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As the HMO Turns

Spring 1998

A note from TheBody.com: Since this article was written, the HIV pandemic has changed, as has our understanding of HIV/AIDS and its treatment. As a result, parts of this article may be outdated. Please keep this in mind, and be sure to visit other parts of our site for more recent information!

The scene opens with an African American woman in a physician's office, on an examination table, with her legs up in stirrups.

The conservation goes as follows, after the doctor walks in, "You know you won't have to have these colposcopy's if you had a hysterectomy." "I don't want a hysterectomy," I said. The doctor replied: "Why?" "I still want to have a baby." The doc: "You have fibroids." Me: "AND??!!" "Well we could do the hysterectomy. It will remove the fibroids, and you won't have the abnormal Pap Smears." My response: "The Fibroids aren't bothering me, why should I bother them?" "Well we could remove it and you won't have to do the colposcopy's."

I won't continue to bore you with his impotent remarks but I will continue with his actions and responses.


My Uterus

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We discussed the size of my uterus previously and currently. He noted I was spotting, and HE decided it was too early for MY period. (Even though I had informed him that my period usually comes 21 to 31 days apart. I won't even tell you he did count the days from my last period and it was exactly 21 days.) He decided to do a biopsy of the canal of my cervix. He also sounded my uterus. Basically the sounding procedure for me was as follows. He took a plastic cylindrical instrument of some sort and rammed it around my cervix, until he reached the bottom or base of my uterus.

I cannot begin to explain the tremendous amount of pain I experienced. Nor can I express the amount of terror I felt when I saw the BLOODY plastic piece of crap he had just shoved up my cervix. All the while, wondering if he was purposely attempting to render my ability to bear children impossible.

I realized and recognized, he was pissed because he had to do a colposcopy on a woman with AIDS. I am also cognizant of the risk factors of HIV and Cervical Cancer.


Abnormal

Just a week or two earlier the HMO had called to tell me they were canceling the colposcopy because I had a Pap smear with abnormal results.

HELLO!!! Is anybody home? This is the purpose of having a colposcopy; after having an abnormal pap smear. I had to threaten to call Membership Services, in order to receive my exam. Maybe it is me, but the research recommends that HIV positive women need a pap smear every six months with colposcopy to follow if the pap is abnormal.

HELLO!! Am I the only one following the research, or even familiar with the current standard-of-care for HIV positive women.


Doing Everything

OK, let us evaluate this scenario. My doctors have diagnosed me with AIDS and I have had two abnormal Pap Smears in the past year. NO Colposcopy followed either pap. I then received a call telling me the Colposcopy was canceled.

I HAVE to advocate for myself, and I have to do the research, and I have to inform the supposed physician, of my menstrual cycle (regular or irregular)! How loud do I need to shout? Whom do I need to tell, in order to get my gynecological needs met without resulting with the insistence of a hysterectomy?

"Dr. Butt for Brains" calls and decides immediately that I MUST have a hysterectomy, or a procedure that will take all the cells from my uterus by cauterizing the outer layer of the uterus. (in basic English; burn the lining of my uterus). He is kind enough to tell me that both procedures will render me infertile. He then asks why I do not want to have the hysterectomy. I explain again, I want to have a baby at some point in my life. His response: "YOU have AIDS don't you?"


LEEP

OK. The good "Dr. Butt for Brains" does not realize I have done my home work and I know there are three more possibilities. I then inform him about LEEP, a second biopsy. Or maybe he could just closely observe the MILD Dysplasia. Well apparently he did not hear or either chose not to understand what I had to say. Because, he had someone call me to schedule the procedure.

HELLOO!!! I generally speak very clearly and distinctly. There was very little room for misunderstanding my concerns. I am sure he was doing what ever was on his agenda.

I then refused to EVER see this beloved Physician, "Butt for Brains". When I asked if I ever had to see him again, I was told there were a number of physicians who were at this particular facility. Well, that was a welcome relief.


Scrotum

I wonder if someone had told him there is a non-cancerous lump in his scrotum, which appears not to be troubling him, would he be so prepared to remove his testicles? I THINK NOT!!!!! If he opts for the surgery, I hope they will let me assist. I will definitely be there for his grief and loss support.

O.K. enough fun, and back to the story: "Dr. Butt for Brains" was 86'ed. Two days before Thanksgiving, I went to see another doctor whom assumed HE was going to do the LEEP procedure to remove a thin layer of my cervix. Will they make the mistake of allowing me to read the consent form? They did, and I did. It stated; "...possible side effects, INFERTILITY" (in plain English, I won't be able to have a baby). I explained to the nurse I would consent to a colposcopy but the LEEP would have to be done on someone else, other than me. So, a repeat colposcopy was done and at that time, the new physician stated it would be difficult to repeat the biopsy because of where "Dr. Butt for Brains" took the first biopsy. Therefore, the next challenge was to attempt to dilate me. This painful process took 24 hours. It would have been OK, if I had given birth during the process. Anyway, I went back. The biopsy was taken and I spent ALL of Thanksgiving in bed, in pain.

Finally the results came in, which by the way were left on my answering machine, but Thank God, the biopsy was negative! I explain, if the situation had been more serious, I would have done the LEEP procedure or even the hysterectomy. The LEEP procedure offers a low risk of infertility, but it is possible. I would have gladly had it done if my dysplasia had been more severe.

I am not against treatment, but I am against mistreatment. I feel this one doctor (BFB) had decided that a woman with AIDS does not have the right to have children, or the right to an opinion about her reproductive health. I also feel he was afraid of HIV. I wonder how many women who come into that office are HIV positive and have not disclosed. This should be his area of concern.

At least with me and the many women who disclose, a health care provider is able to protect himself or herself. Please remember; HIV will not jump up and attack you, simply because you are negative.


Nine Things

This experience has taught me 9 things:

  1. Some doctors are JERKS, in addition to being uninformed about HIV.
  2. The bias of a health care providers affects the quality of my health care and others'.
  3. Information on the standard-of-care is available and it is up to us to obtain this knowledge and to advocate for ourselves.
  4. Many physicians are not familiar with the standard-of-care for people with HIV.
  5. Health care is a right, not a privilege.
  6. Most Important, I can hire and fire anyone who treats me inappropriately, or who discriminates against me because of my sero status (in basic English, HIV positive).
  7. Not all doctors want to treat women with HIV/AIDS.
  8. You can challenge the knowledge of your physician.
  9. God can do anything in spite of jerks.

A note from TheBody.com: Since this article was written, the HIV pandemic has changed, as has our understanding of HIV/AIDS and its treatment. As a result, parts of this article may be outdated. Please keep this in mind, and be sure to visit other parts of our site for more recent information!



  
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This article was provided by Women Alive. It is a part of the publication Women Alive Newsletter.
 
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