Okay, I wasn't looking for a diagnosis here, just wondering if maybe someone had a similar situation. But thanks.

I am not a doctor. Had similar excess lining issues. Look up uterine ablation. I just had the procedure and it wasn't bad. Kept everything there, was back to normal in a couple days. My Dr. used Novasure.

Sorry I don't have any support story, but I will be emotionally supporting you from afar! (((Hugs)))

I hope your appointments get set up quickly, so you don't have to wonder too long.

Actually had ablation a couple years ago for heavy periods -- miraculous, as I haven't had once since! But it makes it hard to figure out that "is your cycle regular?" question!

Thank you, spring!

Hi Sueb,

Totally understandable that this is causing you stress and it can be helpful (or not) to hear from others ... it can seem such a long wait to see the professionals.

I have two comments.

One, in re the thicker than normal endometrial lining. My Dr. just, like, a month or so ago, diagnosed the same thing for me for the first time. He told me that it was not a concern in my case because it will resolve itself when I get to menopause. If it had happened, say, in my 30s, it might have required action. So i mention that FWIW.

More broadly, take comfort in the frequency of your check ups. You are getting ultrasounds frequently to forestall any problem. If there is an issue, the frequent intervals of your ultrasounds were chosen so as to to minimize the impact of any development.

Hope you get your questions resolved ASAP, Sue.

I would guess that the lining thing may be associated with age and approaching menopause? As for the cysts and fibroids, along with your family history, it it were me, I might feel like a hysterectomy would be a good idea. Isn't the ablation also a treatment for fibroids? Can a person have more than one albation?

Not sure I'm understanding about the GYN. Do you mean you are not seeing one now or you are going to a second one?

Try not to worry (not easy I know). Hopefully they can get the tests, etc. done quickly and come up with a plan of action!

The only experience I have to share is with an ovarian cyst. You mention a "complex cyst" but I'm not sure what that refers to. I had what is called a dermoid cyst and don't know if that qualifies as complex or not - I won't explain them, you can look it up - it is a bit freaky. Mine was found during a routine pelvic, I'd had no pain or symptoms. Due to the size, the doctor was concerned and recommended laproscopic removal - did not think waiting another month to see if it resolved was wise in my case. The plan was to remove the cyst alone if possible, but it was so entangled with the ovary, that was not possible, so I'm down one ovary. At that time, my family cancer history was one brother deceased from brain cancer, one female first cousin deceased from breast cancer. SINCE then.... one sister deceased from ovarian cancer, one uncle (father to the first cousin) deceased from breast cancer and just 3 days ago, one nephew (youngest son of my deceased sister) deceased from pancreatic cancer. ALL but my brother are brca related. With your family history (I don't know your family genetic situation or if you've been tested) I would be very proactive. Obviously you are doing so with the ultrasounds, but if you're looking for advice (and mine is worth what your paying!) get a second opinion sooner rather than later.

Sueb, your family history certainly warrants the close monitoring. My situation was completely different: had a hysterectomy but left the ovaries in place in 1998 when I was 41, for uterine polyps and heavy / protracted periods. My Dr tried laparoscopic surgery first but the growths were larger and or more abundant than previously thought so it was converted to an open procedure--- unfortunate in my case because of my clotting disorder and the need for transfusions, inpatient hospital stay, etc. Two pathologists at the large, "100 best hospitals" diagnosed uterine cancer but DH took a look at the slides and told them to send it off to a more specialized lab. He was right, it was not cancer but we had a few tense days waiting....I know how that feels.

I will say I felt 200% better, more energy and just general better health after the operation. I would say good luck but you don't need it--- you're a well informed patient / consumer with access to excellent medical care and you will do well, I know.

Sue..... the wheels of getting a medical diagnosis can grind very slowly and be very frustrating. So sorry you are going through this. Please keep us updated....you know we are all here for you!

I don't know if you can have more than one ablation. Good question.

I have not seen a GYN yet. The original u/s was part of my routine annual physical with my primary care doctor. Now that this latest u/s has registered new info, I'm being referred to a GYN (same one who did my ablation surgery).

dlm, I think "simple cysts" are the ones that are tied to your menstrual cycle and usually go away on their own. I have had those before. Complex cysts can be one of 3 (I think) types -- one of which is dermoid. So far I have only talked to the nurse in my dr's office and I didn't ask what type of cyst it is or how big it is. I was actually surprised they weren't calling to say, hurrah, that pesky cyst is gone! ...So I wasn't prepared with questions.

I had an ovarian cyst removed when I was in college. It was discovered during a routine exam and was thought to be no problem...until several months later when it twisted and I needed emergency surgery. It was the size of a grapefruit! That has been my only experience with problematic cysts. At that time, it was major surgery and I was in the hospital for about 5 days.

Ironically (if that's the right word), I have an appointment with a cancer-risk assessment group (genetics dr plus oncologist) in early March. I saw them 11 years ago, and they were the ones who recommended the annual u/s and early mammograms based on family history. I wanted to see them to determine if I should have my ovaries removed (and/or have the brca test, which I haven't done). That question might be answered before then!

Thanks everyone.

Sue,
So sorry to hear you are going through this.. and so glad that you've posted. There are many of us who want to support you as best we can-- I don't have any relevant experience but I (as many of us) have been through the waiting game.. waiting for appts, waiting for results, waiting for the word that will allow us to move forward. You are doing all the right things-- you've kept up with medical appts and testing-- now all you can do is dig deep and find as much patience as you can until you have more info. Do whatever you need to do to stay relaxed.. whether it's business as usual/keeping busy..or a bubble bath , good book and takeout dinner. Just be good to yourself as you press forward. We're here with you.. my thoughts are with you!

Okay that explains about the dr. If I may make a suggestion, if I were in your shoes, I would have the gyn do yearly (or ever how often you need the ultrasounds) exams. My internist prefers his patients to also see a gyn. Which I prefer too as my gyn is a female just a couple of years older than me. My internist is male, younger and very handsome. LOL His thinking is, a gyn is more specialized/knowledgeable in that area and if you have needs come up, you would be seeing someone you (hopefully) feel comfortable with and knows your background. Of course, since you've used this gyn before, that is a plus. If you can find one who has experience or specializes in gyn oncology, that is a plus.

Good idea on the cancer risk assessment.

Thank you, funky.

Tina, I am sure, after all this, I'll be seeing a GYN. Probably would be recommended by the cancer risk folks too.

So, I am having the MRI tonight! Yikes. This is happening fast, which is good, but now I am super anxious. They actually wanted to do it earlier but I had eaten, and can't eat within 4 hours. So now it's at 8 pm, but have to arrive an hour earlier for bloodwork. I guess I probably won't know anything until I see the dr. -- they are trying to set up an appt. for next week, waiting for a call back about that.

If I were you I would immediately get myself to a gynecological oncologist for a second opinion. This is coming from someone who had a total abdominal hysterectomy for a rare gyn malignancy that my regular gyn was clueless about.

I wouldn't delay considering your family history.

I would see a GYN asap! I know nothing about ovarian cysts. I had fibroids three times and had to have a D@C each time. Not saying you will have to have that done. I would trust a GYN much more over a regular doctor because that is their specialty. I'm praying all goes well for you!

gibby, I don't even have a first opinion yet. I am seeing a GYN next week. I feel that my doctor's office is treating this with appropriate urgency since I just had the u/s on Mon. and tonight is the MRI, and they're scheduling the GYN for next week. Lightening speed, according to my typical experience with doctors.

Sue, I will be thinking of you at 8:00 (5 my time). I am so glad you are having the MRI quickly if for nothing else but to ease your mind.

You should be able to get your results before you see the doctor. I got mine before I left the hospital where the MRI was taken. You shouldn't have to wait and worry over the weekend.

I remember you and I are very much alike in that we worry, stress out and faint even if we are the ones picking someone up from a medical procedure :-).....so I can relate to you right now.....I hope you have a Valium or something similar....it really does help.

((((Sue)))) Sending positive thoughts.

Marlene, LOL! Yes, I'm a big baby. I don't have a Valium but one of my best friends is insisting on driving me tonight and keeping me company, so that's almost as good. ;)

Really, the MRI should be a piece of cake. Here, however, I don't know of anyone getting CT, MRI, PET scan results other than from their doctor. The person administering the tests are not allowed to give results and aren't all these reports read by a radiologist?

I do agree that your dr seems to be on top of things and moving things right along. That is a good thing!

Hehe, a little funny. I had MOHS surgery on my nose the week before Christmas. I am a needle wienie. My surgeon gave me a prescipt for valium (2) and some numbing cream, which he told me would probably not help. I was on the fence about the valium, having not taken anything like that (other than by iv when I've had a procedure in a hospital!), and the pharmacist really worried me when she started questioning me as to whether I've taken valium before, did I have a driver, etc. , etc. etc. I was kind of worried about how I might act, if I could walk around without falling all over myself, etc. so I didn't take the valium. I did fine though and while the numbing cream did not actually "numb" the area, it took the edge off the injection. I had an injection for the biopsy done without numbing cream, so yes, I can vouch for the difference.

Please keep us updated!

Tina, yes the MRI is read by a radiologist. In my case, the radiologist was able to give me the results before I left the hospital.

Okay - I thought you had seen the gyn and that's who was ordering the ultrasounds, etc. Once you've done that if surgery is recommended I would get a second opinion from a gyn-onc. Aside from the cancer expertise, they are expert surgeons which not all gynecologists are. If I had your family history I might want to have a consult even if surgery wasn't tecommended. I'm all about seeing the experts though and not leaving my healthcare to the average doc.

Perfect, I am glad you friend is driving you. You have access to the best care in the world and you have done everything right. You have every reason to feel confident, although we all know it can be scary.

We are sending good vibes from GW. Though nothing to strong enough to interfere with the MRI of course! ; )

Here is my lucky story. Lucky because it was ovarian cancer and caught early stage.

I was at the doctor for headaches and she asked the last time I had had a physical (years) so it was scheduled for the next week. This was a new GP. After my physical I was dressed and she asked as an afterthought when I had my last pap smear, which I couldn't remember since I was done having kids and hadn't been to a GYN in years (I was 45). The last time I had one, GP's weren't doing them, you had to go to a GYN. Anyway, she asked if I wanted to go ahead and I said might as well since I knew good and well it would take me forever to get it done otherwise.

She did an internal exam and when she pushed on my stomach with the other hand, I yelped. She asked if it hurt and I told her it did when she pushed on it! She told me she felt something and didn't think it was fibroids but it could be. She scheduled me for an ultrasound the next day and a cat scan the day after that. None of them were conclusive so I was scheduled for a visit with a gynecological oncologist. All of this occurred within a week's time as she felt it was urgent and requested feedback ASAP on the procedures.

The oncologist said there was a 30% chance it was a cancerous tumor. However, he also showed me where there were active cells so I was 99% sure it was cancerous. We went into surgery with saying that he would do a hysterectomy and if he thought it was cancerous, he would do a complete hysterectomy. That is what he did and it turned out to be the size of a cantaloupe and stage 1 ovarian cancer.

I did not need radiation or chemotherapy but did follow up for five years with a blood test to make sure it didn't come back. My only symptom was an urgent need to urinate. God was looking out for me.

Thoughts and prayers are with you.

If it's any consolation, I think you are following the right course starting with your PC. I am post menopausal. In the fall I started to have vaginal bleeding and went to my PC first. She did a very quick exam to confirm it and then referred me to the gyn.

I'm thinking of you tonight as you have the MRI. Hopefully they will get back to you tomorrow with the results.

Thinking of you tonight SueB! It's great that your doc got you right in for the MRI and hopefully you'll have an answer when you see the doc next week.

I had an abdominal hysterectomy about eight years ago because of fibroids and horrible periods. It was one of the best decisions I've ever made. I immediately felt better. I do have my ovaries, so I didn't have the instant menopause. I found a TON of support at Hystersisters.com. I forget exactly why I insisted on the abdominal surgery, but it was important to me at the time.

Beth

I had abnormal bleeding for over a month (almost 4 yrs ago). Vaginal ultrasound revealed a fibroid cyst. Dr did an ablation which was to help, but the test came back endometrial hyperplasia with complex atypical cells. My Dr called the GYN oncologist before calling me. There was no question in my mind I wanted it all out and that was what he suggested. Lymph nodes removed were clear. I haven't had any issues and don't take any meds.

There is no uterine or ovarian cancer in my family, although my mother had a partial (leaving one ovary) due to an ovarian cyst when I was very young. My sister was born with a wall in her uterus, had two surgeries to correct but never had or wanted children and later had a partial.

I'm glad you're having it looked at for all angles. You can never be too careful. I can't even count the number of friends or acquaintances that have gone through some sort of female cancers.

Sending positive thoughts your way.

Lp

Sue, with your family history, I would most certainly be proactive and at the very least get a second opinion and the most have a total hysterectomy if there's any chance of cancer from this.

dlm, I am so sorry for the loss of your nephew.

I have what was determined to be a complex cyst. For years my gyno had noticed a cyst on my left ovary during the physical exam and it frequently caused a bit of pain, particularly during my period but sometimes at other times. After an unspecific abnormal pap, I had a vaginal ultrasound (as well as some other testing to explain the pap -- just an odd anomoly). From the ultrasound it was determined to be a complex cyst and the gyno said nothing to worry about. As it was explained to me, "Complex" means that instead of just being fluid filled, the cyst also has some solid matter floating around in it. He also said that it is usually easily distinguishable from other, more serious, masses on the ultrasound. As I recall, he showed me the pictures from my ultrasound and explained the difference in appearance from a cancerous mass. That was about 10 years ago and it has not been a problem. I have also had issues with both simple and complex cysts in my breasts, which have improved since menopause. My last mammo ( and first post menopause) was the first in 15 years where the radiologist didn't want to follow up with an ultrasound to look closer at the cysts.

It's so stressful to wait for medical tests and results! I'm glad you posted so that even those of us without experience in the particular medical concerns you're experiencing can send along our empathy and good wishes. I'm also glad that your doc is getting things scheduled quickly. I'm sure you'll be glad to be done with the MRI and be able to get some more information shortly. Hang in there!

Marlene, this story is for you ;)

First I have blood drawn. Then, the IV for the dye. The guy tries 3 times in different veins and can't get it. Meanwhile, I'm sweating and heading toward a panic attack. (I hate needles.) Finally he says we'll try the MRI without the dye. So they put me in the machine for about 14 hours and pull me back out. I think, phew, that's over. Nope. The MRI lady says, we're gonna try that IV again. Waaah. This time she gets it and then they put me BACK in the tube for about 5 more hours. But, it's over and God help me if I have anything seriously wrong because I am no good with needles, blood, or hospitals in general.

PS I should have told them I was claustrophobic because then they would have given me Valium.

Nice of you to check in, SueB. Hope you don't have to wait too long to hear.

Sueb, I just went through this with my granddaughter, she's 28. She had a complex cyst and went through all the tests you're enduring. Long story short they did surgery as they found extensive endometriosis and she's doing well. She was terrified but was surprised that the surgery to clean her out was not as bad as she expected. I wish you the best of luck, you're hanging in and soon this will all be in the past

Reporting back with a clean bill of health! Mostly, at least.

NO abnormal mass on ovaries. Two small simple cysts.
NO fibroids at all.
One finding -- what looks like thickening of glands outside the uterine wall. Whatever that means, I am still seeing the GYN in two weeks to discuss.

Part of me feels like, well that was all for nothing. On the other hand, it's always good to get thoroughly checked out, isn't it?

Thanks for all the support and shared experiences, GW friends.

Oh thank goodness.

No, it was not all for nothing. Keep doing what you are doing. Be vigilant. Good girl.

Now, carry on about Pink Houses and Pub Crawls and such, please.

Sue! I am SO happy and relieved for you.

Now...a little lecture since everything is pretty much ok.

You really need to start seeing a GYN every year. End of lecture.

Re the MRI experience. Yep. Same issues with me. I won't go into detail because I don't want you to faint...but I can emphasize.

Have a fabulous weekend kiddo!

Wonderful news!!! What bothers me is the original ultrasound and who did it. I'm sure the GYN will answer all your questions. Maybe you could see that doc for future ultrasounds.

It's not all for nothing because hopefully you now have peace of mind. That is priceless!

I'm the same way with needles and they always have a hard time sticking me. I guess that's why they bother me so much! I don't have panic attacks but have (not in a long time) passes out. Usually if you tell them you are hard to stick, they will find someone who is good with people like you and me. I have learned the hard way that blood/iv done in top of my hand is better than many sticks in my arm. For some reason they can always get me there.

Here's to a worry free weekend!!

What a blessing Sue! I'm so happy for you.

Sue -so glad it worked out this way. When I read "part of me feels like it was all for nothing" comment I immediately thought of the time my husband, children and I all evacuated town for a hurricane that was forecasted to do serious damage. We flew to my mom's in NH. As we sat in her house and watched the news, I could see my husband shaking his head and mumbling, "Ugh, this was all for nothing, we should have just stayed put." So I said to him, "It doesn't have to be bad news you know. If our house blows down, then we have a bigggg problem. Right now, we just have a small problem of perhaps spending a little time and money we didn't have to (in hindsight)." He never mentioned it again.

What great news. I've been through a couple similar exercises with "lady-problems" and while I dislike the process, I'm grateful to hear "it was all for nothing". Men would never be able to endure what we have to.

Thank you for returning to update! I have been thinking of you.

I just want to echo Mtn-- it wasn't all for nothing. Keep doing what you are doing.

FWIW I also allow my GP to handle routine GYN maintenance and testing. I think that's fine until there's a need for a specialist. It makes sense for me for a lot of reasons-- I am sure it's the same for you. You are in an area with the best medical care in the country. I am sure you are with a dr you trust and respect... and the speed with which they responded to a concern is impressive.

So glad you are in good hands and that there are no concerns!!

So glad you got a good report. And it was not for nothing! You got peace of mind and can get a good night's sleep. And you have two whole weeks to figure out your questions to the GYN. Yes, it's good to get thoroughly checked out and I'm so thankful and happy for you.

Great news! And it's wonderful they got you in for testing so fast. It's always good to get thoroughly checked....then no wondering. Enjoy the weekend!

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This post was edited by joaniepoanie on Fri, Jan 9, 15 at 17:36

Thank you, everyone!

Too late to say anything except - Yay!!

That's great news! I'd ask what the thickening walls meant. I'm glad it wasn't fibroids or cancer! It wasn't all for nothing. At least you have peace of mind. Sorry you got needled so much. I can't stand them either.

Yay Sue! Yay Sue!

Oh, that is good news! So glad to hear it.