View Full Version : Why do we feel a sense of Loss?

02-06-2007, 07:37 AM
Some of us on this board have had to go through major operations such as Hysterectomies and while extremely uncommon and rare, Cystectomies (Bladder Removal) Talk with your Doctor or Therapist as much as you can about your feelings. If you are not satisfied with the Doctor you are seeing currently, then it may be time to search for a new one who will better understand your needs.

I wanted to give some supportive information on why we can feel a sense of loss before and after facing these major operations.

"For many women, the possibility of losing a female organ (breast, uterus or ovary and in some of our cases, bladder removal) represents more than some tissue. Aside from practical hormone concerns, are you having worries about your sexuality, your sense of “womanness”? How much will this surgery change how you feel about yourself? How does your partner feel? Discussing this out loud with a doctor or therapist will help with postoperative adjustment.

The thought of losing a body part can also engender a sense of loss, and a kind of anticipatory mourning--especially if there are very charged emotions involved, such as having to have a hysterectomy after never being able to have a child. Many women feel very angry at, betrayed by, or negative toward the part that they feel “isn’t working right.” Realize that your body is constantly trying very hard to be as healthy as it can, and it is not its fault if genetics or environmental exposure have swamped its resources. This body is the only body you will ever have. Learning to appreciate and accept it with compassion for all of its flaws, will bring a sense of acceptance of yourself as well. Using imagery to say goodbye and thank the part for what it did, or tried to do for you, can bring peace before surgery, and closure afterwards."

Many people deep down feel guilty that there is something they did that caused or contributed to the reason they are having surgery. While all of us wish there are things we’d done differently in our lives, we are human, we make mistakes, and we usually make the best decisions we can at the time with the options we have available. Self-forgiveness will help you heal in many ways."

Remember: You are not alone.

You can attend support groups in person and online. Surround yourself with people who share your situation. Ask questions in a supportive environment. Form a network of friends and family to share experiences with. Being with others who care about you can help decrease anxiety and depression.

For Hysterectomies there are some great web sites to help with support along the way. One example is: http://www.hystersisters.com/vb2/index.php

For Cystectomies and Bladder Removal or Augmentation the ICN has a wonderful message board, provided with lots of information: http://www.ic-network.com/forum/forumdisplay.php?f=126


Please remember that Cystectomies are very rare. They fall into the End Stage Category of IC which means that all other therapies for IC have been 100% exhausted and a medical doctor has suggested it. I think that Jill O. explains this best. I hope she doesn't mind the quotation. To quote Jill O., Founder and President of this network, "Patients newly diagnosed with IC should NOT worry that they will develop this worst form of IC. Most patients with end stage IC received little, if any, therapy for IC for a long period of time. Before attempting any of these potentially life altering procedures, end stage patients should have attempted MOST (if not ALL) of the therapies for mild, moderate and severe IC listed above, as well as the current experimental therapies available!"

If you have had these operations, we are here to help offer some support.


02-06-2007, 01:09 PM
Thanks for sharing this...ironic that you posted this today since it was on my mind earlier
your sexuality, your sense of “womanness”?...Ya felt that way and sometimes do periodically when issues come up with Sex or kids. Hystersisters is a great site!

I tend to like http://www.ostomates.org/

Great post!!!! :)

02-06-2007, 02:13 PM
Kara, I know this might sound really stupid, I still have my bladder and all my female organs but at times I still feel a sense of loss. I guess maybe because even though I still have my bladder, it does not function right, which causes me to be different and can't do things I did before. Learning to take that challenge is hard sometimes, but it is better than giving up.

I love your post because you are letting people know it is ok to have these feelings and you can overcome it.


02-06-2007, 05:07 PM
Trishann: It's not unusual for someone with a disease like IC to feel a loss. I think the thing that bothers me most is the loss of control --- I can't make decisions about when my bladder will need treatment. I can't drink a soda when I'd really like one. I have to say "no, thank you" when offered a glass of wine or a cup of coffee.

Over the past 32 years I have pretty much accepted my limitations and it isn't nearly as depressing as it was at the beginning, but I do understand the feeling of a sense of loss.

Sending gentle hugs,

02-07-2007, 05:27 AM
Donna, thank you for sharing this with me. I think I beat myself up pretty much about the limitation thing. I don't embrace it and I fight with it all the time. I really need to get in balance with this and quit putting so much pressure on myself.

Thank you for letting me know it is possible to do this,

02-07-2007, 08:54 AM
What a great post. Love this discussion and, honestly, it's something that I struggle with too. I haven't lost my bladder but I have times when I'm very angry about losing so many years to IC and the many related conditions I've had. In my 20's... I had a veritable cascade of problems from many ovarian cysts, new food allergies, new environmental allergies, IBS, vulvodynia, sjogrens syndrome and the list goes on. When my friends were dating and having children, I was just trying to not be in pain and that was hard. Then, in my 30's... I had the full blown IC and, though I'm better now, I just didn't have room in my life for a full blown relationship AFTER my boyfriend bailed because of the IC. I was very hurt and angry.

Now, I'm in my 40's... without children and worried about growing old alone. That said, I am totally COMFORTABLE with my body and my IC. I get the diseases now... I see how they fit together and I realize that I did nothing wrong. These are the genes that I was given... and, yeah, it affected me... but, if anything, it has motivated to keep moving forward, to keep trying new things and to find and embrace happiness in my life. It's working.

I guess I wouldn't be "Jill" if I hadn't gone through what I've been through. I had an ICN user tell me, two weeks ago, that I hadn't suffered like she was suffering. Well, she was wrong and I pointed that out very quickly. I think, though, that what makes us strong is how we can reach out to others, how to find some peace with our lives and, most of all, just offer comfort and companionship to each other.

I guess, for me, the gift of being in my 40's... that I wish I had learned in my 20's... is that FRIENDS and FAMILY are the most important part of my life. As long as I have them, I can handle almost anything that happens to me because they give me strength! To be without is just unfathomable.


02-07-2007, 08:56 AM
I agree with Donna, because thats the way I feel.

I feel like I have lost total control.. My life use to be fine, I could eat, drink, have sex anytime I wanted, now its a struggle..I feel as though I have lost a part of my life, Its really sad to think of what use to be...

But I try to stay positive, which is my hardest challange. I know I will prob never have the life I had, but I have to make the best of what life I have now..
Life is strange and throws us so many curve balls..

When I was in good physical health, I had the worse home life..
Now I have the best home life anyone could ask for and my health is so bad ..
So I look at it this way, at least I have always had something to be thankful for..
But I do envy some people that have it all, I think thats normal for us to have that feeling..

So I always have the feeling of some sort of loss even though its not an organ I have lost, its still something I use to have and miss dearly ( and thats a normal bladder)


02-07-2007, 12:33 PM
I know one of the hardest things for me right now is seeing people do simple activities such as sitting down or for longer than 3 minutes. All of the other life activities such as a losing my career and not being able to have children, not being able to afford a house bother me everyday. But seeing others sit in comfort has been a tough one lately for me. I've ordered special cushions for the pudendal nerve and coxyx. I sit on ice packs and wear them around my back, but it still hurts to sit down and after I have sat for 5 minutes, I pay the price for the rest of the night. The loss of sitting upsets me these days.

I found a great article that pertains to what we've been talking about with the feelings of loss when having a chronic illness or illnesses. It comes from the following website as a reference. http://www.holistichelp.net/chronic-illness.html

"Chronic illness has a profound impact on one’s life and creates a lot of grief in response to the losses it imposes on our lives. There's a large variety of potential life interruptions and psychological changes one will go through when dealing with illness. Our illness is erratic and unpredictable and requires constant readjusting. We are likely to endure multiple losses that may include the loss of control and personal power, which is an important contributor to self-esteem, as well as loss of independence, loss of identity, loss of financial status and loss of one’s customary lifestyle.

In addition to these, we may also have to face the possible relinquishing of our hopes and dreams and face the fear of more on going losses. Changing roles in family, work and social situations that result from a person’s illness also can create additional adjustment problems for everyone involved. Family members and partners are likely to be experiencing the same feelings as we are as well as their own feelings as to how the illness is impacting their life. If these issues are not worked out, then relationships may fall apart and leave us with another loss.

Perhaps the most difficult transition with chronic illness is the loss of the identity one held before becoming sick. There is usually a complete restructuring of the way one defines oneself and the ways in which one interacts with the world. Sometimes it is difficult to feel good about oneself as the chronic illness is incorporated into a new self-image. The work of rebuilding one’s life and identity can be further complicated by the loss of spouses or partners or other supportive relationships that sometimes follow the onset of serious illness.

And, as all persons who suffer with an invisible chronic illness know, the lack of validation and support for our illness creates further grief and frustration. At a time when we most need compassion, love, understanding, sympathy and support we may be met with criticism, disbelief, and anger.

It is no wonder that many people facing these multiple losses and the grief that naturally ensues find themselves experiencing high levels of anger, fear, helplessness, hopelessness, resentment, depression and damaged self-esteem. Coping with all these issues can be very overwhelming."

This says so much about what some of us are feeling.

Hopefully the help of a good Medical Team, Support Groups, Counselors, the understanding parts of our Family and Friends, and the ICN all provide some of us with some support and peace as we go through this together!

Sending everyone a BIG HUG! :grouphug:

Kara:smile tee

02-11-2007, 10:55 AM
Very Interesting that just a few hours after I posted this, My Mom called to tell me she has breast cancer! I must have some psychic abilities!


02-11-2007, 11:19 AM
That is strange Kara...

I know sometimes when I write a post or respond to one and have some encourging advice, I find myself going back days later when I am really down and I read what I had wrote,
And I think where did I get that from..lol.. I guess its just I write what I am thinking or feeling at the moment..

But I do believe a mother and daughter have a special connection,so maybe you mind was preparing you for what was to come....

Texas Baby
02-18-2007, 06:55 PM
that post you wrote really got me thinking. I didn't read it until after we talked today, but you are right about the sense of loss. I felt it when I had my Hysteectomy,even though i was done having kids, I felt it When i had my bladder removed 2 1/2 weeks ago. My therapist once likened my ic to a trash can i was forced to carry around. I could never put the trash can down ,so I had a choice, I could either hold that can away from me at a distance and try not to notice it , or I could hold it close to me where I knew all the time what it was doing etc.I decided to hold it close. It made alot of difference in how I approached my care and my attitude. I feel a loss over my bladder yes, as bad as it was it was still mine and this damn disease took it away. Actually I am mad as hell , but, I can also see the big picture. My kids get their mom back, after 7 long years and my husband, my husband gets the girl he fell in love with back. And as for me I finally finally get to come home to my family.

02-19-2007, 07:11 AM
Eva, thank you for sharing this with us. It just hit me when you said, "It makes a difference in how I approached my care and my attitude." Sometimes we do feel so much lost, now it is up to us how we will handle it. We will have to handle it one way or another, so why not think about what we haven't lost.

Reminders can be a best friend,
Thank you, Trishann:)

02-20-2007, 06:33 PM
I think you are totally right. I had to have a hysterectomy at age 23, and even though I did not want kids, it felt kind of different once it wasn't my decision anymore...it changed from 'I don't want kids' to 'I can't have kids.' But, I try to remember the pre-hysterectomy days of being in even more unbelievable pain than I am in now, having to wear a tampon AND a pad and still changing it every hour or so due to ridiculous menstrual flow, etc. But, as you say, we have to accept that we may have these feelings of loss or of being "less of a woman" and we have to deal with these feelings so they don't eat away at us.

Thank you for addressing such a personal, emotional topic for many of us and for giving places to go for support.