Guest guest Posted October 31, 2008 Report Share Posted October 31, 2008 I am a newbie in this group. Chelle I can feel your pain and understand where you are coming from. I had a hysterectomy but the ovaries were left back in 2004. I felt wonderful after that surgery. Through the years after that surgery though, I started having alot of pain with my ovaries. I was getting alot of cycsts and back pain. I had a female gyno but she started acting weird after she had done a biopsy because of all my pain down there. She finally referred me to a pelvic pain doctor and he was able to diagnose me with pelvic congestion syndrome, IC, and vulvodynia. After going back and forth doing trigger point injections which did help me and allow me to have almost pain free sex it did not solved all my problems so in August of this year I had my ovaries removed, my bladder looked at and a vestibulectomy. That surgery was a miracle for me I have total pain free sex now. I have a hard time sitting. Right now I am hurting. My peudendal nerve gets irritated. My point to all this is even though you are having doubts and upset maybe having the hysterectomy and getting rid of that " evil " uterus could possibly help you with your p/n.? Maybe it will not become entraped. My doctor thought mine was but since I have had the surgery the pain I was experiencing has decreased dramatically. I have not seen a physical therapist. I probably should but quite honestly I feel pretty good considering all I have been through and the years of pain. I hope you can find some degree of relief what ever decision you go with. From what I can tell from this board there is so much support here. I wish you pain free days ahead of you we have all been there. Blessings to you shellly. > > I have been fighting a hysterectomy for years...and now I may not have a choice anymore. I've cried off and on all day yesterday & today. went with me yesterday for an appt. to get an ultrasound and consult with the Nurse Practitioner at my new gyn's office. The U/S confirmed a big cyst on my left ovary and a MESS in my pelvis. My uterus is not only prolapsing more and more, but it's severely retroverted AGAIN and prolapsing to the left side. Essentially it's down in my butt and no wonder I've had so much trouble with my PN this past year. My uterus is big and engorged, fibroids, and > yada, > yada. Oh and my bladder is > coming down, > too. Did I mention I'm only > 36! > > I so > wish I had never done any internal PT. My organs began prolapsing when and I began internal work, but I do think the external and skin rolling have been helpful. The NP tried to fit me for a pessary...but neither of us think it's going to work. You're not supposed to feel it, but I felt it with every step...not to mention how it was aggravating my bladder - I made her take it out before I left. The NP told me that she really, really thinks I need to have a hysterectomy. She said, " is there anything you 'don't' have going on in there? " I'm am so scared that the surgery will entrap my PN. She said in 20 yrs. she's never witnessed one nerve entrapment from surgery. But how many patients have they seen like me with so much mess going on? > > I'm so angry. I don't want any more pelvic surgeries! The past surgeries haven't really helped me anyway. And yet, what do I > do? I can't allow > my uterus to come down until it's hanging out. Besides, with my uterus down in the left side, it's pulling on my right side and causing pain. Last night I had really bad rectal pain, like I used to before I had a uterine suspension 10 yrs. ago. --Then I think, what if? What if the surgery would help? I've had so much pain and so many symptoms related to my stupid uterus! It's large, it keeps retroverting...years of Endo...now fibroids and possible polyps in the endometrium. > > I told them if I do go through with it....to save my uterus, because I'm gonna stomp on it!!! Stupid uterus! Don't get me wrong, I'll always be grateful to the Lord for my two boys and getting to carry them....but they are the 'only' good things to come from my uterus. > > I broke down and started crying right there with the NP in the room. I felt so embarrassed, but she handed me a tissue > and showed some empathy -- that was a first. I don't want them to think I'm just an emotional wreck or that I'm weak. Ridiculous for me to even say that, I know...but that is how I feel. In my mind, it's like I've got to continue being strong and hold it all together! I just wish someone would tell me how to hold it all together. How do I fight these feelings? How do I make the right decision? I cannot reverse this surgery. > > Forgive me for sounding whiny! But I just do not get this...WHY? Why do I even have to go down this path? > > I'm so frustrated, I know crying is okay and even though I'm very sad right now...somehow this will work out...I have to believe that, but I am just so tired of > pelvic pain. > > Besides my husband, I just don't know who to talk to right now. Has anyone that has had a hysterectomy been through these emotions? I've spoken to women at my church that said the surgery was the best decision they ever made....but yet, none of them have had vulvar pain or IC, etc. > > I don't want to give the impression that I don't have hope...I will never stop hoping and believing to be beyond all this pelvic pain 'crap'...but I'm so sad. I can't figure up how to get up the energy to endure surgery. I go back on Nov. 10th for a pre-consult. > > rented some comedies tonight, because he knows I need a good laugh. I'm trying...but please, for those of you that pray, pray I'll make the right decision. > > Thanks for reading... > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 31, 2008 Report Share Posted October 31, 2008 > > I have been fighting a hysterectomy for years...and now I may not have a choice anymore. I've cried off and on all day yesterday & today. went with me yesterday for an appt. to get an ultrasound and consult with the Nurse Practitioner at my new gyn's office. The U/S confirmed a big cyst on my left ovary and a MESS in my pelvis. My uterus is not only prolapsing more and more, but it's severely retroverted AGAIN and prolapsing to the left side. Essentially it's down in my butt and no wonder I've had so much trouble with my PN this past year. My uterus is big and engorged, fibroids, and > yada, > yada. Oh and my bladder is > coming down, > too. Did I mention I'm only > 36! > > I so > wish I had never done any internal PT. My organs began prolapsing when and I began internal work, but I do think the external and skin rolling have been helpful. The NP tried to fit me for a pessary...but neither of us think it's going to work. You're not supposed to feel it, but I felt it with every step...not to mention how it was aggravating my bladder - I made her take it out before I left. The NP told me that she really, really thinks I need to have a hysterectomy. She said, " is there anything you 'don't' have going on in there? " I'm am so scared that the surgery will entrap my PN. She said in 20 yrs. she's never witnessed one nerve entrapment from surgery. But how many patients have they seen like me with so much mess going on? > > I'm so angry. I don't want any more pelvic surgeries! The past surgeries haven't really helped me anyway. And yet, what do I > do? I can't allow > my uterus to come down until it's hanging out. Besides, with my uterus down in the left side, it's pulling on my right side and causing pain. Last night I had really bad rectal pain, like I used to before I had a uterine suspension 10 yrs. ago. --Then I think, what if? What if the surgery would help? I've had so much pain and so many symptoms related to my stupid uterus! It's large, it keeps retroverting...years of Endo...now fibroids and possible polyps in the endometrium. > > I told them if I do go through with it....to save my uterus, because I'm gonna stomp on it!!! Stupid uterus! Don't get me wrong, I'll always be grateful to the Lord for my two boys and getting to carry them....but they are the 'only' good things to come from my uterus. > > I broke down and started crying right there with the NP in the room. I felt so embarrassed, but she handed me a tissue > and showed some empathy -- that was a first. I don't want them to think I'm just an emotional wreck or that I'm weak. Ridiculous for me to even say that, I know...but that is how I feel. In my mind, it's like I've got to continue being strong and hold it all together! I just wish someone would tell me how to hold it all together. How do I fight these feelings? How do I make the right decision? I cannot reverse this surgery. > > Forgive me for sounding whiny! But I just do not get this...WHY? Why do I even have to go down this path? > > I'm so frustrated, I know crying is okay and even though I'm very sad right now...somehow this will work out...I have to believe that, but I am just so tired of > pelvic pain. > > Besides my husband, I just don't know who to talk to right now. Has anyone that has had a hysterectomy been through these emotions? I've spoken to women at my church that said the surgery was the best decision they ever made....but yet, none of them have had vulvar pain or IC, etc. > > I don't want to give the impression that I don't have hope...I will never stop hoping and believing to be beyond all this pelvic pain 'crap'...but I'm so sad. I can't figure up how to get up the energy to endure surgery. I go back on Nov. 10th for a pre-consult. > > rented some comedies tonight, because he knows I need a good laugh. I'm trying...but please, for those of you that pray, pray I'll make the right decision. > > Thanks for reading... > > Hi : I'm so sorry for what you've been going through. I had an emergency hysterectomy when I was 40 due to bad pain from a large fibroid. I also had a different kind of horriffic pain from kidney stones and had to have a Lithotripy 3 weeks after my hysterectomy. A Urologist had to insert a stent into my kidney to keep the stones where they were. I was happy to have the hysterectomy b/c I had such terribly painful and heavy periods for many years. My Vulvodynia started years after my hysterectomy and hasn't been any worse since then. I hope everything works out well for you. Please feel free to email me offlist if you want to talk. Hugs, Sue > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 31, 2008 Report Share Posted October 31, 2008 I am so sorry about your predicament. If you opt for hysterectomy be sure you keep your ovaries because you can get along just fine without your uterus but women generally keep the ovaries unless they are diseased. I had vaginal surgery (cystocele, rectocele and androcele repair) and it is surely no picnic. I hope I never need any more surgeries down there. My sister-in-law had endometriosis and finally a hysterectomy and she is doing very well for the past 12 years. She was having all sorts of problems and now she is doing just fine. Love and Hugs, Ora On Fri, 31 Oct 2008 19:14:00 -0700 (PDT), Chelle elliottmag@...> wrote: >I have been fighting a hysterectomy for years...and now I may not have a choice anymore. I've cried off and on all day yesterday & today. went with me yesterday for an appt. to get an ultrasound and consult with the Nurse Practitioner at my new gyn's office. The U/S confirmed a big cyst on my left ovary and a MESS in my pelvis. My uterus is not only prolapsing more and more, but it's severely retroverted AGAIN and prolapsing to the left side. Essentially it's down in my butt and no wonder I've had so much trouble with my PN this past year. My uterus is big and engorged, fibroids, and > yada, > yada. Oh and my bladder is > coming down, > too. Did I mention I'm only > 36! > >I so > wish I had never done any internal PT. My organs began prolapsing when and I began internal work, but I do think the external and skin rolling have been helpful. The NP tried to fit me for a pessary...but neither of us think it's going to work. You're not supposed to feel it, but I felt it with every step...not to mention how it was aggravating my bladder - I made her take it out before I left. The NP told me that she really, really thinks I need to have a hysterectomy. She said, " is there anything you 'don't' have going on in there? " I'm am so scared that the surgery will entrap my PN. She said in 20 yrs. she's never witnessed one nerve entrapment from surgery. But how many patients have they seen like me with so much mess going on? > >I'm so angry. I don't want any more pelvic surgeries! The past surgeries haven't really helped me anyway. And yet, what do I > do? I can't allow > my uterus to come down until it's hanging out. Besides, with my uterus down in the left side, it's pulling on my right side and causing pain. Last night I had really bad rectal pain, like I used to before I had a uterine suspension 10 yrs. ago. --Then I think, what if? What if the surgery would help? I've had so much pain and so many symptoms related to my stupid uterus! It's large, it keeps retroverting...years of Endo...now fibroids and possible polyps in the endometrium. > >I told them if I do go through with it....to save my uterus, because I'm gonna stomp on it!!! Stupid uterus! Don't get me wrong, I'll always be grateful to the Lord for my two boys and getting to carry them....but they are the 'only' good things to come from my uterus. > >I broke down and started crying right there with the NP in the room. I felt so embarrassed, but she handed me a tissue > and showed some empathy -- that was a first. I don't want them to think I'm just an emotional wreck or that I'm weak. Ridiculous for me to even say that, I know...but that is how I feel. In my mind, it's like I've got to continue being strong and hold it all together! I just wish someone would tell me how to hold it all together. How do I fight these feelings? How do I make the right decision? I cannot reverse this surgery. > >Forgive me for sounding whiny! But I just do not get this...WHY? Why do I even have to go down this path? > >I'm so frustrated, I know crying is okay and even though I'm very sad right now...somehow this will work out...I have to believe that, but I am just so tired of > pelvic pain. > >Besides my husband, I just don't know who to talk to right now. Has anyone that has had a hysterectomy been through these emotions? I've spoken to women at my church that said the surgery was the best decision they ever made....but yet, none of them have had vulvar pain or IC, etc. > >I don't want to give the impression that I don't have hope...I will never stop hoping and believing to be beyond all this pelvic pain 'crap'...but I'm so sad. I can't figure up how to get up the energy to endure surgery. I go back on Nov. 10th for a pre-consult. > > rented some comedies tonight, because he knows I need a good laugh. I'm trying...but please, for those of you that pray, pray I'll make the right decision. > >Thanks for reading... > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 31, 2008 Report Share Posted October 31, 2008 I wish you luck I've not been threw it but I no people that have and they seem fine. Whatever you decide we're here to listen provide help if we can and be your firends. kyle I'm so upset... I have been fighting a hysterectomy for years...and now I may not have a choice anymore. I've cried off and on all day yesterday & today. went with me yesterday for an appt. to get an ultrasound and consult with the Nurse Practitioner at my new gyn's office. The U/S confirmed a big cyst on my left ovary and a MESS in my pelvis. My uterus is not only prolapsing more and more, but it's severely retroverted AGAIN and prolapsing to the left side. Essentially it's down in my butt and no wonder I've had so much trouble with my PN this past year. My uterus is big and engorged, fibroids, and yada, yada. Oh and my bladder is coming down, too. Did I mention I'm only 36! I so wish I had never done any internal PT. My organs began prolapsing when and I began internal work, but I do think the external and skin rolling have been helpful. The NP tried to fit me for a pessary...but neither of us think it's going to work. You're not supposed to feel it, but I felt it with every step...not to mention how it was aggravating my bladder - I made her take it out before I left. The NP told me that she really, really thinks I need to have a hysterectomy. She said, "is there anything you 'don't' have going on in there?" I'm am so scared that the surgery will entrap my PN. She said in 20 yrs. she's never witnessed one nerve entrapment from surgery. But how many patients have they seen like me with so much mess going on? I'm so angry. I don't want any more pelvic surgeries! The past surgeries haven't really helped me anyway. And yet, what do I do? I can't allow my uterus to come down until it's hanging out. Besides, with my uterus down in the left side, it's pulling on my right side and causing pain. Last night I had really bad rectal pain, like I used to before I had a uterine suspension 10 yrs. ago. --Then I think, what if? What if the surgery would help? I've had so much pain and so many symptoms related to my stupid uterus! It's large, it keeps retroverting...years of Endo...now fibroids and possible polyps in the endometrium. I told them if I do go through with it....to save my uterus, because I'm gonna stomp on it!!! Stupid uterus! Don't get me wrong, I'll always be grateful to the Lord for my two boys and getting to carry them....but they are the 'only' good things to come from my uterus. I broke down and started crying right there with the NP in the room. I felt so embarrassed, but she handed me a tissue and showed some empathy -- that was a first. I don't want them to think I'm just an emotional wreck or that I'm weak. Ridiculous for me to even say that, I know...but that is how I feel. In my mind, it's like I've got to continue being strong and hold it all together! I just wish someone would tell me how to hold it all together. How do I fight these feelings? How do I make the right decision? I cannot reverse this surgery. Forgive me for sounding whiny! But I just do not get this...WHY? Why do I even have to go down this path? I'm so frustrated, I know crying is okay and even though I'm very sad right now...somehow this will work out...I have to believe that, but I am just so tired of pelvic pain. Besides my husband, I just don't know who to talk to right now. Has anyone that has had a hysterectomy been through these emotions? I've spoken to women at my church that said the surgery was the best decision they ever made....but yet, none of them have had vulvar pain or IC, etc. I don't want to give the impression that I don't have hope...I will never stop hoping and believing to be beyond all this pelvic pain 'crap'...but I'm so sad. I can't figure up how to get up the energy to endure surgery. I go back on Nov. 10th for a pre-consult. rented some comedies tonight, because he knows I need a good laugh. I'm trying...but please, for those of you that pray, pray I'll make the right decision. Thanks for reading... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 1, 2008 Report Share Posted November 1, 2008 Chelle, I've been tossing and turning thinking of you. My opinion is The internal PT probably relaxed the very muscles that were short and tight and therefore holding you together, the very reason that you have pelvic pain. It sounds to me like you don't have a choice about the surgery. I would do some research about which method is the least disruptive and invasive surgery. I know that some of the supposedly less invasive routes are actually much more traumatic. They need to manipulate your muscles and nerves as little as possible. I think that it's possible that through the abdomen rather than through the vagina might be worth looking into, although I don't know. I would find out if you should start internal PT again before surgery and maybe take some muscle relaxants for a few days before. I think that the reason that surgery makes so many people worse is because the short tight muscles are moved around agressively and the pudendal nerve and or it's branches are stuck in the middle of these muscles. I think if you go about it carefully, this could be a good thing. I wonder if the girls at pelvic pain rehab might be willing to give you some advice. I wonder if they've done much pre and post hysterectomy PT or if they know someone who specializes in it. I know they give fifteen minute consults - for a price, I'm sure, but that's OK. I know that the doctors who were so inexcusably horrible to me after they made me so much worse with their "successful" surgery now send patients to PT before surgery to be sure that their muscles are a proper resting tone. please repost this to happypelvis, it didn't work love, Molly To: vulvardisorders ; happy pelvis Sent: Friday, October 31, 2008 8:14:00 PMSubject: I'm so upset... I have been fighting a hysterectomy for years...and now I may not have a choice anymore. I've cried off and on all day yesterday & today. went with me yesterday for an appt. to get an ultrasound and consult with the Nurse Practitioner at my new gyn's office. The U/S confirmed a big cyst on my left ovary and a MESS in my pelvis. My uterus is not only prolapsing more and more, but it's severely retroverted AGAIN and prolapsing to the left side. Essentially it's down in my butt and no wonder I've had so much trouble with my PN this past year. My uterus is big and engorged, fibroids, and yada, yada. Oh and my bladder is coming down, too. Did I mention I'm only 36! I so wish I had never done any internal PT. My organs began prolapsing when and I began internal work, but I do think the external and skin rolling have been helpful. The NP tried to fit me for a pessary...but neither of us think it's going to work. You're not supposed to feel it, but I felt it with every step...not to mention how it was aggravating my bladder - I made her take it out before I left. The NP told me that she really, really thinks I need to have a hysterectomy. She said, "is there anything you 'don't' have going on in there?" I'm am so scared that the surgery will entrap my PN. She said in 20 yrs. she's never witnessed one nerve entrapment from surgery. But how many patients have they seen like me with so much mess going on? I'm so angry. I don't want any more pelvic surgeries! The past surgeries haven't really helped me anyway. And yet, what do I do? I can't allow my uterus to come down until it's hanging out. Besides, with my uterus down in the left side, it's pulling on my right side and causing pain. Last night I had really bad rectal pain, like I used to before I had a uterine suspension 10 yrs. ago. --Then I think, what if? What if the surgery would help? I've had so much pain and so many symptoms related to my stupid uterus! It's large, it keeps retroverting. ..years of Endo...now fibroids and possible polyps in the endometrium. I told them if I do go through with it....to save my uterus, because I'm gonna stomp on it!!! Stupid uterus! Don't get me wrong, I'll always be grateful to the Lord for my two boys and getting to carry them....but they are the 'only' good things to come from my uterus. I broke down and started crying right there with the NP in the room. I felt so embarrassed, but she handed me a tissue and showed some empathy -- that was a first. I don't want them to think I'm just an emotional wreck or that I'm weak. Ridiculous for me to even say that, I know...but that is how I feel. In my mind, it's like I've got to continue being strong and hold it all together! I just wish someone would tell me how to hold it all together. How do I fight these feelings? How do I make the right decision? I cannot reverse this surgery. Forgive me for sounding whiny! But I just do not get this...WHY? Why do I even have to go down this path? I'm so frustrated, I know crying is okay and even though I'm very sad right now...somehow this will work out...I have to believe that, but I am just so tired of pelvic pain. Besides my husband, I just don't know who to talk to right now. Has anyone that has had a hysterectomy been through these emotions? I've spoken to women at my church that said the surgery was the best decision they ever made....but yet, none of them have had vulvar pain or IC, etc. I don't want to give the impression that I don't have hope...I will never stop hoping and believing to be beyond all this pelvic pain 'crap'...but I'm so sad. I can't figure up how to get up the energy to endure surgery. I go back on Nov. 10th for a pre-consult. rented some comedies tonight, because he knows I need a good laugh. I'm trying...but please, for those of you that pray, pray I'll make the right decision. Thanks for reading... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 1, 2008 Report Share Posted November 1, 2008 Oh Chelle, My heart breaks for you. I know your frustration - not the exact same physical frustration as you, but the wondering why it has to be so hard and why we aren't healed right this minute. I pray that you have wisdom and discernment. I think this surgery may be a great thing for you, but only if you have confidence and peace in it. Have you read " The Shack " ? It gave me a whole new way of relating to God in the midst of this crumminess we are experiencing. It's an amazing book. Just a thought. We all love you! Melinda Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 3, 2008 Report Share Posted November 3, 2008 Hi Chelle, Just a note to let you know I have been praying for you and your decision regarding surgery as I am facing a similar decision myself. Not an easy choice to be sure, and I, like you, am thankful for a supportive husband and an Almighty Creator. Sincerely, Quote Link to comment Share on other sites More sharing options...
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