kalamazoo Posted February 23, 2012 Report Share Posted February 23, 2012 I ask this because recently i see a lot of changes in my sex life. Im asking in a serious manner, I am now feeling miserable after sex. My cheeks get very hot and flushed to a point ive never experienced and immediatebly afterwards my heart rate elevated anf wont lower for a few hours. While sex is physically exerting I kbow, i suddenly am finding myself not able to keep up anymore and am almost scared to even do it now.. Quote Link to comment Share on other sites More sharing options...
issie Posted February 23, 2012 Report Share Posted February 23, 2012 This can be symptoms that you may have MCAD (mast cell activation disorder) - with flushing and a hyper response - could point to this. It is a problem and you're not alone with this. I've had this in the past also and it is very confusing and frustrating. Not to mention, not so good for either one of you. When I started using allergy type meds - things got better with this. Some people react to their own hormones or to their spouses/signficant others bodily fluids. They can do allergy testing to see if this is the case. I'm not having that issue at the moment and the only thing that I can think of that made a differnce was using allergy type meds and that elimated a good amount of the flushing type things and reactions that I was having. Just know, you aren't alone with this problem. Our autonomic systems have gone completely out of control and it affects us in this department to. Not sure if you'll have very many respond on this - but, know that we're not the only two with issues here. Quote Link to comment Share on other sites More sharing options...
jenglynn Posted February 23, 2012 Report Share Posted February 23, 2012 I am sure that a lot of people may not feel comfy answering this question... Those sound like miserable conditions, especially when you can't get your HR to go down...I am personally having a problem in this department as well... but totally un-related to your question so I apologize for adding to this with a completely different issue. My problem is with my Hubby...I am not sure if it sex drive related or he is no longer attracted to me OR he has been in caregiver mode so long I no longer seem "sexy" to him but like a patient. This flare I am in started back in April... but I didn't start having serious problems until Aug/Sept. and by November I was having multiple episodes of syncope each day. In Nov. alone I had three concussions from head trauma- 9 or 10 concussions total now post concussion syndrome.I still have such severe orthostatic hypotension and tachy that I cannot really stand and/or walk. My BP drops and get tachy when while sitting- but when I stand it is usually less than a minute before standing- and just standing still- no exertion- will get my HR to 160-200. Frustrating. Bladder is not functioning correctly, lots of headaches, adrenal surges, thyroid is all out of what. I have Autonomic Neuropathy, Undefined thus far Connective Tissue Disease and undefined autoimmine deficiency. Lots more symptoms but you get gist.. I am pretty sick and have to depend a LOT on my husband. I was in the hospital inpatient at Mayo for a couple weeks at Mayo but a week prior to going to Mayo and about 10 days after I was at our local hospital. So I was hospitalized for over a month.Now that I am home, believe me sex is rarely first and foremost on my mind. But I do really miss the intimacy between us. When I initiate he gets very uncomfortable. I can only think of ONE time that he initiated since I was released from the hospital. Prior this illness, we had a pretty active sex life- usually 3 or 4 times a week... sometimes more/ sometimes less. (I have always had autonomic dysfunction, I am sure of it... I have always had symptoms since a young child- but was never diagnosed until August of 2011). I am becoming to feel rejected. When I ask him about it, he just says that because I am so ill it makes him feel like he is being disrespectful to have sex with me. Not to get too graphic but there are only certain positions that are possible due to my orthostatic problems. He is afraid that I will faint, have major tachy, etc. But he has to help me so much with "physical" things due to the severity of the flare. I am wondering if he is just looking at me as a "patient" and he doesn't show the least bit interested or attracted. This is such a change, becauses sex was a very important part of our relationship prior.. and now he just seems to want to avoid it. So of course, I think it's ME. My looks have really gone downhill- I've lots 35 pounds and don't look very attractive. He has had to see so many things that I just wonder if he will ever see me as a wife and woman again. Sorry to hijack your thread but this has really been bothering me lately... Seem as if this darn disease has taken away so many things from me already.... This is just more thing to add to the list.... Sigh.Thanks, Jen Quote Link to comment Share on other sites More sharing options...
issie Posted February 23, 2012 Report Share Posted February 23, 2012 Hugs Jen,Maybe, he doesn't realize how you feel about it. You should tell him or print out what you just wrote and let him read it. Maybe, he thinks you're just too sick to even want to exert yourself. It does take energy and alot out of you when you're so sick. But, like you say the closeness is so important in a relationship. Even to just lie there and hold you and have that type of a connection is important - even if you don't have sex. Sometimes, guys don't understand this. We women are visual and feeling - we need the connection - even just a hand being held - makes us feel special and loved. If we don't get this - we take it personal. Try to communicate to him how you feel and that you love him and need the connection - despite this illness that we're all dealing with.Issie Quote Link to comment Share on other sites More sharing options...
kalamazoo Posted February 23, 2012 Author Report Share Posted February 23, 2012 I think part of the problem is were seen as too fragile, its rather bothersome. So sorry to hear about your problems Jen, your husband sounds like a great guy especially that he takes care of you, you guys will get thrugh all of this ... Its very hard. Crossing my fingers for you!And MCAD, I kept seeing that aroundthe forum, now ill be able to research, thanks! Quote Link to comment Share on other sites More sharing options...
sue1234 Posted February 23, 2012 Report Share Posted February 23, 2012 One other thing to keep in mind if you haven't done had a full gamut of testing is people with pheo have "adrenaline episodes" during sex due to the physical manipulation of their tumor. If that is even a possibility, definitely have a pheo ruled out.Sex? What is that? LOL I have completely lost my desire. Completely. It's not fair that women go through menopause and lose their sex hormones, but men continue to have them for decades. It is such a mis-match at that point in a relationship regarding desire for sex. Quote Link to comment Share on other sites More sharing options...
brethor9 Posted February 23, 2012 Report Share Posted February 23, 2012 Sue- I totally agree with you! The medical establishment really needs to get on the ball and do more research on female hormones and how to treat them properly. They literally run the whole female system(estrogen alone over 400 receptors) and when they are imbalanced so is everything else.....its such a simple idea to me just dont understand why the docs dont get it? (Oh, probably because most of them are men and they can take a little blue pill and problem solved) Sorry if I sound jaded.....sigh.....Bren Quote Link to comment Share on other sites More sharing options...
julieph85 Posted February 23, 2012 Report Share Posted February 23, 2012 My only problem in that area is dizziness. If I'm in anything other than missionary I get so lightheaded which makes it hard for me to enjoy myself, of coarse the hubby doesn't seem to care! Quote Link to comment Share on other sites More sharing options...
bellgirl Posted February 24, 2012 Report Share Posted February 24, 2012 I'm like Sue, no desire, but I don't withhold either...Cpap machines are not to sexy either...lol...but my husband loves me and I love him, and that's what's important. The older you get, the more you will realize that is what is most important in a relationship!! Being good companions is imperative in a marriage. The funny thing is that I used to have the opposite problem, which was great for him!! So things have changed a lot. We've also been married 30 years ; Menopause leaves one rather dry, too, which doesn't help matters, but there are products to help with that, too!! Listen to Issie, Jen; you definitely need to talk with your husband about this! And Kala, flushing is not uncommon, but you shouldn't be scared by that either; it's just another form of exercise!! Quote Link to comment Share on other sites More sharing options...
issie Posted February 24, 2012 Report Share Posted February 24, 2012 Kim,Maybe try using bio-identical estriol transdermal in your dry areas. I had a complete hysterectomy when I was 36. That and Red Clover helps alot.Issie Quote Link to comment Share on other sites More sharing options...
Leigh Posted February 25, 2012 Report Share Posted February 25, 2012 It's so great that many of you have such supportive spouses! My spouse hung in there for a few years, but couldn't take that I was robbing him of his peak years and couldn't remain faithful. I was too afraid to have sex because it caused palpitations so hard I felt my heart stop and it took my breath away. Kind of kills the mood--especially if you pass out at climax! Embarrassing! Quote Link to comment Share on other sites More sharing options...
julieph85 Posted February 26, 2012 Report Share Posted February 26, 2012 It's so great that many of you have such supportive spouses! My spouse hung in there for a few years, but couldn't take that I was robbing him of his peak years and couldn't remain faithful. I was too afraid to have sex because it caused palpitations so hard I felt my heart stop and it took my breath away. Kind of kills the mood--especially if you pass out at climax! Embarrassing!I'm so sorry that happened to you. It hurts so much when the person you love the most cannot be empathetic. The worst part of this illness is the lack of understanding from virtually everyone. I often think that if my husband could feel the way I do for just 15 minutes he would never complain again when I'm "too tired" Quote Link to comment Share on other sites More sharing options...
Lemons2lemonade Posted February 26, 2012 Report Share Posted February 26, 2012 sexual arousal has a lot to do with the ANS Quote Link to comment Share on other sites More sharing options...
kalamazoo Posted February 26, 2012 Author Report Share Posted February 26, 2012 It's so great that many of you have such supportive spouses! My spouse hung in there for a few years, but couldn't take that I was robbing him of his peak years and couldn't remain faithful. I was too afraid to have sex because it caused palpitations so hard I felt my heart stop and it took my breath away. Kind of kills the mood--especially if you pass out at climax! Embarrassing!I'm so sorry that happened to you. It hurts so much when the person you love the most cannot be empathetic. The worst part of this illness is the lack of understanding from virtually everyone. I often think that if my husband could feel the way I do for just 15 minutes he would never complain again when I'm "too tired"Leigh I'm so sorry, some people can be so selfish. It's his loss though!And gosh making anyone understand is like pulling teeth, its so hard to describe a feeling. Everyone feels love but everyone also describes it differently. This makes explaining something not many people feel even hard to explain. My boyfriend usually just hugs me because he doesn't know what to say. Sometimes its what I need, sonetimes it isnt. Quote Link to comment Share on other sites More sharing options...
blueskies Posted February 26, 2012 Report Share Posted February 26, 2012 Missionary position for me only now and very gentle and slow. And not as frequently. It depends on what my pots is doing. Heck, everything has to work around pots, doesn't it.. But I do have satisfactory sex. I'm post menopausal too, and I'm one of those lucky women who continue to have a sex drive. (Or I consider myself lucky, I know some women are finished with sex after menopause and I can understand that) I did lose my sex drive for a while but it came back. Much in the same way I lost my ability to sweat for 6 years but it came back (and then some, unfortunately, as I now sweat too much, too easily). I still have orgasms but not the great big ones that happened when I was younger but these really much gentler ones that can go for much longer. And they feel very good. Me being chronically ill has changed my relationship with my husband for the worse, unfortunately. I get impatient with myself and pain can make me snappy. Hubby still wants to have a wife that can be very active during sex (can't do that). that can work outside the home (can't do that), cook dinner every night (can't always do that) and be ready to go out when he wants to (can't always do that), but when I'm having a good day on the weekend he will just want to sit in front of tv all day and I would happy to get out of the house with him and go see a movie or something. We are finding it increasingly hard to connect and to be in sync. His work problems (he has a very physical job at an age when he really needs to be retiring), causes him to be very resentful.So, problems with my relationship with my husband has also had an impact on our sexlife. And a lot of those problems have been the result of me having pots. Quote Link to comment Share on other sites More sharing options...
bellgirl Posted February 26, 2012 Report Share Posted February 26, 2012 Men are completely different than women, not just with the sexual issue, either. They were created differently for a reason. Learning your spouses "love language" is very important. Doing simple things to make your partner happy is important, too. My family and friends don't completely understand or empathize in the way that maybe they should with me and this condition, and that can be frustrating at times, but God understands all we are going through, and He is by far my most important companion in this situation....I wouldn't have survived 13 years without treatment otherwise!!Issie, thanks for the tips...So sorry Leigh, Kala and Blue; this isn't easy...especially for you younger ones!! I will say a prayer for you... Quote Link to comment Share on other sites More sharing options...
tinkerbella Posted February 26, 2012 Report Share Posted February 26, 2012 This is the one time I feel sad, due to the lack of touch. The lack of a hug from a man of my own in my life as there is none anymore. I'm divorced now but I was left in an ER when they thought I had a blood clot in my lung. Long story.....he went off to drink and fell asleep and I woke up and finally found him and said get lost you loser.Sometimes I wish I could go on a dating site, but what would I say, Loves long walks on the beach. Must be willing to push me in my wheelchair? Don't be scared when you hear heavy breathing when I answer the phone, no I wasn't just having sex., My sexy raspy voice means I'm dehydrated and no I didn't work on a sex phone line,Must have good sense of humor, Have good knowledge in medical equipment, Must be able to carry my extra heavy back up back pack if you're still interested...lol~ I hear all the free site are scary, and the good sites send fake emails to you. I pray that God will aim the right man in my direction and I don't faint and miss him. lol~ Maybe one day I will comeback and have something great to add ~ Quote Link to comment Share on other sites More sharing options...
jenglynn Posted February 27, 2012 Report Share Posted February 27, 2012 I just wanted to thank Issie and those of you who encouraged me to communicate my feelings and fears with Rob (my hubby). We had a long talk and realized that both of us were just really afraid in our own way. Without going into too much detail, my personal health situation makes sex difficult at best, yet not impossible. But it isn't really the sex that I'm needing, it's the contact and affection. Rob admitted that I seem so frail and ill that the thought of sex often seems out of the question, and because at this point he is my primary caregiver, plus we have SIX children (ages 8-15), and his mom newly placed in a nursing home after a bad fall- she is 78 years old and has uncontrolled diabetes and we just found out, early stages of dementia. Just last week when he went to visit, one of my fears came true- she didn't know who he was for awhile and then she had a sudden burst of anger with him when she did remember him (long story- but she does not understand nor remember why she is in the nursing home, he is an only child and his dad died when he was 13- we tried to care for her but now with the dementia AND the diabetes they have trouble controlling in a medical facility, with 6 kids and my condition- we just realized it wasn't safe to have her with us). That is another huge stress going on. As an only child, he feels so responsible for her and is heart broken that she is so angry at him for putting her in a "home". If I wasn't so ill, we might be able to do it, but for now it just won't work- and he's riddled with guilt.To make matters worse, he lost his job in December (he was an independent contractor working on a large project with 2 others- he works as a structural steel detailer, meaning basically he does the dimensions for the steel in large projects) He lost his job when I was admitted to Mayo because they had a large deadline coming up and he needed to work 70+ hour weeks for the next 4-6 weeks in order to keep up: with me being at Mayo (an hour from our home), his Mom,and six children at home there was just no way he could devote that time so he was terminated I guess is the word. He was pretty upset because he had devoted so many hours to this project already but really, as I told him, what else could he do? And we knew after my 2 weeks at Mayo I would be going to acute inpatient rehab and getting 12 weeks of IVIG infusions (only received 3 because I went through a very nasty rejection- but that's another story) I was in the inpatient rehab for another 2 weeks and had been in our home hospital for about a week prior to Mayo- so I essentially was hospitalized for almost 5 weeks (from Thanksgiving until New Years). So we talked and I think we both have a more clear understanding on where we both are. Really, for the most part, sex is not a priority and not really an option most days because of my health- but I need some contact and affection. And he's been afraid to even be too affectionate with me because of my health and what he sees as fragility (I've lost 40 lbs in the last 3 months) and that I will misinterpret him. So talking it out was the best thing, thank you. So seemingly simple but I just hadn't thought of it from his perspective. He has definitely gone through a life changing several months, just as I have as well as the kids.We are both just mentally and emotionally drained and exhausted. Physically, I've not improved- in fact I've gotten worse from the rejection. We don't know what kind of treatment Mayo has in mind because of my dangerous reaction to IVIG. I go back in late March after all the IVIG is out of my system and they will give us the options then. I think at this point, we are both tired and worried- we need the comfort from one another but both were afraid to seek it out. He never wanted to bring it up with me because he's trying to be strong for me and I felt rejected and humiliated that my husband looked at me as a patient and not a woman (he swears this is not the case)! So I told him that I need to be held and cuddled and he knows that sex is not really what I want or need now and is okay with that. He is also aware now that I still have the "physical" needs of a wife; to be hugged and kissed. And he has the same needs too. I think both of us are really struggling with our own individual issues and we really need to make an effort to be there emotionally for each other. It's so hard with this condition, because at this point my energy is zero. I'm really struggling with a lot of things, and at the top of the list- WHAT do I do next?? I've lost a lot of faith in the medical community because they don't seem to have any consensus- from doctor to doctor- not just facility- how to deal with these 3 conditions I have (autoimmune deficiency, autonomic neuropathy, and a "connective tissue disorder"-likely EDS but refused to test me because Mayo will not recognize a link between EDS and ANS dysfunction. Not to mention the daily pain and discomfort we all live with daily.Sorry- I went on quite a bit and got very off topic but thank you for your advice. It made a big difference and we both feel better. I realize how lucky I am to have to have such a supportive husband. Thank you all so much. If you have any advice to offer on any of my other issues, I will happily listen Thank you, thank you- as always- Jen Quote Link to comment Share on other sites More sharing options...
kalamazoo Posted February 27, 2012 Author Report Share Posted February 27, 2012 I just wanted to thank Issie and those of you who encouraged me to communicate my feelings and fears with Rob (my hubby). We had a long talk and realized that both of us were just really afraid in our own way. Without going into too much detail, my personal health situation makes sex difficult at best, yet not impossible. But it isn't really the sex that I'm needing, it's the contact and affection. Rob admitted that I seem so frail and ill that the thought of sex often seems out of the question, and because at this point he is my primary caregiver, plus we have SIX children (ages 8-15), and his mom newly placed in a nursing home after a bad fall- she is 78 years old and has uncontrolled diabetes and we just found out, early stages of dementia. Just last week when he went to visit, one of my fears came true- she didn't know who he was for awhile and then she had a sudden burst of anger with him when she did remember him (long story- but she does not understand nor remember why she is in the nursing home, he is an only child and his dad died when he was 13- we tried to care for her but now with the dementia AND the diabetes they have trouble controlling in a medical facility, with 6 kids and my condition- we just realized it wasn't safe to have her with us). That is another huge stress going on. As an only child, he feels so responsible for her and is heart broken that she is so angry at him for putting her in a "home". If I wasn't so ill, we might be able to do it, but for now it just won't work- and he's riddled with guilt.To make matters worse, he lost his job in December (he was an independent contractor working on a large project with 2 others- he works as a structural steel detailer, meaning basically he does the dimensions for the steel in large projects) He lost his job when I was admitted to Mayo because they had a large deadline coming up and he needed to work 70+ hour weeks for the next 4-6 weeks in order to keep up: with me being at Mayo (an hour from our home), his Mom,and six children at home there was just no way he could devote that time so he was terminated I guess is the word. He was pretty upset because he had devoted so many hours to this project already but really, as I told him, what else could he do? And we knew after my 2 weeks at Mayo I would be going to acute inpatient rehab and getting 12 weeks of IVIG infusions (only received 3 because I went through a very nasty rejection- but that's another story) I was in the inpatient rehab for another 2 weeks and had been in our home hospital for about a week prior to Mayo- so I essentially was hospitalized for almost 5 weeks (from Thanksgiving until New Years).So we talked and I think we both have a more clear understanding on where we both are. Really, for the most part, sex is not a priority and not really an option most days because of my health- but I need some contact and affection. And he's been afraid to even be too affectionate with me because of my health and what he sees as fragility (I've lost 40 lbs in the last 3 months) and that I will misinterpret him. So talking it out was the best thing, thank you. So seemingly simple but I just hadn't thought of it from his perspective. He has definitely gone through a life changing several months, just as I have as well as the kids.We are both just mentally and emotionally drained and exhausted. Physically, I've not improved- in fact I've gotten worse from the rejection. We don't know what kind of treatment Mayo has in mind because of my dangerous reaction to IVIG. I go back in late March after all the IVIG is out of my system and they will give us the options then. I think at this point, we are both tired and worried- we need the comfort from one another but both were afraid to seek it out. He never wanted to bring it up with me because he's trying to be strong for me and I felt rejected and humiliated that my husband looked at me as a patient and not a woman (he swears this is not the case)! So I told him that I need to be held and cuddled and he knows that sex is not really what I want or need now and is okay with that. He is also aware now that I still have the "physical" needs of a wife; to be hugged and kissed. And he has the same needs too.I think both of us are really struggling with our own individual issues and we really need to make an effort to be there emotionally for each other. It's so hard with this condition, because at this point my energy is zero. I'm really struggling with a lot of things, and at the top of the list- WHAT do I do next?? I've lost a lot of faith in the medical community because they don't seem to have any consensus- from doctor to doctor- not just facility- how to deal with these 3 conditions I have (autoimmune deficiency, autonomic neuropathy, and a "connective tissue disorder"-likely EDS but refused to test me because Mayo will not recognize a link between EDS and ANS dysfunction. Not to mention the daily pain and discomfort we all live with daily.Sorry- I went on quite a bit and got very off topic but thank you for your advice. It made a big difference and we both feel better. I realize how lucky I am to have to have such a supportive husband. Thank you all so much. If you have any advice to offer on any of my other issues, I will happily listen Thank you, thank you- as always- JenThat's great that you talked to your husband, talking especially involving this type of situation is the best thing. I had a complete breakdown the other night and my boyfriend simply said 'I will always love you and whatever you go through, I'll go through" That's the exact type of thing I needed to hear. A significant other can be the best medicine. Quote Link to comment Share on other sites More sharing options...
Annaliese Posted February 27, 2012 Report Share Posted February 27, 2012 I found i used to have a lot of flushing before i realised i had low blood volume. After starting florinef, this stopped. Blood is redirected during sex, perhaps this creates a blood deficit elsewhere which results in unpleasant effects. Is it possible you have low blood volume? Quote Link to comment Share on other sites More sharing options...
issie Posted February 27, 2012 Report Share Posted February 27, 2012 I'm glad that what I said helped and things are looking brighter for you - closeness is so very important. It's amazing what good commuication can do.Issie Quote Link to comment Share on other sites More sharing options...
bellgirl Posted February 27, 2012 Report Share Posted February 27, 2012 Just being honest and open makes all the difference in the world. In this life, there are so many issues in relationships, anyway, and with us, it is magnified, but just taking the time to really talk can really help. Glad that you were both able to see life from the others perspective...that's huge!! Joy, Kim "Hugs" to all Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You can post now and register later. If you have an account, sign in now to post with your account.