Pap Test Success for Incest Survivor

I am an amazon! I had a pap test and negotiated for what I needed. Yay me.

I went to the drop in clinic today because I have a stomach bug (at least that’s what I thought) that wasn’t going away. The doctor ruled out the bug pretty quickly and then asked if I had pap tests regularly.  I said no. She asked if I was ready to have one today. I decided I was up for it. She wanted to check and see if there was something wrong with my uterus.  I decided I was. 

She handed me a paper sheet and was about to leave the room when I said “can I sit up for the test?” At first she said no. If I hadn’t already had a perfectly normal pap test sitting up,   I would have believed her. I explained how the other woman had done it with the back of the table up. She said “I don’t  know how to do it that way”. I said “I’m a rape survivor and I’d be more comfortable.” Her face softened an almost imperceptible amount and she said she would try.

I told her that the other woman had lifted up the back part of the table. She set it to an upright position and left the room so I could change. I’m not sure if she went online and looked up how to do it, because she was gone for awhile.

When she came back she had me sit on the table with my knees bent and my feet touching, then allow my knees to fall apart from each other. I think this was the part she looked up. She didn’t use the stirrups. This was actually even better than sitting up with the stirrups. Then she did the pap test pretty normally and fast. She seemed impressed that it wasn’t any harder to do in that position.  I told her that a group of doctors in Alberta had published a booklet that suggested it as a better way to do pap tests for survivors, and it certainly worked better for me. She said it might be a good new way to do it for everyone, since most women don’t like to lay down (it sounded like herself included).

Rape survivor is so much easier to say, and yet still correct, than childhood sexual assault survivor, incest survivor or any of the terms that bring in the messy details of my age when it happened or who was the perpetrator.

Anyhow, I came through unscathed, no meltdown, no triggers, feeling empowered. I think I have this blog to thank for being able to be so articulate with my doctor. I’ve gotten so much more comfortable with thinking about and talking about my vulva and what I need as a survivor. It’s really common after all.

My next step I think is to try and find a specialist to do some reconstructive surgery on my vulva, and get rid of those little sore tags of flesh.

Here’s a link to the booklet I was referring to:

Eureka – take that, vulvadynia!

Okay, I seem to have it figured out.

The yoga is great, but I found something even better. Just becoming aware of how often I clench the muscles of my sore, rape-injured body was a big first step. Now I’m learning to train my body not to do it.

It helps that it doesn’t hurt much any more. The clenching was a reaction to the pain. My guess is my smart child self figured out that clenching restricted blood flow, which dampened pain. It does do that, but now, years later when the wounds have mostly healed, the restricted blood flow causes damage and pain of it’s own.

Heating pads.

The yoga increased blood flow thing worked so well at bringing the pain down, I’ve moved on to prevention. I’ve been sitting on a gentle heating pad, set on low, while watching TV with my honey. The constant gentle heat keeps reminding me to relax, and with that relaxation, I feel so much more grounded and safe, less on guard, which should be a paradox, but isn’t. The heat and a conscious decision to relax have allowed me to get familiar with the sensation of not-clenching, and helping me make it the dominant way my body is. I still clench, but not as much, and my vulva is a lot better.

It reminds me of training myself not to clench my jaw (TMJ) a few years ago. I’d do big yawns to loosen my jaw before bed and put heat on my jaw joint, consciously loosen the muscles and put them in a position where they weren’t as easy to clench, jaw hanging loosely. Over time, it gradually lessened, and although I don’t know if I never clench my jaw when I sleep,  I no longer wake up with a sore jaw, and the dentist doesn’t mention it when I go.

I’m thinking this is advanced-survivor stuff. Perhaps ten years ago, unclenching my muscles would have brought flashbacks that would have seemed too daunting to embrace. Perhaps they are still working themselves to the surface, although perhaps not since I’ve remembered the injury I’m recovering from. Perhaps I couldn’t have done it before I saw the scars stretching across my vulva from the rapes. Knowing is always better than not knowing, no matter how hard it is.

A good friend of mine from my teens got in touch recently. I hadn’t seen her since the first year of university, or perhaps before. She asked me how my parents were. I realized she must not have heard, that I didn’t tell her back then, at the beginning of my healing.  I wrote back that my parents had split up, and that I don’t see them, and asked how her parents were. There are many ways to tell, and which I use depends on my sense of balance between a strong certainty that I won’t lie about this any more against the need not to drive people away with awkwardness.

Complete and specific honesty is reserved for therapists, close friends and other survivors, who usually can take it without saying something stupid or hurtful or shrinking away from me, which is worse. This would be “My father is a sociopath and raped me starting when I was a preschooler. We lost touch after I reported him to the police. I recently found out my mother was actively complicit, so I don’t see her any more either.” Telling it this way is the best. It is a truth that prevents ever having to dance around the topic again. It allows my inside and my outside to be congruent and gives accurate context for things that may come up.

The other versions, for trusted non-survivors, are a lot less specific, such as “My parents were abusive and I don’t see them.” If the person accepts this, and leaves the topic alone, or says, ‘mine weren’t great iether’, we have a stronger friendship. If they say some rubbish about forgiveness or parents doing the best they can, I write them off.

If the person or situation isn’t important enough to get into it, I tell the truth, but not much of it.  I will tell strangers and acquaintances partial truths such as  “I don’t see my parents much” or “My mom is in X and my dad is in Y, they split up a few years ago.” A bland partial truth is usually enough to satisfy the question, and change the topic without lying.

I thought about telling my old friend more, but I decided to be more gentle. She knew my mother and father after all. This tragedy happened to people and in places that she is familiar with, that don’t have the distance they might otherwise have. She can read between the lines, and if she wants to know, she’ll ask. If she doesn’t, I have no need to tell her. Another thing that has loosened.

Icing my vulva

I’ve had pain and itching in my vulva for most of my life.  I’ve worn out holes in the fronts of underwear from scratching. This, I’ve found through some recent reading, is actually pretty common with vaginal injuries like mine.

This summer, when I found out about the two tear scars and vascular damage, it all began to make sense. The medical professional that saw me suggested I ice my vulva when I was feeling pain or discomfort. Well she said something cool, and I’m using a well wrapped ice pack.

It works. It actually works and I don’t have to dissociate from that part of my body any more.

The pain happens without warning, and I’ve gotten accustomed to ignoring it. But now I have something to do about it, something that works.

So tonight I’m sitting on an ice pack, watching TV.

May you rot in hell, Dad.

This, as my friend Butterfly would say, is why you shouldn’t fuck kids.

Email I just sent my brother

Here’s the text of an email I just sent my brother. In my therapy session today, it came up that my father stole all my support from me by doing something so taboo, that I couldn’t talk about it or get support from anyone. We came up with the idea of telling my brothers and some key friends about the scar tissue so I could share the burden a bit. My older brother is kind of a good choice to start, since my relationship with him is already very distant, there isn’t much to lose if he doesn’t respond well.

My brother is a medical professional, which is why I’m being fairly direct about the gyne exam stuff. I’m assuming that part of it won’t phase him, although who am I to know what is appropriate for this kind of thing?

 

Dear [brother’s name]

I was hoping to talk to you in person, but we haven’t connected.

I’ve had some difficult news.

I’m finding I need to share this information, so it’s not just me holding it. I’m hoping that it matters to you as my brother that this happened to me. It’s awkward and odd to tell you this in an email, I know, but would also be awkward and odd on the phone too, and I figure email lets us both save some face if you don’t want to speak with me about it.

This matters, and I need to tell people who matter to me about it. You are welcome to share this information with [his wife’s name].

I had a gyne exam a few weeks ago. I wanted to have more time to ask questions, so I booked an appointment with a nurse practitioner. Because we had more time, she was able to have me sit up, see what she was doing in a mirror, and I was able to ask her opinion on whether or not I have scar tissue resulting from being sexually assaulted as a young child. It turns out that I have a some scars and flaps of tissue indicating that my vagina had torn significantly and had healed without being stitched up. I also have some vascular damage in the area. I was able to see the scars and damage clearly. The nurse practitioner’s opinion that this was very old damage and was consistent with damage from a childhood assault. I haven’t given birth or had anything happen as an adult that would account for any kind of scars or damage.

I’m absolutely furious. I remember the incident that caused this damage clearly, but given the nature of memory stored during trauma, it has been possible at times to be in denial about it. Having physical evidence is something I’m still adjusting to. It is helpful to have proof that I’ve been right in what I remember all along, but the reawakened anger at [abuser’s name] and grief for that little girl is at times overwhelming and I have very few people who know my history around me. I have a good therapist, but otherwise am quite isolated about this, as it’s not exactly a polite conversation topic.

I know you and I haven’t been close in a long time, but I wanted you to know about this, and hope you can understand why I didn’t want to be alone with these facts. It would be a comfort to me to hear from you and know that you understood and perhaps even shared my anger and horror that even [shithead abuser’s name] could do something so heinous. I’ll understand if that’s not something either you or [your wife] wish to do, but I thought I’d ask.

Aside from all this, in regular life I’m doing very well. My business is still thriving, [wife’s name] and the dogs are well, and we just had a very fun and social weekend here with friends. I’m still the resilient, strong and capable person I always am, so am not looking for any kind of big-brotherly rescue, just to begin to share the burden of terrible news in the hopes it will become lighter.

Love,

SwordDanceWarrior

In the wake of proof

Photocredit: Yann!s
Photocredit: Yann!s

Knowing I have scar tissue has changed my life I think. It’s like an incontrovertable validation of what I’ve been saying all along. No longer can I doubt or go into denial about the accuracy of my memory. I know what happened and I was accurate all along. It is an immense relief.

The other thing about it is I am more in touch with my own vagina, which is not so good on the one hand because I’m in mild discomfort most of the time. but is good because it allows me to be aware and take care of my body instead of just numbing that part of my body out. I think in the long run this is an incredibly good thing. It’s what I wanted, to have my body be my own, and to have no part of me belong to him any more out of my own fear to be in touch with horrors.

I have written a separate letter to my mother to let her know about the scar tissue and ask that she write me and let me know what she remembers. I don’t know if I will send it. I should not be surprized she hasn’t written me yet: when given the opportunity my mother will always bail, will always avoid doing anything that makes her uncomfortable and this surely must overwhelm and horrify her.

I want to tell my family “see, I have proof, you need to believe and support me now”, however, really, I doubt it will change anything with them for me. Denial is a powerful force. It is the societal denial that interests me most now. We have to start believing children and making it safe for them to tell.

I have a therapy appointment on Monday and am looking forward to talking this over with my therapist. This changes everything for me, and I don’t know what to do next.

I realize at some levels I have been depressed for awhile, a low level depression, really not sadness as much as a lack of happiness. I’ve been taking some vitamins, meditating and trying to get more sleep and it seems to be helping. Today I had two moments of happiness. I got a book from the library on singing – Anne Peckham’s Vocal Exercises for the Contemporary Singer. It has a guided warmup and then some more advanced exercises for sopranos. I’ve been doing the warmup exercises a few times a week and today was the first time I did the advanced exercises. It was exhilarating to sing in my high clear voice and to find the places where the voice rings and resonates. I had some advanced voice training about a decade ago, and had thought I’d lost that ability. Apparently not. Apparently all I needed was to warm up and work out my voice and it came back. I was singing for the joy of it and full of the joy of it like I haven’t in a long time.

The second flash came as I was walking back from some errands, and passed by a park I like which has some tall beautiful trees. I looked over at one I particularly like and felt a flash of joy in the rich greens of the leaves against a clear blue sky and the peaceful park.

Photocredit: Greekadman
Photocredit: Greekadman

I am emerging, like coming up from under a pool of cool water into a clear day.

Warrior Victorious in Pap Test

Thank the Goddess for Good Medical Care at Last! Photocredit: Great Beyond
Thank the Goddess for Good Medical Care at Last! Photocredit: Great Beyond

So the gyne visit went about as well as it could possibly go, and better than I could have envisioned.

The nurse-practitioner I saw was very experienced and nice and drew the correct line between warm sympathy and matter of factness. She said we could take as long as we needed, and she did the history taking and blood pressure stuff first. She explained everything really fully and was very relaxed, egalitarian and friendly.

She was matter of fact, thorough and respectful about asking my history – saying it woudl be helpful to know whatever I told her. I did a good job too, matter of fact and calm. She said she’d mail me copies of everything she put in my chart and all my test results too, so I’d have it as well.

I’d typed up all my questions, so I wouldn’t forget anything and just handed them to her, which worked well.

I did ask about the scar tissue.

She tilted up the exam table so I was sitting up and gave me a mirror to hold and I could see everything she did, which was great. She showed me the parts of my vulva that she thought showed old injuries. Turns out I have some vascular damage where the veins/arteries are really big and close to the surface and the whole area is hot, which she thought spoke to me having been injured and the veins being damaged when I was a kid. She also showed me some tags of flesh (like little lumps sticking out around the opening) around my vagina that to her looked like I’d torn and had healed without being sewn up. At this point I took a minute to hold my wife’s hand and breathe, since I got a bit emotional, but I didn’t really cry or anything till we left the office and were in the elevator. I haven’t really cried much yet, but I expect I will.

She knows some folks at a gyne clinic where care is given to children who have been raped, and she said she’d talk to them about what signs the vulva/vagina of an adult survivor might show as well.  She said she’d never had a survivor patient before (that she knew of, I add silently) and that the mirror and tilted table worked so well she’ll probably make that standard. She said when she was trained to do pap tests (I guess they practiced on each other) they did it with the ‘patient’ (another student) sitting up with a mirror, so that’s interesting, maybe a lot of female doctors or nurse practitioners were trained that way and might be familiar with it.

I’m pretty happy about finally having proof to back up what I remember, and also that she was able to give me some ideas to help reduce the irritation and sometimes pain all this causes me, that nobody’s been able to help me with so far. She’s suggested cold packs to reduce the swelling, which I think could actually work. We might also get an appointment with a gynecologist to see if they can remove the tags of scar tissue flesh, since they get sore.

I’m also really sad and angry for that little girl with the torn vagina and no-one giving medical attention I needed. I’m pissed at my mother, who obviously should have noticed a little girl with a ripped, bleeding vulva.

And finally, I gave her a copy of the ‘survivor safety form’ I made, and a copy of the article about survivors and pap test avoiding. I suggested that if the  health region wanted to put on a clinic for survivors, there were a lot out there that weren’t getting pap tests.  She seemed interested and said she was networking with a group of other women practitioners and they were looking for groups to offer care to (or something like that), I offered to be a ‘community informant’ if that would be helpful (in health region they like to have ‘advisory groups’). She asked me to email her a copy of the form, which I’ll do. So that’s hopeful as well.

All in all I feel blessed and hopeful. Yay!

If any health care providers (or survivors who want to talk to them) are reading this, here are some links I recommend:

*** My survivor safety sheet: http://sworddancewarrior.files.wordpress.com/2009/04/information-sheet-for-primary-health-care-providers.pdf

***[REALLY GOOD RESOURCE] Schachter, C.L., Stalker, C.A., Teram, E., Lasiuk, G.C., Danilkewich, A. (2008). Handbook on sensitive practice for health care practitioner: Lessons from adult survivors of childhood sexual abuse. Ottawa: Public Health Agency of Canada. http://www.phac-aspc.gc.ca/ncfv-cnivf/pdfs/nfntsx-handbook_e.pdf

Helping survivors of childhood abuse through labour: http://www.gentlebirth.org/archives/abuselbr.html

Prevalence of sexual assault history among women with common gynecologic symptoms. http://www.ncbi.nlm.nih.gov/pubmed/9790390?dopt=Abstract

Health risk behaviors and medical sequelae of childhood sexual abuse.  http://www.ncbi.nlm.nih.gov/pubmed/1434879?dopt=Abstract

Effect of Childhood Sexual Abuse on Gynecologic Care as an Adult http://psy.psychiatryonline.org/cgi/content/full/48/5/385

Warrior Schedules PAP Test

Photocredit: Francois et fier d l'Etre
Photocredit: Francois et fier d l'Etre

Okay, so I think I found a safe (to me) place to get a gyne exam. I found out through some friends that the community health centres have nurses that do pap tests, who are allowed to schedule longer appointments than doctors (who under our health system are allowed 15 minutes, if you can believe it!) .  Somehow a nurse seems less scary than a doctor, anyhow. Less hierarchical power.

How to Book a PAP test for a survivor in 10 not so easy steps:

Step 1: Look up on the web the community health centre my friends recommended. Read web site. Like web site. Find out I live in the wrong area to access this centre.

Step 2: Find out what community health centre I am allowed to go to for my location. Find that there is no website, no way to check out much about what they’re like. Hmmm…. Find short brochure for local community clinic with single helpful phrase: “Ask us what you’re looking for and we’ll help to connect you” and a phone number.  Give up for the day.

Step 3: Go back to web site. Re-read brochure. Print out brochure and put on desk. Give up for the day. Look at brochure several times over the next few days-week.

Step 4:  Call number on brochure. Say “I read in your brochure that I could tell you what I was looking for and you’d try and connect me, is that right?” Answer: Yes, I’ll try.  (Deep Breath) “I’m a survivor of childhood sexual assault and I haven’t had a PAP test in 8 years. I need to find a place to get a PAP test that will be compassionate.” Listen as woman on the line hems and haws a bit (albeit with sympathetic voice), and then when prompted with what I’d heard about the nurses, she says that they did have a nurse that came in briefly for a couple of times a month. She gave me a name and a phone number and apologized that she couldn’t make the appointment for me.  Write number down, thank her and leave room to go to the bathroom, cry, have a snack and tell my wife.

Step 5: Call number. I’ve been given the wrong number and get voicemail that says nothing about the person I’ve been referred to. I call back and ask for the switchboard operator, who confirms that that person is supposed to be at that local. I call again and get a live secretary, who tells me that person has moved to another local, gives me the local. I let her know the operator still thinks the other person is at this local in case she wants to change it.

Step 6: I call the local of the person I was supposed to call. Her voicemail doesn’t say her name or any department that seems related to what I want so I’m still not sure I have the right person, but I leave a message with my phone number.

Step 7: I call back the community clinic and let them know the nurse’s number has changed and give them the new number. The reception nurse remembers me, thanks me for letting her know, and takes my phone number so she can follow up and make sure the other nurse gets back to me, which I appreciated.

Step 8: I get a call back from the secretary for the nurse I’m trying to book an appointment with. She wants to book me in at  9:30 in the morning. I don’t think I can do 9:30, I don’t think I’ll be steady enough by 9:30, since mornings aren’t great for me emotionally. I tell her that I don’t think I can do 9:30 and that the reason I’m booking with this nurse is because I’m a sexual assault survivor  and mornings aren’t a good time for me for this sort of thing. She wisely accepts this without comment. We work out that 10:30 would be a lot better. She begins large amounts of hemming and hawing, and proposes a date two months from now when she can fit me in at 10 am. I accept, and then she says that the nurse I was referred to isn’t going to be there that day and someone else will be filling in for her. She asks if someone else would be okay and I say well, I asked the health clinic for someone who would be compassionate and this is who they recommended. I suggest that she root through the schedule and call me back when she has something. She seems relieved to agree.

Step 9: Nurse’s secretary calls me back and can put me in at 10:30 am two weeks from now. I accept. I put it in my computer calendar with lots of reminders and my cell phone becasue I’m likely to ‘forget’ about something that freaks me out. 

Step 10: Cry a little in kind of safety-relief.

 

Related posts: “Pap Test, Anyone?”  ” Hidden Disabilities and Dentists”  “The day before the pap “,”Warrior Victorious in Pap Test “,  “In the wake of proof

Related Link: The impact of a history of child sexual assault on women’s decisions and experiences of cervical screening

Pap test, anyone?

Sheila na gig - these are Goddess images honouring the sacredness of the doors of life. This one was found at Kilpeck Church in Herefordshire. Photocredit: Ben Grader
Sheila na gig - these are Goddess images honouring the sacredness of the doors of life. This one was found at Kilpeck Church in Herefordshire. Photocredit: Ben Grader

Okay, so I went bravely forth today on my quest to find a doctor to do a pap test. Like many survivors, I haven’t had a gyne exam in several years, in my case, about 8.  I haven’t had (or thankfully, needed) any other medical care during that time. I have recurrent yeast infections (or something that behaves like it) that I’ve learned to manage with home remedies.

As a childhood rape survivor and taxpayer, I believe (silly me!) that I have a right to medical care that respects my needs. I would like to have an appointment with a doctor who looks me in the eye when she talks to me, treats me as an equal, tells me what she’s going to do before she does it, answers all related questions fully and allows me to sit up while doing the internal exam. I would further like the impossibility of a doctor that can do all of the following in a warm, friendly, matter of fact manner that doesn’t make me feel like I’m crazy for needing any of the above.

I called my local incest counselling agency to ask for suggestions. The intake clinician called back to say that they don’t have a list of doctors and I should try my provincial medical association. I dutifully went to the website of the provincial medical association. As is typical, they are actually a doctors advocacy group, so they don’t have any info for patients looking for specialized medical care.

Then I began having fantasies about becoming a health care advocate for survivors – doing the calling around to find a doctor with a clue, accompanying survivors to medical appointments. What I really need is for someone to do that for me.

I did a bunch of internet searching on the issue. Yes, survivors avoiding gyne exams is a known and documented issue. It’s particularly bad for survivors who get pregnant and have to deal with all the intrusiveness and insensitivity that can happen. In my region, you can hire a doula, or birth support person, who can help with that at least. I wonder if I could hire a doula to come to my pap test appointment?

A research group in Saskatchewan has put together a guide for doctors on how to offer sensitive care to survivors. It’s good, but what I really want is a one page ‘survivor safety lecture’ on some nice authauritative medical association letterhead that says. “the patient who has handed this to you is a child sexual assault survivor. She/he would like the following accomodations in the care you provide to accomodate her/his condition”, with a bunch of check boxes for things survivors commonly want. Maybe with a paragraph at the top explaining how these practices, if selected by the patient,  are recommended care for patients who have been exposed to childhood sexual assault with a nice official medical association signoff.

I’ve mocked uf an Information Sheet for Gynecological Care Providers to use since I couldn’t find anything like it. I don’t know if I’ll use it, but you’re welcome to, if it’s helpful. The suggestions are based on the document quoted near the top.

My wife has said she’ll come to my appointment , if I can find a doctor.  Oh, and by the way, women family doctors are in short supply in Canada. Apparently over 150,000 people in my province can’t find a family doctor. It’s hardly a buyers market out there. I’ve been to a woman doctor who explained in the first session that she had a part time practice and was there only for basic medical care. I forget her exact words, but in essence, if I was the least bit high maintenance I should find another doctor, if I can. I had a problem with painful ears which turned out to be blocked eustacian tubes. She did a quick exam and sent me for hearing testing, when really all I needed was to gently clear my ears and apply moist heat.  The ear specialist was cold and basically told me I was making up not being able to hear well (my ears weren’t blocked that day) and when I figured out what I needed to do on my own using the internet, I wrote my doctor a letter of complaint for not having spotted this simple thing. She called me in to discuss the letter, which essentially was her being defensive and blaming and I left her office in tears. I haven’t had a family doctor since.

I’ve gone to the drop in clinics, which are easier to get an appointment at, but a doctor I didn’t have to explain things to every time would be a blessing.

I’ve given up for today, maybe for awhile. I can only take on so much.

Photcredit: Ric e Ette, title: Lost (Perdito)
Photcredit: Ric e Ette, title: Lost (Perdito)