I should probably put this in my profile, but here goes... I'm not 100% on the year but 5 or 6 years ago is when it all started to go down hill. Early in Dec. I had a miscariage then four months later I got pregnant again only to find out at a OB apt that the baby was not alive. I was three months pregnant. I ended up having to have a DnC. Six months after that me and my doctor decided to go ahead with a hysterectomy. I've always had cramping throughout the month. Every day. I was also starting to bleed quite heavy during my periods. He ask if we were done having children because he thought I might have endometreois. To be honest with you I could have had four more children and been as happy as a pig in crap. So after talking it over with my husband we decided to stop and go ahead with the operation. Worst decision I've ever made!! I remember waking up in the recovery room in the most extrem pain I've ever felt in my life. I was on a morphine pump and was to push the button when I needed a dose. I couldn't push it enough. The pain never let up. After being taken upstairs to settle I had no choice but to lay there in extreme pain. After the first day they took the catherder(sp) out and found that I could not go the the bathroom. Which I understand is normal. However after a three or four hours I was still unable to pee so the nurse had to come in and cath me. I tried to pee after that and still could not. This went on for an entire day. The last time she helped me pee via cath she did not get all the pee out. So she took the cath out and was cleaning up and I still had to pee some more. She then went on to tell me that I was not going to get cathed again, not so soon. the soonest she could do it would be four hours. I started to cry and tell her no you don't understand I really still have to pee, bad! So she tells me if you need to pee that bad your gonna have to get up and go yourself. I said, "I can't, please help me!" No she wasn't going to help me. I said can you please call my doctor and ask him. No she wasnt' going to do that either. I said what am I supposed to do for four hours, she said take a nap. Can you believe that? I said take a nap? I cant' go to sleep I'm hurting really really bad and I have to pee. So she leaves the room and comes back with a surenge(sp) and puts it into my IV. I don't know what it was but it knocked me out. I woke up four or five hours later and felt like I was getting ready to explode. My second oldest son, who was there to help me got me out of bed and helped me to the toilet. Know the hat they put in toilets to measure pee? Well, hand to God, I darn near overflowed it. So little missy comes strolling in within the next hour or so and ask if I was able to pee and my son pointed to the toilet. She comes out of the bathroom and says, "wow you really did need to pee!" I was so upset and crying I couldn't say anything to her. So I got out of the hospital and went home. I was in so much pain. Going to the bathroom just about every hour. I've just never experienced anything like it. I couldn't get any sleep because of the pain and getting up to go to the bathroom. I call my doctors nurse the next day they were in and told her what was going on. She said, "your not drinking enought water, give it time bla bla bla. So after asking my OB for refills on the pain medicine three times and three or four test for uti's, that turned up negative he told me I don't know what's wrong with you maybe you should go to pain managment. Your kidding me? You don't have any idea what could have gone wrong? Anywho, about six months later I went to a uroligist where she did the test where they put diy up into you bladder to see how fast the kiddneys absorb it. Well aparently I'm the worst case she has seen in 23 years of Intercistial cystitias. So she sends me home the same day of the surgery and my husband ends up taking me back down the hospital the same day because I was in horrible unGodly pain. Mind bending!! So I spent three days in the hospital just so they could control my pain. So she tried me on Elmaron(sp) and hydroxezene and neither one of those worked. So I've been in pain managment ever since. I wish I could turn back the clock and change that one decision. I wish I had not gone through with that operation. It's not only changed my life but has changed my kids life and my husbands. My oldest daughter says she doesnt' remember much before I got sick. So it's either before I got sick or after for her. That tears me up. No child should have to put memories into those type of boxes. I too remember it like that. The day before the surgery me and the kiddos were running around the house playing and being goofy. I can recall thinking, "I won't be able to do this for awhile." Boy if I would have had any idea... I'm 44 and feel like I'm in my sixtys. About a year after this happened is when my husband got laid off from his job. Ever since then we've been paying out of pocket for doctors apt and meds. For almost three years that ended up being right at seven hundren dollars a month. So there were many many months that the rent went unpaid just so we could keep me "comfortable". Comfortable not getting better. Mind you the meds I take, Fentanyl50mcg and Hydrocone12/325 don't touch the pain most of the time. I take ambien just so I can sleep more then two to three hours at a time and now I'm going through menopause. I think the hysterectomy helped it along. I still have my uterius but I'm telling you I could tell. I know my body. I'm one of those people who could tell I was pregnant even before a home pregnancy would turn up positive. So here I sit with IC, fibromialga, depression, cronic fatigue and ADD. I'm usually a pretty positive person, even some days now but I'm telling you how much can a person take? We are at the end of our rope. My husband is still trying to find a job but we have no idea where next months rent is coming from. I think I'm gonna have to try and sell two of my horses. I went to pick up my boy from work and we just made it home on fumes. We don't have any money for gas and hubby has to do some stuff in town. He builds cabinets but it's not enough to keep our heads above water. We've taken everything in the house that's worth anything to the pawn shop. Heck he's got almost all his tools in there, my ipad and on and on. Our well it running out of water so that means were gonna have to start paying someone to truck in water. I get really scared for my husband because he just doesn't know what to do. He's really doing all he can and it's just not enough. So there ya go. Where does it end? I know no one can really answer this one, but I guess it helps to get it all out. I guess...
Depression - Where and when does it end?
- Posted:
- 6 Aug 2012 by imthenoodlehead
- Topics:
- depression, pain, interstitial cystitis
Responses (11)
6 Aug 2012
Hi, i'm so so sorry to hear everything you and your family are going through! Like you said, it isn't easy to know what to suggest, i guess i can just offer my empathy and wish for an improvement in your circumstances. Was the hysterectomy operation inadequately carried out to leave you in so much pain plus added problems with your urinary system? I know it isn't ideal, and i guess you have considered everything already, but can you get a small loan to get your family through this tough time? Or do you have any family that could help ease the burden? I can't have children and have myself considered a hysterectomy, but since reading your experience of it, i will do a heck of a lot more research before making any final decision. I feel so bad for you, i wish i could do something to help you and your family. I can offer a shoulder to cry on if you want to talk more? We can talk privately if you like? I will add you as a friend just in case it will help. I will be thinking of you and will be wishing you well!
6 Aug 2012
Hello and welcome to the site. I've no answers just I hope that by sharing you manage to feel better. It sometimes helps to as you said get it out. I've no solutions other than that this site has a lot to offer in regards to support. That will or might ease some of your worries. Talking to others. pledge
6 Aug 2012
Hello, I don't know if you've had a chance to read it or not, but in you're previous question, I gave you a couple of places to call with phone numbers, that have programs that can and will help you if you call them. I hope you got the message. I'm sorry you are going through this. I'm not just saying this to agree with you, I say it alot sometimes but I've been through a heck of alot and I'm not lying, to make you feel better, but me and my husband have been in the same boat financially before and it was so rough. We had five kids between us, and talk about tough. I know, girl. It was a very humbling experience. And I'm glad we had it. My husband had never hurt for money and always made alot of it, and was just a little too almighty. After that happened... it changed him, and now he is back to where he was financially, but is the kindest person, and noway near like he was.
6 Aug 2012
imthenoodlehead, I know you already feel better just getting all of that out. sometimes just a good hard cry will make us feel better emotionally, even tho it isn't going to fix much you have to let your emotions out. You have to have an outlet. I can relate to many of your problems because I had a hysterectomy at the age of 22. Thank goodness I had 3 chidren 3 years in a row. I had the first at 19, 20 & then 21. Must have been a good reason those birthcontrol pills didnt work.I also have been down that road of struggle that you are talking about fianacially. You have to ask for help no matter what or how you feel about it. You have several children to think about. All these problems & more ruined my marriage. At least you have a wonderful understanding husband to lean on.Mine was a spender, an abuser & more.
Great answer Mar. Ruthie
7 Aug 2012
So sorry to hear about your struggles. You should really try to follow up on some of the suggestions above. Especially your medical bills which can put someone into the poor house even if you are working. So look into Medicaid or any of the other suggestions. I'm different than a lot of people, so I hope I don't start another fight here, but I believe that no one should be in pain and not have financial help to treat it if they truly can't pay their bills. And if the hysterectomy was the cause of your chronic pain, that doesn't sound right. Many women have hysterectomies and are not disabled in pain for years. Perhaps you should call one of those lawyers that files a lawsuit against the doctor for free just to see if you might have a case. If the hysterectomy was NOT the cause, then perhaps that will ease your mind about your decision.
Thanks sara for backing me up on this. I struggled for years because of the hormone replacement problem, & it also helped me out with the tears (eye tears not tears), but also tears in the vaginal lining). It can make all the difference in the world in your emotinal issues too. The ripping out of your source of estrogen all at once can surely cause some depression issues, & with the fianacial issues too, it can't do anything but help her out some. Thanks again for backing me up on this. I just hope she cn get this med to help her. Also should have suggested that there are many programs besides the United Way that will help people out. Our township helps pay people's rent wen they can prove no income. It takes a bit of detective work, but help is out there. Drug amnufactureers will alos help with patient assistance program for prescription. Knowing what she takes, can help get the right numbers for her to call...
I'm with you on the no one should have to suffer. While we struggle to get needed medication, the politicians are getting paid in six figures and have an insurance plan that they don't pay much for and it pays for everything. They are totally out of touch with how we are struggling, much more I don't think they'd care if they knew. They're just happy that they are getting richer, along with their friends. And what kind of dr does a hysterectomy and doesn't order hormone replacement. I just don't get that one.
7 Aug 2012
Hi noodlehead. Depression ends when one looks at a sky full of rain and thinks it is a gift for the flowers rather than something to trudge through. It is when you smile again. You have been through the wringer and out the other side feeling small and wrung of emotions. My depression lifts when I stop rehashing things in my mind. When I realize I have control about what I am thinking. When I get sick of telling my woes and start to listen to others. The key is to get a good medication and then a good therapist to break the old thought patterns.
You give some of the best advise. And she really needs it right now. Ruthie
Thanks Ruthie. All experience and a whole lot of thought. Oh, and I did stay awake in my classes. That kinda helps too. :-)
9 Aug 2012
Imthenoodlehead,
I am so sorry you have had such a rough time. I had to have a hysterectomy due to endometriosis when I was 30. I can relate to the depression you had after yours. It is just the idea of knowing you will not be able to Ever have anymore kids it feels in your heart that there is something missing inside of you. Part of it is Hope (that you have the choice to have another baby) the other is "the part you feel less like a woman" so you "feel" less sexy in our minds. Then you have to deal with all the crazy hormones.
So yes it is normal to feel depressed for awhile after all that. I know several people have suggested hormone replacement & you should really check into that as it will help a great deal with your depression & get your hormones under control.
Hello butterfly,
you hit on something that does bother me. I don't feel like a woman anymore. I do have to say though that my husband is trying to understand. I have no interest in sex what so ever. It wouldn't matter to me if we never had sex again. I'm telling you girl I liked having sex with my man. Now, nothing! I have gone to three different docs and they have all told me that my hormones are well w/in a "normal" range. Nobody will listen to me and hear what I'm saying. As far as my bladder, was it damaged, nicked, or whatever, I don't know. My OB that did the operation, he knew that my pain was ongoing and instead of trying to find out why just sent me to pain management. So that's where I've been for a little over four years. I said it before and I'll say it again, I have never ever had problems with my bladder. In fact I think I've had only one, maybe two bladder infections in my whole life.
Imethenoodlehead;
I just sent you a friend request if you go into your profile you will find my friendrequest. If you accept this then we can communicate "off the board" in private as I would like to talk more with you. Once you accept my friend request just click on my "butterflyly" and avatar & that will put you into my profile you can then send me a " private question" and let me know that you have added me.
I can relate to alot of what you are saying & it is an awful feeling to have No sex drive. Plus the depression makes your sex drive even worse and stressing on how to pay medical bills is even more stressful.
28 Aug 2012
I am so sorry to hear about all the difficulties you are going through. I can relate in many ways. I was catheterized for 5 days after my first daughter was born - I was barely 17. Then after my second marriage I got continual uti's and had to have my urethra enlarged. Flash forward to 48 and I was having this ungodly pain that felt lke my bladder and entire pelvic area were on fire with cramping pains, constantly having to pee and I swear it felt like I had shards of glass inside me. I was practically bedridden, and my gyn did an endometrial ablation since my periods had gotten so heavy.
29 Aug 2012
Imthenoodlehead,
I haven't heard from you for awhile & I was wondering how things were going. But obviously still not that good & I am so sorry to hear that.
I think last time I spoke to you about getting patient assistance for your medications thru the manufactures. Were you able to find any assistance on your meds? Also were you able to find out about getting medical assistance thru your state? Also I think I suggested to reach out to any churches & other programs that help people that are having financial problems? There is alot of programs out there but it does take some research.
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Hello Delila, thank you for your friendship offer. Of course I'd love to have someone to talk to. I'll be here for you too if you need. I'm not sure what happened with the hysterectomy but I do know that I have only had two bladder infections in my entire life. That's it. In fact about eight months before I had the operation I went to a urologist because I was leaking urine when I ran. She said it wasn't even bad enough to do anything about, except I might want to do some kiegel exercises. I never had problems w/ my bladder until after the surgery. Unfortunately a loan is out of the question as we have pretty bad credit from a lot of medical bills. Sad to say but even though both of our extended families live close by, both sets are retired and even if they could their not interested in helping. I'm sure they think they have helped enough. As far as you having a hysterectomy I can only tell what my experience was.
Expand this post...
I've actually heard that its either one way or the other. Women either really are glad they got it done or they hate it. Oh yea I forgot to mention this, I have no sex drive and my husband is trying really hard to understand but... If the situation were turned around and I was wanting him and he had no sex drive, it would hurt my feelings. Anyway thank you for the friendship offer again. I will friend you.
Great answer Delila. Ruthie
Thanks Ruthie : )
Imthenoodlehead - i understand about poor credit ratings, it is so frustrating. I had to take out a DRO at the beginning of the year because of losing my job, and my credit rating will be affected for 6 years from the date the DRO was accepted. Financial concerns are affecting so many more people in this day and age, it really is a worry! Sorry to also hear about the low sex drive. I used to take medications that affected me that way and my ex partner used to get so frustrated, but he made it worse by trying to force me in to sleeping with him. That is the worst possible thing when you are going through this. You just need to take your time and not feel pressurised - who's to say how long it will last, you may feel your libido return sooner than you thought. I'm sure your husband understands, you have been through a major operation, you won't recover over night. Well i hope things do take a turn for the better, and as i said before, i'm here to talk if you want to... : )