Social Question

downtide's avatar

How can I cope with all this waiting for medical tests?

Asked by downtide (22769 points ) July 31st, 2012

I apologise in advance, this might get long.

I’ve been debating for a while whether or not to post about this, today I’ve decided to bite the bullet and post it, as I’ve just come back from the clinic and I’m feeling pretty scared and shitty right now.

Four months ago I had a bad urinary tract infection which made me very severely incontinent. Two courses of antibiotics later, the infection went away but the incontinence remained. Basically, I have absolutely no bladder control or sensation at all any more. I can’t tell when it’s full, I have no “urge” to go, I can’t go voluntarily, it just happens whenever and wherever it wants to. (Before you ask, yes I have to wear a nappy/diaper at all times).

Today I went to the local incontinence clinic for some tests, an appointment I’ve been waiting three months for. I’ve been told that I have cystoplegia which is basically a flaccid or paralysed bladder, and also a paralysed urethra. The cause is as yet unknown, but usually it’s caused by injury to or disease of the lower spinal cord. So I’m being referred to the hospital for more tests, both urological and neurological.

It’s not related to the hormone treatment I’m on (I already checked about this with my endocrinologist), and it won’t affect my trans treatment. What’s bothering me the most is I’ve also developed some other symptoms of Multiple Sclerosis and that is quite scary. And from the research I’ve done online, MS is the least scary of the possible causes.

So I have all these unpleasant “what-if’s” in my head. How do I cope, in the long months it takes waiting for appointments and tests? The NHS is notoriously slow. How do I stop fearing the worst?

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19 Answers

syz's avatar

I’m sorry that you’re going through this. And I know that it’s almost impossible to rein in panicky thoughts when there are possible severe issues. And doing your own research is fraught with pitfalls – you want to be informed and educated, but it’s also an opportunity to scare the bejeesus out of yourself (let’s face it, we could look up farts or zits or toe pain and find incredibly scary things that suddenly seem to apply). If you don’t mind my asking, are you seeing a therapist for your trans treatment? Is that someone that you can talk to about how to control your fears and deal with the wait? What about a support group?

downtide's avatar

I do see a therapist for my trans treatment but it’s only once every few months and my next one isn’t until December. Maybe I need to find a general therapist in the meantime?

tom_g's avatar

Breathe and back away from the internet. There is no good that can come from self-diagnosis attempts. Believe me.

I have had a few scares. Recently, I had tests done on a Friday evening. I spoke with the doctor before going for tests, saying “I have nothing to worry about here, right?” The doctor replied, “Well…...let’s just see what we see.” Huh? What the hell does that mean?
Anyway, after getting a test done, the nurse stated something like, “Have you had cancer before? Have a nice weekend.” Needless to say, my weekend was spent on the internet and by Saturday night I had 34 terminal illnesses and a 90% chance I would die within 2 weeks.

Anyway, I wish you the best. But don’t look up MS anymore. No more “what ifs”. Because the truth is, even if you were feeling fine, you’d be just as justified/unjustified to play the “what if” game, which is debilitating and useless. You will be fine. Breathe.

Pied_Pfeffer's avatar

Dear friend…I too am so sorry that you are having to go through all of this. I agree with @sys; it is extremely difficult, if not impossible, to not fear the worst in situations like this.

In addition to @syz‘s suggestion of utilizing therapy or a support group, what might be helpful is to do as much research as possible and take notes. No one knows your body better than you do.

Since it sounds like you are seeing several doctors, take copious notes. Include symptoms, medications, and what the doctors and nurses say. If you don’t understand something that a medical person says, then ask them to explain it.

Learn about the medications that are prescribed, including possible side effects. Keep an updated list of what you are taking, and share that at any appt. with a new doctor or nurse.

I don’t know how it works in the UK, but here in the US, when a patient is seeing a variety of specialists, they tend to focus on solving whatever is wrong in their field of expertise and not look at all of the factors at play.

We wish for as speedy a recovery as possible for you. Please keep us posted and know that you are in our thoughts.

marinelife's avatar

This is very difficult. I am so sorry that you are going through this @downtide. About all you can do is adopt as your mantra, “I will know when I know. Until then, my life will be uncertain.” Try not to worry. That will not help in any case. If you practice meditation or yoga that could help you. There are various breathing exercises that are calming.

If you can, in this time of fear and uncertainty, take the time to be thankful for the positives that you have going in your life, it will make you feel better, Say thank you for each one of your blessings.

Please keep us posted as to how your tests progress and what you find out. I will be sending positive thoughts your way.

Take care.

JLeslie's avatar

Have you told a close friend or family member about this? It might help to bring them along to doctor’s appointments if you are willing, and they also will be good to talk to in the interim at times for support. In very stressful times such as dealing with scary medical stuff, a second person listening to the doctors can help, because it is very difficult to really hear everything during the few minutes of an appointment and retain all the information.

You mentioned the hormones you take, did this seem to start shortly after you started them? I would not just rely on a doctor saying it isn’t from the hormones if you have a gut feeling, or just have the idea bothering you. If I were you I would consider stopping them to see if you get better. Of course do it under the supervision of your endocrinologist, I have no idea if you have to wean down, or can stop cold turkey, or what some of the side effects are when stopping.

When you had the UTI months ago, was it actually confirmed through a culture? Or, they treated it with antibiotics without conformation? A lot of these sort of things never test positive, because the cultures are inadequate in my opinion. Did the antibiotics help your symptoms at all while taking them? That is very important in my opinion.

I personally would be resistant to believing it is neurological. My own stubborness and probably denial also. Do you have any other symptoms? You mention MS, do you have muscle pain and weakness? Why is MS on your radar? Did the doctor mention it? Did they do rheumotological blood tests also? A brain MRI?

Waiting is horrible, I really empathasize with you. I think the best is to try and enjoy what you can in each day and busy yourself. These sort of illnesses actually drag on. Ugh, I hate to say that. Ones that are chronic in nature, a single doctors appointment rarely is magical. Not in diagnosis or treatment. It takes a few months to wrap ones head aroung having a chronic condition. I understand how depressing it is. I know many people who have gotten much better when doctors had no real hope, I am one, but in the mean time it is very difficult.

Shippy's avatar

I’m sorry to hear you are going through this. I know I would feel scared and anxious too if it were me. Sometimes the anxiety about the “what ifs” or possibles is worse than the actual illness itself. Can you not see someone to assist you in dealing with the anxiety, in the meantime? I have just been through two scary tests and also worried myself into a stupor. Both of them required a four day wait, and by the fourth day I was demented. But the results were not so bad at all.
I also kept saying to myself “All is well I am safe” and this seemed to calm me.

I also kept saying, My body restores itself to its natural state of healthiness, when I felt a bout of the jitters coming on. As I had worried about this thing for two months before facing the doctor to find out what it was. Try and occupy your mind with something you enjoy and try and get good rest, as this helps to keep emotionality down somewhat.

A friend of mine had a strange reaction to a tablet she was taking, causing her legs to be paralyzed which was later resolved so it could have even been medication induced.

Sunny2's avatar

What helps in times of uncertainty and fear such as you are experiencing? Denial is a useful tool. Distraction of any kind. Something that takes you away and requires your concentration. Movies, dancing, music, physical exercise, only your choices, not mine. Don’t allow yourself to just sit and fret. DO something. Help someone else. Easy to say and hard to do, I know, but that’s what you need to do to take care of yourself.
My best wishes are with you. Peace.

downtide's avatar

@JLeslie I’ve talked about it with my endo and he is satisfied that the hormones wouldn’t have this effect, and he has not suggested coming off them. The timing of this problem doesn’t correlate with starting the hormones.

And yes, I do have some other symptoms of MS. Muscle weakness, spasms & cramping, pins and needles, disturbed vision. Some of these pre-date the hormone therapy, some don’t. All of them have been so minor they didn’t really figure on my radar until this latest issue seems to tie them together.

All the other tests you’ve mentioned, these sorts of things are the tests I’m waiting for. Their first priority is going to be checking on my kidneys to make sure they’re not getting “backed up” as this is a dangerous side-effect of the sort of bladder problem that I have.

downtide's avatar

@JLeslie I forgot your other questions – yes, the UTI was confirmed by culture. After the first course of antibiiotics I had another culture done which showed the infection still present so they put me on another courseo f a different antibiotic. A final culture confirmed it was gone. All the other UTI symptoms went away except for the incontinence.

I said to the doctor at the clinic yesterday that I wondered if the infection had done some damage to the nerves. She said if that’s the case, I’m the first person she’s heard of where it’s happened this way.

JLeslie's avatar

It’s a little odd isn’t it? You have these UTI’s and incontenence begins at the same time and then that continues to be a problem that they now are saying is nerve related and not related to the UTI, but the UTI is when the problem began? Someting isn’t adding up.

Do you have a copy of the blood tests that have been run? Make sure they checked your vitmain D and vitamin B12. B12 is proven and accepted by the medical establishment as being very necessary for nervous system health. Low B12 is practically an emergency. Some people are symptomatic when on the low side of the nornal range. Vitamin D is more of a controversy in the medical field, but there is no doubt that it greatly helps my muscle cramps and weakness, and I have three friends who had drastic improvement getting their D back into normal ranges. My endocrinologist is a big believer. In America MS is diagnosed more in our colder climates, so a connection to sun exposure and D has been theorized for a while and other similar conditions. I am not suggesting to just take a bunch of vitmain D and B12 I think it is important to have the blood test and know where you stand. This isn’t herb popping, but actual clinical tests and treatment for nutrients we know are necessary. Your climate it is likely you are low in D as well. The parameters might vary country to country. America raised the normal limits several years ago, because the old normal was deemed inadequate after studies were done.

A long shot, but I know someone personally who believes her urinary trouble might be reated to it, is she is positive for TB, and believes the infection is in that tract. Most people think of TB as a lung disease, but it can settle almost anywhere. We worry about the lung disease as a society, because then it becomes more easily contagious to the population at large. I think it is highly unlikely this is your problem, but thought I would put it out there if you might have tested positive for exposure in the past.

LuckyGuy's avatar

<—— This guy was incontinent for about a year after his surgery and got it fixed perfectly!
I’m drinking a second glass of iced tea as I write this.

Don’t fear the worst. No matter how bad it is, they can fix it – if you are in otherwise good health and have a healthy BMI. Start training now.
Sadly I know lot about this subject. PM me if you want to talk.

Bellatrix's avatar

I don’t know the answer to your question @downtide. I wish I did but I am sending you positive thoughts. I tend to be a complete worry wart when things of this type have happened in my life. Things that have helped me is to stay around people I love, to reach out to my support group (friends and family) and to focus on the good things in my life. Go for walks, spend some time in nature and keep your mind busy until you have more answers. I hope this doesn’t drag on for you much further and you have some clarity about what is happening soon.

hearkat's avatar

I am not a religious person, yet I still rely on the AA mantra: Let go and let God. Again, I don’t believe that there is a sentient being playing with us like ‘Sims’, but I do know that there are many things that are beyond my control, and that saying reminds me that worrying will not change anything.

I have recently begun testing for auto-immune symptoms; in addition, I have had incontinence issues since I had an acute bladder infection as a pre-teen (which was the result of unreported sexual abuse). So I recommend doing kegel exercises as much as you can tolerate, to strengthen the muscles—that is something that you can control. Instead of looking for potential diagnoses, perhaps seek out incontinence support to learn more coping skills. Instead of focusing on the how it happened, instead focus on what you can do to improve your lifestyle until you have answers.

I guess that you are not in the USA, since you refer to the “NHS” and long waits for tests. I can’t imagine the frustration that would bring about. Aren’t there other preliminary blood tests that can be done to help narrow the list of potential etiologies?

JLeslie's avatar

Something to think about. I think if the doctors felt the test was likely to give a conclusive answer that would give you immediate help they would likely schedule your tests sooner, even if your medical system typically has waits.

Mariah's avatar

Really sorry to hear about this. I will have you in my thoughts, hoping for a good outcome.

I feel like I’ve tried out every coping method in the book and finally have it down to a science. This is what works for me, can’t guarantee it’ll work for you but it’s worth a shot.

Firstly, I highly recommend staying far away from internet websites that attempt to diagnose symptoms. You will only come across the worst case scenarios and it will get you much more worked up than you need to be. If you’re like me, your first instinct is to learn as much as you can with the impression that knowledge is power. In reality, though, it’s unlikely anything you read will actually help you, but it will definitely scare you. I feel similarly about online support groups. Every now and then you’ll find an optimistic community, but for the most part, the people participating in support groups are the ones who need support, and that’s because they’re miserable. The ones who are okay are out living their lives, not on the internet. So it gives you the impression of lower success rates than reality.

Worry falls into two categories, in my mind. You could call them natural worry and purposeful worry. The former is the natural response to being in a stressful situation. The latter is truly illogical and it is when you purposefully worry because it gives you the illusion of greater control over the situation. Maybe you don’t do this, but I do, and it took me a long time to even realize I was doing it. I used to think that worrying about things enabled me to plan for the worst so that I would be somehow prepared if it happened. If you catch yourself doing this, try as much as you can to stop. Worry doesn’t give you power over a situation. You don’t need contingency plans. Medical problems can make you feel very out of control and this kind of thinking is just a crutch to make yourself feel a little more in control.

This leads to the last tip, which is to distract yourself. I used to think that avoidance would harm me in the long run, but I’ve found that that isn’t the case. Much like I was saying before, I felt I had some kind of responsibility to think about my worries very often. I felt like something bad would happen if I didn’t. But this just isn’t true. Things will play out how they’re going to play out whether you’re fretting or not. So feel free to push it out of your mind with some pleasant distractions. What works best for me is my creative hobbies. Drawing, making jewelry, and needlefelting are a couple of favorites here. I also do better when I’m in school taking classes. When I get focused on these things, I forget all my woes. Spend time outside appreciating nature, and treat yourself kindly. You deserve it.

Best of luck. Keep us posted.

augustlan's avatar

I’m sorry I missed this question when you asked it, @downtide. I hope you’re closer to getting answers by now! The way I cope is to get all my worrying out of the way in the beginning. I “allow” myself to freak out and imagine worst case scenarios all I want in the first day or two. After that, I say to myself “enough is enough!”, and then I practice distraction techniques. Please keep us posted, friend. <3

downtide's avatar

I have a little more news – I’m going for an ultrasound scan on my bladder next week, and I have a urology appointment in six weeks. I saw my doctor today and he mentioned catheterisation, but that will have to be discussed with the urologist. I’m feeling a bit less freaked out by it all now.

JLeslie's avatar

Thanks for the update. I’m glad you are feeling a little better.

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