Aa
What do I do?!
In March of 2005 I went to a sexual health clinic and mentioned that I was having minor pain on my right side when sneezing etc. The doctor advised I probably had a cyst, and if I was concerned, to let my family doctor know. I let it go.
In June of 2007, I was finding that the pain on the right side was becoming more persistent, especially when laying down and coughing, or sneezing. My family doctor referred me to a gynecologist to be seen in March of 2008.
In October of 2007, I was working out and experienced an awful shooting pain in my right side. I rested, and let it go. A few days later I was driving, and sneezed. The pain was so incredible that I nearly drove the car off the road. I realized I needed to see someone immediately. I went to the walk in clinic and had an ultrasound done. They said I had a 2inch hemorrhaging cyst on my right ovary, and in six weeks, I should return.
Three weeks later, I found myself in the hospital with horrible back pain accompanied with sharp shooting pains on my right side. They could not find anything (not even the cyst), gave me a shot for the pain and sent me home.
Being alarmed by the severity of my pain, I demanded to see a gyno sooner than March. There weren't any taking patients within the tri-city area, so I was advised to look for someone on my own. Finally, after calling doctors and begging them to see me, someone agreed to see me in Jan. of 08.
After explaining my pain, the gyno advised that she suspected I have endo.
She put me on LoEstrin to take continuously (no placebo week), and told me to come back in May.
The last 16 days I have been discharging black stuff, along with regular menses. I have been in a lot of pain, particularly aching in my lower right back, which sometimes radiates up my spine and down my right leg. When stretching, coughing, laughing, sneezing, during sex, bowel movements, and sometimes urinating, I find myself wrenching over in pain. Even reaching over to get the remote control had me doubled over.
This just passed Monday I was admitted to the hospital for a severe migraine accompanied with high blood pressure (I am just shy of 22, healthy eater and quite thin), and pains in my pelvis. They said that they suspected that I had been hemorrhaging again and was experiencing Toxic Shock from the blood.
The gyno wants me to keep up with the LoEstrin until May. I am getting to my wits end. I have missed 6 days of work this year already (we are given 10 a year!!), and my relationship with my boyfriend is suffering as I rarely want to be intimate, and when we are, it usually ends up with me in tears. My social life has gone to the dogs, my roomie feels like he has to walk on eggshells with me being so moody, and I think I have been denied a promotion recently because I am not 100% on my game. I am not nearly as active as I used to be and am gaining weight, which is resulting in a lowering of my self-esteem. As if that wasn't enough, the pain is horrendous. Getting out of a car puts me on the brink of tears.
I have been using Anaprox for pain, but it really doesn't do anything. I have more recently been taking three 400mg extra strength advils all at once, and even that doesn't completely alleviate it.
I need some advice, and some encouragement. I think this is beginning to send me into a downward spiral that could result in depression. I feel so defeated, angry, frustrated, and upset with this situation, and all I want at this point is for them to remove the entire thing just to end this nightmare.
In June of 2007, I was finding that the pain on the right side was becoming more persistent, especially when laying down and coughing, or sneezing. My family doctor referred me to a gynecologist to be seen in March of 2008.
In October of 2007, I was working out and experienced an awful shooting pain in my right side. I rested, and let it go. A few days later I was driving, and sneezed. The pain was so incredible that I nearly drove the car off the road. I realized I needed to see someone immediately. I went to the walk in clinic and had an ultrasound done. They said I had a 2inch hemorrhaging cyst on my right ovary, and in six weeks, I should return.
Three weeks later, I found myself in the hospital with horrible back pain accompanied with sharp shooting pains on my right side. They could not find anything (not even the cyst), gave me a shot for the pain and sent me home.
Being alarmed by the severity of my pain, I demanded to see a gyno sooner than March. There weren't any taking patients within the tri-city area, so I was advised to look for someone on my own. Finally, after calling doctors and begging them to see me, someone agreed to see me in Jan. of 08.
After explaining my pain, the gyno advised that she suspected I have endo.
She put me on LoEstrin to take continuously (no placebo week), and told me to come back in May.
The last 16 days I have been discharging black stuff, along with regular menses. I have been in a lot of pain, particularly aching in my lower right back, which sometimes radiates up my spine and down my right leg. When stretching, coughing, laughing, sneezing, during sex, bowel movements, and sometimes urinating, I find myself wrenching over in pain. Even reaching over to get the remote control had me doubled over.
This just passed Monday I was admitted to the hospital for a severe migraine accompanied with high blood pressure (I am just shy of 22, healthy eater and quite thin), and pains in my pelvis. They said that they suspected that I had been hemorrhaging again and was experiencing Toxic Shock from the blood.
The gyno wants me to keep up with the LoEstrin until May. I am getting to my wits end. I have missed 6 days of work this year already (we are given 10 a year!!), and my relationship with my boyfriend is suffering as I rarely want to be intimate, and when we are, it usually ends up with me in tears. My social life has gone to the dogs, my roomie feels like he has to walk on eggshells with me being so moody, and I think I have been denied a promotion recently because I am not 100% on my game. I am not nearly as active as I used to be and am gaining weight, which is resulting in a lowering of my self-esteem. As if that wasn't enough, the pain is horrendous. Getting out of a car puts me on the brink of tears.
I have been using Anaprox for pain, but it really doesn't do anything. I have more recently been taking three 400mg extra strength advils all at once, and even that doesn't completely alleviate it.
I need some advice, and some encouragement. I think this is beginning to send me into a downward spiral that could result in depression. I feel so defeated, angry, frustrated, and upset with this situation, and all I want at this point is for them to remove the entire thing just to end this nightmare.
Well, I will be 25 in a couple of months, but I haven't had any children. Mind you, I have no desire to have any kids and would welcome the hysterectomy for the added benefit of not having to worry about getting pregnant.
My menstrual cycles (when I get them), are so incredibly painful... especially when I have a bowel movement. It hurts so bad that I am on the brink of tears every time I relieve myself and I literally dread my bathroom breaks.
I have debated asking for a hysterectomy but being realistic, I have a feeling that I will be denied. I am sure I will get the "you're too young" stuff in addition to "you haven't had kids yet", despite not wanting them. *sigh* All I want is to be put out of my misery!
My menstrual cycles (when I get them), are so incredibly painful... especially when I have a bowel movement. It hurts so bad that I am on the brink of tears every time I relieve myself and I literally dread my bathroom breaks.
I have debated asking for a hysterectomy but being realistic, I have a feeling that I will be denied. I am sure I will get the "you're too young" stuff in addition to "you haven't had kids yet", despite not wanting them. *sigh* All I want is to be put out of my misery!
Hi there!
I haven't been on this forum much lately and just happened to see this thread. I'm glad I read it. Everything sounds all too familiar...
I've had 4 laps done all with the removal of endo plus 1/2 of an ovary removed. I now have 2 kids and am requesting a partial hyster. My new GYN won't do one. She says I am to young for it (25)...She put me on Seasonique BCP's saying they will help me. I have been on every pill out there I swear since I was 14 and nothing has helped lol!! I don't get why they don't listen! My last lap was in Jan. '08. Things have been getting worse again also. I had 1 menstrual cycle in the past 5 monthe (the BCP's are a 3month course) and it was the worst cycle I've had in years!!! I could not believe the pain I was experiencing. I wrote it down to show her when I see her next month. Anyways, I wish I could help more in the hyster part...but I'll let you know more when I see my GYN again next month....Good luck with everything!
I haven't been on this forum much lately and just happened to see this thread. I'm glad I read it. Everything sounds all too familiar...
I've had 4 laps done all with the removal of endo plus 1/2 of an ovary removed. I now have 2 kids and am requesting a partial hyster. My new GYN won't do one. She says I am to young for it (25)...She put me on Seasonique BCP's saying they will help me. I have been on every pill out there I swear since I was 14 and nothing has helped lol!! I don't get why they don't listen! My last lap was in Jan. '08. Things have been getting worse again also. I had 1 menstrual cycle in the past 5 monthe (the BCP's are a 3month course) and it was the worst cycle I've had in years!!! I could not believe the pain I was experiencing. I wrote it down to show her when I see her next month. Anyways, I wish I could help more in the hyster part...but I'll let you know more when I see my GYN again next month....Good luck with everything!
So... it has been over 2 years since my surgery. Reading my comments reminds me of how horrible it was. I since had impacted wisdom teeth removed and then got dry sockets... the pain from that cannot rival any other. Haha!
Anyway, I have been on the LoEstrin since the surgery and go 3-4 packs of it before I have a period. When I do, it isn't too terrible, except when I have a bowel movement... then I am doubled over in pain. I have been getting more and more pain from simple movements like stretching etc. so I am guessing that things are getting bad again.
I wanted to know if anyone has requested a hysterectomy, and if so, what the process was etc.?
Anyway, I have been on the LoEstrin since the surgery and go 3-4 packs of it before I have a period. When I do, it isn't too terrible, except when I have a bowel movement... then I am doubled over in pain. I have been getting more and more pain from simple movements like stretching etc. so I am guessing that things are getting bad again.
I wanted to know if anyone has requested a hysterectomy, and if so, what the process was etc.?
I had a bowel movement today that made me think I was going to die. Seriously... the pain was excruciating. My period is full flow, so that probably didn't help matters.
I showered today... it felt great. I removed the bandages. Like it has been, the lower one looks good, the belly button one is greenish purpley yellow.
I am tired all the time... even without the painkillers. All I want to do is sleep, and simple tasks seem incredibly exhausting.
Have been reading what I can find on the internet about the adenomyosis. Doesn't look too promising. Seems like the only "cure" is a hysterectomy, but something tells me they wont do that on me.
What is Lupron and what is it like to be on it?
I showered today... it felt great. I removed the bandages. Like it has been, the lower one looks good, the belly button one is greenish purpley yellow.
I am tired all the time... even without the painkillers. All I want to do is sleep, and simple tasks seem incredibly exhausting.
Have been reading what I can find on the internet about the adenomyosis. Doesn't look too promising. Seems like the only "cure" is a hysterectomy, but something tells me they wont do that on me.
What is Lupron and what is it like to be on it?
Okay, first of all you have to remember that the bowels are just about the last organs to start working properly after anesthesia so not having what may seem like a normal bowel movement is normal for a few days. Don't worry, you won't explode or anything, I think I actually went almost 2 weeks without one after one of my laps. Finally broke down and took a laxative/stool softener. Secondly, about the belly button incision, unless it's red, hot and oozing it's probably fine. If it feels hot to the touch or you have red streaks radiating from the incision then, yes, you should let the doc take a peek at it. If it's been bandaged up and hasn't been able to get any air to the incision it makes sense that it's not healing quickly. I don't know how you're built, but well, let's just say that I'm a bit short for my weight so I've got some excess flab around the belly button area anyway, but I've only had one instance where an incision got infected. I always washed them with anti-bacterial soap and water and used peroxide sometimes just to be on the safe side.
Every surgery is different, I've had some where I felt as though I could run a marathon the next day and others where I didn't want to move for weeks...you know your body better than anyone so just don't over do it and I do hope you're feeling better today.
Shelley
Every surgery is different, I've had some where I felt as though I could run a marathon the next day and others where I didn't want to move for weeks...you know your body better than anyone so just don't over do it and I do hope you're feeling better today.
Shelley
Aww... I feel for you, I really do.
Well, I'd go to the clinic - at least it'll put your mind to rest, eh?
Well, I'd go to the clinic - at least it'll put your mind to rest, eh?
There is a clear fluid coming out of the belly button wound... the skin around the belly button feels like it is getting firmer (from swelling?).
I had another poo. This one was horrible. I don't even want to talk about it.
This sucks. I am feeling pretty miserable right now.
I had another poo. This one was horrible. I don't even want to talk about it.
This sucks. I am feeling pretty miserable right now.
Help with the recovery process? Well you just need to take it easy and don't do too much too soon. Also, gentle exercise in a week or two will help.
I don't think it's infected from what you've said. Mine were very similar and I thought I had an infection too, but it turns out they were fine. Like I said, yellow puss, odour, fire engine red and angry. Other than that I'm not sure.
I don't think it's infected from what you've said. Mine were very similar and I thought I had an infection too, but it turns out they were fine. Like I said, yellow puss, odour, fire engine red and angry. Other than that I'm not sure.
Warning...the following may be considered TMI (too much information).
I pooed! Haha!
It was actually not as horrible as I was expecting. I figured with all the T3's I would be constipated, but I was smart enough to eat a lot of bananas and other fiber foods. I didn't use any force... I just shifted around a little bit, and it did it's thing on its own.
So I pulled back the band-aids on both incisions. The lower one looks awesome. The belly button one, not so much. It's purplish red, and there was some dried and wet blood. Still debating whether or not it's infected or just bruised really bad. Any ideas on how to definitively tell?
I can feel that I am still releasing a lot of gas. I am still quite bloated, and I have been burping/farting a lot. Pain in my shoulders are gone, but when I lay down, I sometimes feel like I have pressure in my heart...
Back is hurting a lot... I have been walking slouched over, and sleeping on the couch, so I think it is taking a nasty toll on my back. I really want to stretch out onto my stomach, but obviously I can't.
So the doc said that the surgery may stir up hormones that will induce my period. Up until now, I was pretty lucky with just a bit of spotting. Today I am bleeding a bit more, and I can feel the pressure in my uterus. I was hoping I wouldn't get a period... it only adds to the discomfort, and really isn't doing much for my mood.
This whole "oh you will be up and doing everything in 2 days" **** is.... well... ****. I am really glad I have 2 weeks off of work... I don't think I would last an hour if I were to go back sooner.
Anyway, any suggestions on how to help the recovery process? Any info on Adenomyosis? Any tips on how to determine for sure if the incision is infected or not? Thanks!
I pooed! Haha!
It was actually not as horrible as I was expecting. I figured with all the T3's I would be constipated, but I was smart enough to eat a lot of bananas and other fiber foods. I didn't use any force... I just shifted around a little bit, and it did it's thing on its own.
So I pulled back the band-aids on both incisions. The lower one looks awesome. The belly button one, not so much. It's purplish red, and there was some dried and wet blood. Still debating whether or not it's infected or just bruised really bad. Any ideas on how to definitively tell?
I can feel that I am still releasing a lot of gas. I am still quite bloated, and I have been burping/farting a lot. Pain in my shoulders are gone, but when I lay down, I sometimes feel like I have pressure in my heart...
Back is hurting a lot... I have been walking slouched over, and sleeping on the couch, so I think it is taking a nasty toll on my back. I really want to stretch out onto my stomach, but obviously I can't.
So the doc said that the surgery may stir up hormones that will induce my period. Up until now, I was pretty lucky with just a bit of spotting. Today I am bleeding a bit more, and I can feel the pressure in my uterus. I was hoping I wouldn't get a period... it only adds to the discomfort, and really isn't doing much for my mood.
This whole "oh you will be up and doing everything in 2 days" **** is.... well... ****. I am really glad I have 2 weeks off of work... I don't think I would last an hour if I were to go back sooner.
Anyway, any suggestions on how to help the recovery process? Any info on Adenomyosis? Any tips on how to determine for sure if the incision is infected or not? Thanks!
My belly button incision is purplish red, and is incredibly tender to the touch. The lower incision is totally fine. Doesn't really hurt, and isn't showing signs of bruising or anything.
Still haven't pooed.
For the most part I am able to get around... just have trouble getting up from laying or sitting down. Haven't been eating much... haven't had that much of an appetite.
Sleeping A LOT. I have been taking the T3's and just passing out. I have probably slept more than I have been awake (which is good).
Getting a little restless. I want to take a shower/bath, but don't think that it's a good idea until my belly button incision shows signs of improvement. If it doesn't seem to be getting any better, I will go to the clinic.
I have been by myself since Friday afternoon, so I've been doing everything on my own. It's not easy. If you're planning to have a lap done, try to arrange to have someone around to help you out for a couple of days. I think it would have been a lot easier on my body had there been someone around to help me up and around today.
Anyway, any further advisement/explanations/experience on the Adenomyosis would be great.
Still haven't pooed.
For the most part I am able to get around... just have trouble getting up from laying or sitting down. Haven't been eating much... haven't had that much of an appetite.
Sleeping A LOT. I have been taking the T3's and just passing out. I have probably slept more than I have been awake (which is good).
Getting a little restless. I want to take a shower/bath, but don't think that it's a good idea until my belly button incision shows signs of improvement. If it doesn't seem to be getting any better, I will go to the clinic.
I have been by myself since Friday afternoon, so I've been doing everything on my own. It's not easy. If you're planning to have a lap done, try to arrange to have someone around to help you out for a couple of days. I think it would have been a lot easier on my body had there been someone around to help me up and around today.
Anyway, any further advisement/explanations/experience on the Adenomyosis would be great.
You are NOT a big baby! It's totally normal that you are going through all of this pain. Quite frankly I think it is important for people who are having an appointment to know that it's not going to heal in 3 or 4 days and that they need to take time off. If they can get someone to help them out for a week or so then all the better. To give people false hope about how easy and quick the procedure will be is not a good idea in my opinion.
Yeah, I was hunched over but I slept in bed, which was right near the toilet. I did have someone to look after me but then that only lasted a day because they had to go and see to their other daughter, leaving me alone 2 hours from my home. So whatever I did had to be done by myself. Fun times :-)
I would go to the Doctor tomorrow if your belly button doesn't heal. I seem to recall not doing a poo for ages too.
Yeah, I was hunched over but I slept in bed, which was right near the toilet. I did have someone to look after me but then that only lasted a day because they had to go and see to their other daughter, leaving me alone 2 hours from my home. So whatever I did had to be done by myself. Fun times :-)
I would go to the Doctor tomorrow if your belly button doesn't heal. I seem to recall not doing a poo for ages too.
I am in Canada.
I just woke up... and I feel pretty rough. The incision on my bellybutton is still incredibly sore, whereas the other incision doesn't really hurt at all. I have internal pain, but nothing more severe than my normal endo pain. Really, all the pain is in the bellybutton cut. My back is starting to really hurt too (probably from the way I am walking hunched over and the way I have been sleeping... on the couch).
I haven't had a bowel movement since Thursday morning, and so I am starting to get nervous and worried that I will need to take one soon. I don't think I will be able to relieve myself. I can barely pee without bawling my eyes out, never mind having to push out a poo.
I feel pretty awful right now.
Sorry to those of you reading this who are scheduled for an appt. Ignore me, I am just a big baby.
I just woke up... and I feel pretty rough. The incision on my bellybutton is still incredibly sore, whereas the other incision doesn't really hurt at all. I have internal pain, but nothing more severe than my normal endo pain. Really, all the pain is in the bellybutton cut. My back is starting to really hurt too (probably from the way I am walking hunched over and the way I have been sleeping... on the couch).
I haven't had a bowel movement since Thursday morning, and so I am starting to get nervous and worried that I will need to take one soon. I don't think I will be able to relieve myself. I can barely pee without bawling my eyes out, never mind having to push out a poo.
I feel pretty awful right now.
Sorry to those of you reading this who are scheduled for an appt. Ignore me, I am just a big baby.
Aww, I really feel for you right now. Yes, it does hurt and it does take time to heal. I would never be able to go back to work within a few days - how ridiculous!
Your belly button incision could be infected. I seem to recall bruising, but to what extent is it purple? Yes, it does hurt even with painkillers. Given that painkillers don't help with my period pain, I'm not surprised they don't help with surgery. Does your belly button smell funky? You know it's funny that even 5 years after my surgery, my belly button has never really been the same. I don't mean to be gross but it still smells a little off - not like I can smell it standing up or even with my nose close, but if I see if there's any lint in there it does. Eww huh? hehe
If you really are worried about infection I would go to the doctor, but be realistic - it's only been a day or two right? Give it a couple more and see what happens UNLESS it is seriously turning black or you can smell it or it's oozing or it's just excruciating beyond belief. I make the mistake often of not seeking help at hospital when I need it, which happens quite often.
I don't think having adenomyosis means you have a tumour - I think they just mean the bit of endo that's in the wall is a small, solid mass. DO NOT freak out about that!
Take it easy, I have the computer on so if you have any more questions let me know. Where are you by the way? I'm in Australia and it's 12:47pm.
Mel
Your belly button incision could be infected. I seem to recall bruising, but to what extent is it purple? Yes, it does hurt even with painkillers. Given that painkillers don't help with my period pain, I'm not surprised they don't help with surgery. Does your belly button smell funky? You know it's funny that even 5 years after my surgery, my belly button has never really been the same. I don't mean to be gross but it still smells a little off - not like I can smell it standing up or even with my nose close, but if I see if there's any lint in there it does. Eww huh? hehe
If you really are worried about infection I would go to the doctor, but be realistic - it's only been a day or two right? Give it a couple more and see what happens UNLESS it is seriously turning black or you can smell it or it's oozing or it's just excruciating beyond belief. I make the mistake often of not seeking help at hospital when I need it, which happens quite often.
I don't think having adenomyosis means you have a tumour - I think they just mean the bit of endo that's in the wall is a small, solid mass. DO NOT freak out about that!
Take it easy, I have the computer on so if you have any more questions let me know. Where are you by the way? I'm in Australia and it's 12:47pm.
Mel
I am in so much pain right now it isn't even funny. The incision on my belly button hurts incredibly bad... bad enough to the point that I am beginning to think it might be infected. Last night I stayed at my boyfriends house, and he was lifting me up out of bed, so I wasn't using my muscles, but today I have been at home alone. Getting up makes me feel sick to my stomach and I am getting dizzy a lot. I check my temp, and it seems fine.
This sucks... a lot. People who say they go in on Thurs. or Fri. and go back to work the following Mon. are either superhuman, or just fricken crazy. I think I would die... literally.
Thank god for painkillers... because if the pain with them is this awful, without them I don't know what I would do.
BondyinOz thanks for your reply. So does having adenomyosis mean I have a tumor, or that I could develop one?
Is it normal for the area around the incision to go purple? Should I be concerned that it's infected? Is it normal for it to hurt so much.. even with the painkillers?
This sucks... a lot. People who say they go in on Thurs. or Fri. and go back to work the following Mon. are either superhuman, or just fricken crazy. I think I would die... literally.
Thank god for painkillers... because if the pain with them is this awful, without them I don't know what I would do.
BondyinOz thanks for your reply. So does having adenomyosis mean I have a tumor, or that I could develop one?
Is it normal for the area around the incision to go purple? Should I be concerned that it's infected? Is it normal for it to hurt so much.. even with the painkillers?
Hi there,
I'm so sorry that I didn't see this before your lap - I could've also given you advice and encouragement! I'm 24 going on 25 and had my first surgery at age 20. I wasn't really prepared for how it was going to be or how I would feel afterwards. I had the lap, hysteroscopy and cystoscopy in the same procedure and, although I had so many major symptoms, they didn't find a lot of Endo there. Still, they lasered and I hurt like hell. I was in recovery for hours longer than they normally allow for "day surgery". Unlike you, you lucky thing, I didn't take well to the anaesthetic.
Adenomyosis is when the Endo is in the wall of the uterus - I may also have this funnily enough. My literature suggests that a 'troublesome non-cancerous tumour (adenomyoma)' may be present. That's really all I've been told about it.
How you're feeling now is so totally normal - I went back to classes at Uni after a couple of weeks and couldn't sit down for too long because it was so painful, so I stood up but then I was kind of doubled over so that didn't work either. My lecturer (who was a lovely man) was so angry at me for being there and apparently not taking care of myself. Prepare yourself for a possibly long recovery. It is hard for me to know how long it took because I also was diagnosed with Chronic Fatigue Syndrome at around the same time.
Within a year I was having the same symptoms again and so I went back to my gyno. She said that I couldn't possibly have the Endo grow back (which is a lie by the way) and that it was probably just adhesions or scar tissue so we'd have to do another lap. I totally didn't want to go through that again so soon, so I let it go. I ended up putting off that second surgery until now. Yeah, I know, I'm a chicken who put up with awful symptoms for 5 years.
So 5 years later I am scheduled for surgery in September. But this time I am going to be staying at least one night in the hospital if not two if they find more than they thought. I am so happy with my new gyno, who is a guy. I never thought I'd see a male gyno but he is one of the best surgeons in my state and that's great!
I hope you start to feel a bit more human in the next few weeks - and I say weeks, not days. There's no point trying to pretend you'll be cured in a couple of days, because that wasn't my experience, but I sure hope you start to feel better as soon as possible! I think that juliesmom was incredibly lucky!
If you have any other questions, please don't hesitate to ask. I'll be watching this thread now. I hope I haven't sounded too dark and dismal, but every body is different and you cannot expect one to act the same way as another.
Mel :-)
I'm so sorry that I didn't see this before your lap - I could've also given you advice and encouragement! I'm 24 going on 25 and had my first surgery at age 20. I wasn't really prepared for how it was going to be or how I would feel afterwards. I had the lap, hysteroscopy and cystoscopy in the same procedure and, although I had so many major symptoms, they didn't find a lot of Endo there. Still, they lasered and I hurt like hell. I was in recovery for hours longer than they normally allow for "day surgery". Unlike you, you lucky thing, I didn't take well to the anaesthetic.
Adenomyosis is when the Endo is in the wall of the uterus - I may also have this funnily enough. My literature suggests that a 'troublesome non-cancerous tumour (adenomyoma)' may be present. That's really all I've been told about it.
How you're feeling now is so totally normal - I went back to classes at Uni after a couple of weeks and couldn't sit down for too long because it was so painful, so I stood up but then I was kind of doubled over so that didn't work either. My lecturer (who was a lovely man) was so angry at me for being there and apparently not taking care of myself. Prepare yourself for a possibly long recovery. It is hard for me to know how long it took because I also was diagnosed with Chronic Fatigue Syndrome at around the same time.
Within a year I was having the same symptoms again and so I went back to my gyno. She said that I couldn't possibly have the Endo grow back (which is a lie by the way) and that it was probably just adhesions or scar tissue so we'd have to do another lap. I totally didn't want to go through that again so soon, so I let it go. I ended up putting off that second surgery until now. Yeah, I know, I'm a chicken who put up with awful symptoms for 5 years.
So 5 years later I am scheduled for surgery in September. But this time I am going to be staying at least one night in the hospital if not two if they find more than they thought. I am so happy with my new gyno, who is a guy. I never thought I'd see a male gyno but he is one of the best surgeons in my state and that's great!
I hope you start to feel a bit more human in the next few weeks - and I say weeks, not days. There's no point trying to pretend you'll be cured in a couple of days, because that wasn't my experience, but I sure hope you start to feel better as soon as possible! I think that juliesmom was incredibly lucky!
If you have any other questions, please don't hesitate to ask. I'll be watching this thread now. I hope I haven't sounded too dark and dismal, but every body is different and you cannot expect one to act the same way as another.
Mel :-)
So my lap was yesterday. They cauterized a bunch of endometriosis on my left side, and apparently there was a patch right where the uterus meets the cervix. They also diagnosed me with "Adenomyosis". They haven't really explained to me what that is, and what it does. I was told that we would discuss it in my post-op appt.
Anyone have any idea what it is? I googled it, but I still don't really get it. Any info would be appreciated!
Anyway, I am sore as all hell. I feel like I was beaten up, and I am bruising up pretty badly. I apparently took incredibly well to the anesthesia. I was eating and drinking no problem after the surgery, and the nurses said they were astounded at how responsive I was afterward. I still need a little help walking around (I feel unbalanced), and getting up and down from bed, and the toilet. Luckily my boyfriend is the sweetest man on earth and has taken really good care of me :)
I am so puffy, I looked like I was pregnant yesterday. It has gone down a lot since, but I still look like I gained 25 pounds. My shoulder pain has dissipated, so that's good... (pain killers don't do anything for that it seems).
I feel like the simplest things are a serious chore. Going from one room to another takes the breath out of me, and it hurts to breathe too deeply.
They have me taking 2 T3's every 4-6 hours. I find that they keep me awake and restless, so I called the doc today and asked if it was ok for me to take percocets before bed as they knock me out. She said that wouldn't be a problem.
Anyway, about the adenomyosis... any advisement on that would be greatly appreciated. Thanks!!
Anyone have any idea what it is? I googled it, but I still don't really get it. Any info would be appreciated!
Anyway, I am sore as all hell. I feel like I was beaten up, and I am bruising up pretty badly. I apparently took incredibly well to the anesthesia. I was eating and drinking no problem after the surgery, and the nurses said they were astounded at how responsive I was afterward. I still need a little help walking around (I feel unbalanced), and getting up and down from bed, and the toilet. Luckily my boyfriend is the sweetest man on earth and has taken really good care of me :)
I am so puffy, I looked like I was pregnant yesterday. It has gone down a lot since, but I still look like I gained 25 pounds. My shoulder pain has dissipated, so that's good... (pain killers don't do anything for that it seems).
I feel like the simplest things are a serious chore. Going from one room to another takes the breath out of me, and it hurts to breathe too deeply.
They have me taking 2 T3's every 4-6 hours. I find that they keep me awake and restless, so I called the doc today and asked if it was ok for me to take percocets before bed as they knock me out. She said that wouldn't be a problem.
Anyway, about the adenomyosis... any advisement on that would be greatly appreciated. Thanks!!
I get completely jacked up before surgery and you'd think as many times as I've been through it that it would seem like no big deal anymore...not true. I've gotten to where I just go ahead and ask the anesthesiologist for something to calm me as soon as the IV is placed that way I can nap or just relax until they're ready for me. Versed is a good choice, it works quickly but doesn't make you feel stupid.
Good Luck with the surgery.
Good Luck with the surgery.
So I am getting cold feet. The thought of going under the knife is freaking me out, and part of me wants to bail.
Not to mention, I am beginning to wonder "what if they don't find anything? What if they go in, and there is nothing wrong? Wont I feel like a total jackass!"
I have always been like that... I could be in the worst of pain, and then when it comes down to it, I am worried it wont be anything and that all I will have accomplished is wasting someones time, and making a fool of myself.
I have to keep reminding myself that I AM in pain, and that it is real, and that they will definitely find something because this pain isn't just materializing out of thin air. Sometimes I will deliberately do something just to cause pain (like stretch or something), just to keep the reminder that the pain is "real".
I probably sound crazy.
Am I the only one who has experienced this, or am I out of my tree? LOL! Please, if you do it too, let me know!
Not to mention, I am beginning to wonder "what if they don't find anything? What if they go in, and there is nothing wrong? Wont I feel like a total jackass!"
I have always been like that... I could be in the worst of pain, and then when it comes down to it, I am worried it wont be anything and that all I will have accomplished is wasting someones time, and making a fool of myself.
I have to keep reminding myself that I AM in pain, and that it is real, and that they will definitely find something because this pain isn't just materializing out of thin air. Sometimes I will deliberately do something just to cause pain (like stretch or something), just to keep the reminder that the pain is "real".
I probably sound crazy.
Am I the only one who has experienced this, or am I out of my tree? LOL! Please, if you do it too, let me know!
So I went in for my pre-op today. Had ultrasounds and blood work done. I know the woman doing the ultrasounds saw some things because she was highlighting a lot on the screen. I think I might have another cyst.
Anyway, I am going to be taking 2 weeks off of work after the surgery to heal. They have alloted 1 hour for my surgery, so if they need more time, I will have to come back again, which I really don't want. Hopefully they can take care of it all at once.
This whole thing is very daunting. I am pretty freaked out, and don't like the idea that I wont know how the surgery went until much later after. I asked them to tell my mom (who will be there during the surgery)... that way she can tell me after the drugs have worn off.
Funny thing happened... they accidentally put my birth date in for 20 years earlier than when I was actually born. When I was getting registered for my blood work, the woman said to me "How old are you??" and I replied "21", she said "Ohhh, I was just thinking... damn you look good for 41!!" Hahah!
Any more advice or thoughts are really appreciated!
Anyway, I am going to be taking 2 weeks off of work after the surgery to heal. They have alloted 1 hour for my surgery, so if they need more time, I will have to come back again, which I really don't want. Hopefully they can take care of it all at once.
This whole thing is very daunting. I am pretty freaked out, and don't like the idea that I wont know how the surgery went until much later after. I asked them to tell my mom (who will be there during the surgery)... that way she can tell me after the drugs have worn off.
Funny thing happened... they accidentally put my birth date in for 20 years earlier than when I was actually born. When I was getting registered for my blood work, the woman said to me "How old are you??" and I replied "21", she said "Ohhh, I was just thinking... damn you look good for 41!!" Hahah!
Any more advice or thoughts are really appreciated!
My surgery is on the 17th of this month. I am really freaked out about it... but I am kinda glad that it is sooner than later.
Most of the things you'll want to know won't be until after the lap and the doc has actually seen the extent of the endo, if that's what the dx is. You need to ask them to stage it for you, that will tell you how much they actually found, ask about potentially problematic adhesions that weren't excised and if they found cysts and/or endometriomas. After dealing with endo for a while you get to know your body and you can tell when it's giving you problems or if you have cysts...you learn to notice the signs and how to deal with those issues as they arise. Ask about starting a treatment plan as soon as possible after the lap, if you choose Lupron or bc it needs to be started ASAP so that you can avoid having a period which will allow the endo to grow. Don't waste time, you only have one body and have to take care of it. It sounds like if it is endo they have found it pretty early on and the earlier you being treatment the better off you'll be, you're young and single so I'm guessing that babies aren't in your near future....
As for the lap, it's a quick recovery, just a few days til you're back on your feet and doing pretty much whatever you want to and feel like doing. A lot of docs will do them on Thursday or Friday of one week and send you back to work the following Monday. My suggestion post op is to make sure and get yourself up and moving several times a day. They will fill your abdominal cavity with gas so that your organs will be easier to see with the scope, that gas will be expelled and/or absorbed by your body but you still run a risk of some of it getting trapped under your ribs and it is painful! I learned the hard way that I had to force myself to get up and walk, to keep things moving or I was going to regret it...I've had 4 laproscopic procedures so this isn't my first rodeo, I've done and tried it all at some point or another. Plan to stay a day or so and don't over do it, you'll know what you're capable of. If there is anything else I can do for you, don't hesitate to send me a message...I'll try to help. Also, if you're prone to nausea ask the anesthesiologist about giving you something like zofran in your IV before you're put under, it greatly reduces the upset tummy after surgery.
Best of luck, Shelley
As for the lap, it's a quick recovery, just a few days til you're back on your feet and doing pretty much whatever you want to and feel like doing. A lot of docs will do them on Thursday or Friday of one week and send you back to work the following Monday. My suggestion post op is to make sure and get yourself up and moving several times a day. They will fill your abdominal cavity with gas so that your organs will be easier to see with the scope, that gas will be expelled and/or absorbed by your body but you still run a risk of some of it getting trapped under your ribs and it is painful! I learned the hard way that I had to force myself to get up and walk, to keep things moving or I was going to regret it...I've had 4 laproscopic procedures so this isn't my first rodeo, I've done and tried it all at some point or another. Plan to stay a day or so and don't over do it, you'll know what you're capable of. If there is anything else I can do for you, don't hesitate to send me a message...I'll try to help. Also, if you're prone to nausea ask the anesthesiologist about giving you something like zofran in your IV before you're put under, it greatly reduces the upset tummy after surgery.
Best of luck, Shelley
I went in on Tuesday to speak with my gyno. I explained that the pain has started to move to the left side, and that the pain on the right side is near constant. I advised her that the LoEstrin really hadn't done anything for the pain. She immediately suggested we do the laparoscopy, and wants me to have a pelvic and transvaginal ultrasound done. She told me she would call me this week with a date for the surgery.
About the lap... how long did it take for you girls to recover from it? What would you suggest to prepare for it? Is there anything I should know? Any tips on how to deal with pain, or something? Any advice is appreciated.
I agree with you ticked that I need to start getting copies of my tests. I hadn't really thought to ask for it, but it might be good to have in case I want a second opinion. The doctor I have seems to be pretty good though... I hope.
Shelley, are there any questions you think I should ask that might help me with this? I mean, I obviously have my own, but was wondering if you might know of something I could ask that may help me out.
I really appreciate the dialogue here. This has been a very frightening, and difficult experience for me, and having some people who actually get it to talk with is nice.
About the lap... how long did it take for you girls to recover from it? What would you suggest to prepare for it? Is there anything I should know? Any tips on how to deal with pain, or something? Any advice is appreciated.
I agree with you ticked that I need to start getting copies of my tests. I hadn't really thought to ask for it, but it might be good to have in case I want a second opinion. The doctor I have seems to be pretty good though... I hope.
Shelley, are there any questions you think I should ask that might help me with this? I mean, I obviously have my own, but was wondering if you might know of something I could ask that may help me out.
I really appreciate the dialogue here. This has been a very frightening, and difficult experience for me, and having some people who actually get it to talk with is nice.
I wouldn't worry too much about the black blood either, I just went back on continuous bc for the first time in several years and had the same thing with my first period, even for a couple of days afterward. It's cleared up now. I'm certain that we all understand your frustration, you hurt, no one seems to care, and no one will help you find out why...we've all been there and can sympathize with you. You have to be assertive when you go to these doctors and demand proper and thorough care. In this day and time doctors are so accustomed to being able to give a patient a pill to help the pain and having that satisfy the patient that they think we're all that way...not true. Yes, it is good to have the meds for the days that you just can't bare the pain, but continuing to mask the pain without diagnosing it's cause doesn't help anything in the long run. The only way to truly diagnose endo is through a lap, the doc has to see it to give you a definitive yes. Once you have a diagnosis you'll feel much better about what you've been through, then you can decide on a course of treatment. You said that you had a bf, so I'm guessing that bc would be a good option for you. If you notice that the Loestrin helps your pain, after taking it for several weeks straight, then that too is a good indicator that you have endo. You've supressed the estrogen in your body and deprived the endo of what it needs to grow and survive. Do your homework before you go back to the doctor and write down any questions you think of between now and then. Keep us posted and feel free to ask anything you need, we're here to help and listen.
Hugs, Shelley
Hugs, Shelley
One the black blood is old blood, could be a sign of endo. Have they sent you to have a ca-125 blood test? if not demand it tomorrow along with another US and book a exploritory lap. if your ca-125 is raised it could be endo as well. what did your US report say? i would get a copy of all your tests and reports so that if this doctor cant help you, you can see someone else and not have to take the same tests twice. let me know how it goes.
angela
angela
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