Undiagnosed and getting frustrated!!

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Permalink Reply by Bren from Rivendell on September 15, 2008 at 2:41pm

Have you sought a second or a third opinion? Sounds like its definitely time to do that! Time's a-wasting! And time is crucial girlfriend! Sending good thoughts and prayers out to you...blessed be, Bren

Different hospital systems may help as they did in my case....don't settle for a half-ass answer or doctor...you owe it to yourself...DON'T SETTLE FOR ANYTHING LESS THAN THE BEST!

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Permalink Reply by Angela on September 15, 2008 at 2:48pm

Thanks Bren.

Yes I, called my Dr. and asked for a referral to an Internist. Supposed to see him in the later part of Novemebr...I called this morning and asked to be put on the cancellation list in hopes of getting in sooner.
I agree times a wastin'!!

*Hugs & Smiles*

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Permalink Reply by Mel on September 15, 2008 at 3:49pm

I have endometriosis, and your symptoms do sound consistent with that. Who did the laparoscopy? Have you seen a Reproductive Endocrinologist? My understanding is that sometimes endo can be microscopic...and that even small amounts can cause a lot of pain, sometimes even more than advanced stages of disease. Also, and this is my ignorance, does a laparoscopy enable them to see areas such as the rectum, cul-de-sac, etc, well? I had a open surgery this summer--laparatomy--to remove extensive endo. I never had the less invasive procedure done, so am not sure whether it's possible they could miss some endo when doing that.

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Permalink Reply by Angela on September 15, 2008 at 4:10pm

During my follow-up with the Dr. that did the laparoscopy I had asked her if there was anything more she could do to investigate further. Her answer was no and recommended I have kidneys and bowels checked out.
She assured me that the laparoscopy would have 'seen' endo if that 's what it was.
The pain itself is one thing...the fainty spells in combination with the pain has me a bit more concerned. Reading leads to suspicions.
Colon polyps or even cancer, lAortic abdominal leaking aneurysm, diverticulitis, all of them however are short a symptom or two...the leaking aneurysm seems to be the closest match.

The pain is ALWAYS in the same place. I always feel it, ranging from a dull ache to a disabling pain that radiates to my back and is barely touched by Advil and tylenol.

I know I know...no point in jumping to conclusions on a self diagnosis...Really I just want to know what things can be ruled out.

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Permalink Reply by Dee on September 15, 2008 at 9:52pm

Angela,
I would go back to your gynecologist or to another gynecologist if you must.
Ask for a CA-125 and transvaginal ultrasound and make sure they do an internal exam.You might even press them for a CT scan or MRI if they question any of the ultrasound results. Make them prove to you it is not something like ovarian cancer.( Sorry for bringing that up but since it is OC awareness month and my diagnosis came from pain on my left side it is better to rule it out.) That combination of symptoms needs to be investigated.

Good Luck!
Dee
OC survivor 2005

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Permalink Reply by Angela on September 16, 2008 at 6:05am

Thanks Dee,

That's a good suggestion. I'll ask my Internist what he thinks about back tracking some steps.
If you don't mind me asking...what were the symptoms you had?

*Hugs & Smiles*

Angela

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Permalink Reply by Dee on September 16, 2008 at 9:44am

Angela,

I had pain on the left side of my abdomen by my hip. I thought I had first pulled a muscle or was passing a kidney stone. I had heavy periods and had put on some weight but thought since I was 49 years old it was a stage I needed to go through before menopause. I mentioned the pain when I went for my annual physical with my gynecologist and she sent me for the ultrasounds. The day after the ultrasounds I was in the ER because the pain was so intense( I was doubled over.) . The ER doctor sent me for an MRI( ovaries enlarged) and then I was referred to a gyn- oncologist at the cancer center.

I am not a doctor but have become a "lay" specialist in the disease and advocate in raising awareness. You can check outthe national ovarian cancer coalition page www.ovarian.org for more info.

Those symptoms could be other things also so you just have to keep plugging away asking questions of your doctors. I suggest that you get copies of all your test results to share with other doctors as you see them. Keep us posted on how you are doing.

Hugs
Dee

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Permalink Reply by Angela on September 16, 2008 at 9:52am

Thanks Dee...

How long did you have the pain for?
Mine started out as very painful periods left side about2.5 inches below the belly butto but tigh to the hip...and a deep pain. the area is consistent. over the past 3 years the pain has progressively worked itself outside of just my menstrual cycle. Always at least a dull humm of discomfort if not more intense. It's very much been a gradual process for me and a long one I think.

*Hugs n' Smiles*

Angela

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Permalink Reply by Dee on September 16, 2008 at 10:04am

It started the week before my gyn visit. I waited about 3 weeks to get the ultrasounds and it was a dull ache the entire time. The transvaginal ultrasound must have jarred something to cause the pain to intensify and made me go to the ER. There was a thought at one time that it could be my ovary twisting which can happen.

Hugs
Dee

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Permalink Reply by Leslie on September 16, 2008 at 12:59am

Angela,

I'm not a DOCTOR by NO MEANS... But ALOT OF YOUR SYMPTOMS I ALSO HAVE OR HAD.... I have a NUMBER of ailments/diseases/problems going on right now....

FIrst of all.... Have you seen a Gastrointerologist??? If not I suggest you do.... Seems like ALOT of your symptoms could be stomach related..

Ok, here goes my stuff and Maybe you can get something out of this....

I too have been light headed but did in fact pass out a #### of times... Had a FULL Cardiology workup, I MEAN FULL, also saw a Electorphysciologist... DON'T ask, had another FULL WORKUP... Nuclear injections and everything... Also a Neurologist..... Mine turned out to be that I have extremly LOW BLOOD PRESSURE.... and this is something I will have to live with... I have to be careful with extreme temp. changes, and the Cardiologist actually told me to suck on 1-2 pc.s of Kosher Salt Every am... Problem here is that I have Adema, so I retain water and have to watch my salt intake BIG TIME... Ok, that was the light headed passing out thing...

The pain that radiates to the front that I just found out was the Iliac Crest... Is actually stemming from my Lumbar/Sacrum region and radiates to that area.... I unlike you have the opposite problem with my bowels (BLUSH)***** I have alot of PAIN FROM THIS and this is due to alot of issues, herniated disc problems/bulging discs etc. etc. Not to mention I was in a car accident in Jan so this only exaserbates EVERYTHING..... Seeing a Orthopedist & P.T. for this and started doing Aqua Therapy... Seems to help a bit, although next month I am going to a Pain Management place (per my Rhumatologist, I also have Fibromyalgia) to start getting Needle Injections into my sacrum area to hopefully relieve the pain... I know what you mean about PAIN... Unfortunately for me NO PAIN MED WORKS and that's why they are trying this route. I have ALOT of other issues (as i mentioned) going on but this probably will not be of ANY HELP or interest to you..

I am overdue for a Colonoscopy, (which you seem quite young by your pic, so I don't t hink you would need one. but then again I had my first one @ 39, found Polyups.... Was removed and i was suppose to go back a couple of years ago and go every 3 - 4 years but I am LONG OVER DUE... PRIORITIES HERE...... Again my suggestion is see a GASTROINTEROLOGIST... I know alot of what you are saying is that you believe it is Gyno related but what I found is that everything seems to be inter-related and there is often differed pain...

GOod Luck and keep me/us posted.

Be Well..

xoxoxo Leslie

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Permalink Reply by Angela on September 16, 2008 at 6:02am

Thanks Leslie

I appreciate you sharing your story with me. I see an internist the end of November (although my gut tells me I should go sooner) I'm on a cancellation list for anything that may open up earlier.
yes, I'm young I suppose, 35 this year. I do have similar symptoms to you although they hardly seem as severe. Sounds like you've been the wringer with more to come.
I'm not sure it's Gyno related...ok well neither was the Dr. that did the laparoscopy. the thing that kind of confuses the gyno thing is that she did have me taking "the pill" and that helped the pain, it kept it at a low dull ache. I went off of it because even though the pain was more than tolerable, it only covered the symptom of what ever is going on. everyday, I feel the pain inching it way back, I suppose that's "the pill" working out of my sytem.

I will indeedy keep you posted!

*Hugs & Smiles*

Angela

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Permalink Reply by Gina on September 16, 2008 at 9:09am

I am sorry you are having so much trouble. I would just keep going to a doctor until I get some answers. It is very obvious that something is not right. You will eventually find someone who can help. I will be thinking of you in prayers...Keep us updated and I hope you can find someone to help you ..

Take Care

Friends Gina

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