I hope this conversation is allowed! For those of you with your avm's located within the temporal lobe, have you noticed your sexual desire decreasing because of symptoms related to your avm? For me orgasms scare the heck out of me because my head thumps for about 20 minutes afterwards, but now I'm noticing my desire decreasing and this is an area of my relationship that was always healthy. Now it's starting to become an issue with both of us, especially me. My husband understands but this is not something I'm going to stand for! Is anyone else experiencing issues with not only decreased desire, but issues with head thumping and migraines after orgasm? I'm female btw, and this is a real issue for me, my husband is real supportive and doesn't want to do anything that will hurt me or send me into a seizure.
Perfectly legit question. Understand the desire (sorry, bad pun) to maintain your old self. As husband to AVM survivor, I understand your hubby's fear of hurting you.
If I understand correctly, rising blood pressure can cause side effects to increase, and I'd think BP will go up as you ....... ahem...
I'd suggest talking together, and then your DR to seek guidance. Realizing what could have been, our sex and relationship in general has gotten better.
We have already talked to my doctors and they just shrug their shoulders and say, "An avm shouldn't stop you from having a normal healthy sex life"... and when my husband would say, "Even if her head starts pounding..." And they just shrug it off, "Yeah sure...an avm shouldn't hold you back from doing the things you love to do..."
Um... HELLO? Don't any of these docs listen to us when we complain about our migraines and side effects? lol. When I say me head feels like it going to pop off, or I get what I refer to as eye-graines, or thumping in my head, or visual disturbances after, "ahem", shouldn't there be a cause for concern? I think the decrease in desire is more based around fear now.
Zilly, I Would consider this a Major concern! My AVM was Righ Temporal note the *was* Mine ruptured during an O. Yes, we will probably get cencored for such topic discussion! I had a Grand Mal Seizure and then the bleed ! Would definitly check with your Neuro on this one! Let me warn you: It is NO fun getting to the hospital and trying to explain the series of events!!! Althou it is a big joke about being an interresting way 'to go'... I'd rather not 'go' quite yet! Any way you look at it? Probably a serious question for your Neurologist! Good luck, sorry to take the fun out of it! Just a warning, yes, it can happen!
Don't think you have to worry about censorship if we keep it at this level of discussion.
We have a friend who had a grand mal seizure (found out later he had a brain tumor). Kids gone, a little afternoon delight, and whammo--the seizure. Think they came clean with the Drs, but told everyone else they were 'changing clothes' when it hit...........
Just what I thought. Thanks so much for your feedback. After a grand mal less than 2 months ago, my gamma only being back in February of this year...I'm little scared now. :)I've been having these symptoms before, but since my seizure (Which did not occur during sex) I've been very apprehensive. And my neuros seem to think life goes on, live life to your fullest...blah, blah, blah...
I dont know if it has decreased or I am just scared as hell to find out the outcome. This is how I just found out I have an avm and its by the brainstem. Twice after sex it ended with the start of a climax turning instantly into a bad headache for about a half hour or so but the last time the headache lasted like ten hours. The only good thing was that I then went directly to my doctor who said I should go see a neurologist. This was in May and since then I had the MRI, MRA and was then sent up to Shands Hospital for the Angiogram. I am now scheduled for the Gamma-Knife on 7/10. I appreiciate the info, because I think I would rather wait until after the procedure so I dont end up in the local hospital emergency room. So again, thank you for sharing your experience.
I do have a question, is anyone else out there that has also had this experience and had the GK procedure done. I am told they cant do surgery because of the location but have also read that the GK radiation takes time. How much time are we talking about before we can get back to enjoying a sex life???
I think you need to split it into two questions:
1. How long does GK take to work?
2. How soon can I have sex?
Radiation takes time. I'm thinking (others chime in to correct me) 1-2 yrs before an MRI will show any change in size of the AVM. It varies a lot depending on a lot of factors.
As for how soon, I suspect your Drs will say to try it and stop if you are uncomfortable, have pain, etc. When Chari had one of her crani's, we were waiting for the final discharge papers to go home. Reading over the papers prior to seeing our RN, I noticed #5: Abstain from sex.
Ever the helpful husband, when our RN (who we loved)came in to see what questions we had, I asked "What about this #5?"
She laughed and said "I don't know why the hospital puts that on there. You have no restrictions on sex, just stop if you experience pain (duh)."
Ask your Dr, then take it slow.
Hi Zilly 74 - I'm wondering if it's for of a fear (psychological) than something physical because both of you are experiencing it and the body has a way of naturally defending itself to ensure certain things don't happen (again). It might be worth it to pass by one of your docs.
In 1975, I had my only confirmed bleed while having sex. It was called a berry aneurysm at the time. My AVM was officially diagnosed 1/11. Neurologist said I never had an aneurysm, that the bleed was from the AVM. I became VERY afraid of having sex because of my history. My neurologist told me that sex was no riskier than Zumba (which I do, pacing myself) and that bleeds are not always caused by exertion. They can happen in your sleep. I have been told by more than one doc to be sure and breathe. Sometimes when we "change clothes" we hold our breath without even realizing it.
Thanking you so much for posting this discussion, Zilly...I'm late reading this, but I'm sure glad I did! My sexual desire has also gone downhill, but I think it's a combination of mental and physical reasons.
Physically, who feels like sex when you lousy? Mentally? "Changing clothes" has not been as much fun for me as it used to be because of the headaches (less stamina, favorite positions cause them to come on quicker).
Then, when I am feeling well and "frisky"...my problem is a frightened husband who worries that too big of an "O" will kill me!
I've been too embarrassed to talk about this, so I am really glad you brought it up, Zilly. It helps knowing others are in the same boat! lol
Hi Zilly, I done a search for you and I hope that you find the info your looking for in this search : http://www.avmsurvivors.org/main/search/search?q=sex , I know a few members that have had issues with sex and sexual contact with AVM's and after AVM's removed. Take care and keep positive :)
Zilly thank you for this discussion I had radiation May 7 2015 for AVM in cerebellum. On steroids for swelling, Gabapentin and blood pressure medicine. Always had a healthy sex drive now can’t have orgasm. Hopefully things get better my husband has been so supportive and caring but miss this part of my old life don’t want this to be part of the new notmal. Thank you again for discussing this issue.
So its been 3 years and my sex drive is down to zero. I am having issues reaching the big o and its affecting my marriage. I'm no longer on meds so that can be the issue. I just notice I care less, feel less, and really don't care if I receive affection anymore. Ho hum. Sigh.
As a man that had an AVM in my right temporal lobe i have noticed a decrease in my sex drive as well and it does take longer to climax although im sure thats not a bad thing on the other side lol but to be honest i have noticed a change as well. I was never sure if it was the AVM, my seizure meds or just me getting older. I am not sure but from a male perspective i have noticed a change as well so you are not alone and hopefully it will change for all of us affected by this. A healthy sex life is an important part of a relationship and you have every right and all the support here to voice any concerns. Wish you well and hope this helps some Zilly.
Honesty about another change in our lives is helpful to hear about glad we have a place to share and hear about the changes in our lives and know I am not alone.
My headaches came about after sex and so did my bleed…so I was very scared for many years to get over stimulated & even til this day get a little worried BUT I keep trying to live a normal life…God bless!
Since I figured out that I almost always get a headache afterward, I keep Tylenol gel caps at the head of the bed and just take 2 as a preventive. That's not to say that I never get a headache anyway but maybe it's not as bad as it could be.
Mine is in my parietal lobe, but it's the same with me...decreased drive and I get the bad headaches after climaxing too. Now my husband is afraid of "getting me there" because he's afraid my AVM will rupture!
Thank you for bringing up this subject, Zilly74. I've been too embarrassed to ask my doctor about it (especially since my daughter is always with me at these appointments).