Well Ive had sex once and that was in May 2007 before all this bad stuff happened to me in August 2007 . But with being in the last year of being a teenager I really want to have sex with someone but Im bricking it incase anything bad happens to me again months after ide of done it again? And I really cant be bothered going through all that again. I mean ive had my AVM removed noe but still unsure on whether I should have sex again?xxx


This is pretty much an open board and you can post just about anything. You will notice that many of the posts in the recent weeks have included a lot of sexual content.

Another moderator contacted me last week about some of the posts, saying a few people contacted her to say they were offended. At the time, I thought, and still do, they were probably ok, but approach the line.

I think it's a fair question to post here about having sex in relation to having an AVM. I think that straightforward answers / comments to that question are also legitimate and should stay.

Some of the recent replies I read initially as OK, leave em up. Several hours later, in re-reading them, I applied the question "Does this response provide any value-added information to answer the original question about having sex when you have an AVM?" As I viewed the replies, I did not think that they did, so I deleted them.

It might not be the right approach, and you might disagree with me. Shoot, other moderators might not even agree with me.

It is not my intention to be the 'morality cop' on this board. But I have been assigned to help moderate the board. As such, I want to try to keep it as user safe for anyone to read. Keep in mind, there is a potential for fairly young children with AVMs to be following this board, with or without their parents. And I understand that what they might read here is MILD compared to what they can see in their own homes.

I only post this note so that you might know why I deleted some posts. In the couple years I've been on this site, I've deleted only a few posts.

All I ask is that you try to keep the posts relevant to AVMs and keep it close to G rated. In my opinion, the posts I deleted did not meet that criteria.

Ron, KS

Hi Jay,

This is a question you should probably ask your DR. The DR is the only one really in the know about is it safe for you to have sex, based on what he/she knows about your AVM.

I can tell you that when my wife had AVM surgery about 1998, one of the items on the discharge papers said "5. Refrain from sex."

Of course, when the AVM head RNs came in to discuss the discharge instructions, I immediately said "What about this number 5????????????????"

They both laughed a little and said they didn't know why they always put that on there. Their both said as soon as she feels like having sex, we can. They also said everyone asks about #5!

Hope this helps.
Ron, KS

Jay, you should always check with your doctor to be sure, but I would say that since your AVM is gone you're probably ok.

First I have to repeat what others say... ask your doctor. I agree it's probably ok because the AVM no longer there, but your doctor knows all the details and probably can advise you best.

Second I want to say that Ron (after discussion with the other moderators) had a great note about the nature of posts. Kudos Ron! If you hadn't read Ron's reply, please do! Looks like we're in good hands. :) Hope everyone is feeling well.

This is a very good question and again I will refer you to your doctor. I understand your concern however. My husband and I went a long time without having sex due to the fear of causing problems with his AVM's. We have had many sessions that were uneventful but we have also had times where we ended up in the hospital the next day due to heart problems induced by his AVM's and the extra pressure they put on his body after we had sex. Good luck and be safe.

Hi Ron - You couldn't pay me enough to have your job - I know that it must be extremely difficult, but it sounds like you have some great guidelines.

Hi Jay - I'm in the "check with your doctor" camp - but I read on here somewhere about the blood flow affecting the AVM, but since you're AVM-free, I would think that it's okay AVM-wise.

Hi Julie,

Yea, the pay for being a moderator here throws me into a much higher tax bracket (grin). In case you don't know, moderators here are just people with some relationship to AVMs that volunteer to help out.

My wife had an AVM show up about 1991, and through a long series of treatments, waiting, more treatments, several embos and then 2 or 3 brain surgeries, is now avm FREE! The whole process took us nearly 10 yrs! We had to learn a lot of patience in the process.

I've been hanging out here since almost the beginning--back when there were a hundred or so members. The number today is 3,814. So the site has seen what I consider to be explosive growth and I believe is helping a lot of people.

I spend much more time responding to posts dealing with AVM questions than I do in "moderating". This is only the 2nd time I've really jumped in. The first was calling a Social Rehabilitation Service Hotline in Texas TWICE over concern for an AVM poster that had a lot of issues. Ironically, the first time I called, THEY WOULDN'T TALK TO ME! It reminded me of the old joke about calling the suicide hotline and being placed on hold--only this was serious--a person in their jurisdiction was in potential trouble (abuse) and they didn't want to hear it....................

To me the funny part of that was SRS called me back a few days later. It was one of the weirdest conversations I've ever had. Due to privacy issues, SRS couldn't say anything (I was concerned about the member's safety). SRS wanted to know how I knew about her case. It was obvious the rep had never used the internet: she couldn't understand how a moderator in KS knew about details of a potential victim in TX! The rep finally said "I'm very familiar with this person and I know the whole story. I just wanted to find out what you knew." Turns out, this rep had been to the members house many times.............. So I guess the site worked as hoped.

The second time consuming issue deals with this series of posts. But I want to help, and I want this site to continue to prosper and help people, so I feel it's a good use of my time.

Ron, KS

If you have had your avm removed it shouldn't be a problem, although with the consensus best to speak with your doctor who knows your exact ins and outs of your case, however you might find you need to speak to someone more on a mental note - like a counsellor or someone who can help you get over the worry that something is going to happen again, hard to do sometimes but would be worth your time to get an assessment of your mental health and fear as a result of the past few years living with the fear of avm. x best of luck x

No doubt that it's a good use of your time - and I know that it helps probably everyone on here.

oh - and funny about the non-salary - after I wrote that, I thought about it. the "send" button tempts me when I know that I should just sit and think on it before hitting that button. =)