Emily1
04-24-2007, 09:13 PM
Hi,
I figured id keep here a virtual diary of my major experiences. Hopefully to help anyone who comes along.
I just had my second surgery in two and a half years for endometriosis. The first surgery at age 29 had helped a lot, finally a firm diagnoses and a good cleaning out. The chronic ache was gone I could feel my insides freed up. But I was left with monthly acute pain and as the months went on Id have more and more pain. I was better but worse since before I was not having acute pain episodes regularly. Sure I had had them, once in a blue moon, I never knew what they were but I had been assured it was "just" ovarian cysts which would resolve on their own. What a bunch of crap. (I had had surgery at age 17 for a ruptured corpus luteal cyst that wouldnt stop bleeding on its own, sometimes I wonder if this isnt what "caused" my endo- however at this time at age 17 the doctor mentioned in the chart that I may have endometriosis- nice he never told me)
So onto my second surgery for endo, thankfully I have myself set up pretty well now. After having gone through a ton of doctors in 15 years I have a wonderful one now who listens, responds, explains, and is my partner in health- better yet hes an entirely normal guy lol. All the searching, educating myself, worry, lack of good care, has been worth it in the end to have found him. I always knew the key for me was finding a good doctor. Major step number 1 accomplished it only took 15 years.
After a year of trying myself to find an appropriate surgeon who took my medicare insurance, I went to him one day and said UNCLE "give me the hormones I cant take this anymore". He replied " I know a surgeon here whos using excision now". I was like WHAT! Wahla she was just the person I needed and she operates much like he does, another perfect match :).
I was so relieved, but then I had spasms of worry- I wanted toradol injections to give myself, was I going to have to fight them about it? I prepared my reasoning why I should be allowed toradol injections at home with that pit of the stomach sickness that it was going to be a fight. I went to one doctor then the other, they understood. "Ok I will prescribe that for you" they both said! Considering I give myself IM b12 injections already, I cant even get to the emergency room for something that surely is an emergency room thing, Ive been told by a GI doctor to not touch oral NSAIDS, and ive taken them anyways they help but my stomach is severely hurting- toradol seemed like the perfect choice, and it has been.
One hurdle over, not only was it agreed id have surgery but that if I need to I will be capable of controlling my pain with a NSAID that I know works and will avoid my stomach. Ive been taking very small amounts of ibuprofen only a few times a month and yet it has still managed to chew up my stomach. Stomach pain like that is a clear sign you have to stop taking NSAIDS orally.
So surgery was scheduled, I had toradol injectable and pain meds, was feeling pretty safe. My plan worked for the month before surgery no acute episode.
Im one week post op now. Only spoke briefly with the doctor on the phone. They ended up keeping me in the hospital overnight (im sooo grateful) I just dont understand how people go home after this surgery. They ended up doing twice as much work as they had planned, I had endometriomas on both ovaries. Doc thinks it was the larger 5cm endometrioma that was causing the acute pain because she saw staining under it. Must be like drips from a faucet. Im looking forward to seeing the pictures. I had no idea how bad it was in there, I thought I only had one major spot below my cervix and that since it was my worst spot during my first surgery that perhaps it came back with a venegence.
Turns out it was a good thing I had refused hormones, hormones do not help endometriomas, you must have those surgically removed. I would have gotten virutally no help from hormones and all the risks of side effects.
Since I had excision surgery Im hopeful that I might not have symptoms return. But I know if I do I have a pretty good plan for dealing with it and a supportive good surgeon. At the same time I know there is only so many surgeries I can handle, this last one was pretty miserable despite pain meds throughout. I could tell she did a lot of work.
I figured id keep here a virtual diary of my major experiences. Hopefully to help anyone who comes along.
I just had my second surgery in two and a half years for endometriosis. The first surgery at age 29 had helped a lot, finally a firm diagnoses and a good cleaning out. The chronic ache was gone I could feel my insides freed up. But I was left with monthly acute pain and as the months went on Id have more and more pain. I was better but worse since before I was not having acute pain episodes regularly. Sure I had had them, once in a blue moon, I never knew what they were but I had been assured it was "just" ovarian cysts which would resolve on their own. What a bunch of crap. (I had had surgery at age 17 for a ruptured corpus luteal cyst that wouldnt stop bleeding on its own, sometimes I wonder if this isnt what "caused" my endo- however at this time at age 17 the doctor mentioned in the chart that I may have endometriosis- nice he never told me)
So onto my second surgery for endo, thankfully I have myself set up pretty well now. After having gone through a ton of doctors in 15 years I have a wonderful one now who listens, responds, explains, and is my partner in health- better yet hes an entirely normal guy lol. All the searching, educating myself, worry, lack of good care, has been worth it in the end to have found him. I always knew the key for me was finding a good doctor. Major step number 1 accomplished it only took 15 years.
After a year of trying myself to find an appropriate surgeon who took my medicare insurance, I went to him one day and said UNCLE "give me the hormones I cant take this anymore". He replied " I know a surgeon here whos using excision now". I was like WHAT! Wahla she was just the person I needed and she operates much like he does, another perfect match :).
I was so relieved, but then I had spasms of worry- I wanted toradol injections to give myself, was I going to have to fight them about it? I prepared my reasoning why I should be allowed toradol injections at home with that pit of the stomach sickness that it was going to be a fight. I went to one doctor then the other, they understood. "Ok I will prescribe that for you" they both said! Considering I give myself IM b12 injections already, I cant even get to the emergency room for something that surely is an emergency room thing, Ive been told by a GI doctor to not touch oral NSAIDS, and ive taken them anyways they help but my stomach is severely hurting- toradol seemed like the perfect choice, and it has been.
One hurdle over, not only was it agreed id have surgery but that if I need to I will be capable of controlling my pain with a NSAID that I know works and will avoid my stomach. Ive been taking very small amounts of ibuprofen only a few times a month and yet it has still managed to chew up my stomach. Stomach pain like that is a clear sign you have to stop taking NSAIDS orally.
So surgery was scheduled, I had toradol injectable and pain meds, was feeling pretty safe. My plan worked for the month before surgery no acute episode.
Im one week post op now. Only spoke briefly with the doctor on the phone. They ended up keeping me in the hospital overnight (im sooo grateful) I just dont understand how people go home after this surgery. They ended up doing twice as much work as they had planned, I had endometriomas on both ovaries. Doc thinks it was the larger 5cm endometrioma that was causing the acute pain because she saw staining under it. Must be like drips from a faucet. Im looking forward to seeing the pictures. I had no idea how bad it was in there, I thought I only had one major spot below my cervix and that since it was my worst spot during my first surgery that perhaps it came back with a venegence.
Turns out it was a good thing I had refused hormones, hormones do not help endometriomas, you must have those surgically removed. I would have gotten virutally no help from hormones and all the risks of side effects.
Since I had excision surgery Im hopeful that I might not have symptoms return. But I know if I do I have a pretty good plan for dealing with it and a supportive good surgeon. At the same time I know there is only so many surgeries I can handle, this last one was pretty miserable despite pain meds throughout. I could tell she did a lot of work.