I just had my laparoscopic surgery yesterday. They found endometriosis on my bladder and lazered it off. I was just wondering if endometriosis usually comes back or not. I am really excited that it was just on my bladder and not on reproductive organs, and that I don't have IC, but I was just wondering how commonly it will come back. Is it also common for it to spread around to other areas? will staying on birth control help prevent this from happening?
Being on birth control will help prevent it from coming back sooner. Endometriosis does not have a cure as of now though so unfortunately it most likely will come back. I have heard of some people that have gone years without another issue with it and some who have a lot of problems. It varies for everyone.
How did the surgery go? Are you feeling ok today? I just had a lap done in February and that was when I found out I have Endo.
Oh, ok thanks for the info. Surgery went well, I'm ok, not feeling good, but I think that i'm feeling pretty normal for the first day after surgery. I am actually really suprised how much I can't move though lol. Where was your endo found? And are you feeling better since having the surgery?
I'm glad that it was just one area. Unfortunatley endometriosis can come back as long as you are ovulating (having cycles). Sometimes pregnancy can reverse it. Take a look at Dr. John Lee's book --What Your Doctor May Not Tell You Ablout Menopause for a discussion on endometriosis.
My endo was found on my ovaries. The right was much worse than the left though. I was getting the lap done to have a cyst removed from the right ovary and the cyst ended up being endo. My doctor removed any and all endo that she could find. I am feeling pretty normal I guess. I have been having a lot of problems since my daughter was born last May. I had a hysteroscopy done last August to remove some tissue from my uterus, the lap in February and now I am going back for a hystosonogram on the 1st because they found something on my uterine wall that they need to get a better look at to see if I need surgery once again! Nice huh?
I found out in February that I have Stage 1 Endometriosis. For me it is really painful though. Just today I had a really bad incident with pain where I could not even stand straight for a good 20 minutes. It comes and goes but I have also heard of women with Stage 4 Endo that have no pain. Everyone is different.
Glad you are doing good after the surgery. It IS surprising how hard movement can be afterwards. Just take it easy hun and you'll be back to normal in no time. If you have any other questions don't be afraid to ask! =)
I had surgery in 2005 dx with Endo and Adenomyosis, hundreds of polyps & fibroids were removed also. I was put on hormones for months after and tried several kinds, but they only made my symptoms worse; my bleeding doubled and my emotions were affected to where they finally took me off of them.
Everything grew back and now my ovaries are affected more to the point they've doubled in size and causing new problems so my gyn wants to do a full hysterectomy since the Endometrial ablation didn't work so well for me. I'm hesitant to have one done since I'm now 44 and menopause may help with the problems, so I'm hoping it's sooner than later =)
How do you know what stage it was that they found? My doctor didn't tell me...or maybe she did and i don't remember... I don't know! I guess I could ask her that at my post op. appointment. Does endometriosis generally stay in one area? Or can it return in other miscelaneous places? My doctor had said that I'm lucky that we found it when I'm so young and that it hadn't yet reached any reproductive organs. She said we can monitor it closely until I am ready to have kids and keep up the birth control to hopefully keep it from spreading. How do you know if it's coming back though? Do you start to get symptoms again?
My doctor told me what stage it was at my post op check up. That was also when I found out that I have Endometriosis. I would definitely ask, I am sure they will be able to let you know. I don't think it really sticks to one area, but it can come back in the same place that it was built up before. It's something that never really goes away, it's just that when it starts to build up you can start getting pain. It can all depend on where it is building too as far as how soon symptoms will show. If it's building up near nerves you can feel pain when it's really small.
how soon is it reccomended to return to more strenuous activity? I work in a restaurant so i carry things and am on my feet for hours at a time (I'm 18 and just a hostess, but I work a lot...often ten hour shifts with hardly any time i get to sit down) I'm just not sure when the right time to go back to work is, because I wouldn't want to go to work and then not feel like i can handle running around and standing for so long! what is reccomended for this?
I was told that the recovery time is 3-6 days. That was before I could go back to work. I think you are going to kind of have to judge for yourself though because 6 days could be too soon for some people or some jobs. You could always call your doctors office and talk to a nurse to see what they reccomend. I call and talk to my nurses a lot when I have questions about how I am feeling and stuff, they are really helpful.
I am a 48 year old young woman, and suffered with severe abdominal and back pain for 1 1/2 yrs. I spent lots of time running to the ER do to the pain, and had seen several doctors. After many test, ultra sound, MRI, cat scan etc. along with pain management therapy and loads of drugs including prednisone, I finally got a doctor that knew what he was doing and did a biopsy and found that it was endometriosis. Again after suffering for over a year I was sent to one of the best hospitals to have this removed. The doctor that did the surgery had been doing this for 38 years and told me he's never seen anything like it, usually endo is a soft tissue and mine was rock hard and had spread to a large part of my abdomen including bladder, bowel, ureter and near my spine - I lost my left kidney, part of my bowel and part of my bladder do to this...had the doctors found this earlier I may not have had a huge scar down my belly and would still have my kidney. So my words to you are this, make sure your doctor listens to you and doesn't just keep giving you meds to mask the problem. Even though this has pushed me into pre-menopause I refuse to take any hormone pills as they can't not say it won't come back..I won't take that chance. If you have ongoing abdominal pains or a history of endo in your family...PLEASE make sure you tell your doctor to check for it.
I had my LAP done 1st Dec 2011 and they gave me a recovery time of 7 days. Well I am still recovering a month later. I went back to work this week the 3rd jan 2012 and i work with children I felt sick and was aching all along where I had my LAP done including my lower back and down my legs and was so exhausted. You know when you have the first sign of your period, I've had that. Is this all normal??
i was 20 years old and had my right ovary and tube removed. they had said i had the endo for well over a year and was suprised i didnt come in sooner.. i had endo on my kidneys and lower bowel. this was all removed through exploratory surgery through a cut from hip to hip. talk about recovery that took a good full 2 months.. my ovaries measured 10cm a piece which is way from normal. and i am 25 now and having problems concieving and were refered to a specialist i have been off birthcontrol for 9 months now and i fear my endo is back becasue of the symptoms i am having..so to answer your question yes for us lucky some it does come back. i am talking to my doctor about after my first child having my uterus removed so i dont have to deal with it.
I am in a less unfortunate but similar situation. I was diagnosed with Endo at the age of 22 after a VERY long battle. I had been seeing Doctors for gynae problems since the age of 13 and all that had happened was I was put on the pill. I tried EVERY type of pill going but sooner or later I had a bad reaction. Then after much persuasion and a very unfriendly female Doctor telling me I was more likely to have clamydia (chlamydia)(sp?) because I was too young for Endo I finally had a lap and got my diagnosis. My 20 minute op lasted 2 and a half hours whilst they lazered it drained an ovarian cyst. After that they put me on a high dosage of the pill (back to back) and 2 years later I reacted. So 12 months ago they told me that there was nothing else that they could do to treat it and that I should try to have a baby to relieve the symptoms and because without me doing so they are unable to fit the coil (too much scar tissue). My other half and I started trying to conceive (perhaps thats too strong a term as we tried for the relaxed approach). I have noticed my symptoms getting worse and worse over this last year and I've realised that no one has ever told me where my endo is. They just said that "it wasn't too bad" and that there was "1/3 chance it would go away, 1/3 chance it would stay the same and 1/3 chance it would get better". Rough translation they had no clue! I desperately want a baby because I can't handle this any more and I know I want to be a Mum so am concerned it is going to have a more and more negative effect on my fertility (assuming I can get pregnant). My plan is like yours to have major surgery as soon as possible. I am on day 10 past ovulation so fingers crossed. The problem is endo symptoms can be similar to early pregnancy so get my hopes up nearly every time. But fingers crossed!
Have you tried any holistic therapies or alternative meds? Someone suggested a wheat free diet to me.
I had the same kind of thing happen. I kept telling my doctor I felt like something was really wrong. I had been to the emergency room several time for the pain, each time they told me it was just cysts and they would go away mostly likely on their own. Then they both me on different birth controls and meds but nothing seemed to be helping the pain. I would have to call out of work at least two or three days a month. Finally one day I collapse and couldn't move at all for two hours. I went to emergency again and they gave me morphine and that didn't even help. I had emergency surgery and they found out my fallopian tubes were rock hard and they had to take them out. I of course was crushed because I have just gotten married and we were trying to have a baby and now this....
I go in again in about a month and I'm really scared to hear what they find this time. Especially after reading that it can still come back and it can grow on my bowels, bladder, kidneys and even lungs. Any advice you could give me?
I have always had long periods and horrendous pain. One day, I thought my appendix burst. I laid on the ground, calling my mom at work to come get me to take me to the ER, just crying. The doctors thought I had cysts that burst. They gave me pain meds and sent me home. Every month during my period, I would be out of school for at least 2-4 days curled up on my bed crying because the pain was so bad. Eventually the doctors decided to just go in with a camera to see what it was, but said that he doubted I had endometriosis because I was so young. I had a colonoscopy done at the same time. The doctors actually ended up doing surgery because he said that the endometriosis was so advanced and that he'd never seen it that bad in someone as young as I was. I was 13 at the time. I was told that I would have problems conceiving so I didn't take as many precautions as I should have to not get pregnant. Almost as soon as I got married, we got pregnant. I was lucky enough to have 3 children. Now, I'm almost 33, my kids are 11, 8, and 7. I think it's back. I'm having a lot of the same issues but with less pain. The doctors have done ultrasounds and paps and an endometrial biopsy to rule out cancer because my endometrial lining is so thick according to the ultrasound. I have lots of clotting and periods that last anywhere from 12 days to a month and half at a time. I'd like to say there is a happy ending after surgery but I'm doubting that's the case with me. On the plus side, it did stay at bay for 20 years. Now, I just need to convince my doctor to do another exploratory surgery to see if it has indeed returned.
I am struggling with my endo again. it is July and my surgery was Oct 31st. didn't even get 9 months pain free. :( feeling down, want to get pregnant in a couple of years (I am 28) but I am scared this is going to do too much damage. no bc for 4 years, was told the endo was preventing pregnancy, but post op tests came back good. back to pain when I sit, sit up out of bed, have intercourse....(I am engaged), walk, have a BM, you name it, it hurts! scared because it was ONLY stage 2 and this seems fast. I can't do any hormones, they make me shed my uteran lining....feeling desperate and sad. Are we destined to a life of pain? I feel like a let down as a woman and future wife. I just want to cry, I have wanted a child so badly....I feel like life will be very long with this disease. How quickly will it come back after I have surgery again? 9 months doesn't seem promising.
I am sorry to hear what you are going through that must be hard.
Endometriosis will grow back and it will with vengeance if they didn't remove all the Endo from the first surgery. It all depends on what was done the first time around.
Did you have excision surgery?
If you are having painful sex and BM's its possible you have a rectovaginal nodule. That could be a big source of the pain.
When you say you can't do hormones because it sheds the uterine lining I don't understand. When you take the BCP continuously for example it should stop your period completely but after 3 months you can have break through bleeding. This means no period. Are you saying you bled anyways? Sorry just trying to figure out what you mean.
What medication have you tried?
Endometriosis is pretty much a life long battle because of adhesions, regrowth of Endo etc. It has been said that many women by the time they reach menopause get better at that time, hence why doctors always tell their patients to get pregnant. However pregnancy won't stop Endo from growing and there are many misconceptions about that.
I was stage IV and I conceived. It took over a year. There are some women with Stage I that can't conceive the only way you will know is when you try.
I have had surgery to remove endro twice now. Once when I was 18 and now again at 23. This time was way worse because I let it get bad. I was to busy planning a wedding , buying a house,going to school and, thinking it was not possible that I had it again. It grew all over my uterus, bladder, and many other places. It covered anything it could in just three months. After my first surgery my doctor put me on 2 birth controls a day with no sugar pills to stop my period. The second time around he put the mirena in while I was under for surgery. Has anyone else had a doctor do this stuff?
One thing that people don't know about Endo is that it doesn't spread. It is either there and can't be seen by the untrained eye and is not properly excised (cut out) or it is lasered. So at one surgery it may be on one side then the next on the other.. It doesn't mean it spread it just means it wasn't completely done the first time around.
No med will stop the growth the purpose of the meds like BCP, Mirena and Lupron is to stop periods therefore stop the pain. Most doctors have no idea and tell their patients it will stop Endo from Growing and that is a huge misconception. More awareness and more competent Excision surgeons are necessary if you want relief from this disease.
Please find a good excision Endo surgeon that is your only hope of relief.
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