Guest guest Posted March 12, 2006 Report Share Posted March 12, 2006 Hi Pamela, At the risk of offering unsolicited info or info you might already have, I wanted to share what I've learned recently about possible gynecological diagnoses in case any might apply to Penny. Two of the main diagnoses for which my gynecologist considers me a candidate are: 1) Adenomyosis: I think it's a form of endometriosis but it cannot be seen in a laparoscopy. With endo, the uterine lining migrates outside the uterus. With adenomyosis, however, the uterine lining actually goes into the uterine wall. That's why it can't be seen with a scope. It's possible to diagnose adeno by doing a biopsy of the uterine wall (while keeping the uterus otherwise intact). But this procedure is not 100% reliable; they sometimes miss it. It's also possible to try taking certain medications for diagnostic purposes(Lupron for sure and possibly Depo-Provera). I'm not sure if a pain relief from these meds means a woman definitely has adeno (or undetected endo) or if it just makes it highly likely. 2) Endometritis: Inflammation of the uterine lining. Can be diagnosed with a D & C. As I understand it, adeno is treated either by the same medications I already mentioned or by hysterectomy. Endometritis is treated by long-term antiobiotics. I didn't ask what she meant by " long-term. " I won't take Lupron or Depo under any circumstances because of how they would affect the health issues I already have. Also, I am sure that I don't want children so having a hysterectomy is not a big emotional loss for me. Penny, being younger, might feel differently. Of course, another possibility is that even after a D & C, a laparoscopic biopsy, medication trials, and ruling out bowel and bladder problems, a woman could still not get a diagnosis. In that case, my doctors told me that they sometimes treat the symptom by hysterectomy. The trick here is being reasonably certain that the uterus is indeed the source of the pain. For example, my friend with endo has pelvic pain but it's not in her uterus; a hysterectomy won't help her. With me, we're 99% sure it's the uterus. My doctor has had the experience of removing someone's uterus and the pain persisted anyway. So, I don't know if any of that helps. In my case, given my history, current symptoms, my refusal to take Lupron, the strong likelihood that it's indeed my uterus cramping, and the fact that I'm sure I won't have children, I'm going for the hysterectomy. I feel relieved to have finally made the decision. Now I'm just waiting for the surgeon to find a date. I hope something starts to shift for Penny soon!!! Best, Shayna Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 12, 2006 Report Share Posted March 12, 2006 Shayna I'm glad the decesion making process is over and now you just have to get the surgery and recovery behind you. Please keep us posted on when you will have the surgery. laurie > Hi Pamela, > At the risk of offering unsolicited info or info you might already > have, I wanted to share what I've learned recently about possible > gynecological diagnoses in case any might apply to Penny. > > Two of the main diagnoses for which my gynecologist considers me a > candidate are: > > 1) Adenomyosis: I think it's a form of endometriosis but it cannot be > seen in a laparoscopy. With endo, the uterine lining migrates outside > the uterus. With adenomyosis, however, the uterine lining actually > goes into the uterine wall. That's why it can't be seen with a scope. > It's possible to diagnose adeno by doing a biopsy of the uterine wall > (while keeping the uterus otherwise intact). But this procedure is not > 100% reliable; they sometimes miss it. It's also possible to try > taking certain medications for diagnostic purposes(Lupron for sure and > possibly Depo-Provera). I'm not sure if a pain relief from these meds > means a woman definitely has adeno (or undetected endo) or if it just > makes it highly likely. > > 2) Endometritis: Inflammation of the uterine lining. Can be diagnosed > with a D & C. > > As I understand it, adeno is treated either by the same medications I > already mentioned or by hysterectomy. Endometritis is treated by > long-term antiobiotics. I didn't ask what she meant by " long-term. " > > I won't take Lupron or Depo under any circumstances because of how > they would affect the health issues I already have. Also, I am sure > that I don't want children so having a hysterectomy is not a big > emotional loss for me. Penny, being younger, might feel differently. > > Of course, another possibility is that even after a D & C, a > laparoscopic biopsy, medication trials, and ruling out bowel and > bladder problems, a woman could still not get a diagnosis. In that > case, my doctors told me that they sometimes treat the symptom by > hysterectomy. The trick here is being reasonably certain that the > uterus is indeed the source of the pain. For example, my friend with > endo has pelvic pain but it's not in her uterus; a hysterectomy won't > help her. With me, we're 99% sure it's the uterus. My doctor has had > the experience of removing someone's uterus and the pain persisted anyway. > > So, I don't know if any of that helps. In my case, given my history, > current symptoms, my refusal to take Lupron, the strong likelihood > that it's indeed my uterus cramping, and the fact that I'm sure I > won't have children, I'm going for the hysterectomy. I feel relieved > to have finally made the decision. Now I'm just waiting for the > surgeon to find a date. > > I hope something starts to shift for Penny soon!!! > > Best, > Shayna > > > > > > > Medical advice, information, opinions, data and statements contained herein > are not necessarily those of the list moderators. The author of this e mail > is entirely responsible for its content. List members are reminded of their > responsibility to evaluate the content of the postings and consult with > their physicians regarding changes in their own treatment. > > Personal attacks are not permitted on the list and anyone who sends one is > automatically moderated or removed depending on the severity of the attack. > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 13, 2006 Report Share Posted March 13, 2006 Hi Shayna - you can solicit away all you like! Things with Penny seem to change every day. I have one more week till she sees the mito doc for assessment (and her brother who also has challenges). She was getting so much pain especially when in hospital being investigated for the blackouts as they couldnt get the heat packs to her quickly that last Sun decided she had to go off the bc pill. And then the pain stopped! We saw the gyno several days after and he was dumbfounded " this is not supposed to happen " .... he concluded that it may not be gynaecological after all! The reason she went on the pill in the beginning was the pain, but it made it much worse. (I will now look into why the bc pill is contraindicated in some cases of mito). I tried to quizz him again to evoke some thoughts of what it possibly could be, remembering some of the comments from the group which suggested that maybe the hormonal changes could trigger off something nearby, and he said something about excluding bladder and bowel then something else about spasm... (makes mito sense) I did ask him again whether he thought it was endo and he said well no cause the pathologist didn't (assume that included adenomyosis). He concluded that he would leave it to the mito doc to investigate and see what comes out in the wash. At least her heavy pain has stopped for now (she did have some normal period pain after she stopped the pill, but that was nothing like the other). So that nightmare has gone away for the moment (and I was indeed almost at the stage of thinking hysterectomy, as if she has mito it might not be a good idea to have children, and maybe we could get some of her eggs frozen first for future IVF just in case etc etc...) The new nightmare is total exhaustion and weakness, funny feelings in her legs and head, and a sudden severe depression so has just been started on an SNRI anti-depressant. She has attempted to go back to work today to hang onto her job but felt awful - and it's really hot here she is working in a childcare centre and didnt manage too well. I have loaded her up with sports drinks, eating and resting instructions but am worried. Will print this info out and hang onto it as who knows what is next- so nice of you to share what you are learning. p.s. I know you have made the right decision about hysterectomy, just allow lots of recovery time with nothing to do but sit in the sun. Thks again Shayna - Pamela (melas a3243g) Pamela re: Penny Hi Pamela, At the risk of offering unsolicited info or info you might already have, I wanted to share what I've learned recently about possible gynecological diagnoses in case any might apply to Penny. Two of the main diagnoses for which my gynecologist considers me a candidate are: 1) Adenomyosis: I think it's a form of endometriosis but it cannot be seen in a laparoscopy. With endo, the uterine lining migrates outside the uterus. With adenomyosis, however, the uterine lining actually goes into the uterine wall. That's why it can't be seen with a scope. It's possible to diagnose adeno by doing a biopsy of the uterine wall (while keeping the uterus otherwise intact). But this procedure is not 100% reliable; they sometimes miss it. It's also possible to try taking certain medications for diagnostic purposes(Lupron for sure and possibly Depo-Provera). I'm not sure if a pain relief from these meds means a woman definitely has adeno (or undetected endo) or if it just makes it highly likely. 2) Endometritis: Inflammation of the uterine lining. Can be diagnosed with a D & C. As I understand it, adeno is treated either by the same medications I already mentioned or by hysterectomy. Endometritis is treated by long-term antiobiotics. I didn't ask what she meant by " long-term. " I won't take Lupron or Depo under any circumstances because of how they would affect the health issues I already have. Also, I am sure that I don't want children so having a hysterectomy is not a big emotional loss for me. Penny, being younger, might feel differently. Of course, another possibility is that even after a D & C, a laparoscopic biopsy, medication trials, and ruling out bowel and bladder problems, a woman could still not get a diagnosis. In that case, my doctors told me that they sometimes treat the symptom by hysterectomy. The trick here is being reasonably certain that the uterus is indeed the source of the pain. For example, my friend with endo has pelvic pain but it's not in her uterus; a hysterectomy won't help her. With me, we're 99% sure it's the uterus. My doctor has had the experience of removing someone's uterus and the pain persisted anyway. So, I don't know if any of that helps. In my case, given my history, current symptoms, my refusal to take Lupron, the strong likelihood that it's indeed my uterus cramping, and the fact that I'm sure I won't have children, I'm going for the hysterectomy. I feel relieved to have finally made the decision. Now I'm just waiting for the surgeon to find a date. I hope something starts to shift for Penny soon!!! Best, Shayna Medical advice, information, opinions, data and statements contained herein are not necessarily those of the list moderators. The author of this e mail is entirely responsible for its content. List members are reminded of their responsibility to evaluate the content of the postings and consult with their physicians regarding changes in their own treatment. Personal attacks are not permitted on the list and anyone who sends one is automatically moderated or removed depending on the severity of the attack. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 13, 2006 Report Share Posted March 13, 2006 Thank you, Laurie. It is a big relief and I will keep you posted. We do get lots of surgeries in this group, don't we?! > > Hi Pamela, > > At the risk of offering unsolicited info or info you might already > > have, I wanted to share what I've learned recently about possible > > gynecological diagnoses in case any might apply to Penny. > > > > Two of the main diagnoses for which my gynecologist considers me a > > candidate are: > > > > 1) Adenomyosis: I think it's a form of endometriosis but it cannot be > > seen in a laparoscopy. With endo, the uterine lining migrates outside > > the uterus. With adenomyosis, however, the uterine lining actually > > goes into the uterine wall. That's why it can't be seen with a scope. > > It's possible to diagnose adeno by doing a biopsy of the uterine wall > > (while keeping the uterus otherwise intact). But this procedure is not > > 100% reliable; they sometimes miss it. It's also possible to try > > taking certain medications for diagnostic purposes(Lupron for sure and > > possibly Depo-Provera). I'm not sure if a pain relief from these meds > > means a woman definitely has adeno (or undetected endo) or if it just > > makes it highly likely. > > > > 2) Endometritis: Inflammation of the uterine lining. Can be diagnosed > > with a D & C. > > > > As I understand it, adeno is treated either by the same medications I > > already mentioned or by hysterectomy. Endometritis is treated by > > long-term antiobiotics. I didn't ask what she meant by " long-term. " > > > > I won't take Lupron or Depo under any circumstances because of how > > they would affect the health issues I already have. Also, I am sure > > that I don't want children so having a hysterectomy is not a big > > emotional loss for me. Penny, being younger, might feel differently. > > > > Of course, another possibility is that even after a D & C, a > > laparoscopic biopsy, medication trials, and ruling out bowel and > > bladder problems, a woman could still not get a diagnosis. In that > > case, my doctors told me that they sometimes treat the symptom by > > hysterectomy. The trick here is being reasonably certain that the > > uterus is indeed the source of the pain. For example, my friend with > > endo has pelvic pain but it's not in her uterus; a hysterectomy won't > > help her. With me, we're 99% sure it's the uterus. My doctor has had > > the experience of removing someone's uterus and the pain persisted anyway. > > > > So, I don't know if any of that helps. In my case, given my history, > > current symptoms, my refusal to take Lupron, the strong likelihood > > that it's indeed my uterus cramping, and the fact that I'm sure I > > won't have children, I'm going for the hysterectomy. I feel relieved > > to have finally made the decision. Now I'm just waiting for the > > surgeon to find a date. > > > > I hope something starts to shift for Penny soon!!! > > > > Best, > > Shayna > > > > > > > > > > > > > > Medical advice, information, opinions, data and statements contained herein > > are not necessarily those of the list moderators. The author of this e mail > > is entirely responsible for its content. List members are reminded of their > > responsibility to evaluate the content of the postings and consult with > > their physicians regarding changes in their own treatment. > > > > Personal attacks are not permitted on the list and anyone who sends one is > > automatically moderated or removed depending on the severity of the attack. > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 13, 2006 Report Share Posted March 13, 2006 Hi Pamela, I'm glad Penny's pain is not as bad at the moment--but her other problems sound very difficult. I will be interested to hear what the mito doc says. It does sound like it might not be gynecological after all. I just want to say, though, that after seeing many doctors, my understanding is that birth control pills do *not* help with all the gyno problems. They certainly don't help with adenomyosis. (Or endometritis.) Also, the laparoscopy she had would *not* have ruled out adenomyosis unless they simultaneously did a uterine biopsy. This would have involved something like a claw (ugh!) that removes a piece of the uterine wall itself--not the lining. I just wanted to clarify that, although her situation certainly sounds complicated and, as you said, might not be gynecological after all. Thanks for your support regarding my decision. I will certainly rest up after the surgery (though in Boston at this time of year you can't count on sun!). I might just catch up on videos. (Any recommendations?!) Best, Shayna > > Hi Shayna - you can solicit away all you like! Things with Penny seem to change every day. I have one more week till she sees the mito doc for assessment (and her brother who also has challenges). She was getting so much pain especially when in hospital being investigated for the blackouts as they couldnt get the heat packs to her quickly that last Sun decided she had to go off the bc pill. And then the pain stopped! We saw the gyno several days after and he was dumbfounded " this is not supposed to happen " .... he concluded that it may not be gynaecological after all! The reason she went on the pill in the beginning was the pain, but it made it much worse. (I will now look into why the bc pill is contraindicated in some cases of mito). I tried to quizz him again to evoke some thoughts of what it possibly could be, remembering some of the comments from the group which suggested that maybe the hormonal changes could trigger off something nearby, and he said something about excluding bladder and bowel then something else about spasm... (makes mito sense) I did ask him again whether he thought it was endo and he said well no cause the pathologist didn't (assume that included adenomyosis). He concluded that he would leave it to the mito doc to investigate and see what comes out in the wash. At least her heavy pain has stopped for now (she did have some normal period pain after she stopped the pill, but that was nothing like the other). So that nightmare has gone away for the moment (and I was indeed almost at the stage of thinking hysterectomy, as if she has mito it might not be a good idea to have children, and maybe we could get some of her eggs frozen first for future IVF just in case etc etc...) > > The new nightmare is total exhaustion and weakness, funny feelings in her legs and head, and a sudden severe depression so has just been started on an SNRI anti-depressant. She has attempted to go back to work today to hang onto her job but felt awful - and it's really hot here she is working in a childcare centre and didnt manage too well. I have loaded her up with sports drinks, eating and resting instructions but am worried. Will print this info out and hang onto it as who knows what is next- so nice of you to share what you are learning. p.s. I know you have made the right decision about hysterectomy, just allow lots of recovery time with nothing to do but sit in the sun. Thks again Shayna - Pamela (melas a3243g) > Pamela re: Penny > > > Hi Pamela, > At the risk of offering unsolicited info or info you might already > have, I wanted to share what I've learned recently about possible > gynecological diagnoses in case any might apply to Penny. > > Two of the main diagnoses for which my gynecologist considers me a > candidate are: > > 1) Adenomyosis: I think it's a form of endometriosis but it cannot be > seen in a laparoscopy. With endo, the uterine lining migrates outside > the uterus. With adenomyosis, however, the uterine lining actually > goes into the uterine wall. That's why it can't be seen with a scope. > It's possible to diagnose adeno by doing a biopsy of the uterine wall > (while keeping the uterus otherwise intact). But this procedure is not > 100% reliable; they sometimes miss it. It's also possible to try > taking certain medications for diagnostic purposes(Lupron for sure and > possibly Depo-Provera). I'm not sure if a pain relief from these meds > means a woman definitely has adeno (or undetected endo) or if it just > makes it highly likely. > > 2) Endometritis: Inflammation of the uterine lining. Can be diagnosed > with a D & C. > > As I understand it, adeno is treated either by the same medications I > already mentioned or by hysterectomy. Endometritis is treated by > long-term antiobiotics. I didn't ask what she meant by " long-term. " > > I won't take Lupron or Depo under any circumstances because of how > they would affect the health issues I already have. Also, I am sure > that I don't want children so having a hysterectomy is not a big > emotional loss for me. Penny, being younger, might feel differently. > > Of course, another possibility is that even after a D & C, a > laparoscopic biopsy, medication trials, and ruling out bowel and > bladder problems, a woman could still not get a diagnosis. In that > case, my doctors told me that they sometimes treat the symptom by > hysterectomy. The trick here is being reasonably certain that the > uterus is indeed the source of the pain. For example, my friend with > endo has pelvic pain but it's not in her uterus; a hysterectomy won't > help her. With me, we're 99% sure it's the uterus. My doctor has had > the experience of removing someone's uterus and the pain persisted anyway. > > So, I don't know if any of that helps. In my case, given my history, > current symptoms, my refusal to take Lupron, the strong likelihood > that it's indeed my uterus cramping, and the fact that I'm sure I > won't have children, I'm going for the hysterectomy. I feel relieved > to have finally made the decision. Now I'm just waiting for the > surgeon to find a date. > > I hope something starts to shift for Penny soon!!! > > Best, > Shayna > > > > > > > Medical advice, information, opinions, data and statements contained herein are not necessarily those of the list moderators. The author of this e mail is entirely responsible for its content. List members are reminded of their responsibility to evaluate the content of the postings and consult with their physicians regarding changes in their own treatment. > > Personal attacks are not permitted on the list and anyone who sends one is automatically moderated or removed depending on the severity of the attack. > > > > > Quote Link to comment Share on other sites More sharing options...
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