New here, questions re: elavil etc.

[Hollyd]

Hi,

I'm not sure what is going on with me and have just had a uro-gyn tell me I have bladder pain syndrome which if it goes on longer would be considered IC. She said this without any tests and was a VERY unimpressive MD, very hostile and uninterested.

I have a uterine fibroid (benign tumor) that has been pressing on my bladder for 6 years. Ultrasound years ago said it was actually causing my bladder to conform to it. That was when it was 5.5 cm. Then it was 6.5. Just recently I had a new ultrasound and it had grown to 8.2. That's very large. I have always been told that my periodic urinary frequency was due to this which makes perfect sense. It was worse when everything got swollen up around my period (fibroids get a little bigger at that time).

In the past couple of months my frequency was greater and accompanied with an irritation feeling and if I didn't go when I needed to it caused WAY more irritation into the next day and beyond. Then on NY's eve I got a couple of bouts of pain during urination that felt as sharp as a bladder infection but in a lower area. I felt "sick" too, like with a UTI. It wasn't constant like with most UTI's. I was put on antibiotics while waiting for urinalysis but no bacteria. Told to go off the antib. when it didn't help the pressure and irritation I was still feeling. A week later I had MAJOR pressure feeling bearing down from inside along with the irritation turning to a lot of pain. Ended up in ER getting pain meds. Urine has been checked 4 more times now and no bacteria. Also asked for a urine cytology for cancer and that was negative. (Just learned yesterday, very scary).

I just finished a bladder diary for two days: 2 liters intake each day and 1st day went 31 times, next 44. The pain has never been as bad as that night at the ER and some days I don't have it at all. The pressure feeling has gone for the most part. Ice pack between my legs numbs out what pain I do get and makes me a little more comfortable while its on. Anti-inflammatories at prescription strength did nothing.

The lousy dr. is supposed to be some expert in IC but she seems like everyone she sees is automatically told they have it. Considering the fibroid, which is going to have to come out, is pressing on it, there sure is a likely cause but neither my GP or this person thinks that I would get that kind of pain from my fibroid pressing on it. Maybe it just set it off???

Meanwhile, I have no life with going 31-44 times a day. I'm worse when sitting for very long or standing and walking is the worst for frequency and even irritation. Is that common with IC? So now what to do while waiting for a 2nd opinion and however long it will take before I get the fibroid surgery.

The uro-gyn gave me a scrip for elavil. She said it would work within a few days or right away, can't remember. Can anyone tell me if it works that fast? Does it work for frequency or just pain? I've read all about the side effects and weight gain and I really don't want that. Can it be taken for a few days just to get you past a tough spot? I was once given it for depression at only 5mg as a gentle starting dose several years ago and it made it hard to urinate. I told this to the uro-gyn and she looked at me as if I was an idiot and said that's what you want. But I wonder if that causes some sort of damage in and of itself.

I'd be grateful for any insight into this. Thanks a lot.

Holly

[Bessie]

Can you find another urologist???? You don't deserve this kind of treatment. I don't know why some doctors act like that. I would fire her and find another doctor who will treat you with dignity and respect.

I have tried Elavil but can't take it.......it completely drugged me and made my heart race.

I am sorry you are having so much pain. I also have the pain with sitting and walking. I use to walk every day until I got IC. I keep hoping to one day start back.

Hang in there and keep us posted.....we care

[kadi]

Elavil has been a very helpful medicine for me. I went from voiding 60+ times a day, down to 15. It reduced my pain & nocturia as well.

I definitely agree with octoberfarm that you need a second opinion. If your fibroid tumor is growing, I'd want answers on that rather than just trying to treat symptoms that may or may not be IC.

Wishing you success and comprehensive medical treatment soon!

[leelee88]

Elavil works great for me...

[Hollyd]

Thanks so much for your kind responses. My GP is referring me to someone new. I'm not sure how soon I'll get into see the new doctor, no one is there today to make an appt. I sure hope she's completely different.

I already take klonopin and Trazodone for sleep (insomnia issues) and I've had these 44 "goes" days but sleep really well with no nocturia. I experimented last night with taking 1/2 my trazodone at dinner time but all it did was make me sleepy and I still kept going. Darn!

If I take the elavil I'm afraid I'll just become so exhausted that I'll be very low function, but of course staying like this isn't exactly allowing high function. As it is, b4 these symptoms these drugs kept me tired all the time but when I drop the dosage I don't sleep well.

Between last week and this week I've had 3 tests that might have turned up cancer (I'm also having strange bleeding between my periods and that combined with urinary frequency can be a sign of uterine cancer) and everything is looking real good so far but IT"S BEEN SO SCARY!!!!! I feel like I'm in a car that is out of control are nearly crashing here and nearly crashing there. Not doing a lot for my stress levels!

My GP said she was sure the uro-gyn would want to do a biopsy for uterine cancer but she said 'oh it's just hormonal'. There is NO medical protocol for ignoring that, especially at my age of 51. It might just be hormonal but protocols say you have to rule it out. That's how bad this doctor was.

Thanks for listening! I really just needed to spill a bit.

[Hollyd]

How long does it take to know whether Elavil works for you? One pill? A few days?

Thanks

[jjt001]

I started Elavil at 25 mg and it worked almost immediately -- within a couple of days. However, my pain came back and I eventually had to work up to 75 mg. I've been able to maintain at that level and have mostly pain-free days, with a few flares here and there. I've also adjusted to the sleepiness pretty well, though some days (like today!) are harder than others! I hope it helps you as quickly as it did me -- I'm so grateful for Elavil!

[kadi]

I had improvement the first night I took Elavil 10mg. Went from voiding every 20 minutes, completely unable to sleep, to sleeping 4 hours straight that first night. After a week or so on it, I was able to sleep 7-8 hours a night with maybe 1-2 wakeups to void.

My doctor recommended taking it about 7:45-8:00pm in order to wake up at 5:45. I found I was a bit groggy first thing in the morning, so I set the alarm 25 minutes earlier to make sure I was alert enough to drive to work at 6:45. That worked out fine. I did not have daytime sleepiness, in fact, I was more energetic because I was actually able to sleep at night & rest. The early morning grogginess was not a big deal if I got up early enough to shake it off before driving & it went away within a month or so. Eventually I increased to 20mg & have been on that dosage for about 3 years. I take it at bedtime now & have no sleepiness during the day, even first thing in the morning.

I would have liked to increase it more, but when I went up to 30mg, I had ravenous hunger that kept me awake (and was completely a drug side effect--happened after eating a large pot roast dinner, 2 desserts & a 12 oz glass of milk). Given that I did have weight gain at 20mg, this was not an acceptable side effect. So, I've stayed at 20. But many IC patients can tolerate more without problems.

I think I could have avoided the weight gain if I'd stayed aware of my weight & how much I was eating. I did not have any weight gain @ 10mg, got overconfident & did not watch myself at 20mg. I gained 30 pounds in 7 months. I have since lost 8 pounds and am working on the other 22, with being more conscious while eating and exercising more.

In spite of the weight gain, Elavil is a big part of my current level of health & I'm very grateful for it's help with my IC symptoms.

[sami4]

Well, it sounds like you have a couple of physicians who for some reason dont seem to be able to put together a comprehensive diagnosis?
As a long time fibroid sufferer myself, I can tell you these little buggers bleed! Between periods, flood during a period, and seem to breed like rabbits.
You also could have uterine polyps along with the fibroids which also bleed and drip. Thats a pretty darn good sized fibroid, and if its pressing on your bladder, it would make common sense to refer you to a gynecologist, and preferably a surgeon who can tell you about your options. Now, that big a fibroid is not going to go away without some kind of intervention. Seems to me that is the first place to start.
When you get that settled, see how your bladder problems behave? They could be a lot less? They could be unchanged? If they are unchanged, then start to explore other options with a urologist who seems interested in you.
I went through 3 urologists, before I found one I was in sync with.
One of the keys for me in your post was the statement,"I am not bothered at night." Could the reason be that lying down repositions your enlarged uterus and eases pressure on the bladder?
What large city are you near? If you want to email me at sami4esp@aol.com and tell me, I may know someone in that area that is good.
Key word: One thing at a time. If it were me I would have the fibroids evaluated first. Highly unlikely its cancer with those fibroids, they will do a biopsy to be sure, but fibroids drip. I have an ultrasound and biopsy every six months due to fibroid spotting. Fibroids are not cancerous.
Sammi

[Hollyd]

Originally Posted by sami4

As a long time fibroid sufferer myself, I can tell you these little buggers bleed! Between periods, flood during a period, and seem to breed like rabbits.
You also could have uterine polyps along with the fibroids which also bleed and drip. Thats a pretty darn good sized fibroid, and if its pressing on your bladder, it would make common sense to refer you to a gynecologist, and preferably a surgeon who can tell you about your options. Now, that big a fibroid is not going to go away without some kind of intervention. Seems to me that is the first place to start.

Yep, I'm ready for this to be out. I had a uterine polyp once before, so maybe. If the US guy I know to be good who found the last one was in town when I was in a lot of pain and needing an US and not the jerk I once had before at the same clinic who pays no attention to anything - I'd feel like I had a better inspection. Grrrrr. I've had fibroids for over 6 years and never had bleeding between periods though.

Originally Posted by sami4

When you get that settled, see how your bladder problems behave? They could be a lot less? They could be unchanged? If they are unchanged, then start to explore other options with a urologist who seems interested in you.
I went through 3 urologists, before I found one I was in sync with.

Yes, that's definitely what I'm thinking. I can't know a thing until this fibroid is off my bladder.

Originally Posted by sami4

One of the keys for me in your post was the statement,"I am not bothered at night." Could the reason be that lying down repositions your enlarged uterus and eases pressure on the bladder?

While lying down does improve things somewhat I have klonopin, benadryl and Trazodone to thank for that.

Originally Posted by sami4

What large city are you near? If you want to email me at sami4esp@aol.com and tell me, I may know someone in that area that is good.

I'm not in the U.S. anymore, living in Australia now but that's very kind of you.

Originally Posted by sami4

Key word: One thing at a time. If it were me I would have the fibroids evaluated first. Highly unlikely its cancer with those fibroids, they will do a biopsy to be sure, but fibroids drip. I have an ultrasound and biopsy every six months due to fibroid spotting. Fibroids are not cancerous.
Sammi

That's interesting to hear that you get regular biopsies because my GP thought that's what the gyn-uro would definitely want to do and she can't be bothered. I think I should have a biopsy too, just to be sure. I'm not worried about the fibroid being cancerous - just unusual for me to bleed like that. It helps to hear that someone else's doc definitely keeps up with the biopsies just to be sure - it makes me feel more confident in saying I want one done.

Thanks "heaps" (Australian for "a lot" :-))

[Hollyd]

Thanks to everybody for the help with the elavil. If I can't stand this anymore while waiting for doctor appointments and eventual surgery I will definitely try it.

Anyone notice it having an effect on their period when they start it? Throwing it off any? I just want to be able to know what's what.

[Hollyd]

Originally Posted by aiditacar

i I have the same proble ,I also have fibroids and my Dr thinks I also have IC .He thinks fibroids should not give you this kind of pain, I aslo have a lot of pressure and frecuency .I saw an urologist and tolled me I don't have IC he did a cysto without hydrodistention in his office and that was it. I feel like I need a second oppionion and will push for one tomerrow. I also did some research on elavil and I will be whilling to take it if it takes the pain and frecuency away, about the weight gain I'll just have to exercise

This is just so confusing, isn't it? grrrr. I'll be interested to hear what you learn in a second opinion. I just had a cysto with hydrodistention done by a gyn in the hospital (because of a gyn issue going on as well that needed a hysteroscope) and he said there are no signs of IC, he says it's overactive bladder but everything I read about that says that's an urgency and incontinence thing and those aren't my issues. He's given me Vesicare which I've only been on for 4 days. Last night I had all my usual trouble, frequency and pain.

I have an appt. with a uro that is supposed to be great but can't get in until March 7 - but am on cancellation list. Meanwhile the gyn is really pushing me toward Uterine Artery Embolization for the fibroid but I want to read up more on that.

One thing about Elavil (I've taken it years ago for depression) is that SOME of the weight you gain is from water, it makes you retain water and when you stop it that part comes right off. But I did gain weight with it otherwise.

Let me know how you go with your second opinion, if you like.