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I'm so frustrated....ladies, advice? (yes, another health rant!)

post #1 of 21
Thread Starter 
To refresh anyone's memory, I've been having VERY bad cramps some months during my period, centered on the left side. I went in 2 weeks ago for an ultrasound and a mammogram (my first mam but just routine because I'm getting old ) Last week I had a colonoscopy where he did take a biopsy, but says there shouldn't be anything to worry about. So, today I went to my gyno to get results.

First, I need a follow up mammogram and possibly an ultrasound of the area. They were supposed to call me to let me know but didn't "get around to it". Second, LUCKILY the ultrasound didn't show any cycsts which I'm trilled about, but my doctor still is concerned about the pain so now I have to go for a uterine C-scan (complete with that gross stuff to drink) and a D&C. He won't put me on BC because I'll be 40 this year, and I smoke. I even asked about what if I stop smoking and he said the risks are too great even then. He first suggested "burning" the inside of my uterus but decided against that because of the problems it could cause in the long run.

I'm starting to feel like a hypocondriact! Every test has come back fine and I STILL feel like crap! Besides the pain, I'm also tired constantly, have no energy or motivation, very moody, I get low grade fevers a few times a week for no reason, and I'm still having problems swallowing sometimes. I asked him if it could be my thyroid....he said the pain, no. The other symptoms, yes...and referred me back to my PCP so HE could refer me to a thyroid specialist. So that's MORE time off work to drive 1/2 to my doctor to see him for 10 minutes and 1/2 hour back to work.

I'm just tired of this. I KNOW something isn't right with me, but no one is getting to the bottom of it. I know specialists can only diagnose within their specialty but they look at me like I'm lying or crazy. COULD it all be in my head???

I'm sorry, I just needed to vent. I just wish I felt like "me" again. Anyone want to tell me what to expect for the D&C? They told me I have to take at least 2 days off from work, but I'm trying to get approval from work to schedule it on a Friday so I will have the weekend to recover.
post #2 of 21
Hey, calico2222, I can't help you with the cramps and pain, but I will say that the other symptoms (tired, moody, no energy) could all be linked to a thyroid problem. I was hyperthyroid for years which made me overly jittery, moody, and not able to sleep. Then, I got my thyroid radiated, so now I'm hypothyroid. I have to take a pill every day, and when my levels are low, I experience the symptoms you describe.

It is not in your head. These things are not easy to pin down, and you just have to keep persisting with the doctors. It's a hassle and a nuisance to have to keep going back, but it'll be worth it when they figure out what's wrong. Hang in there. It's not easy, I know.
post #3 of 21
Thread Starter 
Thanks hon! . I'm waiting for my PCP to get back to me about referring me to the same thyroid doctor my MIL and SIL go to. Hopefully I won't have to go in to see him first, but who knows.

Another question for all of you: I asked my gyno if I could be premenopausal. He said "no" because I was still getting my periods. I thought "pre"-menopausal meant "before" menopause...am I wrong? I read over the list of symptoms that MomofMany posted on the other thread, and it fits me perfectly. Especially the "phantom" periods. I've had them where I get killing cramps, wait a few days and just basically spot for a day or two and it's over. The next month it's so heavy it's not funny.

Just to let you know, I normally don't try to diagnose myself by reading symptoms on the internet (I would belive I was dying of everything!) but that interested me since I'm 39 and have never gotten pregnant. That means that part of my body may be shutting down already, right? Or is that an old wives tale?
post #4 of 21
*waves to fellow WV'er - nice to see another cat lover in the Mountain State!*

I think your GYN didnt understand the question! It might mean early menopause - the cramps, strange periods, etc. Might want to get a second opinion. If you're in Charleston, there's a GYN at CAMC named Dr. Pearcy who is not only VERY smart and helpful, but is the most courteous and understanding doctor I've ever met.

As a side note, I think WebMD has this online program called a Symptom Checker, where you can input what kind of pains you have and it will return a list of potential things that could be wrong. Of course that's not to freak you out or anything but it might arm you with some knowledge before you visit your doctor again!

Hope this helps!
Sherice
post #5 of 21
Thread Starter 
Oh hon, thanks! I'm SO far from Charleston I haven't even been there yet. It's a 4-5 hour drive. I live 10 miles outside of Maryland (Cumberland) so I may have to contact someone else here but I'm going to wait until all the results are in right now.

I'll definitely check out the website though...thanks for posting that!
post #6 of 21
My friend had similar complaints as you do. Severe cramps especially around the time of her period. She had a D&C. A D&C is where they scrap the tissue from inside of the uterus. If you are losing a lot of blood this is probably why you are feeling tired. A D&C is a fairly easy procedure and you should be able to go back to your regular activities as soon as your feel like it.
post #7 of 21
so many women seem to be having plumbing problems lately! I started the birth control thread, someone else has a menopause thread, and then this one.

My first thought would have been cysts too. Did the Dr rule out endometriosis? Endo doesnt ussually cause cramping on just one side, however its possible that you have endometrial scarring on one side and thats why it only cramps there.
post #8 of 21
I don't have any suggestions but wanted to offer support. I am going through nearly the exact same thing symptoms and all so I feel your pain, literally!

My tiredness and related symptoms have responded well to thyroid medication once my PCP did bloodwork to determine I am hypothyroid.

I have been for an ultrasound (clear) and am now awaiting a colonoscopy to determine the cause of my lower left abdominal pain.

This is not in your head!!! Hang in there, they will figure it out!
post #9 of 21
Thread Starter 
Quote:
Originally Posted by nekkiddoglady View Post
so many women seem to be having plumbing problems lately! I started the birth control thread, someone else has a menopause thread, and then this one.

My first thought would have been cysts too. Did the Dr rule out endometriosis? Endo doesnt ussually cause cramping on just one side, however its possible that you have endometrial scarring on one side and thats why it only cramps there.
Maybe it's something in the water?

The Dr did a full pap smear and took biopsies of polyps on my cervix, but all tests came back negative. I asked him about that specifically because I was diagnosed with "suspitious" abnormal cells, possiblibly the beginning of endo 13 years ago but my Dr at that time gave me medicine and all internal exams have come back fine since then.
post #10 of 21
Thread Starter 
Quote:
Originally Posted by CruiserMaiden View Post
I don't have any suggestions but wanted to offer support. I am going through nearly the exact same thing symptoms and all so I feel your pain, literally!

My tiredness and related symptoms have responded well to thyroid medication once my PCP did bloodwork to determine I am hypothyroid.

I have been for an ultrasound (clear) and am now awaiting a colonoscopy to determine the cause of my lower left abdominal pain.

This is not in your head!!! Hang in there, they will figure it out!
I remember you posting on the last thread I had when the ultrasound and colonoscopy were first ordered for me. I'm glad to hear the ultrasound came out clear! Just to let you know, the colonoscopy itself was nothing. They took a biopsy that woke me up for about 30 seconds (long enough I heard what the Dr was planning for his wife for V-day ). The worst part is the nasty stuff you have to drink the night before, after 3 days of Milk of Magnesia. I swear, I lost 20 lbs! But, it's not a diet I would recommend for anyone. I couldn't go to work the day before because I couldn't stay 10 ft from the bathroom (sorry....TMI?? ). Let us know how it goes. When is it scheduled?
post #11 of 21
So I have a lot of similar symptoms to you, and have had exhaustive testing over the last 4 years. I just recently had a Head CT and some special blood tests, so maybe that will show something. The last 4 years have clearly shown me that Doctors have no idea whats wrong with anyone - they just have a better skill and tool-set to figure it out. If what is wrong with you is not something common or very obvious, you often face a lengthy diagnostic process of being ferried around between more doctors who have no idea. I am therefore firmly of the opinion that a little self-education can only help the doctors help you, and help you understand what they are doing.
I had a full abdominal laparoscopy, a hysteroscopy, and a D&C one afternoon about 3 years ago. It was a day surgery, I was there for about 8 hours including recovery. I did not need to take any additional days off work. I had 3 dissolving stitches in my belly button, that got slightly infected (red and hot, not very painful) so I needed a weeks worth of antibiotics. But IMO, MUCH better than the colonoscopy prep (which I agree with you - is much worse than the colonoscopy itself!)

I hope they figure it out. From what Ive read a lot of your symptoms could be pre-menopausal, but unfortionately there is no way to "test" for that, and you are fairly young (any family history of early menopause? There is genetic linkage shown with age of menopause). Have you had cortisol testing (am and pm) and or ACTH test? Sometimes difficulty in the hypothalamic-pituitary-adrenal axis can cause cramping, left sided pain etc. These are often worse during your period because of the endocrine changes associated with menstruation. Also, if the pituitary is hypoactive, it could explain many of your symptoms. Stupid bodies going funky on us!!!
post #12 of 21
Quote:
Originally Posted by nekkiddoglady View Post
so many women seem to be having plumbing problems lately! I started the birth control thread, someone else has a menopause thread, and then this one.

My first thought would have been cysts too. Did the Dr rule out endometriosis? Endo doesnt ussually cause cramping on just one side, however its possible that you have endometrial scarring on one side and thats why it only cramps there.
My first thought would be endo also. When I get bad adhesions I get terrible pain on just one side (my right), and once they are removed my pain goes away. Have you ever had laproscopic surgery to rule that out? Most of the time they can't see endo adhesions from an external exam or xrays/ultrasound.
post #13 of 21
Quote:
Originally Posted by Februa View Post
The last 4 years have clearly shown me that Doctors have no idea whats wrong with anyone - they just have a better skill and tool-set to figure it out.
Of course that's if they'll use those tools instead of getting stumped when the basic stuff looks normal. I know one person who's checked/wrote in extra stuff on her blood work a couple times because the doctor wouldn't order it - both times the tests came back showing there were problems, though.


I hope you (both of you actually) can get answers to what is going on. It's certainly tiring to know something is wrong yet doctors can't tell you what or why - or even consider something because they're misinformed.
post #14 of 21
Thread Starter 
Quote:
Originally Posted by Februa View Post
I hope they figure it out. From what Ive read a lot of your symptoms could be pre-menopausal, but unfortionately there is no way to "test" for that, and you are fairly young (any family history of early menopause? There is genetic linkage shown with age of menopause). Have you had cortisol testing (am and pm) and or ACTH test? Sometimes difficulty in the hypothalamic-pituitary-adrenal axis can cause cramping, left sided pain etc. These are often worse during your period because of the endocrine changes associated with menstruation. Also, if the pituitary is hypoactive, it could explain many of your symptoms. Stupid bodies going funky on us!!!
I haven't even heard of most of those things so I'm sure I haven't had those tests. Unfortunately, I'm adopted (closed adoption) and have no idea what my genetic history is. *sigh* I have a feeling I'm going to find out what those tests are soon enough though.
post #15 of 21
Quote:
Originally Posted by calico2222 View Post
When is it scheduled?
The colonoscopy isn’t scheduled yet. My doctor believes I may have diverticulitis causing the pain, my mother and maternal grandmother both have that. So for now they have me on an increased fiber diet, keeping a food diary and watching a list of ‘trigger’ foods to see if they upset my digestive tract. They said something about feeling a colonoscopy to be less necessary in someone my age (I'm 22) which I didn't understand.

I certainly hope they find out what is wrong with both of us soon!
post #16 of 21
Quote:
Originally Posted by calico2222 View Post
I haven't even heard of most of those things so I'm sure I haven't had those tests.
Simple info cortisol and ACTH. Look through some of the health problems associated with them, maybe something will sound familiar or give you an idea of what to ask your doctor.

But you're right, if you have no clue what they are you likely haven't been tested.


Anyone want to hear something rather funny? No one once has considered checking me for Addison's though I've even mentioned it....
post #17 of 21
Thread Starter 
Quote:
Originally Posted by strange_wings View Post
Simple info cortisol and ACTH. Look through some of the health problems associated with them, maybe something will sound familiar or give you an idea of what to ask your doctor.

But you're right, if you have no clue what they are you likely haven't been tested.
Thank you! I'll definitely check both them out because I'm way over my head here. Any help is appreciated.
post #18 of 21
Thread Starter 
Quote:
Originally Posted by CruiserMaiden View Post
The colonoscopy isn’t scheduled yet. My doctor believes I may have diverticulitis causing the pain, my mother and maternal grandmother both have that. So for now they have me on an increased fiber diet, keeping a food diary and watching a list of ‘trigger’ foods to see if they upset my digestive tract. They said something about feeling a colonoscopy to be less necessary in someone my age (I'm 22) which I didn't understand.

I certainly hope they find out what is wrong with both of us soon!
After my colonoscopy, I was diagnosed with mild Diverticulosis, which is the beginning stages of Diverticulitis. Basically, I have weak spots in my colon due to low fiber diet and isn't uncommon in people my age. Maybe the reason they don't feel a colonscopy is needed is because you are still young enough to cure yourself with the right diet , that makes sense to me. Your body is still able to heal itself and if they can tell that is what you have from an ultrasound, be happy you aren't getting a colonoscopy! Changing diet and seeing what happens seems like the better way to go.

The doctor did give me a printout explaining the two so if you didn't get it, here's the link to print it out:

http://digestive.niddk.nih.gov/ddise...iverticulosis/
post #19 of 21
Addison's is so rare, a doctor isn't going to go off and test for it for no reason. From your posts, I wouldn't think you have Addison's at all, and wouldn't even consider it. The likelyhood of you having it is slim, if you can even get a doctor to look into it. It took me 1 1/2 years and two doctors to get diagnosed, and my primary doctor didn't believe I had it until after I was diagnosed and presented her with test results. Of all people, my dermatologist is the one that noticed it b/c my ACTH was outrageously high. Most people have never heard of Addison's Disease, and most doctors have never in their life treated or even tested anyone for it. I'm on my 3rd Endocrinologist, and even my first one who was ancient had never seen anyone with Addison's, and neither have my other two doctors. If it tells you anything, a young boy (around 10 years old) was diagnosed with it at the hospital I worked at, and word about his diagnosis spread through the whole hospital. Everyone was talking about it.

I'm not a doctor, though. I have also never heard of side pain being a symptom of Addison's.
post #20 of 21
Quote:
Originally Posted by kara_leigh View Post
My first thought would be endo also. When I get bad adhesions I get terrible pain on just one side (my right), and once they are removed my pain goes away. Have you ever had laproscopic surgery to rule that out? Most of the time they can't see endo adhesions from an external exam or xrays/ultrasound.
Altho rare, endometrium tissue can sometimes spill out thru the fallopian tubes and end up on other organs, and cause scarring there.. when you go thru PMS/Menses, the endo scar tissue on other organs reacts the same as the endo scar tissue found on your reproductive organs!
post #21 of 21
Quote:
Originally Posted by kara_leigh View Post
Addison's is so rare, a doctor isn't going to go off and test for it for no reason. From your posts, I wouldn't think you have Addison's at all, and wouldn't even consider it.
If you mean anyone else - it's probably not even remotely likely, though hormone levels can be off for other reasons.

If you meant me, I have some weird things that make no sense - sodium levels test low normal, but I have to eat a lot of salt to get it there. Even eating 5g a day can't push it up to mid or higher normal range. I also have blood pressure that is constantly low, falling as low as 50s/30s (that low doesn't make that much sense with my NCS diagnosis). The one thing that would definitely point away from it, though, is that I cannot get my potassium within normal range and keep it there. Supplements do nothing and IV (lactated ringers) doesn't even make much difference.
Whatever else is going on, florinef would probably be help...

But as for "rare". Once you have something and talk to several others with it you realize rare probably isn't the right word, but maybe under diagnosed is. Such as those with thyroid problems tend to be.

Speaking of salt... the grocery store closes soon, I'm suddenly really wanting fritos.
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