my ongoing pap smear debacle (that hopefully has an end in sight)

[bare_trees]

This all started about 6 years ago, when my GP at the time said it was imperative that I have a pap smear done.  I was 35 and had never been to a gynecologist.  It went very badly and the exam could not be completed.  There's an archived thread about it, here.

 

After years of therapy with two different counselors and a lot of soul searching, I decided I was ready to go ahead with a pap smear as long as I had a chance to talk with the person doing it beforehand.  My last doctor's appointment (different GP now) was meant for me to meet with the nurse at the clinic who does the women's wellness exams, as they call them.  I changed the date of the appointment to better fit her schedule, because there was no way I would agree to go through with it until I met her and had a chance to tell her my history and judge whether she was actually sympathetic and could help me.

 

That all kind of fell apart temporarily when I was talking to the medical assistant at the beginning of the appointment, who actually asked, "Are you still having painful pap smears?" like they were a symptom or something.  She seemed to realize her mistake, but didn't know what to say to correct it.  I just ignored it and said, "That's why I'm here--I wanted to meet with Dorothy and talk to her about my history with it before scheduling one."  The medical assistant informed me that she wouldn't be available today, then asked if I wanted to go ahead and schedule the pap smear at that moment.  That made me angry.  And idk--maybe she was having a bad day.  I said, "I'm not scheduling that without speaking to her first."  She said, "Well that won't be possible.  We can send her a message."  I said, "That's not gonna cut it," and immediately felt surprised that I said that out loud.  But after all the physical pain that I went through at the last pap smear, the years of saying I would "never" do such a thing again, and finally coming around to being willing to tentatively try, I wasn't about to let this woman dismiss my concerns in some attempt to hurry the process along.  She was surprised at my words, too, and we stared at each other for a few seconds, saying nothing.  Finally I said, "I guess I'd like to schedule another appointment just to talk with her, since it isn't working out today."  The medical assistant said, "ok" almost inaudibly and left the room without saying anything else.  I started crying because I had done so much mental preparation for this and I felt like I'd been thrown a huge curveball.  I got out the book I was reading and calmed myself with it, but it took a few minutes.

 

My GP came in, and I explained to him that I had wanted to meet with Dorothy, but found out from the medical assistant that she was unavailable.  He was really apologetic and went to find her.  It turned out there was some sort of miscommunication and she was busy with clinicals, but she came in to speak to me for a few minutes.  I got to give her a brief overview of what happened.  I didn't tell her that I'm asexual, because I figured it didn't really matter what my identity was as she understood that I wasn't sexually active.  But that information is in my record because I told my GP.  She brought up using a smaller speculum, and asked my GP if it was ok for me to take something beforehand.  We all agreed that I would take a Xanax to relax me, and I would have a ride there and back home.  I felt a lot better after I got to speak with her, because she actually listened instead of talking over me and dismissing me like the gynecologist from years ago.  So I made an appointment to have this done in March.  Thanks for reading all of this and wish me luck!  It's been a long time coming but I wasn't going to agree to it a moment too soon.

[Liara]

You really could be proud of yourself!! I know how hard it could be and daring to go again and being brave enough to stay solid about what you want, that's impressive! Good luck for your appointment in March! 👍

[bare_trees]

@Liara, thanks! 😊

[WünderBâhr]

It doesn't surprise me that medical professionals can be so dismissive--especially when it comes to women's health. I think you were very brave and awesome for sticking to what you needed to be done. Thankfully they listened to you!

[Mult]

I'm glad this doctor Dorothy was sympathetic and understanding. Some people in the medical field like that assistant can be incredibly dismissive of other people's situations despite their field requiring so much trust and sensitivity. 

 

My own mother dealt with a nurse during the birth of my twin and I where this nurse refused to give her an epidural despite the fact that it was a high risk pregnancy that could potentially turn into a C section. She was able to let the doctor know so that he could make sure she had the epidural, but the experience with that nurse will always stick with her. She ended up not needing a C section, but that was never something that nurse should have had any opinion on. My mother initially wanted to have a midwife but midwives do not get involved with twins. If something went wrong, time is of the essence, but that nurse had her own ideas about what a woman should go through during a birthing and let that get in the way of her job.

 

I hope that your pap smear goes well.

[Luftschlosseule]

Proud of you for standing up for yourself, and wishing you good luck!

[Theoryal]

Wow I'm so glad you were able to stand up for yourself and they actually worked with you!  I hope it goes fine.  Hugs!  

 

I haven't had one yet.  They wanted to do one during one of the after giving birth check ups but I just couldn't do it.  I am so not okay with anyone but my husband doing anything down there.   So far i haven't been pressured, but I'm sure some day I will be, and it's going to be very hard because I really do care about preventative checks, but I also really really don't want someone poking around in my piravtes. 

 

 

[bare_trees]

Thank y'all so much for the words of encouragement. 

[bare_trees]

Well...it could have been better.  I am so frustrated.   Some of this is kind of TMI so I'm going to hide it.  Keep reading if that doesn't bother you.

 

Spoiler

The lady was SO NICE.  I can't say that enough.  And I had my partner with me, so that helped tremendously.  I had also taken Xanax and I was good and relaxed.  But then she had me up in the stirups and she looked at me.  She said she didn't think I could tolerate a speculum because I was so inflamed.  She was concerned that I've had an infection for years and years.  She was able to swab some tissue, but not as far in as my cervix.  But she said that was good, that she'd send that for testing.  I was so disappointed that it didn't seem like it was gonna happen, so I said, "Would you please try to put the speculum in and I'll tell you if I can't take it?"  She agreed, but she could barely get it partially in before I screamed that she had to stop.  It felt like being stabbed.  It was awful.  I was doubly upset because of all the work I've done in therapy and in every other way to get to this point but still couldn't tolerate the speculum.  I said, "I'm so sorry, I'm so sorry" several times and curled up and just started sobbing.  She and my partner both comforted me, and she insisted that I had nothing to be sorry for, that she could tell there was too much inflammation and that wasn't my fault. She said we would figure out what sort of infection is done there, treat it, and then try again.

 

But I'm so frustrated this morning because the test results came back and said everything is normal.  I don't understand because both the nurse and my partner looked and saw clear signs of an infection.  I was hoping the tests would show what it was so we could treat it.  I feel like I have more questions and fewer answers.

 

[bare_trees]

And I guess I'd prefer if moderators moved this to Tea and Sympathy, because that's what it's giving at this point

[Mult]

Not knowing the source of inflammation is really rough.

 

I suppose you don't feel any pain day to day so this inflammation went under the radar. I'm not sure what the test was searching for, but perhaps it isn't something that can diagnose your particular issue. I assume that these test screen for things like yeast or STIs. Perhaps there are other things that a doctor could suggest like an ultrasound. I don't believe that negative testing result means everything is fine since the doctor could see inflammation, so the test just didn't find results for the things that the test is selectively looking for. Perhaps you could ask the doctor what the test was testing for specifically so that you can rule those things out as possibilities.

 

I hope that you will be able to find a cause and a solution for the inflammation.

[Liara]

You still have done a lot, you can be very proud of yourself!! Yes, the result was not satisfying but all your work helps you to go this far!!

[bare_trees]

@Multand @Liara- thank y'all! 🥹 I appreciate y'all's understanding.

 

Right--no pain in everyday life since the pain from that first attempt back in 2017. As for what they tested for, it was apparently different kinds of yeast infections, chlamydia, gonorrhea, trichomoniasis, something called fannyhessea vaginae, and something called megasphaera 1. Negative for all of that. She strongly suspected a bad yeast infection, but must be something else going on.

 

Trying not to get all discouraged. Thank y'all again.

[MarRister]

It is probably no consolation but I get so frustrated with the way infections are dealt with. Like I've thought something has been "off" with me for some time. Gotten a few swabs and one came back as.. something like non specific changes, the rest no signs of anything. So even though that test was not conclusive the doctor just decided it was probably bv and gave me a round of antibiotics which changed absolutely nothing and there was just never any appropriate follow up, and a lot of the time if doctors see a negative test on these things they just assume all must be good. I've kind of given up at this point. 

 

Though there are other reasons why one might be inflammed, like an allergic reaction that wouldn't show up as anything positive from a swab. 

[Mult]

10 hours ago, bare_trees said:

She strongly suspected a bad yeast infection

That's very interesting. I had that recently and while it wasn't very painful, it involved a burning sensation and itchiness that was hard to ignore. Though I have heard of people who have had yeast infections for a long while and didn't know, so I suppose it was probably the more likely cause on the doctor's mind. Especially since you said you aren't sexually active.

 

2 hours ago, MarRister said:

Though there are other reasons why one might be inflammed, like an allergic reaction that wouldn't show up as anything positive from a swab

This is also possible. There's a number of bodily irritations that are not caused by a foreign infection that can be difficult to diagnose.

 

I'm not sure if you use any products that might cause a reaction, but since you didn't know about the inflammation, I imagine it would be difficult to notice a difference even if you stopped using an irritating product. I suppose you could try feeling your cervix yourself—tmi in the spoiler:

Spoiler

When I was figuring out how to use a menstrual cup, I did feel around down there to find my cervix and figure out the angle of where everything is since I was having difficulty inserting the cup. People online described the cervix like the tip of your nose and honestly, yeah, it definitely feels like that.

I'm not sure if it is possible or likely, but the only things I can think of that would be near the cervix often would be tampons or menstrual cups/diaphragms. I've heard of pads with perfume but I'm not sure if there are tampons like that—perfumes can be a very common irritant though I don't think they're very common on menstrual products these days. There's also perfumed toilet paper but I'm not sure if that would affect the cervix. I'm not sure if laundry detergent could cause irritation that far up without irritating an external area either...

 

I hope the doctor is diligent in helping you out. I get rashes of some sort and when I tried to get an appointment about it, the rash wasn't present after three months before I could see the doctor, so they just didn't do anything about it. I've just been treating it like eczema or contact dermatitis. I do believe I developed an allergy to nickle since I can't wear my cheap earings anymore. It's difficult to coordinate a dermatologist appointment with a rash since they come and go. Hopefully you will have more luck with a diagnosis.

[bare_trees]

5 hours ago, MarRister said:

It is probably no consolation but I get so frustrated with the way infections are dealt with. Like I've thought something has been "off" with me for some time. Gotten a few swabs and one came back as.. something like non specific changes, the rest no signs of anything. So even though that test was not conclusive the doctor just decided it was probably bv and gave me a round of antibiotics which changed absolutely nothing and there was just never any appropriate follow up, and a lot of the time if doctors see a negative test on these things they just assume all must be good. I've kind of given up at this point. 

 

Though there are other reasons why one might be inflammed, like an allergic reaction that wouldn't show up as anything positive from a swab. 

This is really helpful, though, to know that this happens to others.  That they don't have a clear answer about what was wrong.  Though I'm sorry you have to go through that!  Thanks for the insight.

[bare_trees]

@Mult yeah it's hard to imagine what could've caused irritation so far up when I don't put anything up there.  Thanks for the ideas and suggestions to get my brain working more, because it's been kind of stuck in a cycle of "woe is me; I didn't ask for these parts" for the past few days and that never helps anything but I'm so prone to falling into it.

 

2 hours ago, Mult said:

That's very interesting. I had that recently and while it wasn't very painful, it involved a burning sensation and itchiness that was hard to ignore. Though I have heard of people who have had yeast infections for a long while and didn't know, so I suppose it was probably the more likely cause on the doctor's mind. Especially since you said you aren't sexually active.

I guess I am a little relieved that that wasn't the diagnosis, because when she was suggesting as much, I was like "maybe but I've had those before and they're itchy AF and I'm not experiencing that" and I feel less crazy in that regard because I feel like I would've recognized that.  I got them a lot during puberty for some reason.

[Luftschlosseule]

Hello!
Proud of you, that sounds like you did all you could.

 

On the topic of inflammation, if it looks like inflammation and you have symptoms but the gyn can't do much, you could potentially do a blood test to see if your antibodies are in the range that indicates inflammation. Having an inflammation that goes not away on it's own can be real taxing on the body.

 

Good luck!

[Mult]

21 hours ago, bare_trees said:

Thanks for the ideas and suggestions to get my brain working more, because it's been kind of stuck in a cycle of "woe is me; I didn't ask for these parts" for the past few days and that never helps anything but I'm so prone to falling into it.

I'm glad that I could help even just ease your mind a bit. 

[bare_trees]

Hi y'all--I have an update on this.  I've been referred to an out-of-town (and I'm sure out of network) vulvodynia specialist.  Waiting for an available appointment with her.  They didn't have any insight into what the inflammation is inside of me, since it's apparently not an infection, based on the swabs.  The part that was hard to take was the nurse telling me they can't say it's NOT cervical cancer because they have to be able to reach the cervix to screen for that.  She added that it's most likely some symptom of vulvodynia, since I'm not sexually active and have only had one sexual partner with little sexual activity.  The idea that it could be a (I suppose) a malignant tumor down there really freaked me out, but I guess there's no other way to rule that out until something can be done about the intense pain so they can actually test me.  I'm not doing super well with it, but just trying to take it one step at a time.

[Mult]

1 hour ago, bare_trees said:

Hi y'all--I have an update on this.  I've been referred to an out-of-town (and I'm sure out of network) vulvodynia specialist.  Waiting for an available appointment with her.  They didn't have any insight into what the inflammation is inside of me, since it's apparently not an infection, based on the swabs.  The part that was hard to take was the nurse telling me they can't say it's NOT cervical cancer because they have to be able to reach the cervix to screen for that.  She added that it's most likely some symptom of vulvodynia, since I'm not sexually active and have only had one sexual partner with little sexual activity.  The idea that it could be a (I suppose) a malignant tumor down there really freaked me out, but I guess there's no other way to rule that out until something can be done about the intense pain so they can actually test me.  I'm not doing super well with it, but just trying to take it one step at a time.

I hope that you will get some answers! I've never heard of vulvodynia, but hopefully the issue is treatable whatever it may be. I also hope that you get an appointment as soon as possible. As you say, all you can do is that this one step at a time. I wish you the best.

[AsFromPoland]

Hi

I have a similar problem [I am an asexual boy].

 

Sometimes, I feel pain in my penis and also in my balls [or usually one ball]. There is also a burning sensation in the penis but not so often [I feel a pain or unnamed feeling inside my penis more often]. White things leave my penis, so I probably have an infection too.

 

 

When there was a big pain for a few days, I kept my testicles up during laying and I used anti-inflammatory medicine. 

I put my penis and my ball into a mug of sage [tea] and they are inside for 5 minutes. But I have already stopped doing it every day. Now I only do it sometimes when there is pain. 

 

I also use intimate hygiene wash [if I don't use the sage] or I just clean the penis with water. I use a shower to clean it, the water just needs to touch it.

I don't lift the foreskin while cleaning myself, etc., so I don't clean my penis inside. 

 

A doctor made me do a testicular ultrasound. 

 

Does someone have a similar problem/situation? 

Are the pain, burning sensation, and white coating under the foreskin caused the infection? Or is being asexual just the reason? 

 

Regards