A Question For You Ladies....a Very Personal Question!

[MamaTrain]

I dont know really how to ask so I'm just gonna throw it out there and hope no one takes offense! I'm wondering about sexual dysfunction. I have felt so "off" for a while now and I just dont know how to deal with it. In my mind I am there (if you know what I mean) but my body doesnt cooperate alot of the time. When I am able to participate I often feel very strange afterwards. The big "O" used to bring a feeling that was wonderful...now it sets me off. Is this common? I am afraid to try the SSRI's because I dont need any more hurdles in the bedroom! :-) Thanks Ladies!

[flop]

Hmm, difficult question to answer. Personally I felt so "blergh" that the idea of physical exertion rather than sleep was a no-no. My long-term relationship fell appart because of my illness and trying to work a long-distance relationship due to my partner being at university. I went through a long phase of lack of libido which I was partially blaming on my SSRI but I think was more likely to be due to the fact that I was exhausted and depressed. Last few months libido has improved (still on SSRI). Current hurdle is trying to get out in the world to find a partner.

Flop

[firewatcher]

If you search through the archives you'll find a lot about this. I have it too. No interest, pain, difficulty "getting there," and bad symptoms if I do. My OB/GYN tried me on Estratest since my Endos thought my hormone levels were very low (barely functional) and it helped tremendously!

Unfortunately, all four Endos all agreed that more testing needed to be done and took me off the hormones...so back to unhappy, neutered, grumpy me. My husband is not real happy right now; we were having a second honeymoon of sorts. If you ask, 9 out of 10 doctors will pat you on the knee and tell you to relax, or have a drink, or whatever.....

Once testing is done in a month, I intend to go back on the pill to regain function since they are having a duck with me on hormone replacement therapy. My marriage is worth it!

[bjt22]

Twas the best of times, twas the worst of times....

I, too, have difficulty with getting tuned in and ready to go. I have found that a glass of wine helps with this. After I get there, though, well, over the past decade I've become multi-orgasmic if I can make it that far.

I'm useless for the entire following day.

[MamaTrain]

Thank you guys for being bold enough to answer! I was beginning to really feel odd about this and honestly I haven't really discussed it with hubby as I don't want him to feel bad and I know he would! It's nice to know someone else understands you since so many friends/family/doctors dont have a clue!

[firewatcher]

I kept mentioning it to my (previous) doctor who kept coming up with: "well, what do you expect you've _____________." (just had Mono, not sleeping, have two kids, blah, blah...)

It slipped away so gradually I just didn't remember how I used to feel, I just remembered it wasn't this way. My husband and I would have "mercy x" just to keep him coming home, but it was painful for me (he did not know.)

After the hormones started it was like a switch had been flipped: I had my sense of humor back, I had my libido back, I noticed how attractive some men were-including my husband! The down side was MUCH worse symptoms after "O" but I managed to control the aftereffects with Klonopin, sleep and limiting my "activity" (I too found that once the spot was found, it was very easy to pull the trigger multiple times!)

[janiedelite]

Yeah, this is such a bummer! I love my husband and before POTS I couldn't keep my hands off him! Now, the thought of the exertion it takes to "get there" is overwhelming. I also have pain that I never had before. I can't tell if it's dys-related or from the 2 hip surgeries and scar tissue. I often take a small pain pill dose on those nights and that helps. Someone mentioned a glass of wine helps... I think the pain meds kind of do the same trick. Most nights I focus on him. I'm usually too tired. Maybe once in every 6 months or so I can enjoy intimacy too. So depressing. I'm just 36!

I asked my PCP about this and she thinks it is mostly related to the fatigue aspect of POTS.

[firewatcher]

Yeah, this is such a bummer! I love my husband and before POTS I couldn't keep my hands off him! Now, the thought of the exertion it takes to "get there" is overwhelming. I also have pain that I never had before. I can't tell if it's dys-related or from the 2 hip surgeries and scar tissue. I often take a small pain pill dose on those nights and that helps. Someone mentioned a glass of wine helps... I think the pain meds kind of do the same trick. Most nights I focus on him. I'm usually too tired. Maybe once in every 6 months or so I can enjoy intimacy too. So depressing. I'm just 36!

I asked my PCP about this and she thinks it is mostly related to the fatigue aspect of POTS.

I have a question about the pain: is it almost like an "overstimulation?" like a burned spot is too sensitive? It's hard to describe. The only thing close is the way my scalp feels when I have a migraine, only it is not my scalp!

I too would have thought it was a POTS/neuro thing except that when I was on the Estrogen ALL my function came back!

[janiedelite]

I definitely have an ache that protrudes from my left hip still, and I can feel it internally also. I do have burning in my perineal area also, which is made worse by contact or friction . My mom has small fiber neuropathy also, and has burning in the same area. It varies from feeling like pins and needles to sunburnt to not being able to have my legs closed for a period of time from the pain. Within an hour or 2 after the act, things have settled down and I can walk normally again . Everything kind of aches down there, too, and I would say it resembles "overstimulation". The neuropathy pain I have on the rest of my body leaves my skin hypersensitive to touch - warm things feel hot, a slight touch feels like a scratch, and I have residual sensation of the touch for minutes afterward. It's kind of the same sensation down there too.

Just thinking about it makes my skin crawl more... Ugh! I also have mentioned to my GYN's about dryness, but all they suggest to me are various external creams. I just keep thinking I'm 36 and shouldn't have these problems!!!

It's interesting that when you were on Estrogen your issues with this went away. When I was on Clomid a few weeks ago, most of my POTS issues were better by at least 50%, but the pains I have (either burning or aching) were reduced by 95%! I assumed it was because of the increased fluid retention. I know that when I'm more dehydrated my POTS pains, perineal area included, are much worse.

[MamaTrain]

This is all very interesting ladies! I did have actual pain the last time but that hasnt been the case every time. My OB gave me some sort of vaginal cream to help with dryness and I took that to my ND and he had a bio-identical version of it made. I just keep forgetting to use it...maybe if I was diligent about it I may see an improvement. Being relatively young (I'll be 39 next month) and having these problems is just crazy to me. I have had dryness issues for quite some time but what I'm talking about is either pain during or once reaching "the" spot just feeling very strange and noticing the effects all the next day!

[erikainorlando]

I just have to add....I enjoy the intimacy etc...and don't really have a problem reaching orgasim BUT I get too HOT! And not in a good way!! Sometimes I have said...please get off me...I think I am going to pass out...just too HOT. NEver had this before..sweating... if I am well rested I can handle it much better...not as warm. Not sure all whats happening there..probably the whole temp regulation thing.

Erika

[MamaTrain]

That was too funny Erika! I have the opposite problem...I get cold and then I start to shake and then the moment is gone for me and it takes alot to get back there! My poor hubby is about sweating to death with all these covers so I can stay relatively warm! Good thing we have good men who understand!

[bjt22]

I can definitely relate to the "overstimulation" discomfort thing. I'll be blunt...I'm a very passionate person, and I WANT to be touched, but sometimes, without, um, certain aids, it can just be TOO MUCH. A glass of wine helps, as does the use of an over the counter lubrication agent. I am not "too dry"...that's far from the problem. It's all about the over stimulation. The wine helps dulls this, as I believe a slight amount of lubricant does as well. As I said upthread...if I can manage to get past that, I am more than good to go...think about it, ladies...all that blood pooled in the LOWER regions of the body...

[janiedelite]

I can definitely relate to the "overstimulation" discomfort thing. ...all that blood pooled in the LOWER regions of the body...

Makes perfect sense!

[potsgirl]

Ladies,

Due to a member of this Forum, I found out that my constant aching and burning around my vaginal opening is actually due to a condition called 'vulvodynia'. I had so many tests run for infections and none of them would ever come back positive. I didn't think I had an STD, since I've been with my fiance for 5 years, but it was driving me crazy that I had these nasty symptoms but no cause. You may want to look up vulvodynia on webmd.com or do a general search for it online. When I went to see a gyn specialist, it did turn out that it's what I have....Just an idea.

Best,

Jana

[Janey]

I'm totally the same and utterly with you on this one. I find that even if I get myself into it in my head (and it has to be on a good day and it takes a looong time to get in the mood), my down-belows just don't co-operate at all. They're not feeling it. On the odd occasion where all the hurdles can be overcome, and as long as it doesn't last long, I am okayish, but that's not very often.

[EarthMother]

Sexual function (or dysfunction) has been a passion of mine (only small pun intended ;-) for most of my life. The history of sexual myths or customs, sex during pregnancy, sexual desire and menapause etc. I often joke that I can't stand up at all, but I am amazing laying down in bed. Humor no doubt plays a big role in all facets of my life.

When I talk with women about bedroom issues, I usually recommend being very clear about their situation (wants and don't wants) with their partner. I'm a big fan of discussing sexual relaxations outside of the bedroom.

I've talked to dozens of women over the years who were struggling with intimacy issues, including some with chronic health problems and here are the things that seemed to help in some circumstances.

* Naked Tuesdays! Ok, it doesn't have to be Tuesday, and it can be more than one night a week. But for couples who are on different sleep schedules or for other reasons are missing time with skin to skin contact, having a scheduled time to just hold each other can really help. Its not about sex. For many couples, they decide in advance that this time is just about closeness. No talking. Just holding one another. For some women, it takes the pressure off of performing and allows us to gradually build up acceptable levels of tactical stimulation.

* Different positions. We need to have creative flexibility in all facets of our lives with POTS. Temperature problems (too hot, too cold) excertion issues, as well as orthostatic intolerance influence what feels good and what is a distrator. With some creativity (and occasional giggles) you may be able to find a position where one person can have blankets while the other one enjoys the breeze from the fan. Be mindful of what weight bearing you can do yourself and how much you feel good about assuming. Oh, and be prepared to change ... several times if need be.

* Go slow. Women and men reach orgasm differently. If I recall women are influenced by the parasympathetic system more during sex. (But, I could be misremembering.) Our pace may be different than when we were younger or before we developed POTS. If you can't schedule an hour ... consider getting this on your schedule.

* Be reassured. In addition to discussing these issues with your GYN, its a good idea to be frank with your other specialists as well. For me, my heart rhythm is always a trigger. Those skipped beats are an immediate 'deal breaker'. So when I had another Holter test last year, I made sure that I wrote down in my journal my sexual activity including the time of orgasm -- I glanced at the clock and wrote it down afterwards ;-) I wanted to make sure the report included notes about my heart function during sex, so that I could put my mind at ease. (I also made notes about doing situps, walking up stairs, being outside ... not just about sex. I used a separate journal with time stamps and details about the activities. It really helped me to see what was going on and when.)

Just some food for thought and fodder to begin a conversation of your own.

[jenwic]

I know what you mean about the skipped beats. I seems like just when I'm getting to the "best part" my heart gets going so fast then it skips beats which scares me.

I also have a problem with my heart rate staying up after it's all over so, ideally, I like to do it in the a.m.

[pat57]

Well! I was on 10 mg of paxil and switched to 10mgs of zoloft. 10 mg is below the therapeutic levels for use with depression , but is

for autonomic dysfunction. It interfered greatly with my sleep. It could easily take 4 hours for me to fall asleep. But they had another side effect that was funny in the beginning, but after a while I started to think I was crazy. Anyway I had an orgasm in my sleep every day. I kid you not. So it greatly increased my libido. SNRI's don't keep me up or cause hypersexuallity- thank God!

[janiedelite]

Thanks, Earth Mother. Great suggestions!

[MamaTrain]

Thanks for all the great input! I can see we are all very passionate about....being passionate!