Pippin31
07-10-2003, 10:40 AM
Oh God, it’s back!!! This horrible twisting, crushing, pulling, sick pain in my pelvis is back!! It went away while I was on Lupron. Now, it is back with a vengeance now that I stopped Lupron. I am sitting here literally trembling in pain! It woke me up out of a dead sleep at 5 am this morning! I forgot just how bad this gets. All along, I was complaining about my back and leg pain (while on Lupron). What I would give to have just my back and leg pain!! I don’t think I can go through this again! I dealt with it consistently for almost 9 months before starting Lupron and almost lost my mind then. Now, I don’t have Lupron to fall back on anymore (I “over used” it..it’s meant for 6 months and I was given 1 ½ injections per month for 2 ½ straight years) I was told I could never go back on it. And the worst part is, even though Lupron made the pain go away by putting me into menopause, the doctors can’t seem to find the cause of the pain in the first place. Therefore, unable to fix anything! They said my reproductive organs looked fine, yet for the first time in almost 3 years, I got my period and the pain is so sever, I can’t stand up. How is this not reproductively related?
I don’t know how I can go on like this, I don’t think I can do this again :(
I don’t know how I can go on like this, I don’t think I can do this again :(
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mokita
07-10-2003, 10:56 AM
Pippin.... I am so sorry for you... my God, isn't there someone that can help you? What about your PM Doc? Have they tried to figure out what is causing this particular pain? Or have they concentrated on your back/leg? You need to get into see them ASAP! Please, don't wait, OK?
Call them TODAY! Let me know how you're doing. My thoughts and prayers are with you. I understand a little of what you're experiencing. I had endometriosis and it was Unbelievable what kind of pain that can cause. Luckily, 8 months of hormone therapy (I took the pills, can't remember what they were called, but they put me into pseudo-menopause) took care of it. God, I wouldn't wish that pain on anyone. Please, please call your doc.
Karen
Call them TODAY! Let me know how you're doing. My thoughts and prayers are with you. I understand a little of what you're experiencing. I had endometriosis and it was Unbelievable what kind of pain that can cause. Luckily, 8 months of hormone therapy (I took the pills, can't remember what they were called, but they put me into pseudo-menopause) took care of it. God, I wouldn't wish that pain on anyone. Please, please call your doc.
Karen
Kierra
07-10-2003, 02:13 PM
oh Pippin31
Im so sorry that you are in so much pain....I had simialr problems like that but mine were ovarian cysts that exploded in my abdomine(sp) I know how the pain feels and thank god I only had to put up with it for a few hours. I hope that they find out the cause soon....Why can't you go back on lupron?(sp) what does it do to the body?
I hope that you get some reliefe soon
Take care
Kierra
Im so sorry that you are in so much pain....I had simialr problems like that but mine were ovarian cysts that exploded in my abdomine(sp) I know how the pain feels and thank god I only had to put up with it for a few hours. I hope that they find out the cause soon....Why can't you go back on lupron?(sp) what does it do to the body?
I hope that you get some reliefe soon
Take care
Kierra
pixiepoodle
07-10-2003, 02:36 PM
Sorry to hear about your horrible pain. When you say you got your period back and the pain is worse, it makes me think it could be female (even though the doc says it isn't). For over 7 yrs I suffered with horrible menstrual cramps about 21 days out of the month and my periods were like going thru labor. Every time I ovulated, it felt like someone was sticking me with a sharp knife.
My gyno checked me for endometriosis, but said I didn't have it. Meanwhile I moved away for 3 yrs and had a few other drs. who couldn't find anything wrong with me. When I moved back to the Houston area again, I went back to the same gyno because I really liked him and he didn't give me a hard time about giving me 10 Tylenol #3 to get thru my period every mo. Anyway, the pain kept getting worse and he finally asked me to start keeping a pain journal. Finally, he agreed "something" was wrong because I also could no longer go to the bathroom without living on laxatives and instead of having a normal monthly flow, I was passing big blood clots, so he sent me for a vaginal ultrasound which showed I had numerous fibroids on my ovaries. He agreed to do exploratory surgery and he told me he would try to clean my ovaries off and save them, would definitely do a hysterecomy so I wouldn't have to suffer with the pain anymore and he also said there was a possibility I might have cancer in my colon (so he would check it out) while he was in there.
When I woke up from the surgery, he told me he could not believe how corroded my one ovary was with fibroids so it had to be removed, but the other one was fine. He also told me I had mylenomiosis (sp?) (which is kinda like endrometriosis, only it caused the walls of my uterus to swell up and therefore shut the exit off for the flow to pass thru).
After recouping for a few weeks, it was like I had a new lease on life and I have NEVER regretted having the hysterectomy - I only wish I could have had it years earlier.
So I've said all this to say that maybe you should try another dr. and ask him/her if you can keep a pain journal (or if you already have) to see what they think?
My gyno checked me for endometriosis, but said I didn't have it. Meanwhile I moved away for 3 yrs and had a few other drs. who couldn't find anything wrong with me. When I moved back to the Houston area again, I went back to the same gyno because I really liked him and he didn't give me a hard time about giving me 10 Tylenol #3 to get thru my period every mo. Anyway, the pain kept getting worse and he finally asked me to start keeping a pain journal. Finally, he agreed "something" was wrong because I also could no longer go to the bathroom without living on laxatives and instead of having a normal monthly flow, I was passing big blood clots, so he sent me for a vaginal ultrasound which showed I had numerous fibroids on my ovaries. He agreed to do exploratory surgery and he told me he would try to clean my ovaries off and save them, would definitely do a hysterecomy so I wouldn't have to suffer with the pain anymore and he also said there was a possibility I might have cancer in my colon (so he would check it out) while he was in there.
When I woke up from the surgery, he told me he could not believe how corroded my one ovary was with fibroids so it had to be removed, but the other one was fine. He also told me I had mylenomiosis (sp?) (which is kinda like endrometriosis, only it caused the walls of my uterus to swell up and therefore shut the exit off for the flow to pass thru).
After recouping for a few weeks, it was like I had a new lease on life and I have NEVER regretted having the hysterectomy - I only wish I could have had it years earlier.
So I've said all this to say that maybe you should try another dr. and ask him/her if you can keep a pain journal (or if you already have) to see what they think?
Pippin31
07-10-2003, 08:11 PM
Hi Kierra,
I can’t start Lupron again because it’s a drug meant to be used for 6 months. It was original used for men with testicular cancer, it’s a form of chemotherapy. Hence, all the lovely side effects from it. It was also used for male castration. I was on it for 2 ½ years at twice the dose, I don’t even know how he got away with giving it to me that long. It made the pain go away with in 3 weeks of my first shot! I felt like I hit the lottery. There were times where I would struggle with the twisting, but that would only last a day or two. Before Lupron, It was constant..day in and day out. Although I hate Lupron due to it’s side effects (and am now discovering side effects could be permanent i.e.: memory loss, thinning hair, etc..) I sure do appreciate the fact it made the pain disappear.
Pixxipoodle,
Your story sounds a lot like mine. I have been through 40 some doctors in the past 3 years. My story is on the board here somewhere....”Here’s my long story...you asked, sorry” Anyway, it explains everything. I even went all the way cross country to the Mayo Clinic and the first doctor told me it was all in my head (this...after telling her I have 72 day periods !!) Then the next doctor was very upset at the fact I was on Lupron so long...said the medical community is not yet aware of all the side effects, especially being on it for so long. Then she proceeds to tell me...you might as well stay on it if it is handling the pain. In other words...It’s a really bad drug, but if it ain’t broke, don’t fix it!!
I have gone to the far ends of the earth to find out what this is. Every CT scan and MRI I had before I started LUpron showed a mass on the right ovary (where the pain always is). I had a lapro done then (however, I was on continuous birth control at that point) and nothing was found on the right. Then a couple of months later, another scan showed the mass. I started Lupron and for the first time in 8 months, the mass was gone along with the pain. I had a 2nd lapro in April, nothing found on the right...However, after being on Lupron for so long, doc isn’t sure if he would have seen anything anyway...Lovely..I tried to talk him into waiting until I was off so there was no question, but he knew what was best...yeah right!!
Anyway, thanks all for letting me vent. Time to go lay down with the heating pad.
I can’t start Lupron again because it’s a drug meant to be used for 6 months. It was original used for men with testicular cancer, it’s a form of chemotherapy. Hence, all the lovely side effects from it. It was also used for male castration. I was on it for 2 ½ years at twice the dose, I don’t even know how he got away with giving it to me that long. It made the pain go away with in 3 weeks of my first shot! I felt like I hit the lottery. There were times where I would struggle with the twisting, but that would only last a day or two. Before Lupron, It was constant..day in and day out. Although I hate Lupron due to it’s side effects (and am now discovering side effects could be permanent i.e.: memory loss, thinning hair, etc..) I sure do appreciate the fact it made the pain disappear.
Pixxipoodle,
Your story sounds a lot like mine. I have been through 40 some doctors in the past 3 years. My story is on the board here somewhere....”Here’s my long story...you asked, sorry” Anyway, it explains everything. I even went all the way cross country to the Mayo Clinic and the first doctor told me it was all in my head (this...after telling her I have 72 day periods !!) Then the next doctor was very upset at the fact I was on Lupron so long...said the medical community is not yet aware of all the side effects, especially being on it for so long. Then she proceeds to tell me...you might as well stay on it if it is handling the pain. In other words...It’s a really bad drug, but if it ain’t broke, don’t fix it!!
I have gone to the far ends of the earth to find out what this is. Every CT scan and MRI I had before I started LUpron showed a mass on the right ovary (where the pain always is). I had a lapro done then (however, I was on continuous birth control at that point) and nothing was found on the right. Then a couple of months later, another scan showed the mass. I started Lupron and for the first time in 8 months, the mass was gone along with the pain. I had a 2nd lapro in April, nothing found on the right...However, after being on Lupron for so long, doc isn’t sure if he would have seen anything anyway...Lovely..I tried to talk him into waiting until I was off so there was no question, but he knew what was best...yeah right!!
Anyway, thanks all for letting me vent. Time to go lay down with the heating pad.
Wes1212
07-10-2003, 09:00 PM
I hope it gets better for you!
Kierra
07-10-2003, 09:22 PM
Hi Pippin31
I wish there was somthing that I could say that would make the pain a little bit more bearable for you...Im soo sorry that your in soo much pain....what else can they give you...is there anything like Lupron but with not as bad side affects???. does the heating pad help??? my doc told me and a few others...that you should have a hot water bottle wraped in a moist heat towel and that help more than the heating pad or the ice packs that you can put in the microwave cause with the towel way it actuall gets inside of you instead of just heating the surface skin...you probably know that already so sorry, just trying to help
I hope that you you get some relief soon and I will talk to you later
Your friend
Kierra :wave:
I wish there was somthing that I could say that would make the pain a little bit more bearable for you...Im soo sorry that your in soo much pain....what else can they give you...is there anything like Lupron but with not as bad side affects???. does the heating pad help??? my doc told me and a few others...that you should have a hot water bottle wraped in a moist heat towel and that help more than the heating pad or the ice packs that you can put in the microwave cause with the towel way it actuall gets inside of you instead of just heating the surface skin...you probably know that already so sorry, just trying to help
I hope that you you get some relief soon and I will talk to you later
Your friend
Kierra :wave:
chrpps99
07-10-2003, 11:32 PM
Hey There Pippin
I truly am sorry to hear that the twisting pain has returned. I know what you are going thru.. It is such a shame that the Dr kept you on Lupron for so long. That is not praticing good medicine. But you know that, and now you are in a situation that something that worked for you can't be used. I don't know much about the Injections and so forth because my Gyn would not even consider them because I was a Smoker..It could be so many things. Ruptured Cyst, Cyst, Endometriosis, Adhesions, and more.. I know you don't want to hear this but if it continues, you better get to the Dr. I know you have had all those tests before and nothing showed up.. But the Lupron may have shrunk the mass that they seen before you started Lupron and now after being off of it.. The cyst, mass or whatever may be present now, and they could go in a remove the culprit of this vicious pain.I have been thru the same things test after test with no dx. so I know how you feel about that, Throwing money in the wind, and making the car payment on that Jag or BMW.. But you need some answers dear.. I wish I could do more to make the pain go away. But about all I can do is sympathize with you darlin'. If you need to talk just post on the boards, I'll try to respond. It seems like you have many supportive friends on the boards, and we are all here for ya. Keep me posted...
Take Care
Sonya
I truly am sorry to hear that the twisting pain has returned. I know what you are going thru.. It is such a shame that the Dr kept you on Lupron for so long. That is not praticing good medicine. But you know that, and now you are in a situation that something that worked for you can't be used. I don't know much about the Injections and so forth because my Gyn would not even consider them because I was a Smoker..It could be so many things. Ruptured Cyst, Cyst, Endometriosis, Adhesions, and more.. I know you don't want to hear this but if it continues, you better get to the Dr. I know you have had all those tests before and nothing showed up.. But the Lupron may have shrunk the mass that they seen before you started Lupron and now after being off of it.. The cyst, mass or whatever may be present now, and they could go in a remove the culprit of this vicious pain.I have been thru the same things test after test with no dx. so I know how you feel about that, Throwing money in the wind, and making the car payment on that Jag or BMW.. But you need some answers dear.. I wish I could do more to make the pain go away. But about all I can do is sympathize with you darlin'. If you need to talk just post on the boards, I'll try to respond. It seems like you have many supportive friends on the boards, and we are all here for ya. Keep me posted...
Take Care
Sonya
Pippin31
07-11-2003, 12:53 AM
Hi all,
Thanks for your support. I called my PM doctor and told his nurse the situation. He gave me 28 percocets...10mg. It has helped quite a bit, I am still in pain but at least it is tolerable at the moment. The problem is, I don’t know how temporary this medication is and how permanent this pelvic pain is. All I know is this lasted every day for almost 9 months before Lupron. It sounds like the doctor is only putting me on this new medication temporarily, at least it seems, only giving me 28. But I sure am grateful for these 28 pills at the moment.
Kierra, I have found 8 hour heat packs that are wonderful. This way, there isn’t any risk of burn like the heating pad when you fall asleep with it.
I intend to call my Reproductive Endro. Who had me on Lupron and see what he has to say about this situation. I don’t know what his next move will be. He did discuss keeping me in “menopause” (and yet he says he didn’t see anything wrong with my reproductive organs, just my bowel). He wanted me back on Provera and I said no. That stuff made me crazy. There is no denying something is wrong in the reproductive area. A person doesn’t wake out of a sound sleep in sever pain because they get their period and a person doesn’t uncontrollably tremble due to pain because they get their period!! This has been such a battle.
I finally fell back to sleep this afternoon for a couple of hours and when I woke, the pain was really bad again. I wonder why laying down makes cramps and the twisting so much worse? Any ideas http://www.healthboards.com/ubb/idea.gif
Again, thanks for letting me cry on your shoulders.
Thanks for your support. I called my PM doctor and told his nurse the situation. He gave me 28 percocets...10mg. It has helped quite a bit, I am still in pain but at least it is tolerable at the moment. The problem is, I don’t know how temporary this medication is and how permanent this pelvic pain is. All I know is this lasted every day for almost 9 months before Lupron. It sounds like the doctor is only putting me on this new medication temporarily, at least it seems, only giving me 28. But I sure am grateful for these 28 pills at the moment.
Kierra, I have found 8 hour heat packs that are wonderful. This way, there isn’t any risk of burn like the heating pad when you fall asleep with it.
I intend to call my Reproductive Endro. Who had me on Lupron and see what he has to say about this situation. I don’t know what his next move will be. He did discuss keeping me in “menopause” (and yet he says he didn’t see anything wrong with my reproductive organs, just my bowel). He wanted me back on Provera and I said no. That stuff made me crazy. There is no denying something is wrong in the reproductive area. A person doesn’t wake out of a sound sleep in sever pain because they get their period and a person doesn’t uncontrollably tremble due to pain because they get their period!! This has been such a battle.
I finally fell back to sleep this afternoon for a couple of hours and when I woke, the pain was really bad again. I wonder why laying down makes cramps and the twisting so much worse? Any ideas http://www.healthboards.com/ubb/idea.gif
Again, thanks for letting me cry on your shoulders.