Endometriosis - Lupron
 

I have had right abdominal pain for months (this is massive pain that vicoden will not touch). Have had every test in the book including two colonoscopies in the past six months. Everything is coming out normal. My dr is going to give me injections of Lupron, I guess to prove whether it is endo or not. No one has offered a laporoscopy unfortunately. According to my family dr, if the Lupron doesn't work, then I need to go back to the pain spec for more blocks. She says that the "trunk" has it's own nerve system and that my brain may have rewired itself to new pain paths.

I also have rectal bleeding during my periods which they can't explain through the colonoscopies.

My background is TOS and 5 bulging/herniated discs in my lumber.

I've been reading up on Lupron. I'm 47 so I don't mind early menopause.

Have any of you experienced Lupron?

Hi....

I have no experience with Lupron and I am a little younger than you ( 26 yrs old), but I do have experience with pelvic/abdomninal pain .

If you have not already done so, please ask to be referred to and seen by Gyn dr. They are the ones that have the best training to deal with endometriosis and other women's issue (vs just a family dr).

(btw--I have never heard of Lupron being being able to confirm a diagnosis of endometriosis)

About 18 mo ago, at age 24, I started having pelvic/abdominal pain, that for the longest time was basically blown off by my internal med drs. When I was FINALLY referred to a Gyn, she was able to figure out what was really happening; and after doing a few simple tests realized my "small" ovarian cysts that "shouldn't be causing pain" (according to my internal med dr) had grown very large AND endometriosis was suspected. A few months later my Gyn did Laporascopy and some other procedures, and the endometriosis was confirmed. I still battle with Endometriosis-- but at least now I know "for sure" what is causing the pain.

More recently, I was also diagnosed with a condition known as Interstitial Cystitis--- by a GYN, after many years of my regular doctors--- while very well intention, thought the symptoms were from a UTI or stress, or overactive bladder (Overactive bladder and IC can have some similiar symptoms) . My Gyn put me on a med that treats IC vs just overactive bladder and my IC issues have improved a lot.

My point is, you need to see the right specialists, so you can accurate diagnosis. Sometimes symptoms overlap and sometimes things presently differently than norm (for instance with my ovarian cysts they often press on my nerves and in addition to pain, i also have tingling --which can confuse people). Once you get an accurate diagnosis, then you can get the right treatments and that can make all the difference.

I know its tough and I can really empathize with you--- hang in there !

L2L :)

I've never heard of Lupron myself. When I was diagnosed with severe endo, I was 24/25 years old, and it was found during a laposcopy.

In fact, I was under the impression that endo could ONLY be found by laposcopy.

Best see a gyno for sure.

MJA,

Yes, I have had experience with Lupron. It was a one time-3 month injection PRIOR to a total hysterectomy to put me through artificial menopause and to try up any residual endo.

PLEASE, see an ob/gyn about a laparoscopy FIRST. Lupron is powerful stuff and I would not take it lightly. I agree with the other posters there may be no need for it so why put yourself through menopause. As the last poster said...see an ob/gyn before having this done by a GP.

(((hugs))) to you!

Doctors typically choose to use Lupron to help diagnose (or rule out endo). The endo symptoms are generally caused by hormonal changes throughout our menstrual cycle. Therefore, by suppressing the female hormones, the endo symptoms should slowly decrease during the shot treatment. If symptoms of pelvic misery aren't suppressed, then that rules out endometriosis as the cause.

I did take monthly shots of Lupron for 3 months. My monthly bloody misery abated in month 2. There are side effects of the medication: frequent night sweats, dry skin, hair loss/thinning. I think that there was another... I can't recall what it was, sorry! From there, I was to get a 3-month shot to get me more time.

Best wishes to you!
Shez

had my shot
 

It's official. I had my three month shot. Keep your fingers crossed.

Don't think I didn't want your advice. Really I do. With all the meds I'm aready on (amitrypaline, lyrica, protonix, vicoden) I already had hot flashes and most of the rest.

Now I'm trying to think positive! As I said before, this has to work. I can't accept that this is just another chronic pain. It's too debilitating.

It's a week tomorrow
 

Don't feel any different pain wise. It's still pretty bad. Vomiting and diarrhea seem to be getting worse.

Sm still trying to stay positive.

MJA-TOS,

I feel for you, I really do.

I just wish your doctor had suggested a laparascopy first. I was reading the posts in the other thread as well. And, I too, was always told endo could only be confirmed by a lap. Anyway, I had endo in my teens and all the way up to age 45. And I was lasered out about every two to three years. Mine is a long story. Suffice to say my Reproductive Endocrinologist NEVER suggested Lupron through the years. It wasn't until a lot later on that she even suggested it and as I said, PRIOR to a hysterectomy. But only to dry up any residual endo prior to surgery and to help me get through surgical menopause without a hit by using add back therapy when done. I am sorry but I think it is bad practice to give someone an injection of Lupron without confirming a diagnosis of endo first and/or in light of a hysterectomy. You might want to read up about this practice. Lupron is powerful and your system will shut down over the 3 months. While I don't recall nausea and vomiting I did have horrible headaches and hot flashes that came every 10 minutes for 3 months.

I am sorry I don't mean to sound so abrupt; I just feel badly for you. And again, I wish a lap had been offered first. It would have been so much easier to confirm it and then have it lasered out (if there is endo) then to put yourself through so much misery. Hopefully, the 3 month shot will work IF there is endo.

Hang in there and remember it will take time; which is why they call it the 3 month shot.

Is this a known side effect?
 

It's been a week since my lupron. Last night I started bleeding. Now I'm having a bright red period as well as rectally. I thought this shot was supposed to stop your periods!!! The pain is horrendous and daily. Should I go to the ER for a shot. That's what I debate every night lately. God, I really need relief from this even if it's only for four hours. My dr made me promise her that I would call if I was sucidal. Who wouldn't be suicidal after all this pain. I feel so desparate at times.

I've had a good cry. Maybe my serotonin levels will be better tomorrow. I can't stand the thought of another weekend like this.

Sorry. Sobbing again.

Update
 

Not sure if I updated all of you. We ditched the endo idea and went with diabetes. My pain was sooo bad last week I went to er for a shot. Found out my sugar was at 450. They gave me insulen for 36 hours and sent me home for a family dr update. I'm now taking glucophage 2000 mgs a day. Pain seems to be going down some. Thank goodness. I was getting suicidal with all that pain. I'm also taking blood pressure meds, an aspirin, and cholesterol meds. I hope I'm on to something and that this abdominal pain will go away.

I will not be taking another lupron shot. Yipee.

um, WOW! :hug: you poor kitten. you have been through so much.

Had the MDs not done a simple blood test to check your sugar before? Did you make it to an OB/GYN? Rectal bleeding during your period "may" be triggered by endometrial tissue that has invaded the rectal wall, and reacts the same as the endo tissue INside the uterus when triggered by hormones to shed, but you need to have that confirmed. They can do a colonoscopy to check that, OR they can do a "keyhole" surgery. They make three very small incisions, and poke a camera into your belly. They can peek at your ovaries, uterus, and bowels to see if you have scar tissue or uterine tissue out of place. its an easy surgery to recover from, and would help give a better view of what is happening on the other side of those organs. You can have the scar or excess endo tissue removed at the same time, and that may free up trapped organs, or trapped bowel tissue.

I am glad they finally figured out your blood sugar was high, but have they provided you with any answers as to why it went that high? I hope you keep asking questions. You should be under the care of an endrocrinologist now with the diabetes, and they happen to specialize in hormones as well. Fire away, ask some big questions.

I hope you feel better soon. :hug:

I've been there too
 

MJA,
I am 30 and just had to have a hysterectomy because of my endometriosis. My pain was so bad it hurt to walk, my pain was only on my left side though. However, it took me six years and finding the right doctor to get pain free where i am today. I started off with the Lupron shots six years ago and it helped at first but i was also battlling ovarian cysts. In the following six years I had switched gyn drs because my gyn wasn't helping me only to find out that six years later my choice was even worse and i would end up back at the same gyn practice i was at before but with a different dr. on my first visit with her she new exactly what need to be done and two weeks later i was surgery and now recovering. Over the years i was in pain, tried iud, pain meds, ultrasounds, ct's and nothing would happen until i finally said enough and told my primary care i wanted a referal to the best gyn in my town. So the first step is to go ahead and do the lupron shots because in the end its a process of counting out all methods of treatment before a hysterectomy. good luck

Re:Lupron/Endo
 

Wow! Our stories are pretty similar, but I just want to tell you a little bit about my experience.
I'm 27 right now, and had a large cyst the size of a grapefruit that was twisted and hemmoraging around my ovary removed (and 3/4 of my ovary) when I was 15. Since then I have always dealt with painful periods and lower left side pain (the ovary removed was my Right). About 2years ago, I started bleeding constantly (always been on birth control) and my stomach swelled up till I looked 8months pregnant! I ended up in the hospital for 3months, they performed cystoscapy, colonoscapy, laproscapy and found endo, my uterus closed, interstical cystitis...all of which is pretty much untreatable.
I was discharged and the pain immediatly started growing again. I never did stop bleeding and now my bowels quit working. I am on an unreal amount of narcotics (oxycontin,percocet,naproxen,elavil,fentenal) that don't really seen to eleviate the pain (prob because I've been on them long term), and I also go to internal physio. (yucko!)
I've been to several pain clinics, gynos, doctors, specialist that tell me they don't know anything anymore, and I should just try to learn to cope because there's nothing they can do.
Recently I was referred to a new gyno that informed me about Lupron. He wants me to take the shots for 6months because he's seen remarkable positivity with it in several women with endometriosis. He also says that some women who have just a couple spots of endo can be in severe pain, while others who have severe endo may not even have any symptoms at all. Everyone is different!

Well, I made sure to do my homework on this Lupron drug, and found pretty much no positive feedback anywhere I could find on the internet. Everywhere I looked people were saying how awful it was, to never go on it, that it ruined their lives, that they were left disabled. ..I started freaking out and thought there would be no chance in hell I would be going through with it.
Then, When the pain became unbearable, I realized I really had no other choice, so I started it.
I've only had 2injections so far (started Oct.9,2009)and I'd have to say it really isn't as bad as it's made out to be. Yes my bones are sore, I can't sleep yet I'm always tired, minor hotflashes, memory loss, hair loss (more like extra shedding)..but so far its not as terrible as everyone else made it out to be. My bleeding has stopped, but the pain is still there (I'm still on pain meds and I was told it might take 4injections before I notice a change) and I still can't go to the bathroom normally,..but if this will take my pain away in the end, it would be worth it to me.

My point is, the internet only has negativity to report, because everyone that has had good results or feels better has no reason to vent, so they don't bother writing all the good about it because its no longer an issue in their lives.
The only way to confirm endometriosis is through a laparoscopy exam, and everyone reacts differently to drugs, treatment.
You really should try to convince your gyno to do a scope to see what really is going on. In my opinion, Lupron should be a last resort because it is a form of Chemo, and if it can be avoided it should. Most endo can be removed/lasered through a scope. (mine is too large and spread out on my bowels, bladder etc to go at it that way).

Good luck, and I hope you are doing well.

hey the only way to dx endometriosis is to have suurgery and i would find a other doc
 

hey the only way to dx endometriosis is to have suurgery and i would find a other doc i had to begg my doctor at the time to do the surgery on me because the pain and sure enough i had it and bad.

that same doctor felt so bad because he would not listen to me when i went to him he made me wait a month maybe longer and he said no wounder i was in pain for he just kept saying he was sorry for not listening .

he told my family that i must really been suffering when i went to him and i was but he did not believe me but i would keep looking till you find a doctor that will do the surgery and dx it because it sound like you do have it.

your reg doctor is not going to know if you have it by looking at you . he or she needs to send you to a doctor that will listen to you and do a surgery to see if you have it.