Endometriosis stolen my life made worse by Lupron

by Annonymouse

I suspect I have had endometriosis since I was 13. However it took 12 years to get an actual diagnosis. I have seen every ob/gyn in my local area. All have attempted to minimize and down play my misery, like they don't believe it is possible to have all the symptoms I suffer from.

Finally my family doctor witnessed my sudden dizziness, profuse sweating, vomiting, and passing out from the pain. He then called in a personal favor from an ob/gyn friend of his, who did my first surgery and diagnosed me.

During my surgery the ob/gyn chose not to remove any of the endometriomas, due to the locations and severity, he said the risk of bleeding out were too high. He came in to tell me this news with his head hung low. After 40 years of practicing he said I had the worst case of endometriosis he had ever seen.

He put me on my first round of lupron, which wasn't too bad, some mild bone/joint pain, I lost a lot of my hair and lost a lot of weight. When he went back in he said I would be lucky to have 6 months to a year before the pain returned. I had 9 months of no periods, no pain and he tried to run the dye through my tubes but couldn't get a seal supposedly.

When I got my surgery report he had written, like I was miraculously cured which was totally opposite to what he told me after I came out of recovery. So needless to say I couldn't get any help from him when the pain came back.

So I went back to my original ob/gyn who had suspected I had endometriosis, and had scheduled my first lap 9 years ago, but all of that changed when I lost my insurance, and all of a sudden I had IBS.

I thought now that I had pictures of it and proof I had endometriosis maybe she would help. She wanted me to stay on lupron for 2 years with add back therapy, rotating it every three months and if it didn't help she promised me a hysterectomy.

I took the another Lupron shot and immediately had a horrible reaction. Within 12 hours of receiving the shot I had swollen so much all over I no longer had ankles or a neck. I ended up in the ER where they recommended a hysterectomy because there wasn't anything they could do to stop the Lupron.

I returned to the ob/gyn the next day where she laughed saying "honey you no longer have endometriosis, I gave you lupron, and it doesn't cause abdominal pain or painful intercourse anyway. Have you ever been severely sexually abused?"

So needless to say I left furious and in tears and pretty much hopeless. It's been almost 2 years since my last Lupron injection and I have facial hair on my upper lip and chin, course and black like a man. I have excessive course black hair between and on my breasts. I have 60 lbs of weight that no matter what I do I can't get rid of and I still have horrible hot flashes.

My body isn't my body anymore, I now have this excess of belly fat in my midsection like a beer belly. I am a healthy person, I take care of myself, I eat right, and I was active in exercise never missing a day at the gym. But any type of abdominal exercise causes me to cramp.

So here I am today, 28, luckily my family doctor gives me a prescription for Dilaudid 4mg, I am allowed 10 a month, along with a prescription for Phenergan 25mg 60 a month. With the pain pill I break it into tiny pieces and take it until the pain is tolerable. As for the phenergan, I have to take it pretty much around the clock. Even if I take a whole pill of the Dilaudid the pain doesn't stop it just gets tolerable.

I don't like the idea of being on such a potent drug and it doesn't even kill the pain. I only take as much as needed because I fear dependency. But I have been on them for a few years now and luckily that hasn't happened. But I've been robbed because I have them in my home.

Mid month when I ovulate I can tell which ovary I am ovulating from because for days I cramp worse than most 'normal' women do on their periods. During my menses I usually miss at least 3 days of work and school, I'm pre-med.

This has caused me to lose many jobs, my grades have suffered because my university drops a letter grade for every 4 unexcused days missed. So my dreams of being a doctor are shot. I can't maintain a decent GPA when even if I have an A grade I end up with c's and d's due to excessive absenteeism.

I currently have a good paying job in a factory that I have had since November. Today is March 24, and I have already used up 5 points, one more I lose my rights to bid on better paying jobs, 4 more and I lose my job.

As for my symptoms I pretty much cramp year round. It's just a typical cramping in my abdomen. When I ovulate it gets worse. If I exercise it gets worse. I don't have sex and haven't in almost a year because during it feels like I am being stabbed. This has had devastating effects on my relationship.

During my period, the pain radiates through my legs, my knees and my Achilles tendons hurt so bad I sometimes feel like if I smashed both my knees and ankles with a sledge hammer it would be a relief.

I have pain in my back, from the tailbone to my neck, and migraines. I have what I call 'fits' where all of a sudden I get hot, dizzy and nauseous, which usually leads to vomiting and sometimes I just pass out the pain gets so intense.

I lie in bed writhing, crying, and sometimes I just have to scream. The pain ranges from aching, cramping, to sharp radiating pain that goes right through me like a sword has been shoved inside of me and it takes my breath and stops me dead in my tracks and sometimes I just have to go to my knees.

Usually the pain burns too, using the bathroom either way hurts. I have bouts even when I am not on my menses where I feel like I constantly have to pee but I don't and it hurts to pee. It's never an infection either. The only thing that seems to help is heat and I take a million hot baths and I live with my heating pad on or one of those stick on kind if I have to go anywhere. But that is a catch 22 because once I get hot the 'fits' come on.

I am miserable. Period. 365 days a year I am in pain - just the level of pain fluctuates. Every time I see a new doctor it's the same thing - let's try birth control pills. Well that would be great except almost all of them make me violently sick and the few that don't aren't strong enough according to the doctors to help.

I have no quality of life. I have no normal life. Slowly this disease has taken away all the things I love in my life, and honestly at this point I do not want to live anymore if this is what my life is going to be like because this isn't a life.

Medicine has failed me on every level. I want to see a specialist but I don't have insurance. I am already in so much medical debt I will never get out of it. This disease has robbed me of everything. My self esteem, my pride, my happiness, my success.

Lupron has added to my misery because the side effects are long lasting. I hate my body, I hate my life. I hate being a woman. Because I don't feel like a woman at all. And since the last surgery and the inability to get the dye to go through my tubes I assume my tubes are blocked and so I'll probably never be able to conceive. So it makes me feel like less of a woman, and not being able to be intimate even less of a woman.

I am not an uneducated patient who doesn't know the risks of a hysterectomy. I have spoken with a cryobank about storing my oocytes in the event that I can find a doctor who will give me a hysterectomy. If I choose not to go that route I could adopt. I have done my homework and I know the risks, and the options. I am desperate.


Name: Anonymous

Title: Endometriosis on the bladder

I am so sorry for your pain. I had endometriosis at 25 growing on my bladder and then attached to my small intestine. I also went through many jobs, stayed in school, don't know how I did it, but finally had to drop out.

I moved to a place where I could get health insurance and researched until I found a doctor to help. Please try the endometriosis center in California, don't give up. I was suicidal over my pain. Nobody can understand pain that is not visible.

Please be diligent and just keep going, I went through 15 doctors. Cried many many nights and went through it all alone. I still have pain due to a bladder disease I developed as a result of the endometriosis growing on my bladder. I can't tell you the pain I've endured. My heart and prayers go out to you.

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Feb 11, 2017
Thanks; Never Give Up!
by: Anonymous

So sorry regarding your pain, both physical and emotional. There is a lot of power and comfort in prayer and positive thinking, although difficult when hurting on so many levels. But you never know which day will be The Turning Point.
I can relate to at least some of this, having endo and adenomyosis. The op took 3 times longer than planned to deal with multiple issues and yes, it's back.

I never imagined I would or could live with such pain, never mind the other symptoms and side effects. But I take it day by day and some days are better than others. The latest measure (of multiple) is advice to start Lupron. My gut says this is not for me. There is much negative feedback on it, including but not limited to your story. Thank you so much for sharing and best of luck.

Apr 22, 2016
Endo as well
by: Anonymous

I've also have been suffering from endo for years without me even knowing it..got diagnosed last year and had 2 laparoscopy surgeries, the second one took out my ovary and tubes. I'm on lupron which doesn't work so next month I'm gonna ask about a hysterectomy. I don't know what else is going to work. I hope everyone can figure out a way to manage it.

Mar 27, 2016
by: Anonymous

Please have hope and get excision surgery from a specialist like Dr. Nezhat (mine). I too suffered horribly. Lupron did little and OCPs made me much worse. Excruciating constant pain left me totally disabled. Inside I was literally liquefying from lack of blood supply to tissues due to scar.

Prior ablation surgery by non-specialist may have only hurt me. Most gyn I met did not know enough about endometriosis. Hysterectomy and surgery was not easy but one year later improving still. It has been critical to have myofascial release massage therapy and pelvic physical therapy during recovery.

Nov 20, 2015
by: Anonymous

Hi ladies.
I have severe endometriosis and I have had one surgery and meet with an endometriosis specialist on Thursday next week.

I am in so much pain and tired all the time I am so scared and I have no idea what is best to do. Do you ladies on lupron feel like you have gained weight?? ( biggest fear) I have a 3 year old. I really would love some comments so I know what to expect
Thanks :-)

Jun 09, 2015
by: Anonymous

I'm so glad to see I'm not the only one suffering from this pain. I was put on Lupron about 3 months ago for mild endometriosis. I noticed after my recent third injection that I started suffering from every side effect imaginable.

I feel sick every single day. I have a 7 year old daughter that I can barely care for some time and I just don't feel like myself any more. I want to have another child one day. I'm only 28 years old. I hope that it gets better soon because I don't think I can deal with this much longer, the side effects are almost worse than the endometriosis pain itself.

I have headache, nausea, vomiting, stomach aches, almost everyday horrible hot flashes, anxiety, nightmares at night, it's crazy. I'm hoping for some relief from my family doctor because my gynecologist has done absolutely nothing to help me.

May 25, 2014
Endometriosis stolen my life: lupron is not the answer
by: Anonymous

I was 24 when I was first diagnosed with Endometriosis and my life hasn't been the same. Prayer is the only thing that helped me. Well, about 6 months ago, the endo came back. Not saying that it left, but the pain was manageable.

My doctor prescribed me Lupron and told me I could take it for six months. I end up taking only 2 shots because it was ruining my life. I had crazy mood swings, by body ached with joint pain, I didn't want to have sex with my husband, I was mean, depressed and the hot flashes was unbearable. It's true no one believes that your life is so miserable with this unexplainable disease.

I encourage anyone to GET OFF THE LUPRON. It's not worth it. I am now 30. I have an appointment next month to figure out the next step. With the lupron taken in February of this year, my menstrual has just started back after 3 months and it's worse than ever. The only thing I gained was memory lost, painful joints and more problems. However, prayer is still the only thing keeping me. Best of luck.

Mar 12, 2014
Same issues with endometriosis
by: Anonymous

This sounds exactly like my endometriosis but I'm 17. I've had two surgeries so far and am on lupron, birth control, and pain meds. But the pain just gets worse.

Feb 13, 2014
Endo Sufferer
by: Anonymous

I know exactly how you feel. I had my first laparoscopy done and my dr told me I was a level 4 endometriosis sufferer. I was almost relieved because now I had some justification to my husband and everyone else who thought I was faking it.

I am in pain everyday and my husband still thinks I'm over reacting. I have become dependant on the pain killers and who could blame me. I mean I have to live with this pain everyday all day.

I just started lupron and almost ready to get my second dose. It's been an emotional roller coaster for me, the depression and thoughts of suicide are terrible.

Its so hard to live with this disease when no-one around you has any idea what your feeling. So many women just go about there day and don't say anything because who would believe it? You can't see the physical pain so it doesn't exist right?

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