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Author Topic: MANY Doctors, Still No Answers - Help Me Please!
ScarletInquirer
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I'm in CHRONIC need of advice, help, assistance, anything. Even if you experts are only able to offer me an ear to hear my problems, even that would be appreciated at this point. I feel like so many doctors haven't given me even that.
I started becoming sexually active around a year and a half ago, I am a nineteen year old heterosexual female. The first month or so of having sex, everything seemed normal, the day after sex always seemed a little uncomfortable, but I had obviously never had sex before this month and so I figured, what do I know, maybe this is normal. However it was later revealed (by me peeing blood...) that I had a very bad UTI that had gone untreated for a month(I had never had one before, and had no pain symptoms, so I had no idea I had one, I just thought I was peeing abnormally often). That taken care of, I thought I was in the clear. But shortly after, I developed another. Fixed that as well. At this time my boyfriend moved away, and though I didn't put the pieces together at first, I did not have a UTI again - not until I visited him for the weekend and had sex. I came back, this time only three days after having sex, already feeling uncomfortable and I knew I had one again. I went to my campus doctor tearing up because I was starting to think this was going to happen every time I had sex. She reassured me that UTIs happen, but it was very doubtful that sex was going to trigger one EVERY time. She was very wrong.
My boyfriend at the time and I broke up, yet as I went on to have new partners the UTIs were a constant. The symptoms also began worsening - instead of having a month, or two weeks, or three days before developing, I was now waking up the morning after with a raging UTI. I went to my family doctor, who suggested a urologist. I went in and had x-rays and all sorts of tests done, and I came up "healthy". She prescribed me Bactrim to take directly after sex, and then another the morning after (or some hours later, depending). This cleared them up, and I began to have hope! I was prepared to take these pills if it meant just having a normal sex life. However the situation quickly reversed itself. Last time I had sex, I took the Bactrim as instructed, and woke up to UTI symptoms regardless, and bleeding from my urethra. I went in to urgent care because, as I was already on a UTI med, I did not know what else I could do. They took a urine sample and told me I did not have a UTI and that they had no idea why I was bleeding, and sent me home. I was crushed and scared.
I am now far too afraid to have sex again, and if I even consider it, I'm wracked with these fears that I'm going to bleed and be in such pain for it. Not only have the UTIs quickly avoided any treatment I've tried, a whole host of other symptoms now emerge after sex. I used to be able to have sex practically as much as I wanted to. Now after one time, I am incredibly painfully sore, swollen, I often develop thick white discharge even without an actual yeast infection, frequent urethra bleeding, and of course the reliable ol' UTI. I've heard every trick in the book from doctors - am I peeing before and after? Am I washing? Am I wearing cotton underwear? Am I making sure not to use scented soaps? Yes, and plenty more precautions. I have tried different partners, different condoms, different positions - everything I and my doctors can think of. Recently my urologist told me that I should simply hope to "grow out of it", whatever "it" is.
I feel like I have no control over my sex life, like the option to have sex or a relationship has been taken from me. Maybe this sounds dramatic, but it's the way it makes me feel, coupled with the fact that my doctors seem not to know what is wrong, nor very concerned with figuring it out. They all agree this does not seem like your average reoccuring UTI case. I've taken cranberry pills, to no avail. I am willing to try anything, I am open to ANY and ALL suggestions. This has dramatically impacted my self-esteem and I feel desperate. Please, any responses at all will be greatly appreciated. Thank you so much if you've bore with my story this entire post.

[ 10-26-2012, 05:55 PM: Message edited by: ScarletInquirer ]

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Robin Lee
Volunteer Assistant Director
Member # 90293

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Hello ScarletInquirer and a warm welcome to Scarleteen!
This sounds like a horrible experience to go through. I'm not sure if knowing this is helplful at all, but do know that we've talked to a lot of people here at Scarleteen about chronic UTIs.

It's understandable that you would feel discouraged. Not being able to do what you would like to do for fear of terrible pain is a truly unpleasant experience. It also sounds like your doctors have been pretty insensitive, seeing this as only a medical problem, not a medical problem that is affecting your life, and affecting the way you view yourself and your body.


Know that we aren't medical personnel ourselves, but we can definitely give you a supportive ear and hopefully help you come up with some ideas for dealing with this and feeling better about yourself.

I'm going to ask you a few questions, just so I can understand your situation a little more.

You've mentioned that engaging in penis-in-vagina intercourse leads to the irritation and infection. What about other sexual activities? Do those also lead to the same reactions? Do you still find that you are infection-free if you don't engage in partnered sex for an extended period of time?


You mentioned trying different condoms. Have you tried non-latex condoms?

The tests that the urologist ran: Did those include a full screening for all STIs (sexually transmitted infections)?

did the doctors try other antibiotics with you? Infections can often become antibiotic resistant.

And in a bit of a different line: Are you currently in a relationship of any kind?

--------------------
Robin

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ScarletInquirer
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Thank you so much, I am more than happy to answer your questions.

Other sexual activities don't result in any kind of irritation, and yes, I have never had a UTI or any type of vaginal related health problem that is unrelated to this sex issue. Outside of these occurances, I have never had a UTI in my life. Never previously, and I am perfectly healthy if I abstain from sex.

I have not tried non-latex condoms, but I have considered latex allergy as a possibility and have gotten results that I am NOT allergic to latex. I should note that I have been on birth control in the past, and sex without a condom results in the same conditions, leading me to believe that condoms are not a factor (or a very relevant one) in what is causing my situation.

I believe that I was "fully" screened for STIs...I'm not sure what this fully entails, but I have been tested for STIs/STDs in the past (when you come in with problems like this, it seems every doctor assumes you have an STD of some kind) and I have always and repeatedly tested negative for all of them.

They have not tried different antibiotics with me, but I had only used the Bactim-post-sex method three times before it ceased to work, and not even within a short period of time. I believe it was three times over a period of six or so months. I'm not sure if antibiotics can be resisted against that quickly and infrequently.

And finally, I am not currently in a relationship of any kind. This whole situation has highly discouraged me from pursuing anything like that. I feel personally it would be nothing but trouble to engage in anything like that until my problem is at least on the right track to being taken care of.

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Robin Lee
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HI There,

Hmm, so nonlatex condoms might help, but latex isn't likely the cause. You really have pursued a lot of different avenues, and I'm getting a picture of how truly discouraging seeing all these doctors and going through all these tests must have been.

This really is a puzzle.

I'm curious about your assertion that this problem limits you from pursuing relationships. Can you talk some more about that?

--------------------
Robin

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Robin Lee
Volunteer Assistant Director
Member # 90293

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Also, just to let you know. I'm headed off the computer for a few hours, but I will check in later this evening, and also tomorrow, and we have other volunteers who check in regularly.

So, if I don't respond to you immediately, know that I will shortly.

--------------------
Robin

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ScarletInquirer
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I'm not sure how I would explain it to somebody I was in a relationship with. I never told my previous partner, just took care of it myself and didn't mention it to him. Since that was early on in the manifesting of my situation the UTIs only took a few days to clear up and I wasn't yet experiencing any of the discomfort and major irritation, plus I hadn't yet made the connection with intercourse and my problems and so I continued to have sex as if there was no issue. So I have no experience with talking to a partner about it. Since at this point I "can't" (without experiencing a hospital trip and pain) have sex, I'm not sure how I would continue a relationship with anyone. It's not exactly a topic that can comfortably come out right away, yet if I waited until we were both very secure in our relationship to talk about it I would feel like I had trapped them into it. Sort of a, "I'm glad out relationship is going so well, by the way, I can't have sex, sorry I didn't mention that" sort of thing. If that makes sense.

Also, thank you for letting me know, that's very thoughtful. I'll look forward to your reply whenever it might be!

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Robin Lee
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Hi ScarletInquirer,

I'm back, and thank you for your patience.

I can certainly understand how you would feel awkward about not being able to engage in intercourse with a partner. Intercourse is part of the standard script for heterosexual relationships. At the same time, it's only one of many sexual activities and the idea that it's the most important, or preferred, activity for all is more a part of that script than a reflection of reality.

It's a reality for more people than not that there are going to be sexual activities that they can't or don't engage in, either some of or all of the time.

I hear your fear of rejection should you get to the point in a relationship where sexual activity would be coming up (and I don't know when that point is for you) and your partner would potentially throw a hissy-fit because intercourse isn't an option for you right now. I'd suggest though that if you're in a caring, supportive relationship, it's just as likely that your partner may express some disappointment, while being understanding and flexible. I presume (and you can correct me if I'm wrong) that you would be intrested in a relationship that was founded on more than physical sexual compatibility. IN that case, I highly doubt that someone would feel "trapped" into something, as they would have developed an attraction for and interest in you on multiple levels.

Is what I'm saying making sense? With the physical pain you've experienced, and the frustration of not being able to find answers to that pain other than abstaining from intercourse, I can understand how you might feel a little broken. The reality is, though, that you're just not able to engage in intercourse right now. You said above that other sexual activities don't pose the same problems for you. Am I understanding that, and your interest in those sexual activities, correctly? I guess I would urge you not to throw the baby out with the bathwater, as one's ability to engage in intercourse is really a very small part of one's personhood and one's desirability to potential partners.

What are your thoughts on this?

--------------------
Robin

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ScarletInquirer
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Well, you're right on that I would be interested in a relationship that was more than just physical. And yes, other sexual activities don't give me any trouble. The "trapped" aspect is more that, I feel like if I were to come out with something like this, wouldn't that person have appreciated knowing this before they had feelings for me, so that they could have avoided it if it bothered them? Relationships have enough trouble as it is, and the fact that I can't engage in the most basic of relationship behaviors is just another nail in the coffin, so to speak. Considering my age I've been lead to believe this is in fact a huge barrier, and with something like this I kind of expect my next relationship to be at age 35+ or something, if that makes sense. Certainly not in college, when someone could be with a person who IS fully functional. Frankly, if I was in a relationship with someone and this ruined it, I would not be able to handle that. So I've simply avoided it.
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Robin Lee
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I can certainly understand wanting to avoid something so hurtful, and really, traumatic, as someone breaking up with you because of something about yourself that you can't control.

sure, maybe someone would have appreciated knowing that intercourse was off the table for you before getting involved with you, but maybe it also wouldn't matter to them so terribly much. The trope of all college-aged people valuing intercourse as an integral part of a relationship is not universal even though media representations, and the dominant conversation, would have us believe so. In other words, for all the people talking about how they're having intercourse, or looking for it, there are at least as many people who aren't interested in it at all, or for whom it doesn't matter as much. Sure, they might be nodding along and agreeing with the party-line, but that's more to fit in than anything.

It sounds like your self-esteem is pretty low right now. I could be reading that wrong, so please feel free to correct me. [Smile] So, true, this might not be the best time for a relationship, but nor do I think that you'll have to wait 15 years before even contemplating that someone might find you "good" relationship material.

Looking at this another way, not being able to have intercourse isn't something you'd necessarily have to spring on someone after they'd gotten all snugged in and comfortable with a relationship. While I doubt you'd mention it on a first date, it certanly is something that you could bring up at some point in conversation before things got too super intimate. As partners get to know each other, they often discuss things like sexual needs and preferences (it's pretty healthy to talk about sex before engaging in it) and that would be a handy time to say: "Hey, I've got this super-irritating medical thing. The doctors can't find out what's wrong, but for now I have to not have intercourse or else I'll be in pain and have to go to the hospital." (It wouldn't have to be exactly worded like that of course, but with that general, matter-of-fact sentiment)

As we're talking about this, I'm thinking about an article that our Executive Director wrote a while back. I'm going to link it here in case you're intrested.

Speaking of our Executive Director, she's speaking at a conference this weekend, but when she gets back I'm going to ask her about your situation, as she may have some additional thoughts and perspectives.

Here's that link:
http://www.scarleteen.com/article/body/disability_dharma_what_including_learning_from_disability_can_teach_everyone_about_sex

--------------------
Robin

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ScarletInquirer
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No, you're pretty much absolutely correct on the self-esteem part. It's not something anyone has understood since I don't have a problem with the way I look, my weight, my personality, anything like that...but now thanks to this situation, I've been feeling like none of that matters anyway.

Also, I really really appreciate you speaking to your Executive Director about this, and I'm very much looking forward to what she might have to say. And I'll definitely look into this article!

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Robin Lee
Volunteer Assistant Director
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Going through the medical system, particularly when they don't have answers for you, can feel pretty dehumanizing both mentally and physically, so I do understand how this problem could wear away at your self-esteem.

Your appearance, your personality etc, do matter, and I'm not just saying that as a platitude. One's ability to have intercourse is really such a tiny, tiny part of one, and your inability right now to healthfully enjoy intercourse (and enjoying includes after as well as during) doesn't make you an outcast.

--------------------
Robin

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