Physical experience:
The women who received TVT-TA as part of this study reported their physical symptoms qualitatively and quantitatively during, immediately after, and six-weeks after the TVT-TA procedure. The mean amount of pain, on a scale of 0 (none) to 10 (highest), during, immediately after, and six weeks later was 3.53, 1.79, and 1.21, respectively (Table 1).
Table 1: The physical experience of pain as reported by women during and after ablative therapy
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During Ablative Therapy (N= 34b)
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Immediately After Ablative Therapy (N=34b)
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Six Weeks After Ablative Therapy (N=28)
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Pain Scorea
0 (none) - 10 (unbearable)
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Mean
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SD
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Range
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Mean
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SD
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Range
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Mean
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SD
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Range
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3.53
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2.14
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1 - 10
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1.79
|
0.98
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1 - 6
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1.21
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0.42
|
1 - 2
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Note. N number, SD standard deviation
aAlthough our analog pain score was from 0 to 10 and some women explicitly mentioned in their interviews not having experienced pain during the TVT-TA procedure, no women reported a pain score of 0. See limitations section for possible explanations.
b Two women who received TVT-TA did not report quantitative pain scores
Women who received TA reported a moderate pain experience (M=3.53, SD=2.14) during the 40 second procedure. There was a large range of pain sensation, from very little (1) to unbearable (10). Most women compared the TA experience to menstrual cramps - from light to severe - as well as a burning and pulling sensation:
Like a menstrual cramp. It hasn’t been a strong pain or anything like that. (Participant 2)
There has been little pain. My pain was as if they were pulling something. (Participant 33)
[I would give it] an 8. It would hurt, I would calm down, it was a strong pain… as if I was giving birth. (Participant 41)
Women also commonly reported that they imagined the TA procedure would be much more painful than it was in reality. In fact, several women reported they had been told this procedure would be painful, even when the procedure was new in Iquitos. It is possible that they had been told a different procedure. Overall, women were pleasantly surprised with the manageable discomfort:
I have heard what they say about the pain, that I would not tolerate it, but there has been none of that. The obstetra was talking to me while I was there and then left. I practically did not feel anything. (Participant 44)
Yes, I was nervous because…I imagined something else, that it was going to be painful, stronger [pain]. I don’t know, something like that, but no. The treatment was simple. (Participant 9)
Upon exiting the procedure room after TA, women reported a mean pain scale score of 1.79 (SD=0.78), with a range of very little (1) to moderate (6) pain. However, most women described “no pain, I feel calm, normal, the way I felt when I came in” (Participant 26) or mild pain similar to “the urge to urinate” (Participant 31).
At the six week follow up, women reported a mean pain scale score of 1.21 (SD=0.42), with a range of very little (1) to a little (2) pain. Women also reported moderate yet tolerable menstrual cramp-like pain, beginning at post-treatment day two and lasting for a few days. Six women reported purchasing pain medications (e.g., ibuprofen) from pharmacies outside of the health centers, and one woman reported taking natural remedies in addition to pain medication. During the interviews, many women described how they had anticipated the possibility of experiencing side effects, as they had been informed they might experience about four weeks of bleeding during the pre-TVT-TA counseling. 21 women reported post-TA bleeding; however, five women reported heavy bleeding and were surprised and even scared by the amount of bleeding. The onset and duration of the bleeding varied, ranging from 1-3 days or 1-2 weeks. Most of the women who bled after TVT-TA were not surprised or concerned about the bleeding; however, the five women who experienced heavy bleeding reported going to the health post with concerns about the bleeding:
I have had to use Pampers [diapers] because the Serena [pad] was not enough. I used Serena and it would go through. When I would get up, it [blood] would come down, as if this was leaking… I bled a lot. Sometimes I was afraid to go out in this condition. (Participant 5)
Women also commonly spoke of an unanticipated vaginal odor described as the smell of “rotten meat,” “fish,” “bleach,” “medicine,” or “cheese.” Six women reported going to the health post prior to their scheduled six-week follow-up appointments, and two women reported calling their obstetra for reassurance about their pain level or vaginal discharge. Four of these women were prescribed pain medication.
Emotional Experience:
This study also probed on the emotional response to the TVT-TA process, including finding out about a positive HPV test, waiting for follow up, and receiving TVT-TA (Figure 3). Women cycled between fear and relief as they learned they had high risk HPV and then heard that there were potentially simple and fast treatments that could be done outpatient at the primary level.
Regarding their feelings when they heard of their positive test results, all women reported feeling scared, and some reported sadness, crying, and anger.
At the start I felt a bit bad, I felt sad. I didn’t know if I should cry or be angry. (Participant 7)
It’s like a bucket of water. It’s something I don't know how to explain, sudden news. I got a little depressed. I felt bad. (Participant 44)
I felt tense, half scared, how am I going to have that? I was worried. I couldn’t believe I had it. I was worried. (Participant 45)
Though a positive HPV result does not indicate cancer, women commonly associated positive HPV results with cancer, and four women remembered a loved one who died from cervical cancer.
I received [the positive test results] poorly. I felt very bad, just with the word “cancer” I feel terror, because my mother died of that, of uterine cancer. They told me I have the virus, that if I don’t do treatment, from here to 10 years cancer could develop. Psychologically to me this is something terrible. (Participant 21)
"Don’t cry," the obstetra said to me. But who can think that? Because I have a cousin that died; it has not even been a month since we buried her (...) she died with cancer, only a matter of time. (Participant 11)
Prior to treatment, some women felt extremely nervous. They worried about their positive HPV results and any pain associated with the procedure.
Because I imagined that they were going to hurt me, that suddenly it was going to be a pain that I couldn’t stand, that I was going to cry… It felt like with the Pap, only of course that it has been a little bit painful, nothing more. I mean, it was something I did not expect, I imagined something worse. (Participant 7)
Most women appreciated counseling by the obstetra, which decreased nervousness and fear by teaching about the virus and what to expect in treatment.
With the obstetra’s explanation, she explained more clearly, in detail, then I calmed down because she told me that it's not bad yet. (Participant 10)
They have made me understand that it is not the disease, but the virus, that I am on time. (Participant 26)
I was a bit surprised, but when she was explaining it to me, I calmed down because I thought that, as they say, cancer, that it was already cancer and she told me that no, it was just the virus, but that's what the treatment is for, and that's why she referred me here. (Participant 18)
Other women, however, did not understand or were too scared to focus on the information provided in the obstetra counseling. When asked about whether counseling about the treatment was provided, one woman responded:
Yes, I think she explained to me. Because I was a little bit scared, I think I forgot. (Participant 29)
After the procedure, all women expressed relief and happiness knowing that they could eliminate their HPV, decreasing their chances for future cervical cancer. They appreciated what they described as good treatment, with no surprises, by caring obstetras.
It was as I imagined because they had already given me a talk previously (during the delivery of results). (Participant 24)
I say better because now I know that I have the treatment. (Participant 9)
I feel better, because they are giving me a good result that will be for my good. (Participant 22)
Reflections on the process:
The most common sentiment described regarding the treatment process was that it had been worth it, with many women commenting on relief at how quickly their positive test results were managed, and others commenting on the relief at not having to live with the anxiety of waiting for future tests and treatments.
They always look at me and ask me if it hurts. "No," I tell them, "it hasn't hurt me.” I have withstood everything they have done to me. Yes, I feel at ease now because I am already undergoing treatment. (Participant 32)
I felt comfortable, and it was better because I felt like when I get the treatment I am going to be healed. (Participant 27)
The quick resolution offered by TVT-TA was commonly mentioned in the interviews. Sixteen women explicitly said they were satisfied with the time between screening and treatment.
But, as soon as the results came back, the doctors did not even take a week to do this for us… Them [health providers] knowing that the results were positive, they have rushed to do this [treatment] on time and quickly. We have had one month and a half and already, already we are healing…. Thanks to God that they have treated us fast and we are being treated and already healing… (Participant 11)
The attention, right away. When I had the treatment, I will tell you that I felt relieved. (Participant 44)
I see it as a good thing because it is only a few days, two days. I have only had to wait two days for my treatment to begin. (Participant 41)
A few of the women spoke about the decrease in the amount of time needed for the entire screening to treatment process in comparison to their previous experiences with other forms of cervical cancer screening.
Faster than a test... a Pap smear… takes a month to two months [between screening and results]. (Participant 20)
I think it has been good, fast, because when I did the Pap smear, they made me delayed, how long I have waited, after a year that... I got the results, after a year. (Participant 11)
Almost all women mentioned that they would recommend the procedure to other women.
“Well,” I tell them [neighbors who found out that I had this disease], “I was scared, but I recommend this,” I tell them. “It is good to know what it is and even much better when they tell you that you will have treatment that instant.” I thought a lot and got scared, I even lost my appetite… But thinking about it well… I prefer that they give me a treatment instead of worrying about having this disease… As I said, I am not embarrassed to tell them [neighbors], yes, I tell them, I tell them what it is. What my treatment has been. Thank God it has all been done in one instant…” (Participant 32)
I have already recommended it to several people, as I said, to my aunt, to my cousin, to my sisters. I have also told them that it is good. (Participant 2)
Yes, I have told several of them, my neighbors, when they came to see me, I have told them "why don't you have it done? Do your treatment on time so you know what you have (...) "Yes, well" they have told me, "but... but that treatment that you have had in particular, it costs, almost 400 [soles]" a neighbor told me (...) I tell them that, "send them to have it done, right now, it doesn't cost anything, everything is free (...) That is what I tell neighbors... I tell them, "Do it on time, follow your treatments. (Participant 11)
Many of the women also expressed a desire for the TVT-TA strategy to continue and be expanded so that treatment can reach more women.
Let them continue with this because many women in Loreto are getting sick. (Participant 18)
[I would say] that this test be extended in the region. Because it cannot be my case alone, but of how many women within our city of Loreto, that may be like me. Suddenly, they do not know because we may seem like we are fine on the outside... Well for me, my advice would be to expand this method and this treatment for many women who do not know about this virus that I could have in my body. But suddenly there are cases of women who are more advanced and who do not know about it or suddenly out of fear, fear, they do not go to a health center. (Participant 7)
Overall, there was a tremendous amount of positive feedback and gratitude for the obstetras’ and doctors’ hard work and the TVT-TA method.
Thank you because there is this method that can save us; well, not all of us have the same luck, others are already too advanced in their disease because some are afraid of being checked or touched, but no one lives in fear, on the contrary, we must try to take care of ourselves more, to be able to control ourselves more as women on the outside and inside, let's say, on the inside. (Participant 26)
To the doctors who are linked to this program, I ... tell them that there are many people who have benefited a lot through this program and that this should not be lost, that it should not disappear. There are many people, like me, humble people who have nothing and through this program they are able to benefit, to have these treatments and to be healed. (Participant 44)