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Have Ovarian Cyst, On And Off Bleeding, Growth In Uterine Cavity, Low Haemoglobin. Any Suggestions?

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Posted on Sat, 10 Nov 2012
Question: I was recently on here in the past few weeks due to female issues and corresponded with Dr. Koregol. (sp?) an infertility specialist. I really need a Dr. who can listen to what I am saying and help guide me on what to do. Dr. Koregol helped me, but now it has gone beyond what he can do I believe, atleast in part. My doctors in my area are either not listening to me, or they contradict each other and I am quite frankly frustrated. I am also very much apt to handle my health as naturally as possible and without meds. I hope you are able to see my correspondence with Dr. Koregol. It would be a lot to type if not. I will be breif as possible, but get to the point as best I can. I am 47, female, and have had 5 children. I am about 154 lbs., and 5'6". I am healthy in many respects (blood pressure, cholesterol, etc), but have been dealing with a lot of stress in my life and menstrual bleeding which is what has gotten me to where I am now..also thanks to a Dr. who did not treat me right. I am not crazy, and I am very educated, so therefore I do my research and read and it seems the more I do, the more the doctors do not want to listen to me as they get the attitude that I know nothing and must be wrong and they are always right. I am not saying I am completely right, but they still are not listening to my full history and things to me are just not adding up right or making sense and they think they are. So, this is it: I have always had heavy menstrual bleeding since age 14, at first menses was two weeks long. I bruise easily, and after each child I bled more than I wanted to, but not life threatening..but it went on longer than normal in my opinion. Also at age 18 with all four wisdom teeth out, I got dry socket. And, 12 years ago, during 3 hour breast lift surgery, the dr. said it took 5 hours instead as I was "oozing" during surgery. I also have every year been at hemoglogin levels of 10 or 11 during cbc physicals and probably dropped to 9 or so every month during my heavy cycles that come every 3 weeks or so, earlier than 28 days usually. My docs would always say: "you are slightly anemic". I would tell them I was eating right and taking supplements and they would be fine with that. I trusted them to do what I needed if they didn't think what I was doing was right. But to be below 12 ALL the time is probably not good. I am now seeing all the symptoms put together. I am always cold in AC places, nails get brittle, etc...all iron low symptoms I have. Anyway, my nightmare started this past May as far as serious. For the first time ever I got two periods (very heavy) 16 days apart. I knew it might be that I was getting older, but knew I should get checked out. I had a doc order a uterine ultrasound. It should masses, abuout two. I went then to an OBGYN who made things worse for me. He is a very volatile, arrogant dr., but not at first. I also had a cyst on my left ovary, along with "stuff" in my uterus. (Oh, forgot to mention I also had endometrial surgery at age 22 (laparoscopy?) and was "cleaned out"). So the dr. and I discussed my past history and the cyst and the uterus. He said to do a follow up ultrasound 3 months later to ck the cyst. For the uterus, he said let's do a biopsy. So, on JUly 2nd, I had the biopsy in his office vaginally with a hysteroscope. It was done while I was awake with ibuprofen and hydrocodone. It was only 7-8 min. long. I asked him if it was polyps or fibroids, and he said he wouldnt' know til biopsy came back, but that is not what he said prior to. He said during he would be able to see on the camera. Anyway, he said I would just spot for a few days after. I did for 2.5 weeks. Then all went to hell. On July 20th, I started bleeding very heavily like hemmoraghing...like the first 3 days of my period is, so heavy that I was having accidents in the car while driving, just 30 min of driving, public accidents in the store, having to take changes of clothes with me, going through over 120 tampons in 8 days and pads. Clots were being passed from nut size to golf ball size. It was like my period, but wouldn't end. I started to get out of breath going up stairs at home, (and I usually play softball), I couldn't play, and i slept most of the time. I thought: "All this from a biopsy?" I did call my dr. all the time, letting his staff know how much I was bleeding. I asked for him to call me, and they said no he could not. They said "The dr. says your uterus is irritated and this is normal, but if you want to go to the ER, you can, or you can come in XXXXXXX I asked what he could do for me, they wouldn't say. I needed to know from them what to do, and they kept putting the decision in my hands. I needed guidance and got none. In the meantime, the dr. was waiting for two things: me to stop bleeding and he was arguing with my insurance because he wanted the surgery to remove the "stuff" to be done in his office and my insurance would only approve it at an outpatient setting/hospital. So, while he had it out with them, he never won and on Aug 23rd, I had surgery to remove the stuff in my uterus with a hysterscopic tool under anesthesia. He did not do a D&C, just removal of the growths. I bled up until the surgery, but it had started to slow. Then after the surgery I started bleeding again, but moderately (I don't think much was in there at this point), and bled for about 5-6 days. Then I didn't expect a period for a while, but only 18 days later, I bled very heavily for about 5-6 days. Also on day of surgery, my hemoglogin was 8.4. When I went to the dr. 18 days after surgery, I insisted to see a hematologist because I felt terrible and was at a loss that I was bleeding again so soon. He suggested the hematologist per my request and to do a uterine ablation. I was in such distress I agreed to an ablation scheduled for two weeks out. I then went home, thought it over and called two days later to cancel the ablation telling the staff I wanted to see what my body does post surgery a bit longer, AND get the follow up ultrasound, AND see the hematologist first. He was so angry he called me to yell at me and said I was getting advice from "friggin morons XXXXXXX etc...Anyway, I decided I wasn't going back to him, and continued on to find a hematolgoist and the follow up ultrasound. The ultrsound came back showing post surgery a possible growth at top of uterine cavity (Maybe blood clot), and still a thickened uterine lining, which I have had for years. So, they still saw some stuff and this was done after the 18 day bleed after surgery in late SEpt. about a month after surgery. In the meantime also, on Oct 1st, this month, my hematologist drew blood and at my insistence I wanted a test for VWD. I kept thinking of all the past history: long period at menarch (two weeks), problems during surgeries, dental extraction problems etc..I even had petichae a few times last year and no one knows why. My ankles swelled a few times in the past 18 months, but that could be due to the anemia. Two days later, early blood results showed hemoglobin still low and ferritin low. Hemo was 8.5 and I was at 7 weeks post surgery. I was ordered on a Friday to bed rest til monday and then to come in. I felt awful. I went in and she put me on 6 iron IV infusions to be done in one week. I had allergic reaction so I had to have benadryl before too. I did get bad cramping and diahrea during. That was completed last week while I waited for VWF test. I never expected to see what I saw two days ago when those results came in.
They said the opposite of what I expected. I don't wish for VWD, I just wanted solid answers as to why I bleed like this and have varied symptoms. My results showed factor viii at 219!! My vwf was 176! factor xiii was 141! and RBC 3.51,HCT 30, MCH 24.2, MCHC 28.3. other stuff was normal range. The doctor said "your platelets are working fine, in fact too good XXXXXXX She never addressed what she saw on my results shows a flag for risk of VT etc...and mentions a risk for birth control pills. But she then suggested that when I saw my NEW obgyn, which was yesterday, to possibly think of BC pills to control the bleeding since she said my bleeding is all due to mechanical issues with the uterus and not VWD. (By the way, both biopsy and surgery tissues, two times showed pathology for uterine was benign). So in my research, I have found many sources telling me that factor 8 and vwf can be raised due to trauma, post surgery, emotional stress (I was a basket case in her office on Oct.1 when they drew my blood, crying etc... and have been very stressed even wtih family issues), and also in early July before the hemmoraghing, I was hit badly on the right leg with a ball very hard and it resulted in a contusion on my calf muscle that bruised the size of small football and bruised down to my ankle. It was horrible, and still is slightly bruised 3 months later. I feel that post two surgeries, stress, and trauma to my leg might have elevated my factors. So, the problem is this: I am also type O blood, which according to what I read has a lower incidence of these factors and to control my cyles, I am afraid to do BC pills if this test IS right, but is it? I asked the hemo doc if it is accurate and she assured me...but I am not so sure when all these factors come into play and she ignores my pleas. Also, I have not bled since mid Sept., and my new OBGYN is ordering a new ultrasound to be done at the tail end of the next cycle whenever it arrives. Until then, I am on 300 mg of iron daily for the next 3 months because after the infusions I have hemo at only 11, which is where I hovered at most of my life until I bleed. I do not want a hysterectomy if no cancer and I want to make sure I don't have VWD because if a hysterectomy is ever in the future, that is surgery and I seem to bleed after surgeries. I am not convinced about my results, are you? I am tired of docs who seem to downplay my knowledge and put me off when I say something they don't know. Please advise if I should demand a new vwF test in a few months when I am less stressed and more healed, or change doctors also. Also, if it comes back the same, what about BC pills to get me through to menopause? I don't think I am facing menopause for a while, but the cysts on my ovaries (2nd ultrsound showed one on right now), could cause issues. I don't want an ablation or IUD. Sorry for the long story, but I need someone with great knowledge here, not just a dance around doctor. Thank you for all your help.
doctor
Answered by Dr. Rajiv K Khandelwal (13 hours later)
Hi,

Thank you for your query. I appreciate the details provided by you and would like to summarize them:
1. Bleeding off and on
2. Ovarian cyst
3. Growth in uterine cavity, which has been reported as benign
4. Low hemoglobin with low iron reserves

As you have consulted a number of doctors and a hematologist who have ruled out any bleeding disorder let us go by their opinion. Moreover, your hemoglobin improved after IV iron infusion, which means that your iron reserves are low.

Your ovarian cyst and age can cause hormonal imbalance, which needs to be regulated for which your gynecologist has suggested birth control pills. As you are not interested in hysterectomy, the course left for you is to take the pills along with iron supplements to control your problems.

I can only suggest that have faith in your treating doctor, let them know all your concerns and they shall advise the best for you.

I hope I have answered your query to your satisfaction. Please feel free to contact for any clarifications.

Wishing you all the best...

Regards,

RKK

Above answer was peer-reviewed by : Dr. Shanthi.E
doctor
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Follow up: Dr. Rajiv K Khandelwal (9 hours later)
I am sorry Dr. Khandelwal, but no you did not address all of my concerns. First, my bleeding is not off and on, it only has been because of surgery. Prior to that, it was not, it was always regular and very heavy. Both the dr. and I knew my bleeding as of today would be irregular until I recovered from the surgery. In the meantime, why I bled so fiercely just from a biopsy and other surgeries is the question. I need feedback in regards to the possibiliy that my VWF test is a negative result possibly due to the condition I was in when the blood was drawn, AND that taking birth control pills could harm me if I indeed truly have elevated levels of factor iii and VWF. You're not addressing this at all and my questions regarding the delicacy of the vWF test and what I know. Is there another hematologist who you can please send my info to to review this? I do not feel you took the appropriate time to research my info and answer my questions. You mentioin my age, yet I have had bleeding problems my entire life, not just now. I may more than one issue going on, and need this addressed. I don't want to go on my doctor's opinion, I need yours and others on here because I an NOT happy with my doctor. So please have this reviewed by another hematologist here. Thank you.
doctor
Answered by Dr. Rajiv K Khandelwal (57 minutes later)
Hi,

Thank you for expressing your views.

If you view your problems due to VWF then why would it express only at this age? Secondly, one elevated level of factor III does not mean that it is VWF.

It is possible to have heavy bleeding after surgery on the uterus. The initial part of your description mentioned that you had heavy menstrual bleeding from the age of 14 years. Secondly, you have not provided the detailed biopsy report except for mentioning that the growth was reported as benign.

It is your prerogative whether to accept my views or not. However, in a platform like this the doctors can only guide you and not treat you. It is the treating doctor who has access to all the details about you and in a position to treat you.

I hope I have clarified the position.

Regards,

RKK
Above answer was peer-reviewed by : Dr. Chakravarthy Mazumdar
doctor
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Follow up: Dr. Rajiv K Khandelwal (14 minutes later)
Expressing it at this age is because no doctors have ever guided me and I am finding this out NOW. Many women (if you do your research) can have this and not know it because they are NOT tested and don't know about it. You act as if I have known my entire life about it and am only doing something about it now. That is presumptous of you. And elevated levels of factor 8 does NOT mean VWF, that is why I was writing on here for a hematologist because my symptoms do not match my blood work and there were factors that could have caused a false neg. result. You did not even address that at all. You don't need to know anything from my biopsy report other than benign and that they removed polyps and fibroids. There is nothing else to tell and what they removed has nothing to do with VWF. VWF has to do with the bleeding that occured after the biopsy AND after many surgeries prior in my lifetime that no doctor guided me to get tested for the cause. THat is their fault, not mine. I am not the doctor and you should not allow a patient to be misled like these other doctors and you doctors should guide us when you think someone should be tested for something instead of being quiet.
I am not asking you to treat me, I am asking you to answer my questions of which many you totally ignored. You have not addressed my questions regarding the state my body was in when the blood was drawn, and all of the issues that occured in my life that could point to a problem no one is finding. For you to ask me why I am addressing this NOW is not the point. The point is that it IS being addressed now and I need answers, not your opinions of me as a person and why I am asking something now or later. I have already complained to your team and and very upset that when I paid $9.95, it (the website) ALLOWED me to choose a specialty, and did not say I would not get one. You are a pediatrician and are not qualified to answer blood questions of this magnitude, apparently. Your site should have notified me to pay more if I wanted a speicalty, not take my money and then tell me your answer is good enough. So, I will have charges reversed with my bank if you can't send my question to one who is qualified to help me, or refund me. Ths is ridiculous that this site also says you get two replies but never tells you they will expire in 3 days when you are signing up and paying. If it does, you hide it very well. This is wrong what you are doing, taking peoples money and not answering all of their quesitons and sending docs to do the work that are not even in the field and taking our money anyway. Do what is right, and get me to a doctor that will help me.
doctor
Answered by Dr. Rajiv K Khandelwal (10 minutes later)
Hi,

Thank you for your reply which I humbly accept.

I would like to add here that as a doctor we are taught all branches of medicines and as a pediatrician we do come across haematological conditions including VWF.

I do humbly submit to your views and do not have any thing to add.

Regards,

RKK
Note: Revert back with your gynae reports to get a clear medical analysis by our expert Gynecologic Oncologist. Click here.

Above answer was peer-reviewed by : Dr. Chakravarthy Mazumdar
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Answered by
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Dr. Rajiv K Khandelwal

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Practicing since :1976

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Have Ovarian Cyst, On And Off Bleeding, Growth In Uterine Cavity, Low Haemoglobin. Any Suggestions?

Hi,

Thank you for your query. I appreciate the details provided by you and would like to summarize them:
1. Bleeding off and on
2. Ovarian cyst
3. Growth in uterine cavity, which has been reported as benign
4. Low hemoglobin with low iron reserves

As you have consulted a number of doctors and a hematologist who have ruled out any bleeding disorder let us go by their opinion. Moreover, your hemoglobin improved after IV iron infusion, which means that your iron reserves are low.

Your ovarian cyst and age can cause hormonal imbalance, which needs to be regulated for which your gynecologist has suggested birth control pills. As you are not interested in hysterectomy, the course left for you is to take the pills along with iron supplements to control your problems.

I can only suggest that have faith in your treating doctor, let them know all your concerns and they shall advise the best for you.

I hope I have answered your query to your satisfaction. Please feel free to contact for any clarifications.

Wishing you all the best...

Regards,

RKK