These are all things that I've heard from my doctor:
(Despite not even -testing- my hormone levels, like I'd asked.) "You're taking estrogen, your hormone levels should be fine."
"It sounds like depression. You should be fine on this anti-d medication."
"You're still not interested? Then it's something that I'll have to refer you to a psychologist about."
Well, you know what? I'm not fine. I feel broken. I feel unworthy. I feel ashamed. I feel unwomanly. I feel so ****ed angry.
It's been two years. Two long years. My husband is losing interest in me. We sleep in the same bed, but there's no attraction. We have "settled" for what we have, but I miss what we had before. I want that drive back. I want that energy back. I want my life back.
I hate that I hurt whenever I let him into my body. Something that once brought me joy and contentment, has become a chore. I don't enjoy it, I'm just going through the motions.
I am just so frustrated... I'm dripping tears as I type this up. It's 11:30 at night and I don't want to go to bed. I don't want to lay my unresponsive body beside the husband that I love.
I am so sorry to hear that you are experiencing these issues.
The changes that are brought with the removal of ovaries can be much more than expected. Everyone expects you to be overjoyed that cancer was taken care of but they don't realize how impactful it can be after recovery.
My recommendations to you based on my own experiences:
If possible, find another Dr. one who will work with you. The challenge for those of us who have had cancer of course is that we can't always take hormones like everyone else. However, that isn't always true. I am allowed a little compounded testosterone. It isn't the perfect magic bullet but it helped me both physically and psychologically.
I had a counsellor before this all began and being able to vent about the changes that surgery brought was also helpful. I was able to work through the anger over all of it. Unfortunately women's responses are so complex that no one thing works perfectly or works for everyone. For us a portion of it is a mind game and if you don't feel womanly or if you feel broken and ashamed those things will contribute to intimacy issues. This is where my counsellor also helped me so that I could get past those feelings and emotions. One thing that helped me start to repiece myself was to journal. I just had a simple notebook and I would sit and write and cry. I would rip up the pages but it helped me get all the negative self talk and emotions out and provide me the chance to see myself and my situation in a new light.
I'll be honest as one Dr. told me...."without your ovaries things won't be exactly the same but they can be good". There are times that it is still a struggle but she's right. Some times are better than others, they aren't exactly like they were before but they are good.
Have you talked to your husband about how you feel? If not it may help him understand and hopefully he can reassure that he is still attracted to you and loves you. My counsellor told my husband you will have to say this as many times as she needs it and that my be multiple times a day.
It isn't an easy issue to solve but hopefully you will find a way to move forward to a more fulfilling situation.
I am sending and prayers that you find the medical personnel that can help you refind your feminine, womanly feelings again.
I am in the same boat as yourself. It will be 2 years in October since my full DaVinci Hysterectomy. I was diagnosed with endometrial and ovarian cancer but thank God it was not so bad to have chemo or radiation. I have been "watched" since the surgery with pap smears every 4 months and I have had to abdominal CT scans will all being clear. My life has changed drastically as yourself. I have NO Desires and no interest in sex with my husband. We have had sex once since the surgery in October 2010...ONCE....I feel so bad for him and I miss what we had before this all happened. He and I have talked extensively about what has happened to me. He is very supportive and I feel very blessed to have that from him but I am still sad, angry, and all the other emotions that can go along with it. I am not on any type of HRT and of course can't have anything Estrogen related because of the cancer.
I have reached the point of feeling helpless, sad and miserable. I exercise but can't seem to lose the weight I have gained from all of this. I eat right and try to stay active outside the home but I have no interest in being sociable very often with friends. It is as if my entire personality has changed. I think I am basically disgusted with myself...I don't like the way I look anymore and I don't feel good like I used to. My hormone levels have not been checked either. I have considered Saliva testing to check my hormone levels and maybe see if that route can help me. I don't know of anyone who has been through what I have that I can talk to about this. Most of my friends who have had hysterectomies have kept ovaries or did not have cancer so they are not really any help.
I keep telling myself and my husband that there has to be a doctor out there who can help with all of this change instead of saying you need to exercise, eat healthy (which I do) and get on with life. Really??? There just seems to be more to it than that to me!!
Hi it is nearly 3 years for me and I feel the same as you. Did take HTR for a year but had bad migraines so came of it. A doctor I told about no interest in sex said he had never heard of this happening!! He was more embarrassed than me so I didn't go back. I should have seen another doctor but you just get on with it instead of putting yourself first. I will go to the doctors again though as I don't want to spend my life feeling like this.
There are Drs and groups that do understand and help with this type female sexual disorders.
In doing some of my own research, for example, I know that there is a group in San Diego and also there is a group in Houston. The Dr. in Houston is working on a trial related to some on-line items to help women. I just subscribed to a site for a magazine called "The Female Patient" you can subscribe as a patient. They magazine and articles are intended for ob-gyns but there is some great information there. I looked at webcasts and podcasts and there was a 15 minute podcast on FSD. We also have videos on FSD in our video area. The Video menu can be found in the upper right below the tabs. If you use the drop down related you can find the category on Intimacy.
As everything indicates it isn't an easy fix but at least sometimes knowing there are people out there at that understand and where you can go for help makes you feel less alone. A lot of them say that for pre-menopausal women that lose their ovaries it can be the hardest!
This is the first time that I have posted on this sight. I am so sorry to hear about your issues. I totally relate to you. It has also been two years today since I had my procedure. Origianally when I had the procedure done, I still had my ovaries. The sexual desire remained until I began having issues on and off. To make a long story short, I had part of my right ovary removed in October 2011. By the end of November, I had no desires what so ever. It was bad enough being a newlywed and having the first surgery, but then having another procedure a year later. I had no idea of what was happening. All I knew is I didn't want my husband touching me. I often waited until he fell asleep before I would get into the bed. I visited a doctor and explained the situation to him. The first visit I was told nothing was wrong and try lubricant. The lubricant worked, but still did nothing for my desire. I started feeling so bad not only for me, but for my husband. So I made another visit. This time I was more outspoken because I knew this was not a normal feeling. The doctor started me on estrogen tablets as well as testoterone injections. This is only a temporary ten month treatment or sooner, just to get me regulated again. A week after the first injection, I found myself feeling a little different. In week two, I was ready! I was back in full strength. The desires and natural lubricant, the whole nine. Last week I had my six week recheck to see how I was doing and to receive my second injection. This week has been amazing. My husband and I now consider ourselves in the "newlywed" stage. Just a note..the doctor did joke and warn the effect it would have on my husband...he would need to keep up on his vitamins. My husband agrees, but with no complaints!
Just wanted share with you so you won't give up hope. It can be turned around. Keep your head up!
I also received my first T injection a couple of weeks ago, and I agree with Goldie 1964, within a week I started to notice my natural lubrication and desire coming back. I switched to a new ob/gyn, my other one retired, and this new doc told me about it. I had never even heard of it before. The nice thing about it is, there is very little side effects to it. She said 60 percent of women have good luck on it. Maybe you could try that. I know it is so frustrating, but there are different things to try, you will find one that works for you!!
I have had the shots and I still have no desire. It has been almost 18 years since my surgery and this is just starting now. I'm angry and I feel alone, I'm not even 40 and I my husband has lost patients with me and the situation. I fear now that I may loose his over this. I have been to many Dr.'s and they just want me to take anti depression pills, which i tried and I felt NO different. I tried many different hormone's (ones that I could take) and I had found one that give's me relief in every department but my sex drive.
I have this issue too. It's been 2 years since my last chemo treatment, 1 1/2 years since radiation. I have had NO desire since the full hysterectomy and was told no way on testosterone because of cancer. I have the dilator that they give you after radiation, but it is not working. Lubricant helps, but sex is painful. We have learned "other ways" to please each other, but it's just not the same. I feel so bad for my husband. I would love to feel like I used to.
I have been going thru this for a quite few years on and off. Lack of desire, dryness, and pain. I had endometriosis for years, I also suffer many other illnesses I am not going to list suffice it to say I can relate. The very best advice I can give is Never Give Up.
Here are some of the things that have helped along the way.
I get my husband to give me a massage while I lie on my stomach and relax first.
Get dressed sexy and put on make-up make it exciting without penetration. This can put those thoughts in your head for a few days.
I also often just make a night all for him because my husband has gone thru this with me without fail, complaint, or argument (much) for all these years. I make it as special as I can to show him just how much I love him.
I know a saying I keep in mind "fake it till you make it". It definitely helps to take the focus off me, over thinking just makes me tense up and that never helps.
Talk to your doctor about medication but be careful and read all side effects. The best advice I can give is relax. Maybe go on a date and try to rekindle your feelings from there. When you kiss a man you actually get some of his hormones!