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I could just SCREAM I could just SCREAM

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  #1  
Unread 03-13-2003, 09:20 PM
I could just SCREAM

Okay ladies, I need a minute to vent...... the more I think about it the more frustrated I become.

I went to GYN yesterday for post op visit from adhesion removal. I have been doing rather well but mentioned to DR that the right side pain is still somewhat evident and that I was concerned about it returning.

Here goes..... He said that there was so much stuff going on in there that he had hoped he found everything but that maybe..... now listen to this-- it could be endo(never been diagnosed in the many laps I have had) in a deep tissue area on the right side-- Problem I see here is in his attempt to keep me from surgical menopause and removing a perfectly normal ovary he could have aided in my pain staying around As some of you know he elected to try and save the left ovary that was bound up in adhesions because it looked perfectly normal with no evidence of being remotely menopausal. Do I understand properly that the ovary feeds endo??

Next comment... I only have one option left if it continues or gets worse-- ovary removal----- HELLO?? just in the nick of time he saves me from totally falling off the table with the suggestion of Lupron. Since I have never been diagnosed with endo no GYN has ever tried it for my pains in the past. He said this way it would rule out or in ENDO. I haven't done any research yet on that but know I have seen some post on it. Any thoughts on Lupron would be greatly appreciated- don't know if I even want to think about it?

Ya know what I ain't going to think about it any more, pain or not, I am crossing my fingers it is still post op pain and if not I am just taking this one day/step at a time, what else is a lady to do?
Ibuprofen has been sufficient so far but I haven't taken on my full schedule yet and how long is it safe to stay on a NSAID?

I felt so great week 1 with very little twinges I guess the drugs were still in my system. Felt like the old me, high energy, no pain and ready to take on the world. I am determined to find that lady one day soon.

I am going to do some more research on natural remedies too, if anyone has any suggestions anything is worth a try in my book right now.

Thanks for listening,
DLK

I will be dancing again soon maybe just not the TWIST yet
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  #2  
Unread 03-13-2003, 09:45 PM
DLK

I am soooo sorry to hear what your ignorant Gyn had to say to you!!!! I have heard it all now. I can only thank god I found the one I have.

You know, my Gyn hated the thought of taking both of my ovaries at the age of 31 and I told him they did not work anyway and were full of cysts so I made him take them both. Come to find out I am glad I did because they were BOTH pre-cancerous..

As for the Endo, I would NOT take Lupron.... It would have to be a LAST resort for me!! Personal opinion though. I have just read and heard too many negative things about it. Hopefully someone here has some remedies for you other than that..

As for your remaining ovary, YES your ovary produces estrogen which feeds endo. My HRT has been doing that for almost 2 years, no wonder it may have come back!!!
That is the only complaint I have is that he did not remove the endo at the time of my hyst. I had alot of clear endo though.

Do not worry too much about taking NSAID, unless it is bothering your stomach. I dont think you have been on them long at all to warrant being worried. I should be the one worried being on narcotics for prolonged periods of time. I guess I will deal with it though because it is the only thing that works..

I will keep you in my prayers that you start to feel better soon.

By the way*punch* your Gyn for me.

Hang in there, and vent away!!!


Pam
  #3  
Unread 03-13-2003, 10:59 PM
I could just SCREAM

Hi DLK,

I didn't have endo, but I was on Lupron for 2 months. In my case it was that or a blood transfusion because my levels were so low. I wasn't crazy about the idea, but I trust my doc.

I've seen many negative posts on Lupron both here and on other sites, although I must say that I trust what I've seen here more than anywhere else because this site doesn't have the hidden agendas so many others do.

That said, Lupron was great for me. It (finally!) stopped my bleeding and while I did have hot flashes, I didn't have mood swings (according to DH) or any of the other side affects others have posted on. Unfortunately, though, there appears to be no way of knowing you YOU will respond.

Why don't you see about getting a second opinion? I know you've been going round and round on this, but a second opinion might ease your mind one way or the other.

I hope this helps!

z
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  #4  
Unread 03-14-2003, 06:10 AM
I could just SCREAM

As much as I am disturbed about the thoughts of a possible surgery down the road yet again, I don't think I am mad at the DR. I truly believe he was trying to put my best interest at heart here.

OTOH: I am going to go back to my GP and get his opinion on the Lupron and see if he thinks I should get yet another GYN/Specialist opinion before trying it.

I am hoping this is all premature anxiety and that this pain is still connected to post op, it is a little familiar though and I think that is what prompted me to ask him about at the post op visit

I am much better pain wise than prior to surgery so we will see how that goes once I am back into the full swing of things. I am still early in recovery probably for the inside stuff so who knows I guess only will tell.

Thanks for the replies, s
DLK
  #5  
Unread 03-14-2003, 08:44 AM
I could just SCREAM

(((DLK)))

I can understand your frustration. My gyn left my right ovary during the hyst even though I did have endo (even a small spot on that ovary.) She wanted me to do the Lupron post-op and I had read so many negative things about it that I just couldn't take that chance. 9 weeks post I was put on the bc pill because the ovary was cystic. She said that should also help to keep the endo from returning (although not as well as the Lupron). I have continued to have pain to some degree the entire time. Last week I accidentally missed a pill and have been feeling EXTREMELY pre-menstrual and menstrual since then. I hate to think one missed pill could screw my systom up so severely...but seems it has.

I don't have an answer for you but do have plenty of s to send your way. It is a difficult decision. Good luck.
  #6  
Unread 03-14-2003, 09:22 AM
I could just SCREAM

((vbj))) I think this whole episode has made me second guess keeping the left ovary to begin with??? I don't know??

My gyn was very adamant about the youthfulness of the ovary from both surgeries so you do take out a perfectly good organ to alleviate all the possibilities down the road- I still don't have an answer to that question. I don't have the confidence in either case to make a suggestion to others either. I do know that I do NOT regret taking the right ovary- it has been cystic since day one and I wonder if it is not back to haunt me- (yeah you thought you got rid of me but I am still here thing). If the left ovary had shown any signs of cyst, my GYN was going to take it this time but it was perfectly normal even with all the adhesions that had wrapped it up for who knows how long. I even saw the pics he took of how great it looked. Don't want to place blame on it, again, I guess time will tell.

Thanks for the reply,
DLK
  #7  
Unread 03-14-2003, 11:42 AM
Lupron VS Oopherectomy

DLK,

Dear sweet sister... in my opinion: Don't take the Lupron. I did it for 2 months cause my GYN at the time thought there might be microscopic endo (turned out I had no endo at all). The hot flashes, insomnia, etc were horrible for me. I am not saying you will feel the same way I did if you go on Lupron. I loved the fact that it stopped my periods! Lupron does suppress the ovary or ovaries from producing ALL hormones. Endo is fed by your ovary or ovaries that produce the hormone. Catch 22.

While no one can make the right decision for you, if I were in your shoes (and I was till I had LSO on 1-30-03) have that ovary taken out hon. Then you will be over and done with it. Boom! No Lupron, nasty side effects, etc. Now, I'm not saying that you won't experience any of the potential side effects if you have your ovary removed. For me, it was the right choice. I was going in for DX Lap anyways and opted to have it removed cause I did not want to go back into the O.R. at a later date. Turns out it was the right choice; my left ovary was nasty: big fluid filled cyst on it and diseased/irritated tissue behind it on pelvic sidewall. I am on Cenestin 0.9 mg a day and doing great. Feel hormonally balanced and no longer have ANY pelvic pain at all.

I wish you all the best. Glad to hear you are doing A O.K!


Amy
  #8  
Unread 03-14-2003, 02:25 PM
I feel like an Endo freak :(

Hello DLK,

I did the Lupron thing before I had the hyst., And for me it was a horrible experience. I was throwing up, I had bleeding for 30 days along with severe menstrual cramps...terrible menopause symptoms with the flashing mood swings etc. I was to have 6 shots, but my body could only handle 3. It took months for me to get my period back, and I still had daily pain. It was at this time that I started experiencing really bad joint pain, and was diagnosed with Fibromyalgia. To this day, I blame that drug. Remember, this is only my experience...and yours could be different.

I had both of my ovaries removed at the time of the hyst (approx 2 1/2 years ago)...and the pain started up again in less then 3 months. At about the 7 month mark I found a new Gyn (Gyn that did the hyst. refused to listen to me) and she did a lap. I had quite a bit of active Endo She had to leave some behind due to it's location. I suffer from Endo pain on a daily basis. I don't think surgery would be a good option because of the permanent nerve damage that I have now. But as my pain is increasing even with pain management, I wouldn't be suprised if a lap is in my future.

I wish I had brighter experiences to share with you my dear...but this is my story. If you ever want to chat, please feel free to e-mail me anytime.

I will keep you in my prayers and hope that you will find another alternative...or perhaps that this is healing pain and that you will feel better very soon. Is your doc going to get back to you once he gets the pathology back? If he hasn't mentioned this to you, then please give him a call. I have also read that the use of Progesterone can aid in keeping the Endo at bay. Perhaps this is something to discuss with your doc. Some won't prescribe it, as some believe that there is no use for it in women without a uterus....but this could be an option for you. I would go the natural or bio-identical route. You may want to check out the hormone jungle. The women over there may have some alternative ideas for you....

I'm sending you many S and remember we are here for you....
  #9  
Unread 03-15-2003, 08:51 PM
I could just SCREAM

Thank you ladies!

Thanks so much for the advice, this is such a decision I did not want to be faced with, my heart sunk at the castle when they told me he had left the ovary but OTOH I was relieved at the possibility of a normal progression into menopause. I just left it in God's hands at that point, the decision was made on good grounds and so be it.

GYN made it sound like a testing pad- to try the Lupron to rule out endo I think that is how I understand it anyway?(maybe naturally my body would reduce estrogen provided by the ovary during menopause or perimenopause especailly if the Lupron suppresses it for a year or two??-wishful thinking right)

I am still curious about whether it is really endo though I am just not sure the left ovary has been totally functioning after the hyst and maybe I was low on estrogen from the symptoms I have logged. SO if the original pain was there when I was low on estrogen, if the ovary does kick in and start producing a higher level I would think the pain would start to increase too??? just a thought, maybe that will the be the test and not Lupron for me.

Another thought too, is why with all the laps I have had by several different GYNs have I never been dx-ed with endo- we are talking over the past 15 years ??? shouldn't one of them have found it and if not, at least when I had the hyst??? I thought it was apparent once they got in there, correct me if I am wrong?? Do they have to do some kind of test once in there to clearly dx it?

I just want to be healthy and toying with all this stuff makes me feel like it is hard to keep my health at its best. Again, I think things are going to have get overwhelming before I submit to anything further. I can handle ibuprofen right now and I am working hard on getting my habits like eating, exercising and nutrients in line hoping that maybe my body will kick in and level out the balance???

Oh well, enough pondering, I am going to concentrate on getting as healthy as I can and let the rest in God's hands. As always, I will research this until I am blue in the face before I ever succomb to another option. I truly believe God also gives us wisdom and people around us to help aid in our life choices! I feel so much better bringing it to the table here, I don't feel like I can really talk with anyone else other than my DH. I just know everyone is tired of hearing it especially almost 2 years straight. It's not like other health problems we have, lots of people even family don't understand it. OTOH: lots of folks think that modern medicine can fix anything with a pill or anecdote so what's up with me, she must be a hypochondriac sometimes I wondered about myself until the real pain hit and then I knew I wasn't.

Big s for your comments and being honest, I want to hear the truth about others experiences because no matter what the medical world says experience speaks louder than Journal reports in my book.

Thanks again,
DLK

BTW: I think I am going to change my User ID to the DLK-the rambler- sorry for yet another long post
  #10  
Unread 03-15-2003, 10:16 PM
I could just SCREAM




I was on Lupron almost 2 years ago. I will tell you my experience and it wasn't a good one. Basically it was a major trade-off. It got rid of my pain, but the side effects were horrible.....FOR ME. Remember everyone is different and you won't know how your body reacts to it until you try it. Many women have a very good outcome....I was an unfortunate one and I ended up with some of the more rare side effects.

The first month on Lupron, I had increased pain in the first week, from what I understand, that's normal. I also had headaches, dizziness and hot flashes. My gyn assured me that the side effects would get better or go away after that first month. They didn't! The side effects I already listed got worse. I came sooooo close to passing out several times. I know what it feels like right before passing out and this was the feeling. Lupron made my heart go wacko! I had palpitations like crazy and one time ended up in the ER because my heart suddenly started racing at about 185 beats per minute. I was so dizzy all the time that I shouldn't have been driving. By the 4th month, I started losing hair on my head and at the same time started growing a beard and a mustache! That's when I called it quits!

That was just my experience. I haven't heard too many people having the problems with heart palpitations and facial hair growth.....I think I was one of the unlucky few that experienced that.

Again, everyone is different and your experience will most likely be different than mine. I went into this knowing that there were horrible side effects, but I also knew that maybe I would be lucky and have a great experience. My doctor considered having me get a 3 month injection, but we decided on doing 1 month injections instead incase I needed to go off of it. I think that was the best decision because once I decided to go off of Lupron, I only had to wait a couple weeks for it to get out of my system instead of a couple months.

Keep us posted on what you decide to do. I sure hope I didn't scare you, but I know I would have loved the honesty before I took Lupron!

's
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