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Lupron or Just Me?? Lupron or Just Me??

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Unread 04-29-2004, 11:32 AM
Lupron or Just Me??


I hope that you manage better on Lupron than I did. I know that it helps many women...

I was supposed to have 6 shots (1 a month) but I was so sick, I stopped after the 3rd. My doc put me on it before I had the hyst., to see if it would help with the Endo pain. It only seemed to make things worse for me. I had a period that lasted over 30 days (with severe cramping)...was several times a day...lost a lot of hair, and it also affected my ability to think clearly and my memory is gone. Like ((((Abbie)))) I used to have an incredible memory. I could remember phone numbers (after dialing once) people, places, names etc. People were always impressed by my memory...that is a thing of the past. At times it is so bad that I don't even know why I am somewhere. Luckily I don't have those 'episodes' very often, but it is very scary...

I am still dealing with cognitive issues, but I don't know if it is linked with the Lupron. It was while I was on Lupron that I was dx with FMS. I'm not sure if the drug triggered it, or if it was just a coincidence. All I know is that it was not a good experience for me.

I'm curious about something...Did your doc put you on Premarin as soon as you started Lupron? It could be that your body is very confused at the moment...while being in a state of pseudo menopause (with Lupron) as well as having the add-back therapy. I know every doc is different, as we are too My doc put me on a very low dose of estrogen/progesterone after a couple of Lupron shots (can't remember which one <fog>) as she thought it would help me with the horrible hot flashes and joint pain. It helped a bit, but I decided to stop the Lupron because I was so sick. This is a personal choice though, and you need to see if it makes you feel better. A thought I had after reading your post...If you continue to feel bad, perhaps you may want to discuss going off of the Premarin (only with your dr's permission) to see if you do find relief. Your body is being sent mixed messages at the moment, with being on both...Perhaps something to consider...

I hope and pray that you do find relief...Endo is a monster. I am still dealing with it (LAVH/BSO in Nov/00) and am contemplating another surgery. I am nervous about it though because of nerve well as the fact that after every op my FM gets so much worse...We'll see....

A pain diary is an excellent idea...keeping one has really helped me (and more importantly the dr's) figure out what was/is going on.

And yes, Endo can grow on the bladder. This is one of the places that I still have it.

All the best to you ((((Kim)))) and make sure you are comfortable for that long drive to the wedding. Perhaps you can stack some pillows in the back seat so you can you said stop to stretch your legs etc. You can always get dressed for the wedding once you arrive. Are you staying overnight somewhere? If not, perhaps you can arrange to get ready at a family or friends home.

Please let us know how you are doing sister S
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Unread 04-29-2004, 01:21 PM
Lupron and Premarin

I got three shots of Lupron in the three months prior to my hyst 14 years ago. Was told that side effects would be like menopause. The Lupron worked (shrunk fibroids and uterus) -- but I experienced NO side effects.

I was on Premarin 0.625 mg. for 12.5 years. For the first few months I did feel slightly nauseous (sp?) after taking it, but eventually my system adjusted and it didn't bother me at all.

Mary D.
Unread 04-30-2004, 02:27 PM
This is really making me think.........

I am about 2 months into a 6 month course of Lupron – 2 shots 3 months apart. I have had joint/back/hip pain for a LONG time – was diagnosed with FMS, and DDD the summer before my TAH/LSO in 2002. After the hyst, I seemed to be in a FMS flare for a solid year. Then came the return of cyclic issues with a vengence. My gyn attributed this to probable return of endo and thus, the Lupron.

My joint/hip/back pain has been so severe for the last few months that I have been in and out of my GP’s office, on and off steroids, pain killers, etc. Tuesday he decided to test me for RA and Lupus again. After reading all of this I’m wondering if it isn’t the Lupron causing the increased pain??? I do feel like the pelvic pain has lessened, but how in the world do we know what is causing what with so many things going on????
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Unread 04-30-2004, 04:29 PM
Lupron or Just Me??

Dear ((Bills))

I developed quite bad joint and muscle pain while on Lupron.... the worst area was in my hips... but I had pain in most joints as I recall (elbows, ankles, my heels hurt)... I was sent to a Rhuematologist and a blood test revealed a moderately elevated ANA (1:160).... but it was the type of result they see when people have auto-immune responses due to drugs (I think a heart drug in particular - don't recall). The good news was that it wasn't due to osteopenia or osteoporosis as the DEXA scans have shown I have excellent bone density (at least something works right ha-ha!!).

ANyway, based on my experience it could be that the Lupron is aggravating your existing problem. I have always wondered in my case if it was the Lupron or the menopause that caused my symptoms and if it means I have a possible joint/muslce problem lurking, waiting for me to hit menopause.

Best wishes and s

Unread 04-30-2004, 05:33 PM

I had several treatments of Lupron I am glad to hear that it is helping your endo and so sorry to hear that it is causing other problems... I to suffered from its ill effects and have never been the same...
To this day even though I have had a Tah/BSo I am still suffering from chronic pelvic pain, and severe back, hip and leg pain. I am patiently waiting for my pain clinic appt on May 14.

I will keep you in my
Unread 05-09-2004, 08:06 AM

I am so sorry to hear that lots of ladies are having bad problems with the Lupron. I had lupron shots once a month for six months more than a year ago. It shrunk my fibroids, and I didn't have any periods for the entire time. I didn't have any side effects at all-the doctor kept asking me at checkups if I had memory problems or hot flashes, etc, but I didn't. So those must be possibilities or he wouldn't have asked. Since I am so close to menopause (I am 54 now-was 52 then) we thought that the fibroids would shrink, then I would start menopause, then all would be well.

Within 2 months of the last shot, Auntie Flo came back with a vengeance. Now the doc says I can't do the lupron again, and the fibroids have enlarged again, causing pain and pressure on various important internal places! So I think at best, that lupron is a temporary fix, but they have to try things first.

I know that some short term memory problems and irritability can be from hormonal levels, and in perimenopause the estrogen can surge making it worse than in actual menopause.
Unread 05-09-2004, 12:16 PM
Lupron or Just Me??


After reading your posts I am so glad we did not go with the Lupron. She was considering giving me a shot in the OR but decided not to and I am so glad. I have heard and read about the terrible side affects and that really scared me.

I have not caught up with where everyone is at, are you scheduled for surgery or just trying other options to avoid it. Endo can be a terrible thing as we all know and I wish that it were easier for them to treat. My doc is very confident they got all mine this time and not taking HRT hopefull if they missed some it will dry up and go away. She was very adamant in explaining to me the recurrence rate that I look at now. It is 4% for women with not ovaries or anyting else so hopefully I will fall into the 96% and not have it come back, I am done with it!!!

I hope that you get to feelin better soon and I can relate to the no sleep, I am battling that now, don't know if it is already a menopause symptom for me or the anethesia still in my system. I try not to take naps during the day so I can sleep through the night but that doesn't help much so I am glad I am home and not working because it seems that I sleep best in the early hours of the morning right before I am supposed to be getting up and ready for work.

How many cysts do you have right now?This time for me at first there was only one then it shrunk down or changed shape to reveal 2 more, at least now they are gone and that is all that matters!!!

Rest while you can and I am glad that you have an understanding DH to help you out, that does make a big difference!!! DBF has been very understanding with me and won't let me do anything except rest!!!!

hope it gets better for you!!!!!

Unread 05-09-2004, 06:37 PM
Lupron or Just Me??


Overall all the past two weeks I have been feeling fairly good except for some nasty headaches that started late last week. DH and I are thinking it's allergy's.

I don't know how many cysts I have. All I know is that about 8 weeks ago when they did an ultra sound my ovaries where completely covered with small cysts. I have PCOS, so I was not suprised to see that. I was in alot of pain when he did the Ultra sound, he kept pressing on the ovaries to see what kind of pain I was in. It hurt bad. Guys that's more then likely why sex is pretty much obsulete in this house. DH says he is too afraid to hurt me.

I have two more lupron shots... My next one is on the 17th. The reason why they are having me do lupron is because he feels that if my pain is decreased my the lupron then removing my ovaries will help with my pain. He wants to make sure that it is going to help before removing them because of my age (26). I know I should not be to quick to give them up, but with the amount of pain I have had in the past 8 yrs I say take them! Does not sound like they are willing to discusse surgery until after my 3 rd shot.

I am a little nervouse... The fog feeling, loss of memory or thoughts and loosing my cool is starting to bother me at work. I have been having problems dealing with people and getting very fustrated. My boss pulled me a side on Thursday after lunch, because she had witness me having a hard time with calls both days. She asked me what was going on, was I having problems at home, am I not feeling well... ect... I don't know how to explain I am just loosing my mind sometimes and can't deal with it when callers push all the buttons that make a person want to jump of the edge. Normally I have no problems dealing with these sort of things. I am also consered because my team courdinator plans on sitting in within the next few weeks.

DH says just do what I can and walk a way and take a break when I need it. Not always that easy when you have 10 people waiting for you to take their call.

Hopefull this week will be better. DH took me home to my dad's & stepmoms for Saturday night. It was so nice just to relax and spend time out in the country and see my childhood cats who are 18 and 15 yrs old.


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