I Didn’t Know About Endo

By Becky Mantuano

I’m going to try and tell you (and not leave anything out) because it’s been one heck of a journey. I guess I always knew something just wasn’t right.

I started my cycles at 13 and they were always painful. Crippling I guess you could say.

At 16 I went on Depro Provera which was a blessing and a curse all bundled up together. On one hand no more painful periods, on the other, drastic weight gain (I’m talking 150 pounds weight gain) in a matter of the 2 years that I was on it. I had depression so bad I didn’t even want to get out of bed, and massive hair loss.

So at 18 when I figured out what was the cause I stopped taking it. Pain came back about 3 months later. I rocked on like this for another 3 years without taking anything. And then a new pain. Right shoulder pain, bad indigestion every month like clock work, and when I was on my period there was the new pain growing in intensity every month.

At 21 it had become too much, I was in and out of emergency rooms. Passed through like just another person looking for pills.

By the time I was 22 I had finally found a doctor who would at least listen to me. I went into the hospital in October and under the knife. The surgeon removed my gallbladder, said that was the problem and that it was full of stones and solid white in color. But that was not my problem, it was only a part of it. After surgery I still had the pain. Every month.

By the time I was 27 I had begun to have severe pain on my right side and had gone to the ER and was told I had a simple cyst which had ruptured and free fluid in the cavity. I was given Lortabs and sent on my way.

One year later at 28, I was back in the ER again, I was told I had a ruptured cyst, given pain meds and sent on my way.

By the time I was 29 I begun having seizures, between 5 and 10 a day. I was sent to a neurologist who ran every test there was, even sent me to a shrink. And in the end decided I was just crazy and prescribed Seroquil and one other psychotic med.

The following October again I was ill. Laid in bed for days feeling ill. My husband kept trying to get me to go to the emergency room but I refused to go because I knew what they would do – or rather wouldn’t. They wouldn’t find the root of the problem. They didn’t care to. Finally, after I had been running a fever I told my husband at 12am I was ready when he was to go to the emergency room.

Once there they ran tests and said my white blood cell count was high and that I would be admitted. I had a surgeon come to my room and state that he knew he was the surgeon and that they are suppose to know these things but in fact they did not. He proceeded to tell me that it was one of two things. I either had a ruptured appendix because there was fluid everywhere or I needed a gynecologist.

So the next morning the gynecologist came in said he believed it to be a ruptured cyst and began giving me iv antibiotics which did seem to help some.

By day two I didn’t even care anymore I just wanted out of there, so even though not one hundred percent improved I said I was to be released.

After discharge I saw on the paperwork that they had stated my cause was pid (pelvic inflammatory disease). Ok I thought, I didn’t think so, but they were the doctors, they would know right?

Well at 30 the pain again intensely controlled my life as it had done for so many years. I found myself out of the county I had live in and stopped in at the emergency room. After tests the doctor had stated I had two complex cysts on both ovaries and that I could not let this just lay there because it was verging on an emergency.

I was referred to a gyno in Greenville, Texas. I scheduled my appointment and the doctor did his exam and said he did not feel any cysts and that the ER report did not show them to be complex, also said he did not feel my ovaries to which I asked, “well where did they go?”

He proceeded to tell me that he could put me on birth control to shrink the cyst but with my history of birth control even a low dose might be bad, but we would try or we could go in for diagnostic surgery. I opted for surgery because while I didn’t know what he would find I knew it would surprise us both.

In May of 2012 I had a diagnostic lap with bilateral cystectomy. Once awake I was told I had stage 4 endo and that it was everywhere. He removed as much as he could and that I did in fact have two endometriomas. He said that I would feel like a new person for at least a year and that it would come back.

So just as he had said, I felt like a new person. One whole year no seizures, they had just stopped. No pain.

But when it came back at 31 it came back in full force. I was a wits end. I heard a radio advertisement for Violet Petal Study and was ready to try anything at this point so I signed up. I took Elagolix or a sugar pill as part of the study and was not suppose to know which one. Well it did keep the pain at bay, but I began having periods lasting months. So the study decided to pay for a d&c with hysteroscopy to find the problem. Once awake I was told they removed two polyps which they believed caused the bleeding and lots of tissue.

Periods stopped. Wheww what a relief.

But two days later it came back. Heavy. I was told by the study doctor that it was more of an inconvenience than an emergency, sent on my way, and was told to keep taking meds.

I went with my better judgement and saw a gyno of my choice for yet another diagnostic lap with a d&c and hysteroscopy less than one month from the previous d&c.

So enter yet another surgery.

After the surgery I was informed that the bowel, bladder, uterus, ovaries and tubes were all glued together and that I would have to have another surgery. Because at this point it was life threatening, he suggested a hysterectomy. I was on board for it at this point. I was just tired of it all. I have no kids and in my shape this was not an option for me and probably never was. I have accepted that for what it is.

So in December this year I went into surgery again and had a total hysterectomy with tubes ovaries and part of the cervix removed. I was informed that we need to suppress estrogen because of the disease.

This is where my journey ends I hope. I am just disgusted that this is what it came to and that this disease is treated like a cold and swept under a rug. Because it consumed me. I lived, breathed and slept it.

Oh and as expected, no pid.