How Do Any Of You Have Sex?

[rapid_reader]

I'm really unsure of posting this here but I think it works given the nature of this thread...

So many people find that their POTS flares up after sexual activity. I feel like my sex life is over before even starting. I may be jumping the gun but examining my situation it seems that I will most likely experience the same negative effects mentioned in this thread so far.

Alright now onto the primary reason for this post. It has already been established that I haven't had sex but, *cringes* slowly I have been learning the art of self pleasure. Originally I started this to see if the claim was really true that it could help with another one of my illnesses. This has been going on for over a year and I defiantly believe I'm way past the beginners stage. After all this is a thread for those who have already experienced the full act, From the perspective of this thread I have gone far enough to feel I can post...if that makes any sense.

The thing is I find it really helps me feel better (the hormones released maybe?) It is not painful at all in fact it feels really good. I mean just because I can tolerate self pleasure doesn't mean the same applies for when I go all the way. Yet I have done enough that I am pretty confident I won't have problems. Yes my POTS symptoms do intensify but they return to normal 15 minutes later. Nothing bad enough happens to make me feel the need to stop.

So yeah...If anyone wants to state an opinion please do.

[Ernie]

Hi,

For me and the others in my family who have this disorder we have the opposite problem. We have a very high sex drive, male or female. We can have sex everyday and we think about it all the time.

We have the hyperadrenergic POTS. Our sexual problem is so bad that I wonder if we secrete extra phehormones. We have lots of proposition by strangers of the opposite sex. It become a hassle in the long run. I some propositions when I was in my power chair dressed with old clothes!

[Sophia3]

True

[icesktr189]

I feel really bad about not wanting to with my fiance but in truth i am at my worst with my POTS since coming down with it 3 years ago. Now i have constant vertigo/dizziness, adrenaline surges and all these crazy other symptoms. The worst is that i also have some depression and an overlapping panic disorder. Seriously having sex will throw me into a massive adrenaline surge/panic attack.

I wrote earlier on another thread, but it feels like i am being poked in a organ when i have sex (yes i am finally going to a doctor!) haha

I feel like my body is going out completely on me right now, and most of the time if im not sleeping, im crying because i am so miserable. It makes it really hard to even think about having sex.

Because of my panic attacks, i am starting my anti depressant soon. That in itself is going to kill my sex life. Last time i took lexapro, i never had the urge EVER. it sucked, but its nothing compared to how i feel now.

I think my fiance understands and that is why he does not pressure me. He sees me constantly lying down on the couch or in bed looking miserable. I dont think he would even want to if i were to ask him to because he would feel so bad. :[

[Lovebug]

I can relate to your last statement, Dani. My husband is afraid to touch me sometimes. He says, "I don't want to throw you into a tizzy"....LOL! I just tell him I'm fine (at the moment) and that he better "get while the gettin is good".

[ItsMe]

I'm so sorry for you and for all the other fellow POTS sufferers who can't have sex at all or nearly as much as they'd like because of POTS. I am one of these people.

My main problem is my Interstitial Cystitis as well as Vulvar Vestibulitis and Vulvadynia. (all caused by my POTS)

This on top of my regular POTS symptoms makes it very tough.

Because of the pain I get scared to even try... it's so horrible how much POTS can affect one's life.

I have so many horrible symptoms and POTS has really taken my life from me in so many ways but this one is the worst for me because it robs my husband and I of intimacy that can only come when joining together as one.

It's very depressing I know and I am so sorry to all of you who also have this problem on top of all the other horrible POTS problems.

I still try, I also keep track on the calender the days we actually get to with little hearts. Sometimes that helps me feel better to see there are some hearts on there-some months are better than others for sure. There have been some months with no hearts at all or only one or two while some have 5-6.

Good luck to ALL of you, I hope that you all find ways to have sex with your the one you love despite POTS' many road blocks.

[issie]

I have hyper POTS - so sex does bring on a POTS attack for me and I have anxiety type symptoms from the adrenal surges. But, loving your significant other - is so worth what ever the connection may bring. Sometimes just the change of hormones that occurs in being close to someone can bring on these symptoms - you don't have to be doing anything. So, just realize that we have a hyper response to these hormones and adrenal surges - that is just a heightened response to what is ordinarily normal for most people.

But, loving someone and caring for them and their needs is worth what ever it is that we have happen to us - and remember if it's not all that pleasant it is only a temporary response and will subside and hopefully some of it will be good for you too.

[icesktr189]

WOW i wonder if my bladder is actually being bumped too.

I have a MASSIVE bladder. No joke. As a kid i had chronic UTIs, so they did a test where they cathed me and filled my bladder with dye to watch me urinate it out. It took over 2 bags. They said they have never seen anything like it. Same when i was pregnant and my ultrasounds that needed me to have a full bladder. The techs could not believe how huge it was. I was also "potty trained" at 12 months! (I just never had to go pee)

No one has looked into this, and i think the pregnancy made things worse with my bladder. Thanks for writing that! It helps to look at different alternatives :]

[Lovebug]

Hi Issie,

My husband & I don't have children either and I truly feel this disease has robbed us of the option. We never really tried to get pregnant but we haven't prevented either. However, with my health problems the last few years, I just can't. We both get really sad/lonely during the holidays but I try to look at it as we were not meant to have children. Thanks for sharing that!

[issie]

Hi Issie,

My husband & I don't have children either and I truly feel this disease has robbed us of the option. We never really tried to get pregnant but we haven't prevented either. However, with my health problems the last few years, I just can't. We both get really sad/lonely during the holidays but I try to look at it as we were not meant to have children. Thanks for sharing that!

Sorry, for your loss - and that is what it feels like - a loss. But, just keep in mind the good that you CAN experience and don't dwell on the what-ifs and if-onlys. Things are, how they are and you can't change that with no amount of wishing. So, try to not look at it that way and look at the other good things in life. You can fill your life with other important things and give your time to others that may need your attention. When you reach out to others and try to help others, it gives you a sense of purpose and then that need to give to a child (that isn't there) is lessened. We never felt that we wanted to adopt, because we've been active in religious pursuits, but that is an option that can be considered for you, IF and only IF you have enough health to give that child what it needs. If the health isn't there - don't feel a bit of regret - because you have to take care of you and yours first. Being together as a couple and working on that relationship can bring purpose in life and give you much joy.

[janiedelite]

We haven't been able to have kids either. We even did extensive fertility testing and everything came back normal. My PCP said my body just must be too stressed with my illness to conceive. We really do want children, though, and decided to become foster parents. This way, we could better assess what I would be capable of physically managing as a parent and the children wouldn't be permanently placed in our home. However, this is a very stressful calling and many here wouldn't be healthy enough to attempt it anyway. But I just wanted to present it as an option since there are so many needy children who need caring foster parents (regardless of their physical abilities). Please feel free to PM me for more info.

[Lovebug]

Thanks issie and thankful! I definitely love volunteer work but need to do much more of it. The last thing my husband & I did was adopt a nursing home at christmas. I'd like to do more though. As far as being a foster parent, my husband has actually mentioned that to me but I'm not sure I could do it (energy-wise). I have thought about it though b/c it would serve another human in a way they so desperately need. It is definitely something to think about.

[icesktr189]

I am very lucky to have a 1 year old girl, but in truth, if she was not an "opsie" i would not have had any children. The pregnancy was very hard on my body and really made my POTS ten times worse.

Also taking care of a child everyday is downright exhausting! If it was not for my support system i dont know what i would do. I feel like a bad mom sometimes because i cant go to a park with her or walk around the mall. It stresses me out because one day she is going to have school activities or something come up that i wont be able to do. I dont want her to suffer because i have this illness. It just stinks that i cant really enjoy her like i would if i were not sick all the time.

[mwise]

Sending hugs to all of you. Issie said it well. Volunteer work is wonderful and being a foster parent especially to older children can be a blessing to all involved. There is always sooo much love to give and get in return.

Dani-God has blessed you and I know it can be stressful and exhausting with a 1 yr old. Just enjoy each day with her. Set little goals to do things age appropriate for her. She will love you unconditionally no matter what. I have sophmore twin daughters that are active in all types of sports and extracuricular activities besides school programs. I pick and choose what I can attend based on how I feel. Some days i attend with a friend or family member using a wheel chair or if I am feeling able to walk use my rollator (seat) walker. You would be surprised at how many parents and school officials are very accommodating and helpful. I have even had friends and family video record or use a web cam so I can watch their activities and programs. Technology does make things so much easier today. It is well worth the investment.

Dani-Just take each day as it comes and enjoy that time with her. She will grow up fast.