants to hear about it.

As I write this I am awaiting results from my D and C last week. Since the 3 rounds of birth control pills and anti bleeding meds have not worked, the Dr has decided that it’s time to check the uterine lining for “bad cells.” I did my research and it is clear they are looking to see if I have uterine cancer. Or it could be the last stage of endometriosis- or a fibroid disrupting my endometrial lining. I am not calmed by this list of possibilities.

I am unmedicated and still bleeding in spite of suggestions that the D and C would stop the relentless flow.

Next stop of my journey is most likely hysterectomy. I am 42 and never had kids, single and without a prospect in sight. Though my DR tries to be optimistic about my fertility and is looking for alternative treatments, I am afraid that ship has sailed. I never thought I would say this, but I am out of reasons against a hysterectomy at this point.

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