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
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.
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
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?
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 do this anymore! 
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