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.

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

Average Rating starstarstarstarstar

Click here to add your own comments

Jan 03, 2016
Successful hysterectomy
by: Anonymous

I had a very good hysterectomy experience. I had a laparoscopic hysterectomy 3 years ago and kept my ovaries following a diagnosis of severe endometriosis after being ignored and misdiagnosed (IBS and 'that's just ovary pain') for 30 years - to be honest after the first few times of asking about it I gave up as it just made me feel neurotic.

Then I pretty much diagnosed myself through reading information on the Internet and when it all got too much, despite trying to do the right thing with diet and exercise, I demanded a proper investigation and got one.

I have been lucky in that my hysterectomy has caused enormous relief. My surgeon said it would only relieve 70 per cent of the pain but I think it's more like 95 percent and it has changed my life. I still take great care of myself - eating a plant based diet, taking b12 and exercising regularly including yoga, walking or jogging and swimming.

I don't know if these are the things that have made the difference or if I am just one of the lucky ones but I am very thankful that I had this done.

Dec 27, 2015
Hope this helps, no easy absolute answer!
by: Anonymous

I was diagnosed at 38 & fought the suggestion of hysterectomy that was constantly thrown at me by my doctors until I was 42..... Now on one hand, I no longer have the horrible bleedathons which has been enjoyable. I did keep my ovaries so no early menopause or hormones to take.

I had to beg my surgeon to keep my ovaries! On the other hand, I truly mourned the loss of my uterus & found it depressing as I've never had children.. So final.... Sadly, I still struggle with lots of endo pain. I'm frequently on pain meds & often exhausted.

When he sees up my cervix area there were endometriosis lesions/growths sewn up also... Lots of pelvic pain & I feel ripping of scar tissue when I stand up at times, also my ovaries are quite painful at times.

I'm now biding my time until menopause. Many of the women I've talked with & read about had a full hysterectomy STILL have horrible pain so I don't regret keeping my ovaries.... Hope you find what's right for you!

Click here to add your own comments

Join in and write your own page! It's easy to do. How? Simply click here to return to Your length of time for diagnosis of endometriosis.