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unsure what to ask for

CaraS
Posts: 7
Joined: Nov 2012

Hi, I haven't been diagnosed with anything but my symptoms are causing pain and problems and my ob/gyn has been difficult to get information from. Any advice about what to ask him for specifically, what tests I might need to push for, etc., would be SO helpful and appreciated.

Here's what's going on. I'm only 26, mother of two little ones (ages 3 & 4) and this past 18 months I have had two miscarriages, with unknown causes. My BMI is right in the middle of the normal range. Here are my symptoms:

-About three months ago I began having strange bleeding between periods (watery, pinkish tinge, sometimes watery with bright red blood streaks). Once the gush of fluid was so heavy it ran down one side of my leg and soaked through my jeans instantly.
-My periods have never been regular but over the past year, the irregularity increased from anywhere to 7 days between periods to 30+ days.
-I began having pain during sex (surprising, as in I'll get a sharp pain from out of nowhere in my lower abdomen), to the point where my husband is nervous about how to avoid hurting me.
- I have always been prone to frequent yeast infections.
-I have pressure and pain in my lower abdomen to where sometimes just bending over too quickly to pick something up off the floor gives me a sharp pain where my uterus should be.
- My uterus is enlarged (doctor confirmed on exam)
- I recently began having mood swings to the point where I feel instantly irritated or angry (with NO trigger whatsoever), and I can say to myself during them "there is NOTHING causing this, I was having so much fun a second ago, why am I so irrational all of a sudden?) which makes me think I might have a hormone imbalance.

My ob/gyn is new to me (I got new insurance, so I had to switch from my old doctor who I loved but am no longer covered under). I went in and he said he felt my uterus was enlarged and prescribed antibiotics in case an infection was the cause. I finished them and my uterus feels larger and more painful. He ordered a sonogram because he suspected fibroids, and the ultrasound tech did the external ultrasound, said "I got all I needed, we don't even need to do the internal ultrasound", and left. I was supposed to get results the day after, 9 days later after some very persistent phone calls, my husband finally got them to call me with results. All they said is that my sonogram was "normal".

I made another appointment because I'm in pain and my uterus FEELS big, even to me, like it feels when I was 10-12 weeks pregnant. I'd like to switch doctors, but until I can find someone else I'm covered by, I have to go back and see this guy.

I hate to be a pest, but I feel like my symptoms are serious enough to take another look at. I don't know what to ask for, or where to go from here. He didn't order any blood work or other tests. I came here because online I saw that endometrial cancer fit my symptoms better than most other things, and there is a discussion forum here where I might be able to learn from the wisdom and experience of other ladies.

If anybody has advice on what I should ask my doctor specifically, or what I should do next, I would be so grateful to hear it. Thank you so much for your time!

txtrisha55's picture
txtrisha55
Posts: 423
Joined: Apr 2011

This is what makes me mad. Drs who do not listen to women when they tell them something is wrong just because you are young. The drs also do not listen to older women either. Things go wrong for all females of all ages and the drs need to realize it. I am twice your age so I cannot tell you what to ask for. But if they did not do an internal ultrasound, I would ask for a ct scan, biopsy of the uterus, could also ask for a CA125 bloos test (this test is sometimes not a good marker but is used for Ovarian Cancer screening). Another option is to ask for a D&C with hystoscopy and send the samples to get tested. With the hystoscopy they insert a tube with a camera inside the uterus. I do not know where you are (location wise) but you could always try a teaching university hospital. That is were my obgyn dr is and she did my D&C and found cancer from it. It was an easy referral to the cancer center at the hospital. Sounds like something is going on but it may not be cancer so do not get yourself freaked out yet. You are your own advocate and know your body better than anyone else. Keep pushing the dr to do something or call the insurance company to ask for another dr in network for a second opinion. Tell the insurance company what is going on and tell them you need another dr. I have Aentna and they have been great working with me on my cancer and treatment. I will be praying for you. If you are in the area of Dallas, Texas I can give you my obgyn name and maybe she takes your insurance. Hopefully others will reply so you can get some additional feed back. trisha in dallas.

CaraS
Posts: 7
Joined: Nov 2012

Thanks for your reply, Trisha. I'm trying not to get too worried but I definitely feel something is wrong, and with the doctor confirming my uterus IS enlarged after all my symptoms indicated to me something is wrong, I just really want to find out why. I don't want to let it go under the idea of "it's probably no big deal" only to find out after it's too late that I had something that needed attention.

My mother died because of a doctor insisting that what she thought was wrong with her was really fine and she had nothing to be worried about. It wasn't cancer that killed her, but a few months later she had a major organ that was so badly infected she needed an urgent transplant that her body never accepted. I usually prefer to avoid doctors if I can, and see if things clear up on their own like in the case of flu symptoms or sore throats, but right now I just really think this isn't going to resolve itself. And my kids are LITTLE... I want to be around for them and I owe it to them to be sure, or as sure as possible, that this is nothing serious.

I read that a transvaginal ultrasound is used to better see if something is wrong that wasn't seen on the external ultrasound. If that's true, does it make sense to you that the ultrasound tech said she "saw all she needed to see" on the external one and declined to perform the transvaginal ultrasound? My sonogram came back "normal", so if the external looked normal, shouldn't she have done something internally to better check? Or am I just confused about how that whole thing goes? I feel like the internal ultrasound would have been a reasonable thing to do considering I was already there and nothing was found externally.

I'm going to ask my doctor at my next appointment (on the 19th), it's the soonest I could get in even though I had three days a week I was available at any time for an appointment. I feel like the office is too busy if they can't fit me in over a period of 3 weeks, 15 office days, 9 of which I was entirely available. I don't mean to be fussy but this office just seems so much less helpful and interested than my old ob/gyn was. Maybe I'm being too impatient and this is normal and I'm just used to a really great office?

I also feel frustrated having to push for ideas of what we can do next, and pushing for appointments instead of the doctor himself wanting to follow up for what the cause of my symptoms and enlarged uterus is. I don't know what I'm doing... I'm not a doctor or scientist. That's why I came here, because I figured the women on this forum have experience with similar symptoms and tests that I'm dealing with now.

I'm in San Diego, CA, and I think when I go back in I'll ask what he recommends and then specifically ask him about your suggestions for tests.

CaraS
Posts: 7
Joined: Nov 2012

Thanks for your reply, Trisha. I'm trying not to get too worried but I definitely feel something is wrong, and with the doctor confirming my uterus IS enlarged after all my symptoms indicated to me something is wrong, I just really want to find out why. I don't want to let it go under the idea of "it's probably no big deal" only to find out after it's too late that I had something that needed attention.

My mother died because of a doctor insisting that what she thought was wrong with her was really fine and she had nothing to be worried about. It wasn't cancer that killed her, but a few months later she had a major organ that was so badly infected she needed an urgent transplant that her body never accepted. I usually prefer to avoid doctors if I can, and see if things clear up on their own like in the case of flu symptoms or sore throats, but right now I just really think this isn't going to resolve itself. And my kids are LITTLE... I want to be around for them and I owe it to them to be sure, or as sure as possible, that this is nothing serious.

I read that a transvaginal ultrasound is used to better see if something is wrong that wasn't seen on the external ultrasound. If that's true, does it make sense to you that the ultrasound tech said she "saw all she needed to see" on the external one and declined to perform the transvaginal ultrasound? My sonogram came back "normal", so if the external looked normal, shouldn't she have done something internally to better check? Or am I just confused about how that whole thing goes? I feel like the internal ultrasound would have been a reasonable thing to do considering I was already there and nothing was found externally.

I'm going to ask my doctor at my next appointment (on the 19th), it's the soonest I could get in even though I had three days a week I was available at any time for an appointment. I feel like the office is too busy if they can't fit me in over a period of 3 weeks, 15 office days, 9 of which I was entirely available. I don't mean to be fussy but this office just seems so much less helpful and interested than my old ob/gyn was. Maybe I'm being too impatient and this is normal and I'm just used to a really great office?

I also feel frustrated having to push for ideas of what we can do next, and pushing for appointments instead of the doctor himself wanting to follow up for what the cause of my symptoms and enlarged uterus is. I don't know what I'm doing... I'm not a doctor or scientist. That's why I came here, because I figured the women on this forum have experience with similar symptoms and tests that I'm dealing with now.

I'm in San Diego, CA, and I think when I go back in I'll ask what he recommends and then specifically ask him about your suggestions for tests.

lkchapman's picture
lkchapman
Posts: 103
Joined: Jan 2011

Hi Cara,
If your doctor ordered a trans-vaginal ultrasound then the tech should have done one. It isn't up to the US tech to decide whether or not you need one. I would definitely push for it and an endometrial bx. The biopsy can be done in your dr's office. All they do is insert a thin pipelle into your uterus and sample your endometrial lining. It's a very quick procedure.
Keep pushing for what you need. I had an abnormal pap smear 6 months before I was diagnosed with cancer and my gyno never told me. I finally begged her to do a biopsy because I needed answers. Hang in there!

Laura

ConnieSW's picture
ConnieSW
Posts: 545
Joined: Jun 2012

I agree with Trish and Laura. I don't want to worry you, but the symptom that took me to my gyn was a watery, sometimes pink tinged discharge. She did not believe I had cancer. Luckily for me, she did my pap smear early and it picked up some abnormal cells that had drifted down from my uterus. My diagnosis-UPSC Stage 1a. You must get them to listen to you. Please get back to us and good luck.

Connie

Double Whammy's picture
Double Whammy
Posts: 2268
Joined: Jun 2010

My 39-year-old daughter had similar symptoms. She had an endometrial biopsy (clear), transvaginal ultrasound (also ok), CT scan, tests for urinary infections, cultures and analysis of discharge, as well as blood work to rule out potential uterine infections. I would think you should have the same. Your symptoms are not going away and something is causing them. In my daughter's case, all tests were normal. She was done having children, so they did a uterine ablation. All of that tissue was looked at and it was normal. The ablation only made things worse for her in terms of her pain/cramping. She ended up having a hysterectomy. She had no pathological findings - again everything was normal. She is, however, now pain free and a very happy young woman. While her symptoms did not reveal any detectable disease process, they did lots of tests and she did not have to beg for them, but she kept going back with complaints (she was in tears a lot because of the amount of pain she was having) until she got satisfaction (in her case, it was the hysterectomy unfortunately).

Keep your appointment and keep insisting that something is wrong. While some of your symptoms are consistent with endometrial cancer, it does not mean you have it, but you do need to get to the bottom of this because your symptoms are not going away. I think that's the most pressing argument - you're still having symptoms and they're getting worse. There are a lot of reasons for this pain that are not cancer - endometriosis for example.

Best of luck.
Suzanne

CaraS
Posts: 7
Joined: Nov 2012

Thanks for your post, Suzanne. That must have been terribly frustrating for your daughter, having so many things come back normal when she was clearly in pain. I've only had one "normal" result while feeling so definitely abnormal, and it was frustrating to hear, just because I want to get some sort of diagnosis so I can treat it and move on. I'm hoping it will be something mild to treat, but I sometimes think the not knowing, and having things come back normal, is even more stressful than the symptoms themselves. I wondered about endometriosis, too, even though my periods are not particularly painful or heavy, I have enough going on outside of that that I'd like to rule it out.

CaraS
Posts: 7
Joined: Nov 2012

Thanks for your advice, Connie. The watery, bloody discharge is what is worrying me most, even more than my larger than normal uterus size. It's what really made me decide "I need to have all of these symptoms looked at". It was easy to kind of brush aside symptoms of tenderness and moodiness, or say that lots of women are irregular. The sudden gushes of watery fluid, though, was something I couldn't attribute to anything else and seemed very wrong. When it happens, I can't control it or stop it, it just pours out an then is done. Once it happened right when I was walking up my driveway after grocery shopping and immediately soaked through my jeans (SO relieved it waited until I was out of the produce aisle in a crowded store with two preschoolers, but still alarming!). I don't want a diagnosis of what's wrong with me to take a year or so of back and forth to the exam room, scheduling more appointments, waiting and calling, waiting and calling, but more and more I read that's what I'm finding out. That some women had to deal with a year of twisting people's arms to get them to take it seriously.

CaraS
Posts: 7
Joined: Nov 2012

Thanks for the help, Laura!

The plan was to do both the external sonogram and the trans vaginal ultrasound, and it was the uT tech that made the decision not to continue after the external. My doctor wasn't there and she didn't ask him about it. I should have spoken up and asked a LOT more questions. I don't know why I lock up in the doctor's office and just go along with what they say, I really need to start being more assertive. I felt dumb on the car ride home when I started thinking, "I really should have asked about ____. And I probably should have said _____."

That's awful that your gyno never told you about your abnormal pap smear and you had to beg for your biopsy. I feel like I'm going to be going down that same road of having to push for my care. I'm going to ask for an endometrial biopsy and for them to do the trans vaginal ultrasound that was originally ordered. Those sound like reasonable procedures and pretty simple to get done. I also realized they never gave me the results of my pap smear (I assumed it was normal since nobody brought it up when they gave my sonogram results) and I'm waiting on a call back about it. Your post was really helpful, thank you so much.

TAyers's picture
TAyers
Posts: 41
Joined: Aug 2012

Push and be an advocate, it may be nothing in your case, but I had similar symptoms to you. The watery discharge and bloating feeling. Not to much pain with intercourse, spotting, do you have a foul odor at all? They did a d&c and found I had UPSC, Grade 3 stage 3c. Get yourself on a cancellation list if you can. Will be praying for you. Tami

Catmalogen
Posts: 19
Joined: Jul 2012

Suggest that you discuss with your doctor your fears. You must not be scared and remember you may have only a benign issue. If you forget stuff when you are in doctors office, a tip is to have all your questions written down. You need to get a definitive diagnosis and I think the best way to get that is hysteroscopy and bioposies of your endometrium tissue. They may well do a D+C also. But a look inside uterus and tissue samples should be taken along with swabs. So put the boot in or get another opnion.. Best of luck with all.

Teamkelly's picture
Teamkelly
Posts: 51
Joined: Sep 2012

I am self -pay ( no insurance) all doctors give you a discount and let you make payments if you need to, I would call my old doctor an go in for a consultation, at that time, I would take a list of the doctors with my new insurance and ask him to help pick one that will listen to you. When you call to make the apptmt, inform them that you are now self pay, do not say my insurance does not cover you, just I am now self pay. You need to have peace of mind and what is the cost of that? Not calling you for 9 days is unbelievable, do not stay with this doctor, find another one on your list, he is too busy to give good care, this is probably the future for all of us unfortunately.

CaraS
Posts: 7
Joined: Nov 2012

I saw my doctor again and he was hugely unhelpful. He said my sonogram looked great and he really didn't think the problem was even related to his area of practice (ob/gyn). I'm unsure how lower pelvic pain, pain during intercourse, unexpected gushes of watery discharge, periods coming two weeks together, etc. AREN'T related to gynocology, but that's what he said. He told me to come back in two months if the symptoms were the same and he'd send me for a colonoscopy. WHAT?! So I argued, feeling so alone and frustrated (my husband had to work, it was during the work week and no friends could come with me during the day, we have no family living in our state), and he suggested I start birth control pills because he said "maybe replacing your hormones with their hormones will help regulate things". He disagreed to do further testing and told me I'm young and he doesn't think I have anything to worry about and to give it time on the pills.

I am hoping to see a new doctor outside of this practice within a few weeks (with the holidays coming up I'm sure it will take awhile). Here is my question, though... I'm wondering if anyone on here has ever done this. Every morning I wake up and the pain and pressure in my abdomen is at it's heaviest. It's bearable, but definitely uncomfortable. It eases as I move around more, but the pain is still present, even mildly, all day long. Would it be a good idea to go into an urgent care or ER (our urgent care and ER are at the same hospital but in different departments right next to each other) and explain my history of problems, tell them I am scared and in continual pain and that I'd like them to run a full list of tests right there, whatever they can do at the same time? I know ERs are for more pressing emergencies instead of something that can be scheduled, but at this point I know something is wrong, I know it's getting worse, and I have two preschoolers to think about. It's been months already since this started. I'm afraid if schedule an appointment, then wait for results, then schedule something else, then wait, then schedule again, then wait, maybe I'll pass a point that I can't come back from. That's my worst fear, even though this could be something so simple like maybe cysts on an ovary or something, I just fear that I'm going to take too long and my kids will lose their mom so young they will hardly be able to remember me. I'd feel silly going into an urgent care for this when that's what ob/gyn is for, but has anyone ever gone that route?

debrajo's picture
debrajo
Posts: 732
Joined: Sep 2011

If I were you I would run, not walk to whatever medical facility you can get to...NOW! Act worse that you feel, lie to them,pretend to feel faint, then REFUSE to leave. Tell them you want to be admitted NOW. Your body is desperately trying to tell you something. They CANNOT turn you away...it's against the law especialy if you tell them you feel like you're dying! Mention lawyers and law suite if they try to turn you away.
Yes, it may be nothing, but wouldn't you rather feel silly than let it go til it kills you? I know it sounds drastic, but you are up at 1:45 stressing. Do it now, go in an ambulance if you can afford it...ambulance people usually get seen quicker. Just my opinion. Best, debrajo

Hybridspirits's picture
Hybridspirits
Posts: 144
Joined: Nov 2012

reading through all this and reflecting on my most recent experiences I would agree with everyone. Nobody is going to advocate for our needs, we need to stand up and get what is best While we would like to believe that it is the contrary it isn't. You are the most important person to yourself and you deserve to have the necessary care. Speak up as the ladies have suggested and my thoughts are with you.

txtrisha55's picture
txtrisha55
Posts: 423
Joined: Apr 2011

Call your insurance company and ask for a second dr that is within your network. You can also do like debra said and go to the emergency room. Once you go there you tell them you think you are dying and tell them you are having female problems and maybe get them to run the type of test of ovarian & uterine cancer. CT & PET scan, blood work, etc. Hopefully you can get a second opinion or to the hospital soon. Do not wait or put this off. It has been going on to long now. For the doctor not do anything, is unbelievable. This is the type of Dr that my gyn/onc dr hates and she is a professor at the university hospital that I go to. Praying for you to get the help you need fast. trish

beila
Posts: 97
Joined: Sep 2012

Hi Cara

As an MD who has worked ER in USA for 15 years, (am now back in my native Canada) I am going to give you the same advice as I gave "Darkenend"
If the system is not working for you, you need to play the system

1st of all, that ultrasound tech should be reported to the chief of radiology.....send a letter....hospitals take letters of complaint very seriously
That is malpractice not performing the test ordered by the MD

Then I recommend you go to the ER of you local County Hospital
Doctors take WORSENING ABDOMINAL PAIN seriously, and should order a transvaginal ultrasound right then and there in the ER.
You must exaggerate your symptoms, double over in pain, etc

If normal, ask for a GYN referral, biopsy or D&C

Best of luck,
Beila

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