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kellygirl

Effects Of Pots On Sexuality

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I hope that it is ok to discuss this here. I don't know who else to discuss with or ask about experiences other than those with the same condition. Has POTS affected your sexuality?

I have noticed that since the serious exacerbation of my symptoms the actual physiology of my genitalia has changed. It seems engorged and swollen but lacking in sensation. Sex is not painful, but is not enjoyable and on the two occasions that I have ventured to engage in sexual activity with my husband since July, I wound up in the ER the same night with extremely high blood pressure and heart rate and being dehydrated despite not "doing any of the work" during sexual activity. I can only think that maybe the engorgement in the genitals is from blood pooling? I do not have distended abdomen.

I am going for a GYN visit in a couple of weeks. I do not know if she is aware of POTS or even knows what it is.

Has anyone else noticed changes in their anatomy down there and that sexual activity triggers off symptoms?

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Hi Kellygirl,

Thanks for the post--I think, sometimes, we're all so focused on the minutiae of dealing with our everyday symptoms, we forget how many other aspects of our lives are affected...and that includes the sexy bits!

Personally, I've not noticed any anatomical differences, but sexual activity triggers me BIG TIME. The "big O" will set off an episode of dizziness, tachycardia and a feeling of general flu-like illness for a few hours after.

There are all kinds of things I have to avoid, and it *****...no morning sex because that would take me out of commission for the rest of day....no shower sex because the hot water and steam would turn me into a wobbly pile of goo....also, there's nothing sexier than hollering, "Crap! I might pass out!" three or four times a session. :rolleyes:

My husband and I take it in stride and make it work, but I can't say that I wouldn't like the ability to be a bit more spontaneous from time to time!

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Ophelialit,

Thank you for sharing. I am actually hoping the change in anatomy is POTS related and not anything else... I only pray I am not getting blasted into menopause, I cannot imagine having to deal with that on top of exacerbation in symptoms of POTS right now. It may just drive me over the edge :wacko:. Have your menstrual cycles changed? I had my cycle 3 times in one month (full cycle of 5 days each), with very heavy flow. In the months prior to the exacerbation and finally the revelation of POTS there were several months when I had just spotting or light flow, but I attributed it to hypothyroidism at that time because my TSH levels were high.

No menopause yet.... PLEASE!!!!!!!

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Hi! Here are some past thread on this topic:

http://forums.dinet.org/index.php?/topic/22946-mating-pg-arousal/?hl=sex#entry213914

http://forums.dinet.org/index.php?/topic/24188-sex-question-for-men-and-women/?hl=sex

http://forums.dinet.org/index.php?/topic/24746-an-embrrassing-symptom-help/?hl=sex

http://forums.dinet.org/index.php?/topic/26100-touchy-topic-intimacy-issues/?hl=sex

Also, I couldn't find the thread, but one other member and I have discussed that we both developed a varicose vein in our labia subsequent to all our other symptoms. Slightly different than what you describe but in the same ball park. My GYN, who is a nurse midwife and has other POTS patients and has also familiarized herself with EDS, thinks it is probably my flaccid vasculature from EDS in combination with blood pooling that has aloud the vein to become like this. We couldn't find anything in the literature but it is a good common sense theory.

Hope this helps.

Katie

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From the other side, early on, I had to limit my performance. Along the way, I did improve in this regard. I paid for it afterwards instead. For the most part, I have normalized.

Most of my symptoms were related to sympathetic over activity. Especially after the big "O" as someone called it. I would have to "hold on", and ride it out.

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Thank you Katybug for sharing the previous links and gjensen for sharing.

In reading the previous links some things clicked with me. In the year prior to the revelation of POTS I did experience oversensitivity and overarousal... usually connected with the emotion of anger, which I thought I was weird and did discuss with my physician and he was clueless. Talked about it with my therapist and she was clueless too.

I don't know how knowledgeable my EP is in this area, but once the GYN rules out anything anatomically wrong and my hormone levels being ok (hopefully), I am definately going to discuss this with him.

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As a dude i can vouch its better to remain horizontal

I'd better not find myself a boyfriend with POTS! With me having to remain horizontal, and him having to remain horizontal, that sure doesn't leave many options for positions ^_^

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One of the first neuros I went to for POTS randomly asked me if it was more difficult to have an orgasm. I wasn't expecting the question, and I'm sure I blushed, as my husband was in the room, along with two med students. For a split second, it dawned on me that, yes, it is much harder to have an orgasm. I don't know if she was thinking from a hormonal basis or a structural basis, I didn't ask.

I have been in menopause for about 5ish years. My "parts" have shrunk, as expected. When I was pregnant with each of my children a couple decades ago, my "parts" would really swell, and it was related to varicose veins. I don't have any varicose veins anywhere else, so it was surprising to me.

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Interesting, Sue. First, I hate all the well kept secrets women don't tell each other about things like varicose veins in your nether regions! First time I heard of it was when I went and my CNMW told me it's common with pregnant women. But, of course, I was her one and only non-pregnant women to ever show up with one. Second, did your varicose veins resolve?

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I remember reading a dr b slide on sexuality and pots... Seemed lots of no brainers... Make sure you are hydrated, have meds if needed, no shower before/ after don't overdue but overall a good thing for our bodies. That being said it has been rough to make adjustments. Horizontal. It does throw my system into a frenzy however gyn is thinking it may be due to a retroverted uterus which could aggrevate my nervous system.

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Hello everyone,

Just an update and thank you for your responses. I saw the GYN on Thursday, who had never even heard of POTS and when I gave her the brief explanation from the cardio point her immediate reaction was, well I don't think your heart rate would have any effect on your sexual functioning, then I had to go into explaining that it is from autonomic dysfunction, blah blah blah. Any way she ordered hormone testing which I am going to go for this morning. FSH, Estradiol, prolactin, hCG beta subunit, hemoglobin, TSH and a CBC. She thinks I could be perimenopausal. I am 46. Because I have been having unusual uterine bleeding, heavy flow 15 days out of the month she has also ordered a transvaginal ultrasound and wants to do an endometrial biopsy to rule out uterine cancer.

She did ask if it was more difficult for me to reach orgasm to which my answer is yes and she said that is a typical symptom of perimenopause. I guess once the testing gets back we can address the lack of sensation down there, until then I can hope it is perimenopause or autonomic dysfunction and not cancer.

I am so stressed out about all of these health issues. It has seemed my body has just fallen apart and it has been one thing after another since this diagnosis. My EP tells me that continued emotional stress will only exacerbate my condition, but how can one not worry when faced with so many unknowns and medical procedures!

Today.... frustrated, scared, bad dreams last night. I just want all this health crap out of the way and behind me.

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katybug, I can say the outer labia is not swollen and hard like when I was pregnant. But, to be honest, and we are on a delicate subject, I feel like that whole area is swollen and larger in a general way. I'm talking like when I stand in front of a mirror after bathing. It doesn't hurt like varicose veins, just seems fluid-swollen, so maybe that's an area where dependent swelling happens on a daily basis? I have no clue. And, of course, how do you find out if you are "normal"? I used to not have this swelling. And, as mentioned in my first post, the inner labia has shrunk, which is expected for menopause.

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Sue,

I am experiencing the same thing with it being swollen down there. Not only does it look swollen, it feels swollen and it is even more pronounced when I am on my cycle. The Gyn said it didn't look swollen to her, but it is not her vagina. I know MY parts and they are swollen. And dare I use the anatomical word, clitoris? It seems to have retracted way up high. It swells up with stimulation, but has no sensation. I didn't know if this was circulatory blood pooling from autonomic dysfunction, but my doc seems to have not heard my concerns in regards to that. I know my anatomy just as any woman does and even though it may look normal on inspection by a doctor, something is off. I hope I get it figured out. Wish more docs were more educated about this whole disorder.

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Hi kellygirl,

Sexual dysfunction is a known symptom of dysautonomia. I can't remember...have you found a dysautonomia specialist yet? You might find talking to them more productive on this topic because they understand how it affects the reproductive system (well, they understand better than other doctors.)

Also, could it be that the swelling is making it seem like your clitoral is retracted because the tissue around it is swollen?

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Katie, that's what I was just thinking regarding the clitoris, that it seems to be retracted due to possible swelling in the area.

Kellygirl, I hadn't thought about it until you mentioned it, but yes, the clitoris seems to be lost! It has somehow burrowed in more, but I'm thinking like Katie about the rest of the area swelling.

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The EP is the only specialist I have. I will be seeing him on Oct 26th. I hate that others are having this problem, but really I feel better knowing I am not alone

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I dont think anything with me is swollen.. but.. Yes it can be dang near impossible sometimes to get the big "O". Yes it can hurt like heck sometimes, like the poor guy is individually poking all my organs and after the big O, I feel very briefly like I might faint, then sometimes my skin gets really sensitive and painful for a bit and yea general flu like feeling for hours.. I try and reserve the small cry for when I am alone, but did not make that last night.. Just had it out right there..

Morning nookie is out of the picture for me, except on very rare occasions. Shower nookie is really not fun. My husband doesn't so much even try that anymore. :/

But yea I will feel bad for a day or two.. But like most chronic conditions, sometimes I am fine, other times not so much. Periodically I get really bad stomach cramps.. feels like labor in all honesty and it can last hours.. Last night was just an hour. I went to the doc for it once and they said maybe Uterus cycst.. but then they could not find any. (they thought that would explain the pain during sex as well..) Shockingly.. the test came back normal... of course.

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I researched what stimulates the sympathetic nervous system as that seems to be my biggest problem. It said that sex was one way. It works well for me, it will take me out of tachycardia and bring me out of having a dry mouth. I need to find the permanent sympathetic stimulant though.

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