Aa
So frustrated
I have had female problems for all my life, really unregular periods. Went through a spell about three months ago where I had a super heavy period (think a tampon an hour). I got pretty scared and went to the doctor. I have now had blood work (everything is normal), a vaginal ultrasound where they found out I had half a uterus and a tiny polyp. Dr wanted to do a biopsy just in case so we did, though I was literally screaming in pain so only got one small sample. It was normal. He had put me on provera and I'm still spottong. He increased the does and I'm still spotting. Perhaps the most frustrating is I will go one or two days without any spotting and my fiancé and I will start to have sex (think foreplay with no touching) and I'll start bleeding. I'm so incredibly frustrated. Any one have any suggestions or know what this might be?
COMMUNITY LEADER
Missjournalist, please be aware that AnnieBrooke is trying to help you. She has a lot of knowledge and has been patiently trying to uncover some avenues for you to look into or consider. If your doctor thinks you have PCOS, are you going to begin being treated for it? My mom had non stop bleeding and troubling periods because of a lack of progesterone. You have had that checked and not the case for you? Are they sure you don't have an ovarian cyst? Your symptoms are actually those of an ovarian cyst as well. That was my first guess. When I had one, I had similar issues and when I finally passed it, it was the worst period of my life and very painful. Since they are suspecting pcos, what is your next step in diagnosing that for sure?
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They have started me on provera to start treating the symptoms. Have been on them almost three months and while I haven't had any super heavy bleeding again (other than my actual period) I'm bleeding evrry day a little. It's annoying. As far as PCOS, that's what they've diagnosed me with cause it's the only thing that fits. My ovaries look fine.
The provera does seem to be doing something. So, modifying that dose may ultimately be the answer to get rid of break through bleeding.
Just thought I'd update. They motified my dose (three times a day for 7 days) then 28 days with 1 pill, then 7 days no pill for my period. So far it's working and I had the easiest period of ny life last month ... not excruciating pain. So ... I think we solved it!
COMMUNITY LEADER
If you really have a uterus that is malformed (that's a big if), it could cause you problems with your period. But so could other things. Can you get insurance? I'd try to make it a priority, even if it means searching for a different job that offers health insurance as a benefit. You need a clear diagnosis.
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I mean since I've had problems with my period since age 12 when I started, the malformed uterus makes sense. It was also seen clear as day on my ultrasound. Changing jobs is not an option.
An ultrasound doesn't show the exterior shape of the uterus. It's possible that the malformation is on the inside, or that your uterine lining has built up on one side and makes it look like you only have half, when the exterior is all there. That's why I suggested an MRI, it shows all the tissue and muscle. If your problem is that the endometrium is scarred or built up unusually, that can be solved by an operation, sometimes just a D&C.
So did the MRI. Still have half a uterus. Doctor can't fugure out any reason I'm still bleeding daily other than potential hormone issues. Now on meds three times a day.
There's no chance your mom was on DES to prevent miscarriage when she was pregnant with you, right? What does the doctor say about your having half a uterus? And what does it mean exactly, just one that is half the size of a regular uterus?
https://www.betterhealth.vic.gov.au/health/conditionsandtreatments/des-daughters#how-to-find-out-if-you-were-exposed-to-des
So here is what officially I have:
congenital anomaly consistent with either are arcuate uterus versus a bicorn uterus. Essentially from birth I'm missing part of my uterus. I was a complete accident so definitely no chance of miscarriage medicine.
congenital anomaly consistent with either are arcuate uterus versus a bicorn uterus. Essentially from birth I'm missing part of my uterus. I was a complete accident so definitely no chance of miscarriage medicine.
And probably you're too young to be in the risk zone for DES daughters also. There's some question whether DES sons and daughters can themselves pass on genital anomalies, but most researchers don't think so, so you would not have to wonder about grandma.
Well, so, what does the doctor say about arcuate versus bicornuate uterus? Has anyone given you an assessment of that finding and what it might mean for your periods?
Well, so, what does the doctor say about arcuate versus bicornuate uterus? Has anyone given you an assessment of that finding and what it might mean for your periods?
Here's what the Cleveland Clinic says about arcuate uterus. It says that an arcuate uterus is one with kind of a dent in the top, not half of it missing, and that though it's a rare shape it isn't problematic and shouldn't interfere with periods. (I don't know where you got the language about the uterus being half gone, but if it was your doctor, I'd be thinking about going to a different doc.)
https://my.clevelandclinic.org/health/diseases/22811-arcuate-uterus
The question is then thrown back to: what's happening with your periods? It might have nothing to do with the shape of your uterus.
https://my.clevelandclinic.org/health/diseases/22811-arcuate-uterus
The question is then thrown back to: what's happening with your periods? It might have nothing to do with the shape of your uterus.
Ok I thought this might be a helpful forum but it's absolutely not. If I knew what was going on I wouldn't be here.
What I was saying is, if an MRI has said you have an arcuate uterus, that rules out your uterus shape as what is making your periods wonky, which is useful because you now have one possibility ruled out. But that unfortunately since that doesn't explain the spotting throughout the month, you have to go back to the doc and ask what else could it be.
This is a patient-to-patient forum, where people with similar issues try to guide people to what kinds of questions to ask their doctor or what kind of approach to take to the medical system that would give them some answers. Since the MRI rules out the "half a uterus" theory, nobody has to go down that rabbit hole, but you haven't yet been given a diagnosis that is working and it's your doctor's job to take the data and do decent diagnosis. If yours isn't solving your problem, he or she is failing at that job, and it's time to rattle the cage bars to get the doctor to give you a useful diagnosis. (Or to get a new doctor, maybe an endocrinologist.)
Even back in the days when people would pay a fee on this site and get a doctor's advice, the doctors would always make it a point to say you aren't going to get a certain diagnosis on the Internet. You're need better help than you have been getting, and I would say your doctor should be taking this as a serious challenge.
Sorry you think the site is unhelpful.
This is a patient-to-patient forum, where people with similar issues try to guide people to what kinds of questions to ask their doctor or what kind of approach to take to the medical system that would give them some answers. Since the MRI rules out the "half a uterus" theory, nobody has to go down that rabbit hole, but you haven't yet been given a diagnosis that is working and it's your doctor's job to take the data and do decent diagnosis. If yours isn't solving your problem, he or she is failing at that job, and it's time to rattle the cage bars to get the doctor to give you a useful diagnosis. (Or to get a new doctor, maybe an endocrinologist.)
Even back in the days when people would pay a fee on this site and get a doctor's advice, the doctors would always make it a point to say you aren't going to get a certain diagnosis on the Internet. You're need better help than you have been getting, and I would say your doctor should be taking this as a serious challenge.
Sorry you think the site is unhelpful.
I feel like I'm being lectured at instead of helped.
COMMUNITY LEADER
In your shoes I would request an abdominal MRI, not just an ultrasound. You need a better idea of what is going on with your uterus. If the MRI suggests tissue samples, one small sample is not enough, I'd request whatever it takes (including sedation) to get what they need. But it sounds, from your description of having "half a uterus," like you need further clarity on the state of your uterus, and for that an MRI is called for.
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I also have no insurance so paying for it out of pocket. I honestly am beginning to think it's not my uterus at all. Maybe ovaries?
Did the doctor run hormone tests?
Yes. All were within normal ranges. But he still thinks I have PCOS based on other symptoms.
AnnieBrooke ... sorry if I was hateful to you, just frustrated.
As far as a better doctor is concerned, mine is the head of ob/gyn surgery here and came highly recommended. I do like him quite a bit ... once again, just frustrated.
I'm on provera and he just upped the dose to three times a day, for seven days, then one pill a day for the next 14. So far I'm still spotting but I'm not hurting as bad.
I'm getting married in Oct so will be able to hopefully get insurance then and begin discussions about a hysterectomy. I'm just done.
Anyway wanted to say thank you for your feedback and sorry I was a grump.
As far as a better doctor is concerned, mine is the head of ob/gyn surgery here and came highly recommended. I do like him quite a bit ... once again, just frustrated.
I'm on provera and he just upped the dose to three times a day, for seven days, then one pill a day for the next 14. So far I'm still spotting but I'm not hurting as bad.
I'm getting married in Oct so will be able to hopefully get insurance then and begin discussions about a hysterectomy. I'm just done.
Anyway wanted to say thank you for your feedback and sorry I was a grump.
OK, here is what I would do in your shoes. I don't know your age, or your wishes to have children or not, or why you've determined a hysterectomy is the best answer, so this advice might not be helpful. I remain unoffended if you respond in a grumpy manner, and am sorry if it wastes your time.
In your shoes I would have a consult with an ob/gyn who is not primarily a surgeon -- yours may be the world's best surgeon, but that doesn't mean he knows everything about what is happening to give you bleeding, or that he is expert in conditions that don't have a surgical remedy. (You know the saying, "If someone has a hammer, everything looks like a nail." He specializes in surgical remedies to problems.) It seems you would benefit from talking to a specialist in PCOS or an endocrinologist, to be certain on that diagnosis. Part of why I think this is because you say your hormone results are all normal. If you had PCOS, I think your androgen levels would *not* be normal. That they are normal opens the question of whether it's really PCOS.
In your shoes, I would also talk to someone knowledgeable about uterine MRI results. My MRI's were done by a really tremendous doctor who taught gynecologic MRI assessment at the medical school, and she told me a lot about the unusual shape of my uterus and what it meant. (I have a bicornuate uterus and she was entirely unconcerned about my plans to get pregnant. And, in fact, I carried a baby to full term with no problem. My ob/gyn kept nervously suggesting I not get pregnant, and when I was pregnant he kept suggesting I get induced. Once they see "bicornuate" in the record, a lot of ob/gyns trot out old and unreliable research that suggests miscarriage is more frequent. But this research was done on a weak database. My ob/gyn was a high-risk doc, but he didn't know that, and he sure didn't want his patient to be reading the research and correcting his assumptions. So he kept wanting to go with what he knew, or thought he knew. I was awfully glad I had had the MRI and talked to the specialist, I could remain unbothered by Dr. Chicken Little who thought he knew more than he did.) My point is, if you do want to have kids and have written it off as impossible because of the idea that you have a "half a uterus," that is worth further exploration if an MRI has revealed your uterus is merely arcuate. Because apparently an arcuate uterus is not problematic for childbearing.
If you *don't* want to have kids, a hysterectomy is certainly one answer to constant and unexplained bleeding. After the uterus is out, they might also find something that made it clear it was the right idea to have the hysterectomy. But before doing such a big surgery, I would sure get some decent biopsies (even if you have to be knocked out) and also some serial blood tests for hormone levels (to track how they go up and down, again to check the PCOS idea). At this point, the actions you are moving towards aren't entirely supported by the information you have, frustrating though the bleeding is.
If you will get health insurance once you're married, I would put all of this out as something to assess and decide about once you have the insurance. You want to be able to go to the specialists to whom the evidence leads.
If this advice is useless because some of the facts of your case don't match what I am assuming, just let it go by. Good luck to you.
In your shoes I would have a consult with an ob/gyn who is not primarily a surgeon -- yours may be the world's best surgeon, but that doesn't mean he knows everything about what is happening to give you bleeding, or that he is expert in conditions that don't have a surgical remedy. (You know the saying, "If someone has a hammer, everything looks like a nail." He specializes in surgical remedies to problems.) It seems you would benefit from talking to a specialist in PCOS or an endocrinologist, to be certain on that diagnosis. Part of why I think this is because you say your hormone results are all normal. If you had PCOS, I think your androgen levels would *not* be normal. That they are normal opens the question of whether it's really PCOS.
In your shoes, I would also talk to someone knowledgeable about uterine MRI results. My MRI's were done by a really tremendous doctor who taught gynecologic MRI assessment at the medical school, and she told me a lot about the unusual shape of my uterus and what it meant. (I have a bicornuate uterus and she was entirely unconcerned about my plans to get pregnant. And, in fact, I carried a baby to full term with no problem. My ob/gyn kept nervously suggesting I not get pregnant, and when I was pregnant he kept suggesting I get induced. Once they see "bicornuate" in the record, a lot of ob/gyns trot out old and unreliable research that suggests miscarriage is more frequent. But this research was done on a weak database. My ob/gyn was a high-risk doc, but he didn't know that, and he sure didn't want his patient to be reading the research and correcting his assumptions. So he kept wanting to go with what he knew, or thought he knew. I was awfully glad I had had the MRI and talked to the specialist, I could remain unbothered by Dr. Chicken Little who thought he knew more than he did.) My point is, if you do want to have kids and have written it off as impossible because of the idea that you have a "half a uterus," that is worth further exploration if an MRI has revealed your uterus is merely arcuate. Because apparently an arcuate uterus is not problematic for childbearing.
If you *don't* want to have kids, a hysterectomy is certainly one answer to constant and unexplained bleeding. After the uterus is out, they might also find something that made it clear it was the right idea to have the hysterectomy. But before doing such a big surgery, I would sure get some decent biopsies (even if you have to be knocked out) and also some serial blood tests for hormone levels (to track how they go up and down, again to check the PCOS idea). At this point, the actions you are moving towards aren't entirely supported by the information you have, frustrating though the bleeding is.
If you will get health insurance once you're married, I would put all of this out as something to assess and decide about once you have the insurance. You want to be able to go to the specialists to whom the evidence leads.
If this advice is useless because some of the facts of your case don't match what I am assuming, just let it go by. Good luck to you.
Thank you for the advice. I am 41 and have never wanted kids. My fiance and I both have extremely taxing jobs (we are newspaper editors) and having kids isn't really feasible.
My doctor did tell my my uterus shape could be one reason I've never gotten pregnant but not the only reason. I'm in rural Texas so I think I probably have the best doc I can hope for.
Depending on insurance (though that in itself is a joke in the U.S. not sure where you are) I may see about further tests. So far the medication seems to be slowing down my incessant bleeding.
Thank you again!
My doctor did tell my my uterus shape could be one reason I've never gotten pregnant but not the only reason. I'm in rural Texas so I think I probably have the best doc I can hope for.
Depending on insurance (though that in itself is a joke in the U.S. not sure where you are) I may see about further tests. So far the medication seems to be slowing down my incessant bleeding.
Thank you again!
When you do talk with your doctor again, you might just ask (tactfully) what makes your diagnosis PCOS if your hormone tests are all normal. (And, were your hormone tests done from a one-time blood draw or was it several over a longer period of time?) If he doesn't take umbrage and think you're being a pushy patient, you might also ask for a quick rundown of the reasons why other possibilities seem to be ruled out -- a fibroid or fibroids, a benign mass like a teratoma, a uterine cyst, Asherman syndrome. The answer might be that some of these would appear on an ultrasound, but Asherman's (for example) doesn't, though I think it might show up in MRIs.
Anyway, best of luck. Since you don't want children and your situation now is so uncomfortable, a hysterectomy is not the worst option.
Anyway, best of luck. Since you don't want children and your situation now is so uncomfortable, a hysterectomy is not the worst option.
Thanks! Will definitely wrote those down to discuss with him. My hormore tests were done twice over a two month period. Same results other than my white cell count which was elevated just slightly the first time (was getting over strep) and not at all the second go around.
Here's from another site about PCOS.
https://perlahealth.com/pcos-hormones/
Though they say it's possible for someone who has PCOS to have hormones test "within normal ranges," it sounds much more common for several of the hormones not to come in at normal ranges. So for sure ask the doctor why this was the diagnosis.
Good luck, and congratulations on your upcoming marriage.
https://perlahealth.com/pcos-hormones/
Though they say it's possible for someone who has PCOS to have hormones test "within normal ranges," it sounds much more common for several of the hormones not to come in at normal ranges. So for sure ask the doctor why this was the diagnosis.
Good luck, and congratulations on your upcoming marriage.
Thank you so much and will do.
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