Endo symptoms and conditions

For me, it has been about 10 years, I think, since I was on lupron. I got a shot every 3 months for almost 2 years. At the time, the Dr. told me that the Lupron was still in the experimental stages but they thought it would be beneficial for me to try. I had a mini lap done because of a softball sized cyst rupturing so she couldn't see anything in my abd with the regular lap. I was diagnosed with stage 4 endo and started not long after on the lupron. I do not envy any woman that has or is going through menopause because the mood swings and hot flashes that I remember, were aweful.
Since the end of my Lupron, many years ago, I have noticed a few things that I never really put in line with the shots, ex...severe headaches, bad memory loss (to the point that I sometimes cannot remember things I just did), joint and muscle pain.
For me, the Lupron was a God send for the endo, I was cleared after about a year and went back 2 years ago for another lap and that was clear of endo but I have bad adhesions.
Before all of this started, I was a very active person with horseback riding, clogging (a type of celtic dance), and a very dependable person. Things are getting worse for me and I am only 32 yrs. old.
This is one of those moments, I know there was a reason for me to write this but now after being so long from reading the other comments, I cannot remember what my point was. No need to delete this though.
If anyone knows of anything that I can do to help with the memory issues, please help me out. All kidding aside, I cannot remember to take the vitamins that are suppose to help me remember.

I am a 27 year old female and I have stage 4 endo and have had lots of rupturing ovarian cysts. The laporoscopy was pretty ineffective for me and I tried birth control and had severe vaginal bleeding during intercourse. So my doctor wanted to do 3 months of Lupron Depot and add back therapy with Premarin.
I have only had one shot of Lupron and that was on 10/16/09. I noticed side effects with in 24 hours. I had severe joint pain especially noticed in the right hip ( I was injected in my right side) severe migraines, awful mood swings, short term memory loss and that was all in my first week on the shot. I started feeling better like 10 days after the shot, but that was only short lived. Now even after three weeks into the shot, I am in so much pain in my joints, it is difficult to take care of my two toddler boys and my home. I now have a crazy rash on my butt, and still have so much pain in my body as well as feeling numb in my toes, left arm, and fingers. This drug appears to be more ineffective than effective and I feel like women need to explore other options before going down this unknown path. I found out through research on the internet that the Premarin that I was taking as an add-back is made from PREGNANT HORSE URINE and that the horses are treated like crap so everyone can get rich off them. There has to be other options for people that have already gone through the nightmare of endometriosis. I would take endo over these side effects any day.

After reading so much about Armour, earlier this year I decided that I would like to try it. I was actually feeling very good on Synthroid but wondered if I could feel even better. I was on Armour for a month and got very ill. Dizzy, legs swelling, hard time walking and standing. I went back to the Synthroid and it has taken me about six months to recover. I had a thyroidectomy about 3 years ago and never gained any weight until I was on the Armour, about 15lbs. My Endo says everyone is different with the meds. I really wanted the Armour to work out for me and will be hesitant to try anything else now because of my terrible experience.

I'm 24 and just recently finished my lupron treatment for endo. I'm still having some of the side effects and have yet to start my period again. I honestly would've rather had surgery again for endo than go through months of the side effects. The memory problems, overall fogginess, night sweats, insomnia, mood swings, hot flashes, and just the stress and complete crappy quality of life I've had most of this year has completely affected all aspects of my life. It's not easy at work, at home with my husband- surgery took a day or so to recovery from and this has been a nightmare for months and months. I'd really think about it and research the benefits for you vs the side effects before doing it. If there are any other options- I'd absolutely consider them.

Hi
I am in the UK - where any knowledge of side effects related to Yasmin appear to be non-existent. I was prescribed this to treat my endo after having problems with another pill (constant bleeding and mood swings).
Initially it was like a magic pill - immediately improving the mood swings and stopping the constant bleeding. Then after about 4 days I felt so nauseous I wanted to go home from work - this lasted a few days.
A week and half into my first pack, I suffered continuous asthma attacks - with no obvious cause, this developed in hours to spontaneous vomiting along with a hacking cough.nI was prescribed antibiotics for "infections". The symptoms continued until it was unbearable and I was put on anti-vomiting tablets. and changed onto a different antibiotic.
A week later back at the doctors surgery I had a series of tests - awaiting results as I type, as I have very dark urine, stools that are not "normal" (clay or yellow), pain in my stomach, pins and needles, continue to vomit if don't take the anti vomiting tablets. Have now stopped taking Yasmin and await results...
HOw long does everyone appear to improve after stopping taking Yasmin? Also does this sound like I may have a case of hyperkalemia? (I am awaiting results).
Many thank

Hi I am dumb struck by coming across this site i never dream it could be my mirena causing my unexplained symptoms but the more an more i read it i am fighting with my hospital to get it removed A.S.A.P. i have suffered severe dizzy spells,heavy legs,fatigue,sweats,headaches,loss of concentration,mood swings,bloating,thinning of hair,weight gain, depression,dont want to communicate,just fallen apart in the last 17 months,had number of tests all come back normal,i been back to hospital today to fight this corner an they need to see how many women this really affects as every doctor i have seen says no way can it be the mirena but reading all these this needs looking into.i am worried about the dizzy spells they are my most concern along with panic attacks that come out of the blue..makes me think it may be my mirena after all :( just want to be back to my old self again..i have been to A& E at least 9 times with same symptoms only to be put on diazepam which i don't like to take,i am so upset that i still got to wait 6 weeks+ to have it removed as i got to go under to have it done as they cant reach the threads they are up instead of down...i am hoping after my long wait that i have now found an answer to all my symptoms an the mirena needs to be looked into more.an after it is removed i hope i get better as i have also read it can have after affects.nightmare wish i never had it put in.....

ok, so I am 28yrs old just had my lap for endo on October 1 and my doctor has recommended lupron, and am going to be getting the med in a week to 2weeks,but after reading this I am soooooooooo scared to even get near this med. Its like you either take this with the hope of saving fertility and no pain..or not and have endo ravage your body and you will live with unbearable pain!!! I have no idea what to do,and i am so scared after reading this. Is there anyone that did not have weight gain, headaches etc...anyone that can testify that lupron actually worked for them? did any one have a baby after doing this. my bigs thing is being able to have a baby. Cause right now its my health on the line, my ability to have children, my ability to have a normal life free of endo pain or these crazy, horrible side effects...please help me!!!

ok, so I am 28yrs old just had my lap for endo on October 1 and my doctor has recommended lupron, and am going to be getting the med in a week to 2weeks,but after reading this I am soooooooooo scared to even get near this med. Its like you either take this with the hope of saving fertility and no pain..or not and have endo ravage your body and you will live with unbearable pain!!! I have no idea what to do,and i am so scared after reading this. Is there anyone that did not have weight gain, headaches etc...anyone that can testify that lupron actually worked for them? did any one have a baby after doing this. my bigs thing is being able to have a baby. Cause right now its my health on the line, my ability to have children, my ability to have a normal life free of endo pain or these crazy, horrible side effects...please help me!!!

Looking back at a post, it was 8 months ago when i first posted re long periods. and I'd had 3 two week ones then. So 11 months of bleeding...I've been to the docs, taken more hormones, different hormones, tried not having sex, tried having lots, but still bleeding and bleeding. Mirena used to be great. Have had it for over 3 years..... but it just stopped working. The acne has got worse.. the mood swings are worse, the dizzy spells before the "period" pain.....

I feel so guilty for recommending it to so many people as the answer... but it just isn't right for me anymore. Got an appointment to have it removed - scared of the removal pain and possible Crash... always struggled to keep hormones in check!

Thanks to all for their posts ... nice to know we are not alone. Would be nice to hear from anyone who has used Mirena to control Endometriosis.... or is thinking of it.... think it's pretty good... but hard to tell as it was inserted when I had my lapaoscapy and removed the adhesions. All Mirena side affects confused with endo.... but still think Mirena is the big cause.... enough is enough. Three years is a long time. (and a period constantly for nearly a year is insane!!) Good luck.....xx

I have had NO side effects from Lupron Depot. actually the only side effect I have had has been pain relief. I took it for nine months. I too have stage four endo. it has been a God send!

I have been taking Levoxyl for about 2 years. I have told my Endo doctor many that I have had headaches, nausea, stomach pains and have gained 40+ pounds in the 2 years. Every time I go in to review my blood tests and tell her I'm not feeling right I get the same respondents as a lot of you; they are you sure you are not pregnant? you need to change your diet and eat right? you exercising enough?...The Dr always seems to ignore my symptoms. The last 4 weeks have been Hell for me...I woke up one morning thinking my stomach was going to burst. I went to the Er. They did an ultrasound...found nothing..gave me stomach reflux meds and I went home. 2 days later the pain was a lot stronger right under the center below my rib cage. Went back to the er. They gave me more protonics and gave me a gi dr. I went to the GI doctor and got a contrast scan and then a scope. They of course found NOTHING. A week later I woke up again with the worst pain yet and the cold sweats...to the point where I was going to pass out...Went back to the Er where they gave me a cat scan. Everything was perfect the er doctor said. "They said they couldn't tell me what was wrong". I knew I wasn't going crazy and having all these symptoms but no one could explain why or what is was. I was getting fed up of being sick...So I took my Levoxyl like I do every morning and within 15 mins the pain was back. I went online to look up the side effects of Levoxyl and found this site. Its great to know that I am not the only one out there with these side effects from this medication and am not going crazy! I made an apt with my Endo Dr today called and told her this med was making me sick. She made me have an apt with her assistant. I printed off this page to show her I wasn't alone. As of today I am off of Levoxyl. Thanks to the new Dr who FINALLY listened to me. I do not have to take any other form of this med either. Since I just had a nodule not hypothyroidism. Please Can anyone tell me what they went through from withdrawal from this medication? and anything that helped it go away? and How long did the "detox" from Levoxyl last?

I am deeply saddened to read all of these posts! I have a dear relative of mine who is suffering due to Lupron shots as you all are! Same symptoms same everything!

I did not know much of Lupron until she contacted me. My family knows that all my life I have struggled with health issues so they call on me for advice. It caused me to research Lupron for months. I am so glad it did, bc I was not aware that Lupron was so MUCH like Synarel was for me in my youth (I am 44 now).

I was prescribed this new unheard of Synarel for endo. It medical induced menopause-shrinking my uterus to the size of a walnut. I didn't care much about all that bc I was in pain w endo & cysts and was having way too many laps done. So I took this Synarel! You sniff 1 shot in 1 nostril am, and 1 shot in other nostril in pm. Suffice it to say that day built up and led me to 2002 where I had my oophorectomy-salpingo total hysterectomy.

I am in surgical menopause - and ladies so are you!! That is why all the terrible, terrible side effects! Losing hair, arthritis, hip fracture, hot flashes, insomnia, no libido, prolapse, etc. Just look at your mom, grandma, great grandma - you are experiencing their (age) symptoms. And doctor are saying that's a "normal" side effect of Lupron. Well of course it is your in Menopause!

THE GREAT NEWS is that there is help, answers, and health you just have to find it. I have been "finding" it since 2002 from all the resources I blog about and list on my blog (books, authors, doctors, pharmacies, websites, etc.). I am NOT a doctor just a woman who has been seeking answers to a life-long battle and who is FINALLY finding answers from those who have paved the way for me!

I would be honored if you would visit my blog and perhaps empower and arm yourself with the same information I have spent years researching!

I wish you all health, happiness and peace in these terribly difficult times you are going thru - there is light at the end of this tunnel - DON"T GIVE UP!

K.
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I have endo and have had surgery for it and now I have not had any pain with my lupron shot but I have become VERY depressed. My husband doesn't understand! Thank God I only have to take one more shot (that lasts for 3 months) and then I should be able to have kids... if I still have a husband by then. My doc put me on an estrogen tablet to help with the hot flashes and that has helped. I feel hot but don't sweat. I am also on lexapro which helps with the depression but heaven forbid I miss one!

I had a lap done last year in May and my doctor removed an adhesion that was hanging above my uterus. Also a fibroid (3 cm) was found in the muscle and is located right against my bladder. My doctor could not remove the fibroid because of its location and because of a risk that I might have scar tissue and could be a problem to get pregnant. He also said that I could have some other complications, like lose a lot of blood. I feel like he is not being straight with me. I also have ovarian cysts which is common in the women in my family. Since a teenager, I always had really bad cramps and heavy bleeding. As I got older, it became worse. Before I had the lap done, I bleed for 6 weeks straight. I was changing pads every 30 minutes. Then my stomach extended so far out that I looked pregnant. I could not sit or stand. My husband had to take me to the E.R. An ultrasound was done and found that my uterus was enlarged (9 cm). I was put on Nothridone to control the bleeding and to treat endometriosis. After taking 2 months of this drug my doctor did a vag lap and abdomen lap. Everything was good that is what he said. I believed it. I was doing better. I was working and had no pain for 8 months. Then it all changed for the worse. I started to have really heavy menstrual bleeding and lots of blood clots. I felt week all the time and sick. The bleeding went on for 8 weeks and finally my doctor said that I had to take Lupron injections. I asked my doctor if he could just do a myomectmy and he said no because that was should be the last result. I could no longer stand the pain and I asked him what kind of side effects come with this drug. He made it sound like it was not bad and that there are very little side effects. He gave me a some information about the drug and I read the information and I did a lot of research. I was terrified but I had to make a choice. I was calling in sick because I could not work with the pain and worrying about embarrassing moments when my pads failed to keep me from overflowing. So I took the 1st shot in May along with add-bak therapy which is Nothridone. The bleeding tapered off slowly and the pelvic pain decreased. I did not feel any side affects right away until the second week. I started to forget things and would just stand in the middle of a room feeling confused. I always had headaches since a child but now they are pounding headaches, which I cannot stand any noise. I also can't stand the light. I have body aches like I have the flu and have problems with my right hip all of a sudden. I had a x-ray done because my doctor thought I might have fractured my hip. There was no sign of a fracture but my pelvis id tilted. I have some arthritis in my spine which I do not understand how that happened. Sometimes I cannot walk and I have to use crutches to get around. I cry all the time because I am extremely sensitive and confused. I use to be a very strong person and now I just cry all the time. I called my doctor to tell him what I have been experiencing and he said its all normal. I have already had a total of three Lupron injections and the symptoms just get worse. I have been spotting here and there, sometimes I have a pinkish discharge, and now the pelvic pain is back. My doctor knows this and he just says its normal. I requested for another ultrasound because I am worried something is wrong and he said that I have to wait until I get the 6th injection.I feel like my doctor is insensitive but he is supposed to be the best GYN doctor where I live. I also want to say that I have gained 20 pounds in three months. My sex drive is gone. My hair is thinning. I lost my job because I ran out of FMLA. This has been a nightmare! I am losing trust in my doctor. My poor husband and family are having to put up with what I am going through. I pray all the time to help be stay focused and think positive. I just do not know what to do anymore. Is there anyone out there that can give me some advice?

Hi. I just had a laproscopy done 3 weeks ago for endometriosis. I am 26 yrs old and have been dealing with this pain for almost 2 yrs now and it is the worst pain in my entire life. My doctor is now suggesting Lupron because even after the laproscopy the endometriosis was level 4 and had bonded to my intestines and literally trapped my ovaries and uterus against the lining of my stomach. The pain was a 15 to say the least and the past 3 mos it had landed me in the E.R. Finally the docs figured it out. I started my period 2 weeks after the surgery and the pain was still pretty bad. An 8. Now I am seriously considering Lupron. My health is on the line and this pain is not right. At this point I am considering a hysterectomy if Lupron does not work. Any help suggestions please? Monday I follow up with the Dr.

Ugh, this has to be the worst medicine I have EVER been on. I was having anxiety attacks that occurred every evening and lasted for hours. Hot flash, nauseousness, inability to concentrate, thought I was going crazy.........
they started after my mom went in for open heart surgery in Nov of 2008. They put me on Xanax for attacks, and Clonazepam (double ugh), and I didn't take Effexor for a while, but my aunt convinced me to do it as I wasn't doing much better.

The thing is I'd been having issues with fatigue, heart palpitations, facial hair, etc. for several months to years and the doctors ran blood work and said everything was fine........

With the clonazepam and effexor I didn't have mood swings so much, but it was because I spent 16-20 hours a day in bed. When I first started the effexor I was told that the side effects go away after your body adjusts, and as it was the fourth or fifth anti-depressant I tried I figured I would suffer through. I lost 40 pounds (as I was/am overweight it was a good side effect in some ways) in a matter of 6 weeks, lost my appetite to the point that when I realized that I needed to do something about it I had to force myself to eat 1/2 piece of toast a day, slowing eating more...........I went several weeks only able to eat an average of 500 calories a day. I was so nauseous all the time. I was pretty much having a break down. I would only be "functioning" for 2-6 hours a day.

After going to the ER because my muscles began shaking while standing or trying to climb stairs (I'm only 28), having racing heart beats which they just prescribed more medication for, absolutely no energy, my hair falling out by the handfuls, I would wake up with it on my pillow............could not concentrate for the life of me, falling behind in school work (back to school mom), unable to do papers because I couldn't think.............

They finally tested my thyroid (runs in the family, have been telling them it sounded like my thyroid from the beginning........) my levels were finally off the charts, my TSH wasn't even registering. I was diagnosed with Graves disease........which can cause the panic attacks that they put me on the medication for in the first place.

As I figured it was probably the Graves, I tried weaning off my meds, only to feel as though I was going nuts and going to die............... I cut my clonazepam and effexor dosages in half, and within 2 days I could concentrate, and within a couple weeks I could go up and down the stairs again.............

Even now it is hard to say how much of my issues were caused by the Graves and how much was due to the Effexor combined with the Clonazepam. I was able to wean of the Clonazepam within 6 weeks by cutting my dosage in quarters every two weeks, but NOT the Effexor. I tried cut it and started having panic attacks, couldn't think, major migraines, and bed ridden........so I had to reduce it even slower.

Once I got down to half a dose, all of my symptoms went away except the fatigue. That is why I associate a lot of it with Effexor and NOT the Graves, because the symptoms did not go away until I reduced the drugs. I am now finally free of Effexor for about a month, and it was a hard road. It took me six months. I still have some issues with concentration and the occasional panic attack, but they are very minimal. I have read that this could be due to either both or one of the drugs I was on as it can take a year or more for your body to adjust.

Anyhoo, I wonder if the medication didn't trigger the Graves, or what.............but I would NEVER EVER suggest this medication to anyone.

I have gained most of the weight I lost back........but that is to be expected since my metabolism probably hit rock bottom not eating anything but toast for weeks.......

Anyhoo, I really wish that Doctors would tell you what could happen before giving you a drug. At least then when you start having these symptoms you know where and why...........rather then going in, and them having no idea?!?!?!? Funny, as if you search online you see lists that match exactly what you are going through.

I am now VERY leery about taking any meds at all, including Tylenol.

I have taken Yaz for one month, and in the past week noticed my breasts got bigger by a cup size (for me that is too big!), i can't stop crying at night, i feel crazy and uncontrollable, and the cramping and bloating leading up to my first period on Yaz have been uncomfortable. this is my first experience on birth control, and i think it's for the birds. I don't even know if I'll ever try something else. Yaz has not been a gentle introduction.

ok, so I am 28yrs old just had my second lap for endo and my doctor has recommended lupron, after reading this I am soooooooooo scared to even get near this med. Its like you either take this with the hope of saving fertility and no pain..or not and have endo ravage your body and you will live with unbearable pain!!! I have no idea what to do, my post-op surgery appt is this week, and i am so scared after reading this. Is there anyone that did not have weight gain, headaches etc...anyone that can testify that lupron actually worked for them? Cause right now its my health on the line, my ability to have children, my ability to have a normal life free of endo pain or these crazy, horrible side effects...please help me!!!

Just received 2nd Lupron shot and like so many others, severe fatigue and severe dizziness - cannot drive. Lots of headaches, and pressure in my head, blurred vision and an asthmatic feeling in chest and throat. I'm wheezing and having difficulty taking deep breaths. All this to reduce the pain of endo - I'm not sure which is worse.. I figured I could deal with the hot flashes and mood swings, but this is brutal. I feel really "drugged" and out of it. I hope the pain actually improves because I still have no life.

I have been on Levoxyl for about 2 1/2 years. Before I was on levothyroxine, but my new endo said the generics don't work, so he insists on the name brand. I've been taking it in the morning on an empty stomach, and have been battling extreme daytime fatigue ever since. At first I thought it was because I was unhealthy. I had LAP-band surgery, and I use a CPAP machine for my sleep apnea, and I lost 50 lbs, but I've hit a plateau that can't be explained by my food intake, and the fatigue is so debilitating. My GP is adjusting my anti-depressant to see if that makes a difference, but so far no. On my own I decided to start taking the Levoxyl at night before I go to bed. It's only been a couple of days, but I have noticed a marked improvement. I'll talk to my endo about it, and hopefully he'll be at least willing to consider the change.

On a side note, anti-depressants are the best medicine ever discovered. If you are feeling at all depressed, talk to your doctor. Whether the Levoxyl contributes to it or not, the anti-depressants help. I never want to go back in that black hole again.

I just went in for my second shot of Lupron (out of a series of 6) for treatment of stage IV endometriosis. The most noticeable side effect I experienced was during my first menstrual cycle after my first dose of Lupron. I had never experienced menstrual pain or cramping (even though I had advanced endometriosis) until after Lupron. I have a fairly high pain tolerance and yet the cramping for the first 2 days of my period were almost debilitating. I had extremely heavy bleeding and have had spotting daily ever since (app.18 days). I have gained about 3 pounds because I have no energy at all. I'm usually active and work out 4-5 times a week but by the time I get off work, I'm too fatigued to do so (hence the weight gain I guess). I have hot flashes and night sweats all the time. The most recent side effect is high blood pressure. I have never had high blood pressure in my life (I'm a healthy 25-year-old woman) and when I went in for my 2nd Lupron shot today, they told me I all of a sudden do. I don't seem to have mood swings but do feel depressed and sometimes more anxious than normal. I have experienced a decreased interest in sex as well.

I have been on Lupron for almost four years for my endo. I have yet to get my period but have to say that while on the shot I had hot flashes, severe mood swings, and night sweats. All of the symptoms came in cycles and for the most part I felt great. I actually lost weight, and the best part, never got my period (duh). My sex drive fluctuated and I did experience vaginal dryness. I just want to get my period, it's freaking me out that I haven't gotten it over a month after I was supposed to take it last.

I've been searching for answers on LONG TERM side effects of Lupron hoping that it could give me answers as to what's going on in my body now!
23 yrs ago my fertility dr. gave me Lupron to inject MYSELF EVERY DAY (experimental back then). I had SEVERE endo since the age of 16 and was fighting that as well as trying to get pregnant thru invetro. I was 26. At 29 I had an emergency hysto. Now at 48plus I have chronic tendonitis where the tendons will shred off of the joints. I have been diagnosed with C spine and T spine disease, osteoarthritis and a mystery that I'm going to have to go to the Mayo to figure out (hopefully). I have tumors that are growing in my lower back...growing around nerves, tendons and bone, They aren't sure why they are there, why they are growing, or even what they are. Surgery removed 2 of them...but pathology shows foreign matter other than tissue/bone. All they DO know is that it is not cancer. One year ago I started losing weight (25 pds) for no reason. I'm now holding my own at 112 and hoping to figure all of this out. I can't help but wonder if Lupron or any other experimental drugs I was on has something to do with this. Is there anyone out there that used this drug so long ago??

Well, Let me offer a slightly more positive review of this drug. I have been on it for 5 months now and have one month to go. All my pain from the endo and the large cyst I had are gone, at least for now. Yes, I experienced hot flashes, night sweats, constant sweating actually, oily skin, nausea at first, and the two that are the hardest to deal with, acne and the weight gain. i think I've gained like 10 pounds, mostly in my stomach. From what I read on here it does not go back to normal after the drugs ware off as my Dr. assured me it would. Is that right? Has anyone gone back to normal weight wise after the drug? Oh, and I did have a mood swing here and here in the first 2-3 months but actually my mood is much better as the add back therapy had fake progesterone in it and I think my body was lacking that. I guess I'm happy with it as long as I can loose the weight afterward.