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...
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.
We had no idea this was going to happen, but that year that we were so broke, when he lost his job, we wouldn't have had Thanksgiving dinner if it were not for our church getting together and bringing us food. Yeah. We had a turkey, and the whole nine yards. There were two envelopes where different classes got together and put in money for us. That money paid our bills so they didn't get shut off. When they left that night... me and my husband just hugged each other and we both cried. If you have hope and faith, things will happen that you never thought would happen. Never give up on hope. It seems bad now. But this too shall pass. Please get ahold of the places I wrote down. They can help you alot. My momma used to always tell me... Noone promised life would be a bed of roses, and if it were... roses have thorns. You'll make it through this someway somehow. Please take care hon. Best wishes, Ruthie
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.
I took it for as long as I could even thru a failed back surgery.I don't want to go into all my details as I am happy today & married to a good guy, but wanted to touch on a few of the medical issues you are having. You didn't say how long ago you had the hystectomy, but it can cause some problems with your bladder, I have had tons of problem with bladder infections & pain problems. they use the ligaments from your ovaries to tie your vagina up so it stays up inside you. That was painful for me I know. I got infections often because of the muscosa in that area is suffering from lack of estrogen. If I were you, I would talk to your doctor about some hormone replacement therapy. It really sounds like you need it. About 2 years ago I had a horrible bladder infection & was peeing nothing but blood so it looked & felt like. I saw a urologist as this has been a problem for me since the hysterectomy 44 years ago.He said I had a prolasped ureathia, & the mucosa was very poor meaning the tissue was very thin which allows bacteria to get into the ureathea & cause a bladder infection. They put me on a hormone patch called the Viville Dot. It's a low dose estrogen, & it completely cleared up all my bladder probems for once & for all. It also makes for more comfortable relations with your husband privately too as the skin becomes thin & cracks or tears & causes pain with intercourse also. They make this in the patch is what I like or a pill, or a creme. I don't like the estrace creme just because it is messy. The patch I can put on & forget. It's vey tiny & clear & can be worn in the bikini line. The other great factor in using a low dose estrogen is it helps to pick up your mood also. When you feel better below, you will actually feel less depressed also. We need our hormones. Not all women can tolerate them. Infact when I was younger the doctors gave me too high of doses & caused me to have blood clots, but if given just the right dose it can be of a tremendous help. Surgical menopause is worse than regular menopause because you are losing all your hormones at one time. Talk this over with your doctor. I think it sounds like you could really use this to help you out in more ways than one. I wish you the best, & check with the United Way. They are wonderful in helping out families in need. Best of luck to you, hon...
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.
But menopause can put a lot of women into pain and severe depression, so you really should try to address that with getting some low level estrogen.
Mary is very right about getting hormone replacement therapy. Especially women who start it early, like the age that you are, have better cardiovascular health. And what shocked the researchers was the latest that women who took HRT had less breast cancer! You will probably feel like a new person with it. And sex is very difficult when you have no estrogen on board. Not only does it affect the sex drive, but Mary is right about the vaginal lining getting too thin and losing its elasticity. So bleeding is typical and not a good result.
I'm so sorry about your financial situation. So many people are facing that situation right now as the middle class is getting smaller and smaller as so many are slipping into poverty. And the rich are the richest that they have ever been compared to the rest of us in the bottom 98%. Hope that things will get better for you, but if you can get a better outlook with estrogen or even an anti-depressant, that will help you solve your problems much better.
I wish the best for you.
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.
Your pain is heard by all of us. Many of us have felt it. Many are living it. it can stop. It can be treated. It takes work. There is no magic pill to fix the depression. A person gets smarter as they have ups and downs and learn to recognize they are slipping back. That is when one gets help again. Situational depression does become as intense as purely biochemical. Pain is pain. I have spent years depression free. And spent time unable to function. Every time I have found help, life turns around again. Yours will too. A good therapist will walk you through your priorities. I know you will do this. Karen
9 Aug 2012
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.
I did not suffer with all of your urinary problems.
I did have some issues with urinating the first couple of months. But my surgeon said that would be expected due to the fact that I had several areas that I had endometreous on my bladder that they had to scrape it & weekend the walls of the bladder.
Has any of the doctors said there was damage done to your bladder our kidneys?
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.
I had high hopes that it would stop the pain. It did stop my periods but the pain got worse and worse. After seeing several urologists one did a cystoscopy under general anesthesia. When I woke up in recovery I was screaming in pain and they had to keep injecting me with morphine. I wasn't scheduled to see the urologist for a follow-up for 3 weeks, and after a week I couldn't stand the pain. When I called they said my doc wasn't in the ofice, so they offered to let me see the other doctor in the practice. Well, he was a blessing, diagnosed me with IC right away and started treatment!
Those treatments were with DMSO, which they don't really use much anymore, and they did help somewhat. A few more years and I was divorced and then lost my insurance. I got a job but it took over 5 years for me to get hired full time with benefits. As soon as the health insurance was valid I started making doctor's appts and say the same uro as I had been to before. His wife is his PA and she is wonderful. Her name is Joy and she has gotten me through some rough times. After many instills and another year of Elmiron, which doesn't work for me, they sent me to a pain management doctor. He has been fabulous, not only addressing the severe bladder pain but also my back and neck problems, which have gotten to the point to my needing neck surgery.
I hope and pray you will get some relief with a decent, caring doctor, and that financially things get better I also have Fibro, IBS, degenerative disc disease, osteoporosis, depression and mitral valve proplapse. We humans are pretty sturdy it seems, and I do pray occasionally though I'm not a church goer... I have a firm belief in God. Please write anytime... I only have internet access at work right now, but I will get back to you.
29 Aug 2012
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.
Also something that I forgot to mention.
You were talking about your daughter & how
She has to put memories in a "before" or
"after" box relating to her life.
I know that is hard for you to hear from her.
But since my life due to medical issues have affected my kids life too. And since my medical problems have affected all of my families lives now I have felt guilty about that many times. But my kids now 20 & 26 have also gained ALOT of great compassion, caring & helping others & have the biggest hearts you could ever imagine. Yes it was hard on them especially my youngest one my daughter. Because of all of the medical & pain issues I have had in the last 15 yrs or so.
But people are constantly how amazed & mature my kids are & how they are willing to drop anything to go & help someone.
It does make kids either more mature & responsible & it is not fair that they have to struggle along with us. But I think the best thing they learned from me was to always stay strong & not to feel sorry for themselves because there is Always people out there that ARE WORSE. You have to stay Strong & Not give up even though what you are going thru is Not fair... They need you to show them that you will not ever give up & they should never give up either...
And just 7 months ago I had to sit down with my kids & go over my wishes on dying.
As with my Vascular Dementia is getting worse & my small strokes are getting more frequent & more intense. My memory of my kids lives have chunks missing from my memory. And since the strokes are coming on & damaging more of my memory I had to sit down & go over my final wishes... My daughter decided she wanted to be my power of attorney for everything because as she said "Mom trust me I will honor all of your wishes because you taught me how to be honest & compassionate"... That was Really emotional time to say the least.
But my whole point is that just because you CANNOT chase your kids around the house anymore you CAN still teach them some VERY IMPORTANT LIFE SKILLS.. So please do not think that you have Ruined your kids life because you are sick. You are Still there Mom & I don't want you to think your life is over.
I am really afraid that you are becoming so depressed & I can understand how difficult everything is for you right now. But please always remember that those precious kids you have NEED YOU... So Fight & pull your strength from deep inside you & do whatever you have to..
I know money problems are so stressful especially when you are hurting & sick & do not have the money for medicine our anything else. But as I said before start researching patient assistance & services for people that need help from the State or try United Way there are resources out there.
One step at a time. Your kids will see that fight inside you & see that taking care of them is the most important thing.
And most of all please when you think you want to throw in the towel... Think of how you want you kids to see you..
I am here anytime you want to talk just send me a Private Question..
your friend, Kathy
Search for questions
Still looking for answers? Try searching for what you seek or ask your own question.
In phila, PA. Simply trying to learn more about this condition, that i have had since 2005, any suggestions feel free...
4 answers • 2 May 2010
My daughter took tetracycline for acne in her late teens. She is 29 now and has been suffering from Interstitial cystitus. I recently saw an ad on tv ...
2 answers • 9 May 2011
2 answers • 19 Aug 2011
I have interstitial cystitis in remission but got back the vaginal pain that went with it. A NP asked me if I'd taken it. I said no and asked my ...
2 answers • 10 Mar 2012