This is going to sound very personal but does anybody else suffer with lack of libido or even pain during lovemaking? I almost cried with relief when I recently read that people with MPD's have loss of interest or, often, painful sex. I was sure my husband felt I didn't love him anymore because I didn't want intimacy because of the pain. I had to show him and say "See, I do love you more than anything, I just can't help it" he is a wonderful husband and so understanding so I know its my own guilt about the lack of intimacy in our marriage that is eating me up. Not many husbands would understand as much as he does. I have even asked him to find someone else as I have felt that guilty but he loves me and wants only me. The tears are streaming down my face as I write this. I just want to know if anybody has the same problem.
Lack of libido: This is going to sound very... - MPN Voice
Lack of libido
Hi,
Its a difficult subject, one that a lot of people find it difficult to talk about.
I dare bet your are not on your own, i know its certainly affected me, and being a typical bloke it took a lot of work and a beer or two to explain to my wife why i had issues in that department.
Since i have been on Rux things have improved for me, not as much as i would want, but i think now the problems are more in my mind, fear of failure and all that.
I applaud you for taking the time to post, as it is a difficult subject to discuss, its good you have an understanding partner and i think thats important for all of us, but i think as you have done you have taken time to discuss it with him which i think is the most important thing as often people can jump to the wrong conclusions about why things change in a relationship.
I cant offer any words of advice but just wanted to say i dont think you are on your own.
Paul
So touched by your reply Paul. It seems you are fortunate enough to have an understanding partner which is vital for anyone with this problem. Give her a big hug from me as she is a special lady. Wishing you all the best xxxx
Ditto on all counts Jilly. Its another thing which chips away at our quality of life. Thank you for being brave enough to bring it up. X
I am so relieved I am not alone with this. I have never felt like less of a woman, even when I lost both breasts to cancer. I miss the intimacy so much. I am afraid to even kiss my husband because I can't offer him more and even if I get aroused I have immediate, intense pain like the worst period pain ever. I have read the responses to my husband to prove its not just me, not that I needed to prove anything to him as he has witnessed the pain. As for penetration, forget it, you might as well just cut me with a knife. It's so unfair that people with an mpn have so much of their life taken away without having the intimacy of a loving partner being taken away as well, cruel, cruel life.
Hi Jilly, I am so sorry to hear that you are experiencing this, and not just the emotional pain but physical pain as well, it is very brave of you to share this with us and I am sure there are many people who are experiencing this and will be grateful to you for talking about it. I would suggest that you talk to your GP about this, especially as you are experiencing physical pain, they may be able to help you, and maybe suggest that you speak to a counsellor or therapist which may help you with your feelings and thoughts about intimacy with your husband. Maz
Incredibly brave of you to be so open about this and nearly cried with relief on reading what you wrote, having same problems for past few years, but had never ever associated it with MPNs...would be so good if sufferers could find solution....can we all keep in touch re this and not let it slip under the carpet. Thank you. Thank you. Tinkerbell13
Now you have me in tears Tinkerbell. I must admit it took a while to build up the courage to write my post but I am so glad I did now, the response has been heartwarming. Always here if you need to chat, now stop crying and have a strong cuppa because you are not alone xxxxxxxxx
You are a complete star! MPN folk are a remarkable lot - we are in a very special club, aren't we! If you find anything out that helps, do let us know, and likewise from this end. Tinkerbell13 XXs
Hi Jilly, I didn't know that this was yet another effect of the condition - have to admit it's a relief to know that! I've been putting it down to the tiredness and, more recently, the size of my spleen, hoping that once I'm taking the Rux it might improve with more energy & less spleen. My husband is very tolerant, bless him, and if you don't mind, I think I'll be able to start a conversation with him explaining that it's not just me being cold or distant. Thank you Jilly, good luck to you xx
Your more than a welcome CT. I didn't realise I would receive such heartwarming replies and that my post has actually helped people like me. I hope the new meds help petal. Let's all give a great big thank you for wonderful partners.
Hi Jilly
Really sorry to hear of your situation, from a blokes view and not far of 60 this year, i have had problems mostly to do with not the ability but to complete the process if you catch my drift. My GP has said that it could be a number of things but like you it is not only the act but the intimacy, I missed this immensely when recovering from an injury related to the abdominal wall that caused me as many problems with my back as it did with my tummy and we just had to leave this alone for months, fortunately we seems to be getting over that and back to normality after 12 months.
If you are having pain as you describe, I really would, as the others have suggested, see the Doc again just to be on the safe side and hopefully your ability to enjoy each other will return, best of luck .
Mick x
bless you Mick, I think the guys who are answering this post are so incredibly brave so I thank you for your honesty. I know I should get it checked out but having to face another medical situation is more than I could handle at the moment. Since 2009 I have had not had a moments break from cancer and treatment, I really don't think my mind or body could handle more invasion. Even getting a smear makes me cry out in pain (all normal in that respect). Thank you again for coming forward, I have nothing but respect for those who have come forward to support each other xx
Hi jilly
can I just congratulate you , X
It's not such a easy subject to approach but you did it , I applaude you ,X
I'm with you on this , I'm also very lucky to have a understanding husband ,
I was never sure if all my problems were from me having a total hysterectomy 3 years ago ,
but what I do know & im not imagining is it's very painful now ,i was put on HRT but after my TIA & being dignosed with MPN
They recommend I stop taking it ,
since then I may as well be a nun ,,,,,,,,
I cant thank you enough for your honesty
You've helped me & others ,
by the looks of it a lot of people share the same Problem ,
We really are one big family X
God bless you x
You have me typing this with wet eyes now. Thank you so much for your lovely message. I really didn't know I was going to have such an amazing response and I am so glad that I finally plucked up the courage to approach a subject that I thought was very personal to me only but boy have I been proved wrong. Thank you and everybody who have been brave enough to help everyone with the same problem, you are so right, we ARE one big family, bless you xxxxx
Jilly my moto a problem shared is a problem halfed X
Take care remember your not alone X
Pam Newcastle Upon Tyne x
Hernia of the spleen
Feeling low and fed up
Spleen embolisation gone wrong
A recent diagnosis of polycythaemia.
