Feeling misunderstood

[Scronti]

Hi guys.
i need so,e advice on how to deal with the sticky issue of sex. My husband ANSI used to have a healthy sex life until I became ill. 18 months ago I had a large tumour removed from my lower spine. Since then I have learned to walk again but am in pain every day. I've had to be put on hoe,ones to stop my periods as I can't use tampons anymore due to the pain. Sex is painful and always in the same position as I don't have the mobility I used to. Initially supportive my husband now just goes moody if I say no and I'm sure he thinks I'm just making excuses to not have sex. When we do have sex it takes 2 or more days to recover properly and not be in lots of pain. It's causing arguments now and to be honest I'm getting a bit fed up that all he can do is nag about is sex and he goes moody if I'm not up to it. 

Help.

[Scronti]

I thought people on this site would be able to offer advice.



I'm really worried my tumours coming back, I'm arguing with my husband and I feel so alone.

[leks]

Hi there

I'm male and all I can say is you guys need to talk about this. My soon to be ex wife and I never kept the communication open and 1.5 yes post op she tells me she wants to leave me. Some partners just aren't cut out for this spinal tumor business.

Your hubby should get a better understanding of what your going through and be more understanding. I understand how he feels, we men can be such moaners!! But we should be understanding too. Their are alternative options here, maybe oral or masturbation??

If you ever want to chat, Give me a shout, I'd be happy to listen.

[pringleman]

Sorry Scronti,

I wanted to reply but I am male too and was not sure that my advice would be of any use. I do concur with Leks suggestions. The trouble is it is very hard for people to understand the pain that you are in. Have you sat your man down with this site and read through what people are going through? That might help him have some insight into your condition.

I hope you can work it out. And if you think the tumour is back, please get an MRI done soon.

Thinking of you.

[dana]

HI, I am a new member. My post is more general. I am a 49-year-old woman who is undiagnosed and needs help. Over the past three years I have been seen by four neurologists who scratched their heads and gave me no diagnosis. Other doctors have tried to convince me that my problem is in my head. Meanwhile my symptoms have gotten a lot worse. Now, I am extremely weak: from a woman who, until half a year ago, was going five times/week at Yoga, I have become someone who can barely stand on her feet. My legs, especially, feel very strange and weak. I am only able to do physical therapy now and even that for no more than 15 minutes. My legs feel as if they are made of wood, very strange. At night--every night!--both my hands and feet are getting completely numb, and during the day I have constant weird sensations in my body--burning sensations that move all over, and a feeling as if I am being touched with a cold/wet tip in various places. I have no pain as such--well, actually I do: the muscles in my lower back, the soles of my feet and sometimes the knees--but I am in great discomfort constantly. Also, I have been dizzy since mid-April and have severe insomnia. And since August I have very frequent urination, sometimes every half hour. I would greatly appreciate it if any of you could tell me if my symptoms could be a sign of a spinal cord tumor. Someone told me that I would me in much greater pain if I did have a tumor, but judging from what I read on this site it doesn't always seem to be the case. If any of you would like to send me a private message or call, please let me know.

[MB]

Have you gotten an MRI done? It would have come out and it wounds like it could be what you have. I have a 10 cm intramedullary tumor and I am ale to walk just fine. People who see me tend to think there is nothing wrong with me, but the tumor is there. I have sciatic pain running down my left leg, ankle weakness and calves stiffness. I have had a few episodes of bowel incontinence and have lost sexual sensation.

[kathyb]

Scranton,
I am so sorry. I know for myself it seems that all of the problems after surgery are all so similar and we are all trying to work them out, uncharted territory and all.....so I do not check in here often. My husband and I also have a less than satisfying sex life. It seems that it is more important to them, that intimacy? I have reduced sensation, (neuropathy) from shoulders down and terrible problems with constipation. My hands do not work well and I have gained weight, inactivity and all. I fell like an old lady not a sex goddess. Sex does not hurt for me, but it is tedious as I feel nothing. I am pretty conservative so a big step for me was purchasing a rabbit (vibrator), works great for me on my good days? I am still trying to work thru issues of feeling older and more physically limited than I have ever been. I also work full time which helps mentally but leaves me exhausted by the end of the day. My husband treats me as if I am at my pre surgery state plus. I keep telling him. There is no more blood to be had from this turnip. I don't know what he expects and have to keep reminding him that I am by no means up to normal capacity yet. This is all further complicated by both of us trying to be great parents! Everyone has issues to work with. I know mine could be much worse but I keep thinking, why this? I wanted the modified fairy tale: 2 kids, white picket fence and all. (We also had years of infertility which resulted in an amazing son! But that also takes a huge tole on a relationship and another story).

I don't know what I can say to make it better. Just ramble about my experiences. Any luck in checking out web sites on quadriplegics and how they approach sex? Possibly similar in some ways?

Best of luck to you. Know that there is a huge group of us all looking for answers stuck in bodies that we get frustrated with right there along with you. Let me know if you want to continue chatting and I will check back more regularly for a response.

Kathy

Ependymoma C2/3-C6/7
February 2010