should I have a cystoscopy?

Submitted by mytfly2day on February 4, 2008 - 12:59pm
Body: 

Decided to go to a urologist after seeing my nurse practitioner, who said I did not have a significant amount of prolapse. I adore my nurse practitioner, but I thought, this guy deals with bladders every day, and I just really wanted a second opinion. I made sure beforehand that this particular doc is known for a good bedside manner.

I LOVED this doctor. I explained to him what all had been going on . . . how I didn't have problems till after the D&C . . . how what I had been having was a pinching feeling and burning in my urethra. ONLY in my urethra - and no incontinence of any sort, or urgency. NO pain on urination. I told him exactly how I felt about any type of invasive procedure and he was good with that. He did a pelvic and reiterated what my nurse-practioner had told me - he said he did not find any significant amount of prolapse and that I had fairly good pelvic floor strength. He did not find any kinking of the urethra, and did not feel anything like a cyst.

He quite frankly told me that at this point he could not tell me what is wrong. He put me on a round of doxycycline, as he said there are bacteria that do not show up on cultures at times, but that could still cause problems. I have to say, the doxycycline has helped with the burning feeling. I still just have the sort of irritated feeling - a feeling of "something there." It is definitely better now, but still always present. A pinching feeling.

I've finally gotten to the point where I can sort of feel around "down there." I was so horrified at first I could not look or touch. But I really don't feel anything hanging out and when I looked in the mirror I didn't see any big bulges. A couple of weeks ago it seemed as if I did see a bulge but now I'm so confused about what I looked like pre-D&C that I can't be sure. Anyway, when I feel there, I feel some ridged tissue that I don't remember feeling before, which is consistent with what I have read about a urethral prolapse . . . but I asked the doc if he was SURE I didn't have that and he said that he was. He checked me lying down and also partially sitting up, and had me cough and bear down.

He made another appointment in a couple of weeks and said that if I was not better he probably would want to "take a look" at my bladder. He was VERY nice about this, not abrasive or pushy. I asked him if he would knock me out to do that. He said it's not usual, but if I wanted, they could give me some IV Versed in the office. I do understand many people do NOT like Versed and have had bad experiences with it, but I have had it for several procedures and I must say I think it's a miracle drug. I understand that it is an amnesiac, and that I would be "awake" during the procedure, and just not remember it afterward. However, mostly they do this procedure with the patient fully awake, with a local anesthetic, so I feel that it would be ok. I had a combination of Fentanyl, Versed and Diprovan for a colonoscopy and it was delightful. No nausea afterward, no awareness during the procedure.

My problem is - since I never started having problems until AFTER the D&C, when who knows how much pulling around the doc was doing during that - I am afraid of having ANYTHING invasive done. A cystoscopy seems like a pretty routine and non-complicated procedure but I have a horrible fear of having it done and then having MORE problems afterward, like more pain or incontence) only to have him tell me my urethra is simply inflamed, as in urethral syndrome (which I have been diagnosed with) or interstitial cystitis (which he says I do NOT have).

If it's not a prolapse, what COULD all this be? I know things have shifted there, am still having the problem with the air escaping many times a day from the hoo-hoo, so I know SOMETHING is different in my anatomy there. I plan to further explore what I can feel down there, just trying to get up the nerve to do it. But he DEFININITELY assured me there's nothing falling out.

What would you do? Would you have the cystoscopy? Thanking you for ANY advice or input.

Emily

ATS

February 4, 2008 - 2:07pm

... antiobiotics a try and see how you get on before committing to another procedure on your hoo-hoo. I can completey understand your fear of anything happening down there, after all you had no problems until the D&C. I feel the same to a degree and am still angry with the midwife for that episiotomy.

The best way for you to determine if you have prolapse is to do the self examination. If you insert a finger and then squat down or bear down you will be able to feel any bulges or shifts in your organs. I am assuming the doctor found no evidence of prolapses? If so that is great!

I think you have explained your fears to this doctor and I would hope that if you go through with the procedure that he will be extra extra careful not to poke and prod unnecessarily.

Anita

granolamom

February 4, 2008 - 2:33pm

emily, I don't know why you're having pain. could be nothing more than irritation, which seems to be somewhat common in women with a urethrocele. obviously, I cannot diagnose you, I can only share my thoughts on the matter (and I'm not a dr!)
my mw insisted I didn't have a prolapse the first time I asked her. she examined me standing up and bearing down. I **know** I have a prolapse, don't know why she didn't see it. that nothing is 'falling out' doesn't mean that things haven't moved out of their original place, kwim?
I'm sure your doc is a good one, but that doesn't mean he's the expert on your body.
and I don't know what a cystoscopy is done for. will have to look that one up. is the dr concerned that you have something else going on, that he wants to rule out?

personally, I would avoid any and all invasive procedures unless I was convinced it was necessary for my health. If your dr doesn't feel that its absolutely necessary, why not try to manage this like a prolapse and see if the irritation doesn't start to get better?

just my thoughts..

louiseds

February 7, 2008 - 8:05pm

Hi Emily

I agree with Granolamom on all counts.

A couple of other thoughts. I think the only reason for more poking around would have to be that they have eliminated the simple possibilities that do not require prodding and poking, and have reasonable suspicions that there could be something life-threatening and treatable that they have not yet investigated. I find the idea of prodding and poking on the off-chance that they might feel something that they are not looking for to be too intrusive, and they could innocently do further damage.

The other thing to remember is that you live in your body 24/7. They don't. You know what you feel. They don't. In my experience my prolapses cause a variety of sensations, depending on factors like time of month, recent exertion, what is going through my intestinal tract at the time, stress levels etc. I would add that I now wouldn't even know from day to day that my cervix, bladder and rectum are way lower than they were when I was a teenager, except for right near my period.

A prolapse is not like a tumour which can be palpated any time. It is merely a variable shifting downwards of a variable number of pelvic organs at any time. It is simply a shifting of positioning. It is not a thing in itself. Medical diagnosis is the attachment of a word or phrase from a specific vocabulary which has little meaning outside of the field of medicine, but has a very specific meaning within medicine. However, it can include diagnoses which are just another word or phrase for symptoms you have just described to the doctor, which s/he may have no treatment for, even though it has been previously named and described by the medical fraternity. All it means is that the doctor is feeding back to you what you have just said to him/her, in a language you have no literacy in, which IMHO is pretty pointless if it is not explained further. eg, the term urethral syndrome says everything to the doctor, says something to you, but means little to me other than 'it is something not right with the tube that connects the bladder to the outside of your body, and there are several symptoms manifesting. Are you totally confused yet?

What do you understand urethral syndrome to be?

Just wondering if the irritation/inflammation to your urethra could be from concentrated or old urine that is not being emptied from your bladder when you pee? Ensuring that you empty your bladder properly, using any of the methods described in Christine's book or on this Forum (search "bladder empty" in the search box) will probably help you to do this, even while you are using the antibiotics if you decide to take them. Using urinary alkaliser (like Ural) may also help to reduce the inflammation as well.

Good luck.

A final word. Have faith in your own perceptions and don't let them convince you that you don't feel sensations that you do feel. On the other hand, just because you feel a particular sensation does not necessarily mean that a doctor will be able to pinpoint the cause of it, or help you to alleviate it (especially *if* prolapse is the real cause and s/he is denying that you have any prolapses). Sometimes sensations just go away of their own accord when you change something yourself either intentionally (eg Wholewoman techniques) or inadvertently. Doctors are great when operating in their field of knowledge but can be dangerous when they don't admit that they are in unknown territory. But also don't be afraid to persist in asking for a referral to another doctor if your alarm bells are ringing and you intuit that you need further investigation.

Cheers

Louise

mytfly2day

February 8, 2008 - 9:31am

I am so interested in all the advice and comments I get here.

Urethral syndrome is one of those weird, ambiguous ailments like interstitial cystitis. They don't really know what causes it, and they don't really know how to treat it. It can come and go. It's basically an inflammation of the urethra (not bladder). The uro/gyn I saw yesterday put me on a lengthy course of low-dose antibiotics. I've done enough research to know that may help and I have been on this particular drug before, although it's been several years - I used to get very frequent bladder infections.

I am still violently opposed (and that's exactly the way I word it to the docs!) to any sort of invasive procedure. Period. The more I think about it, I'm thinking, so, the doc would go in there with a scope and look around and I KNOW what he would tell me afterward is that my urethra is inflamed.

Well, duh! I KNOW my urethra is inflamed, that's the problem! I have already been told no one can feel a cyst or diverticulum or kink in the urethra, so I'm thinking pretty much, what are you thinking you might see in there, other than an irriated urethra? And the third doc already told me that the cath I had during the D&C could certainly have triggered an attack of the syndrome - so what would going in there with a scope and looking around do???

I don't think I have any problem with emptying my bladder completely. Since I've been on here I kind of check from time to time and it seems as if it's ok. I do notice I have spasms in my urethra fairly constantly and the strange thing about it is that the spasms themselves don't really hurt. Feel like pinpricks that are kind of just touching your skin but not really poking you.

I'm just horrified now that I didn't know about any of this stuff long ago. With my second birth, I had a nurse-midwife with me as well as my ob/gyn. The midwife was a friend of a friend so she came in unoficially to be with me. My son had not dropped at the time I went into labor and they were thinking I was going to have to have a c-section but she worked with me and got him to come on down. The doc ended up doing an episiotomy and using forceps and she later told me if she had had 10 more minutes with me should could have delivered him with no episiotomy or tearing. Now, I feel certain that the two episiotomies I have have contributed to weakness in the perineal area. Although, at the times I had them, I had no problem with healing and I didn't have any weird things like it not being sewn correctly, although now that I think about it it seems as if I recall having a feeling one of my stitches might have come loose during the last one.

I think I'm pretty much a difficult patient because I question everything but you know what? After learning on here what I know now about a lot of procedures, I'm going to be even more difficult in the future! @:O

I've come to look at most doctors now as horribly scary people, unfortunately. They don't inform us of risks and propose to "fix" most things in ways that now seem to me to be totally barbaric and primitive. I especially think about the risk of incontinence and loss of sexual sensations after these surgeries. I think, OMG! What if I had just gone ahead and had something and lost the ability to enjoy sex? Or become permanently incontinent? So glad I found ya'll before that happened.

ATS

February 8, 2008 - 10:15am

You sound so much more positive and I really hope that this latest attack of your urethral syndrome settles quickly.

I certainly do not blame you for questioning the medical profession and you are quite within your rights to. It is your body and you have to live with what is done to you, they don't. When I look back at my sons birth there are many things that make me very angry and they should have been done differently. I always question procedures that will be done on myself and my children. My doctor prescribed a pessary type gel when I was pregnant with my daughter for an infection which I did not believe I had and I did not want to put anything "up there". Having had two miscarriages in the past I was very nervous about anything in that area and left it all well alone and that includes sex! Anyway, I questionned this doctor and he became defensive and told me I had an infection that needed to be treated. I called the hospital where the swab was sent and the midwife looked on the computer system and said to me that if he is telling you you have an infection get him to prove it because your swab says you DO NOT have an infection. I had group B strep but that is not treated and is only of concern when birthing naturally. This gel I had would have done nothing for that and was to treat a totally different infetion I didn't have. I am even more protective over my genital area now and would not submit myself to anything unnessessary and needless to say I did not use the gel and was absolutely fine.

I will make sure as my daughter grows up she is well informed and makes the right choices for her. It is a shame that I have had to learn the hard way about these things but I hope I can protect her.

Anita

mytfly2day

February 8, 2008 - 10:43am

I was thinking exactly the same thing. My daughter is 24 and not married yet, but at least I will be able to pass along what I now know. Maybe it can help her make wise choices about her body and experiences.