It has been some time since i last posted a message here and asked for help.
A few months ago I was having problems with bleeding after intercourse among some other problems.
I guess my problems with drs and testing started when my family dr. found blood in my urine and sent me to a urologist who sent me for a cat scan of my pelvic and adomen. the cat scan showed that i had a kidney stone and it also showed a cyst on my right ovary 2.5 cm in size. the cat scan also showed a diffuse fatty infiltration of the liver.
After the cat scan the urologist went up into the bladder with a scope and determined that the bladder was fine and said the blood in urine is probable from the kidney stone.
I then went home and found that now i am bleeding after intercourse.. Was not a lot but still enough to scare me.. I had this happen before and was told by my gyn that i had cervical dysplasia. About 10 years ago he did a cone biopsy and later because i bled again.. he did a colposcopy. Also did the HPV test on me as I also had HPV Virus. The HPV test came back negative at that time.
NOw after finding i had a cyst on my ovary, bleeding again after intercourse I went back to him. He had me wait 6 weeksn and go for transvaginal ultrasound. the report shows the measurements of my ovaries and uterus. It stated there was no uterine or adnexal masses seen and no free pelvic fluid identified. It did say there is a hypoechoic fibroid in the posterior body of the uterus measuring 1.6x1.4x2.6 cm. What really worried me was that it aslo stated the right ovary is not well visualized transvaginally.
I remember when she inserted the probe for the internal ultrasound it really really hurt and I dont ever remember that happening on previous ultrasounds i had several years ago.
I called my GYN to find out what all this means and he said he did not see anything that would cause the symptoms i was having...(cramping, bloating etc.) I asked him about the bleeding after intercourse and he said he did a biopsy the last time i was in and found nothing to warrant the bleeding. Oh yes he also had me go for the CA125 test which came back 9.7 which he said is a low #. He then told me there are many feet of intestines down there and maybe i should go to a gastrointernoligist. Well i can my gastro Dr. and was told i wasnt due for a colonoscopy until dec 09.
Now we are up to today!! Last night I had the scare of my life... Before even having intercourse.. (this is embarrasing to say) while having foreplay.... I bled like a pig.. i mean it was like hemmorging. It scared both me and my partner as well as it was extremely embarrasing for me. the bleeding stopped as fast as it came on though.. I have NEVER bled this much after intercourse and this time it didnt even get to that point.. there was NO penetration.
Now I dont know what to do.
Do i go back to my GYN yet again as I am now due for another paps and mammo or do i now contact a GYN Oncologist?
I have been with my gyn for over 20 years and have always felt comfortable with him but now i am afraid he dropped the ball on this..
Is it possible to have all these tests i had and have none of them pick up cancer?
I thought the cat scan and ultrasound would have picked up cancer if i have it. Also the CA125 test .wouldnt that have picked up ovarian cancer?
Does the heavy bleeding mean that now i have invasive cancer??
This was the first time in a month that i had intercourse.. and the only time I know i have a problem is when i do. Now i am afraid since I havent had it and the last time i bled after intercourse was months ago.. and now the bleeding is worse.. i am afraid it has gone too long..
By the way, several times I asked my Dr. Why don't I just have a hysterectomy and he told me they cant unless he felt i truly needed it..
I cant help feeling that if i had a hysterectomy 10 years ago when i wanted it.. none of this would be happening.
Also my daughter just gave me the news that I am going to be a grandmother again and now i am afraid I won't be around for the birth of my grandchild. After all I am 57 and having all these problems.
Please God I hope it is not too late..
I cant think of anything it could be other than cancer.. I am afraid the cervical dysplasia has now become cancer and it has spread. Is is posibble to have spread since my cat scan and Ultrasound done 2/09? That is only just over a month ago!
I am sorry i am rambling...
I just dont know where to turn. It doesnt seem as if my drs. are being honest with me or maybe they just dont know.
Hi Legs! I'm so sorry you having to go through all of that!
I highly suggest you go to another doctor. He may be a very nice man, he may be running a lot of tests, but he seems to be missing something. You need to look out for your health.
I also suggest you get copies of all of your pathology reports from this doctor (for the last 20 years). There may be something there that he is missing.
I may not be remembering what all you said, but did he ever do a colpsocopy and biopsy? An ECC? a uterine biopsy? a D&C? If not, with this repeated bleeding, then I'd think one or all of those tests needs to be run.
Thanks you for your quick response. In answer to your questions.. I had many tests over the last 20 years. I had a D&C back before I had a cone biopsy done.. must be about 10 years. Do i still need a D&C after menepause since I dont get my period anymore? My last period was about 10 years ago.
I did have 2 colposcopys and i did have a biopsy done of my cervix.. I think he biopsied the tissue from the cervical dysplasia.
I cant imagine what he missed with all the tests I have had done in the past 20 years.. I have always been diligent about going for my paps and mammos.
I just cant imagine why i had sooooo much bleeding after menepause.
Do you think I should go to a GYN/ONC instead of my regular GYN?
I will also call my regulary gyn to get all my medical records to bring to the Oncologist. I just thought you dont go to an Oncologist until you know it is cancer.
I don't know how all gyn/oncs operate, but mine wouldn't accept a patient until she had seen all of the slides and reports that had been done previously. You can always look up any local (if any) gyn/oncs and call their offices to see what they need to accept you as a patient. That's what I did after I knew I had adenocarcinoma Ia1, but hadn't seen my doctor (gyn) who'd done the test. My gyn had already forwarded my information to one of the gyn/oncs in town. When I called the next day (just looking to see what I needed to get an appointment), the nurse talked to me for a while, then said, "What's your name again?" She said my information had already been sent to the doctor and that she could schedule an appointment that week!
The thing I see missing in your story is that your doctor has checked your cervix and your uterus, but not the canal. And yes, it is possible that something could be wrong with the uterus even after menopause (the way I understand it).
Bleeding after menopause should ALWAYS be investigated.
I'm thinking more about the gyn/onc option. If you have anything more than moderate dysplasia (cin II), then a gyn/onc might take your case.
I've got to run right now, but will check back this evening.
I can't help but to echo Pickle's advice.. She is spot on..
Try and get copies of your medical records and pathology reports. You are your own best advocate and you need to be happy with what the Dr. is telling you.
I was with my ob/gyn for a decade and after getting diagnosed with dysplasia earlier this year (long story), I hoisted myself to a gyn/onc and a new ob/gyn. There were some things that left me absolutely livid regarding the care I received.
Ask our family Dr for a referral or recommendation to an ob/gyn AND an onc/gyn. It can't hurt to see both and the oncologist might find things your normal ob/gyn missed or ignored due to not being a specialist.
What you describe all sounds pretty obvious to me. You have a uterine fibroid which was confirmed on the ultrasound. These are typically the cause of post menopausal bleeding and with these symptoms, should be removed.
Also, perhaps you could also have vaginal HPV lesions. Just because you have a negative Pap doens't mean you don't have HPV elsewhere. I had vaginal HRHPV with negative Paps. If these lesions are irritated (through friction) during intercourse they very well could be bleeding as well.
I would suggest you get your doc to do a colposcopy with specific attention to the vagina. Also, I didn't see if you mentioned that you had an endometrial biopsy done. Cancer of the uterus can cause bleeding as well so talk to your doc about doing one when he removes the fibroid. You don't necessarliy need a gynonc but, given the history you would probably be better off having one going forward with this as opposed to having to find one after it is said and done.
I want to thank all of you..Dragon fly, pickle eyes and luvbug. I am so grateful that i have found this board.
I have had this fibroid for quite some time. I remember it showed up on a previous ultra sound i had several years ago and my Dr. was not concerned about it even then. I dont know what the size was then but according to him he said it is not a large fibroid and he said it is common.. so i havent even given it a thought that it might cause some of my problems. thank you so much Dragon fly for bringing it to my attention. What i dont understand is how it is causing the bleeding since the bleeding happened before we even reached the point of having intercourse and it was a LOT of bleeding..it was really strange how it stopped so quickly and there was no further bleeding. Of course we also did not continue. the bleeding brought it to an abrupt stop. I still feel embarrassed and humilitated over it.. I am now so afraid of ever having sex again. I am so afraid it is going to keep happening. Is this how it is going to be for the rest of my life? Will i have to stay celibate and if i do how will i know I still have the problem since i only bleed after intercourse?
I am going to call my gyn first thing in the morning and i am also going to find a gyn/onc.
I just hope A gyn/onc will see me since i have not yet been diagnosed with any type of cancer though i cannot see how it CANT be cancer. This has been going on far too long.
I only hope it is not too late.
Dragon fly I am going to definitely ask my dr. about doing an edometrial biopsy. I dont remember if he ever did one. Also I will ask him about doing a colposcopy focusing on the vagina as i really think that is where the bleeding was coming from since there was no penetration when all this bleeding occured.
I want to thank you all again for your input and I will let you what what happens.
A friend of mine at work just had a hysterectomy on thursday because she always has heavy bleeding during her periods and here i am .. I cant get my dr to do a hysterectomy with all the problems i am dealing with... HPV, Cervical Dysplasia and a Uterine Fibroid.
As for Uterine cancer, wouldnt the cat scan or ultrasound have picked it up?
Just for clarification, the ECC scrapes the cervical canal. Talk with your doctor about it. Also ask about looking at the vagina for lesions. The doctor can swab your vagina (like they do the cervix) and view it with the colposcope. Perhaps he needs to take a closer look at the vulva (external genetalia), too.
CAT scans and ultrasounds only pick up larger lesions. I had 2 AdCA lesions, but they each were less than 1mm across and 1mm deep (a dime is 1mm thick). They were not picked up by the MRI, CAT, or U/s.
A CT would not pick this a cancer nor would an US. What they would pick up is abnormal endometrial thickening. The lining of the uterus does not go beyond a certain dimension after menopause so if it is thicker than that it can indicate a problem. That is what the radiology tests would have shown. Glad you found the information useful and keep us posted.
Just thought I would put in my two cents if it can be of any help.
Like Pickles Eyes, I think you should try to get a second opinion, just to be safe. An endometrial biopsy is ALWAYS recommended for postmenopausal bleeding. A D & C is even better as they can biopsy all of the lining that they scrape from the uterus (the endo biopsy takes only a sample). These tests check for uterine cancer.
Since you have already had cervical dysplasia, it would be a good idea to do a thorough check of the cervix including the canal as Pickle Eyes has suggested. Just to clarify, the pap smear does not check for HPV. A pap smear is a scraping of cells from the "face" of the cervix (ie. the bottom part, not the canal). These cells are then looked at to see if there is any change in their makeup (if they are anything other than cervical cells). An HPV test is something else, it tests cells for the presence of the HPV virus and in particular for the strains of HPV that are known to cause cervical cancer. If you have HPV one year and not the next, then it means that your body has managed to fight off the virus. Women over the age of 30 years of age are less able to fight off this virus and are therefore recommended to have the HPV test (although for some stupid reason, we don't get this in Canada ... $$$$). You may very well have a negative pap smear and still have the HPV virus so the pap alone is not enough reassurance in your case. Many women have clear paps only to find out later that they have adenocarcinoma (a glandular type of cancer) which was present in the canal of the cervix where the pap cannot reach. The ECC is therefore recommended in your case as Pickle Eyes has so wisely suggested.
As for the fibroid, although anything is possible, I have my doubts that this small fibroid would be causing the bleeding. Large fibroids usually cause heavier menstrual bleeding in premenopausal women because they interfere with the uniformity of the contractions of the uterus. The uterus does not contract properly and as a result, cramping is increased and so is the bleeding. When I had irregular bleeding, I blamed my tiny fibroid (I am premenopausal) but it was something else altogether. My fibroid is about the same size as yours and after I solved my irregular bleeding problem (mine was caused by endometrial atrophy from prolonged use of the pill .. when I stopped the pill, the irregular bleeding stopped too .. ) my fibroid was still there.
I think that looking at the vagina and cervix (including the canal) for lesions and testing the uterus for abnormal cells is the best way to rule out possible causes of your bleeding.
Take your health well in hand and insist that they do thorough and complete followups. Keep up with what is being done yourself. You are the one who will care the most about this and not them so stay vigilant. I wish you all the best and hope that you find the cause of your bleeding very soon. Take good care of yourself.
Thank you again for your input. You have also helped me in the past.
I wanted to share this with you, pickle eyes and Dragon Fly.
This morning i called my regular GYN whom i have been going to for over 20 years.
I left a message for him to call which he did.
He asked me what the problem was. I told him I am bleeding yet again. He asked if it was after intercourse. I told him it didnt even get that far. He said it sounds like an abrasion and maybe i got scratched during foreplay. SCRATCHED?? I was bleeding like a pig!! I told him i was bleeding a lot and then it stopped just as quickly as it started.
He said if i wanted i could stop in and he would look to see if he can see where it came from. I asked if it could be cancer and he said no he really thinks it is an abrasion. I was so upset but i told him i would think about coming in. he said fine. just call the office if i want him to look at it.
I decided to call and make an appt with one of my co-workers gyn in MOrristown which works out of Morristown Hospital which is one of the best hospitals in this area. My dr. is from my town which is very small and he works out of my community hospital which i do not like. Morristown on the other hand is more of a city and Morristown Hospital is a very large Medical center. Also there is a GYN/ONC right next door to this new GYN.
There is not even a GYN/ONC in my town!
I have an appt tommorrow at 1pm and they told me to bring copies of whatever test results i have. I have my cat scan report, ultrasound report and CA125 test results.
I am due for a paps test which I know will be the first thing they do.
I will let you know how it goes.
I hope this GYN is better than the one i have been going to. He used to be good. He used to be agressive and caring. I think he is getting near retirement and also I think he just wants to deliver babies..
This is very perceptive of you regarding your doctor getting close to retirement and only wanting to deliver babies. I think you have taken a very positive step forward in your healthcare.
What your doctor told you does not make any sense. Good grief, unless you are getting scratched everytime you have intercourse then I doubt the same scratch or abrasion could cause so much bleeding AND occur everytime you have intercourse. At any rate, it does not hurt to check everything, just to be sure. Most of these tests can be easily done in a doctor's office.
I hope your new gyne gets you results. All the best and let us know how it goes.
Well i went to the other GYN today and was very impressed. He took one look at the ultrasound report i gave him and said there is definitely a problem with my uterus. He said the lining of my uterus should not be as thick as it is.. 7mm. not in a woman my age. He then examined me and said my cervix looks fine, no visible cervical dysplasia and then he did a paps test. He was very thorough. He also checked my breasts and found a dark frekle on it. He asked me if I had that all my life and I said no. I think i just noticed it about a year ago. He said he didnt like the way it looked and I should go to a dermatologist. he also found another on my bottom while he was examining me.
He also told me the bleeding appears to be coming from the uterus. I asked him why i only bleed during intercourse and he said when a women has intercourse or is aroused her uterus contracts and then is when i bleed.
Estria you were right.. He is doing a endometrial biopsy on Thursday.
He does not understand why my dr did not do one when he saw the measurement of the lining of my uterus. I told him I asked my Dr to do a hysterectomy several years ago.
It seems like my dr was focusing on my cervix and not even looking at the uterus.
Estria do you think there is a good chance that i have uterine cancer? Do you know if it spreads quickly because if it is i must have had it for a while.
I told the dr whatever it is it must be getting worse because the bleeding was much heavier. Also I am surprised I dont bleed in between having intercourse.
I really like this dr and I can see a big difference going to a dr in a big city who works out of a large medical center than going to a small town dr.
I had to call my old drs office and ask for my medical records for the past 5 years.
I told my boyfriend that he (dr) is going to be mad at me and my boyfriend said i am the one that should be upset with him.
the GYN i went to today no longer delivers babys. He said he strictly does gyn only. He doesnt even do the surgury. there are 4 other drs. ( all women) and they do the surgery and they deliver babies.
I felt so much better after leaving his office.. even though i may have cancer. I just hope if i do he found it early enough.
Tell me estria, did you have cancer and what kind? How are you? Is it resolved?
I think I am more afraid of losing my hair thru chemo than anything else..
See? here i go again... projecting.. thinking the worse.. I also hope i dont have skin cancer.. At least i feel I am on the right track now. My god! If i didnt take your advise and others and not change doctors I would still be going on as i was and whatever i have would just continue to get worse and if it is cancer it would keep spreading.
Do you know how fast uterine cancer spreads?
when he examined me he said the abdomen was soft and the uterus was not hard or enlarged and my ovaries felt normal. Is that good?
Can the thickness of the lining of the uterus be something other than cancer?
Wow, I am getting scared again just thinking of this.
I want to thank you all again.. If it werent for you, pickle eyes and dragon fly I probably would not have gone for a 2nd opionion.
Try to relax. First of all, 7 mm is not really all that thick. Usually they consider 1 cm to be an indication for uterine hyperplasia, this condition of a thickened lining MAY and I say MAY be a precursor to uterine cancer. Most often what happens is that postmenopausal women will have irregular bleeding (this includes bleeding from intercourse) and they may have to have a D & C. What usually happens after this is that the D & C takes care of the problem. My mother had this occur to her after menopause.
My irregular bleeding was due to long term use of the pill and when I stopped the pill, the irregular bleeding stopped too. The pill had thinned my lining so much that it became fragile and formed varicose like veins which began to bleed. Unfortunately, they also found a very large cyst on my left ovary at that time which I will have to have removed at the end of April. The cyst is filled only with fluid and I have been watching it for over 18 months. It has grown very little since then and they are almost 100% sure that it is not cancerous (although only a biopsy can tell 100%). Since the cyst is now almost 9 cm in diameter, it is taking up a lot of space and shifting my bladder and uterus to the right. It is definitely time to take it out while I can still get it done through a laparoscopy (quicker recovery). The surgeon will remove my left ovary, leaving the right one to provide me with the hormones that I require.
For your endometrial biopsy, I would recommend that you take one or two Advil (ibuprofen) about an hour before, if you can take this medication (ie. not allergic). Check it with your doctor first of course. This will completely negate any cramps that you may have afterwards. Also, keep in mind that you may have some bleeding after the procedure and that this is completely normal. The procedure is fast and essentially what happens is that the doctor inserts a "straw" into your uterus which he twirls around in order to suck out some uterine lining tissue.
Although you probably don't have uterine cancer, if it is any consolation to you, the most common form of uterine cancer moves very very slowly and I believe that it spreads to the cervix first. Most likely you have what is called DUB, or dysfunctional uterine bleeding. A diagnosis of DUB is made by exclusion meaning testing negative for all other causes. Many women never find the cause of their bleeding and some prefer to have a hysterectomy. This is something you will have to discuss with your doctor as a hysterectomy is not without some risks (the uterus provides pelvic floor support to the other organs such as the bladder).
I hope this helps you. Don't let your fears control your thinking but rather your thinking should be controlling your fears. Take charge. I am sure that you will be fine. Let us know how the endometrial biopsy goes.
Oh, and by the way, a freckle is most often just a freckle. Get it checked out but don't freak out over it. As we age we start to sprout all sorts of freckles, skin tags and such and if we went crazy over every little thing they would have to come and haul us away in a white van. Just get the skin doctor to have a look at it, that's all (he will know better than a gynecologist). I still remember when I started getting these dark red freckles on my breasts (I have two of them there and a couple of others elsewhere) .. I freaked out and went to the doctor's only to be told that these are very common and not at all harmful. When I happened to mention it to my parents, they just laughed and showed me that they had some too. I guess now I know where I get them from.
I just thought that I would pop in with my two cents. In November 2007 I had an ultasound for left sided pain and my endometrial lining measured 18mm. My ob/gyn did the endometrial biopsy and he scheduled me for a D&C with a hystroscope. The hystroscope was to see the whole uterus which ultimately showed that I had a good size uterine polyp in the lining of my uterus. He removed this polyp and performed the D&C. All of my pathology came back fine. Last November 2008 I again had an endo biopsy because I had two episodes of very scant bleeding. Again my pathology came back fine.
Estria gives good advice about taking some advil or tylenol before the endo biopsy-I did this two years ago and really only had some cramping, last year I forgot and I felt a little discomfort but really the biopsy is really not that bad, it is over before you even know that the doctor has begun.