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I am wondering, since it is hard to find info online. I have VHL and we all know that children have a 50/50 chance of getting it. my question is, is there a connection between VHL and ovarian cyst. Most of the health care pro's that I talk to have never heard of VHL, or if they have they have no idea if there is a connection.
there is somethink about this in the vhl hand book over here in england they dont tend to say its connected but i had always wondered the same so if anyone knows the answer to this question would be good to know
I recently had an ovarian cyst removed and to start with they said it could be linked but then said its not related to vhl, thou I wouldn't trust their judgement. Also, was advised that HRT would not affect my current tumours but according to gp's in the usa they advice patients not to take it as it increases tumour growth
Hy my name is Karen three years ago i had a cyst on my ovary the size of a tennis ball.The cyst had also twisted, at the time the consultant told me this was not related to V H L. I was left and not given treatment, after three months of severe pain the cyst un-twisted and dispersed. After researching and consulting my genetics team i was later informed that cysts on ovaries can be related to V H L. This was a new dicovery and they were sorry for the discomfort and pain i went through, in future they would know what to do.
hy their my name is Karen and i wanted to post you a message. My mother has been told she will not be able to take hrt treatment due to the V H L. It is the same as when you get pregnant it changes the hormone production in the body. Alterations to your homone levels can stimulate blood vessel growth, cyst and tumor growth in patients with V H L. This is why H R T is not reccomended for individuals who have V H L.
I've just finished 6 months of HRT treatment, with double dosages to recover from having my ovary removed. I did check with my genetics doc and they said it wouldn't cause any problems. Thou my latest scan has showed my brain tumour has grown slightly to last years scan. I find it really hard to believe how different the treatment varies throughout the UK, especially compared to the USA. Its really starting to bug me and think how useless they make me feel especially with the lack of support and poor attention to health. Making me doubt whether its worth continuing with them wasting my time for appointments they never even remember to book
All I know is that when I went in for my first scans, my doctor said that in addition to my brain and pancreatic lesions, I had a cyst on my ovaries. I had my gyno look at the CT and he said is was only due to my current menstrual stage and that it is gone now. I'm not sure what the story is on you, but if my story applies, I hope it can be of some help.
as far as i know we dont get screening for this as they think that cyst dont have anythink to do with vhl , i really wish that someone in england could find out what is what , is it because some places do more resurch than others or funding for these things , or is it the fact that doctors have different thoughts on this and no one reallys knows for sure what effects us , we all sit on what ifs and when with vhl , i just hope one day we may know whats wrong or right with vhl ,
This is an area that we know little about. We have not yet been able to get a researcher interested in studying this issue, but there is definitely a connection with SOME (not all) ovarian cysts and cysadenomas (non-cancerous tumors). The Handbook has a discussion of this "VHL and your Reproductive Health" http://vhl.org/handbook/vhlhb2.htm#Women
Just as there is a benign cystadenoma in the epididymis for men, there is a similar kind of tumor or cyst that occurs in the female reproductive tract. The complication is that there are a number of cysts and tumors that can occur in this area in the general population. So when something is seen, as in the cases you discuss above, is this connected to VHL or not? Not an easy question.
Ultimately, the way to tell is to take it out, put it under the microscope, and examine the cell structure to see whether this cyst or tumor shows the VHL change. It would show loss of BOTH copies of the VHL gene. Few tumors undergo DNA analysis to this extent, so we really don't know.
What we have been trying to do is to collect a number of these cysts and tumors in the tissue bank, so that we can offer a potential researcher a nice collection to be studied.
SO IF YOU ARE GOING TO HAVE ONE REMOVED, PLEASE CONSIDER DEPOSITING IT IN THE TISSUE BANK. See http://www.vhl.org/bank
Once we have a dozen or so in the bank, we should be able to get someone interested in studying them in greater depth.
There is no easy way to tell before surgery whether this is a VHL tumor (which is benign) or a more nasty kind of tumor (e.g. ovarian cancer). There is a test called CA125, but it has a high false-positive rate (it often says that it's cancer when it isn't) so when we were doing the last handbook revision, the committee decided that it might raise more questions than it answered, and we chose not to include it. Ovarian cancer is a very dangerous disease, so doctors tend to err on the side of removing the tumor just to make sure it's not ovarian cancer.
If you and your doctor decide that you should have such a cyst or tumor removed, PLEASE put it into the tissue bank so that we can get this studied for all of us.
I should tell you that since we have been educating women with VHL about these tumors, we have a number of younger women whose doctors are working with them to observe suspicious tumors. They used to immediately remove them, often taking the uterus and ovaries as well "just to make sure". Doing all that to a 19-year-old and then discovering that it was all benign is pretty life-changing. So now that we understand that there is a benign tumor that goes with VHL, we have been able to observe them and learn more about how they grow.
At the same time, it is important to participate with your doctor in keeping a close watch on these. We are still members of the general population, and we sometimes do get ovarian cancer, so treat them with great respect, but unless the tumor is behaving in an aggressive manner or causing pain, we can usually live with them.
If you are willing to share your history with a researcher, please let me know at director@vhl.org. As soon as we have a critical mass of patients and tumors, we will advertise for someone to apply for a grant from us to study them.
Many thanks and all best wishes,
Joyce
hy again i feel that a lack of knowledge and a fear of the un-known on doctors behalfs makes the way individuals with vhl are treated un acceptable. In West Lothian in Scotland doctors dont want to know they dont want to diagnose so their answear is we will wait till your screening to see what happens then. Well i have had enough of this treatment. Every time my screening has been implemented i am told what is wrong this is after months of pain and feeling un-well. If individuals like what are in this group can educate and disscuss issues surrounding V H L and gather knowledge on the disorder then i feel that the medical proffession should also try this. Medical teams find it to easy to pass the buck and no consistancy can be found in our primary care teams. I understand this disorder is complex but i feel the doctors make it even more so with their lack of understanding and less than empthetic manner. Individuals with V H L should be listened to more by the health proffessionals and work along side us not pass us on to the next consultant in line. Thanks for reading this i just find that one proffessional says one thing only to be changed by another, we deserve the right to consistancy and facts.
Karen
I am a medical doctor suffering from VHL and as per the medical literature available, cysts in ovaries can be a part of the package. But since ovarian cysts are even otherwise common and can occur due to a variety of reasons, finding the exact cause may not always be easy. And yes, you are right, most of the doctors are still not much aware about VHL.
Hi, Karen. Are you saying that if you have symptoms, the doctors decline to investigate the symptoms now? They make you wait until your next scheduled screening?
That is not good. If you have appointments for your regular screening only a few weeks from the time you ask, I can see that they might want to keep to the established schedule. They might not be able to accelerate the schedule much.
However, if the regular screening is months away, you should insist on getting some attention on the problem now.
Many of us live with low-grade symptoms for a long time due to a growing issue. But if the symptoms are new, or if they change rapidly, you are absolutely right to want someone to take you seriously and talk with you about what it might be, what risks might be involved in waiting.
But if the symptoms have changed only a little, keep track of the changes and see if waiting for your next screening might be okay. If you are unsure whether or not to wait, call your doctor and discuss it.
Remember: screening is to find problems that have no symptoms. That's why we schedule them -- because there is no particular reason to choose a different time. But when you have symptoms, and especially when the symptoms are changing, your need is NOT for screening, it is for CARE. You are entitled to ask for care when you need it.
Best wishes,
Joyce
hy Joyce,
Thank you for your reply, i attended the local gp as i knew that my pain from the cysts on my pancreas had changed and was very intense. This was in the August of last year, i had already been told previous they were concernd about one of the cysts as the fluid inside was changing. I was told by my G P to wait until my screening in October. In the November i was informed at my results appointment that my largest cyst had burst and i had five new cysts on my pancreas as well as the ones i had previous. This is how our local G P's appear to deal with my family their is five of us in our town and were the only five individuals with V H L. They openly admit they dont know what to do and i find this scary, their lack of involvment ment i was left in pain and not able to maintain a stable diet i had to find my own coping mechanisims to ensure i could continue with my life. I know people fear what they dont know and i agree totaly with what you said about it being care we need i just wish my G P would see it that way to.
Thank you again and best wishes
Karen
hi everyone i agree my docto does not know what to do with me , makes me fill like im just full of moan , i havnt seen or heard him ask what vhl is about or could i get info for him , now i have another problem from the dentist they need to do a filling but what i tryed to explain was i cant have adrenline , so he looks at me gone out , i get frustrated and just agree with what he says , he wants to write to my doctor who kows nothink to find out what to do with me around abouts we go again , my brother went dentist a couple of weeks ago hes got no adrenal glands and they gave him adrenaline injections well what a mess got rushed to hosiptal very poorly , i could really do without pain in my teeth , got enough to deal with but what can we do , o and he also panicked when i told him i have over 6 tumors of the brain , am i really that sceary lol, i knew really he dont want to risk goin near me , so again left in pain , is there any info going about for dentist , would be greatfull if someone knows about this ,
hy Batley its Karen,
My mum also has tumors left in her brain and attends the dentist on a regular basis as do myself. My mum has had fillings with no problems occuring. I dont understand why you would have an adrenalin shot when having a filling. In the uk we get the local anesthetic jag to numb the mouth and have the filling put in place. Our dentist is amazing and due to the V H L and the issues we have with our pancreases and the damage the medication is doing to our teeth he sees us on a regular basis. I would ask your dentist why you need the adrenalin and print information of the V H L website and give to him to keep in your file. I hope you have your mouth seen to soon.
best wishes
Karen
The dental situation applies only to people with an active pheo, or in the case of Lesley's brother, someone with no adrenal glands. Obviously the idea to give him adrenalin was not a good one, since he wound up in the emergency room. But the idea is that the dental procedure, or the pain medications the doctor uses, can interact badly with the adrenal replacement hormones he is taking. You need to speak with your own doctor about what you need to know about your own situation, and any medications you are taking.
Usually there is no impact for people with other VHL issues.
Re doctors not knowing about VHL -- I give them points for acknowledging that they don't know about VHL (which is frankly normal), but I take away points for leaving it at that. If this doctor is going to care for you, he or she needs to take the time to at least read our Handbook and get educated on how to monitor the health of someone with VHL.
The topic of working with doctors in a constructive way comes up a lot on the VHL radio show. The current show in particular treats this topic well, and there is another interview with Dr. Hollenbeck that you will find interesting, that will air in July.
See http://powerfulpatient.org
Best wishes,
Joyce
thanku for the advice i am havin it all done on monday im gwttin knocked out as im just to nerouse , the injection to put in my mouth they use somethink else for me , as i really couldnt say for sure as yet if theres another pheo hangin around , i know ive so got to get it sorted cause these headacks are drivin me mad , and there so much like last time , and i know there not commin from the brain now , i went to another dentist this morning as i just wasnt happy with the waiting time of them to sort somethink out , i am goin to take a vhl hand book into my doctor and ask him to read this , he prob wont be happy but if hes to treat me then he needs to know ,
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