TOPIC: ITP and sex

Hi! I’ve been reading posts on here for a while now and most of the questions I have have been answered or at least discussed. But one has not (or if it has I missed it)… I’m sorry if this is an inappropriate question or in the wrong section; I posted in this section to try to keep from offending anyone but please tell me if I crossed a line.

Anyway my question is when/whether it’s safe to have sex when you have ITP. (I just mean safe for me due to having ITP; I would only be sleeping with my husband.) When I was first diagnosed my count was below 10,000 and one of the first things the dr. said was that it’s not safe to have sex bc of possible bruising which could lead to internal bleeding. I was devastated. But some of the posts on here and the old board seem to indicate that people not only have sex while they have ITP but have babies (and healthy babies!) too. So I’m very hopeful now. I’m really sorry to ask such a personal question but it anyone can help me out here I’d really appreciate it.

My counts are okay right now (kept in check by meds) but have fallen steadily without meds, so I’m wondering if sex is okay with higher counts (maybe to a certain number) or if you are careful, and also if I should get a second opinion… I do plan to ask the dr about this (the dr might have just said it bc I had just been diagnosed and they were trying to keep my count up), but does anyone know of a certain count number or symptoms that would make them wary of having sex? Or okay with it? Has anyone else’s dr said they should not have sex bc they have ITP? Does it lower platelet counts? Is there somewhere I can check for more info on this?

Sorry again and thanks for any help.

I don't think that's an inappropriate question and I'll tell you why -

When I got my first mouth blister, I called in to the hospital because it freaked me out so bad. I was already low - like 18 or something - and I knew the blisters to be the sign of a quick drop, so I was afraid that I was crashing completely.
Anyway, it was late at night and the nurse told me to go get labs done first thing in the morning. I asked if there was anything I should do that night. She told me signs to tell my husband to watch out for - like if I were to become disoriented or stuff like that - she was referring to signs of a spontaneous brain bleed though, not internal bleeding like that. She also said, "And definitely do not have intercourse."

I probably never would have even thought about that if she hadn't made the comment.

So it's a question worth asking -
But just as with all the other things discussed here - there will probably be a bunch of differing opinions between doctors and you'll ultimately have to make your own decision.

There is risk in everything we do. This is a quality of life issue, in my opinion.

I'm with Michelle, you're likely to get an interesting range of responses.

I'd say part of it will be your own observations and responses to ITP and general well being as to what count you'd engage in different activities
* At what count do you have "wet" bleeds versus minor bruises and petichaie.
* Is the spleen enlarged (don't want it to burst)
* Does the activity raise your blood pressure and heart rate to a point that would increase stroke or intercranial bleed risks
* etc

If they can do emergency surgery at 50K, as long as your not hanging from Chandeliers or doing BDSM, I'd say you should be able to have some fun at higher counts. If you're significantly smaller than your partner or like a vigourous style, you might consider add some spice and explore alternative postions that are less likely to bruise you.

It really depends on your counts and what symptoms you have. I was told no sex below 50. My husband is more cautious than I am. I've never been told to not have sex, just be careful. If your counts are good right now, I wouldn't worry about it.

Thank you! You're all very helpful. I really appreciate it.

I was never told not to have sex at low counts, nor did it occur to me not to. 30k is usually considered safe for most things, so I'd imagine that you could have sex above that count without a problem.

See i usually bleed after sex (one time i remember it taking 2 days for the bleeding to stop), but with my most recent boyfriend i didn't. I will be honest and say that it's usually worse with condoms than without. i have to balance safety with pain. i get myself checked between partners and am clear at the moment.

i think it varies from person to person - when i was on the steroids i was single, but even so, i just wasn't in the mood for it at all and didn't feel especially attractive. i also found the steroids left me completely desensitized so orgasms just simply didn't happen.

I'm @ 14 and asked my Hemo today and he said sure - might be a little bleeding but shouldn't be a problem. The bigger problem is with 90mg of pred I don't have much interest

I have been living with ITP since 1972 and in the last 10 years or so with a count below 5 and I have asked about having sex and been told that I could but be very careful. I must admit that it does put my husband off so it does not happen very often and I am sore for days afterwards and occasionally bleed a little. I am glad I was not told not to have sex as I would be a very frustrated virgin by now!!!

I had never imagined that having sex would be a no-no for an ITP patient. I was diagnosed with ITP when I was six years old and up until I went in remission at 16 the only concern, other than involvement in contact sports, was that I be monitored very closely when I got pregnant, and up until that point I had not been sexually active.

I relapsed when I was 27, after having two children, and the sex issue was never raised. My doctor usually asks me for an account of the bruises I have so that she knows I'm not bleeding spontaneously. So, my only concern was having to give an explaination for a mark that was a result of playful sex... A sly grin is usually explaination enough.

I have never had any issues with bleeding after sex, even with counts under 20. I think it boils down to your comfort level, and how well your body tolerates low counts. If you were having wet bleeds, or a lot of unexplained bruising, you may want to be extra careful and not try anything to adventurous. When I was younger and insisting on riding my bike and going ice skating my doctors insisted that I wear a helmet. Can you imagine putting on your lingerie and reaching for your hockey helmet before jumping into bed?

Blessings,
Hauna

No, just stay away from the head board.

I am at a loss here, my husband was diagnosed with ITP in June and we were just married in April.
He has been on 80 mg of Prendnisone and tells me he has no sex dive whatsoever. He is down to 10 ml now and I am wondering why he still cannot preform.

He says he doesnt think about it, has no sex drive, doesnt want it at all. I am thinking about asking his doctor if he can take Viagra. This is killing our marriage for me. It has been 8 months.

Am I the only one on this forum that is having these type of problems???

Michelle - the effects of steroids can take a very long time to wear off. I can imagine how hard it would be to be newly married and not have sex, but you're almost at the home stretch. Give him a bit more time...maybe a month or two after he is off of Prednisone?

I don't know that I'd go the Viagra route just yet. It's a strong drug that might cause problems....

He may also be depressed, diagnosis with a chronic illness can do that. And prednisone can make depression worse.
Erica

Sorry to offend anyone by posting on the secret women's business but i am a 23 year old guy with ITP and my counts are actually pretty low right now (at 3) so i wanted to know how this affects my sexual lifestyle. Baring injury prone activities i am leading a pretty normal life right now so what would be a safe count to continue having sex again?

@Michelle- Ya i also have gone through that phase (when i was on high levels of prednisone) that i did not have a sex drive but dont worry as the doc tapers the levels, he will feel better again

Heh clearly we need a secret men's business area too! Madridista, I'd say it's probably worth plucking up the courage to ask your haemo - we might have ITP, but we're still human and we still want to have sex, but have concerns about how that might have an effect on our bodies. I usually bleed during sex (the ITP explains a lot - for years it was freaking me out), but i don't really know whether it'd do the same to you or if you'd just bruise around your groin. My advice would be to take things slowly and see what your body can and can't handle.

Michelle, I really feel for you, especially as you're a newlywed, but please be patient with your husband - in sickness and in health, right? Most of us have been through the works with prednisolone, and when it's not making you feel like a gargantuan, flabby heffalump who no one could possibly find attractive, it's switched off your mojo for several months. I tried sex once whilst on pred and as hard as the poor guy tried to give me some enjoyment, nothing happened. Even after I'd finally stopped taking it, it probably still took another month or so before i had my sex drive back. I know this is horrible and feels like it may never end, and you have every right to feel frustrated, but he's probably feeling fairly emasculated himself and right now he needs your love, understanding and support - it's not your fault and it isn't his either. I promise that it's not you, it's the drugs and that once he's off them, things will eventually go back to normal.

ya so far i havent had any bruises and was had not really given it a second thought until i saw this discussion. Only aftr seein this i started wonderin whether it would affect me or not

@madridista, I have a question from you, I have been engaged to a ITP male person soon to get married. what are the chance for healthy married life and for healthy baby as I am very much concerned about this right now.

Suzi - the medications that he uses will more than likely affect his health more than the ITP will. As far as children, they may have a tendency to inherit autoimmune disorders. but that doesn't mean that they will.

Illnesses can strike anyone at any time, so there are never any guarantees in life for anyone.