Surgeries, lupron and drugs to try and get relief for endometriosis

This endometriosis story from Mandie who has had repeated surgeries and tried different drug treatments including two rounds of Lupron and her endometriosis kept coming back.  This has left her very scared and worried

Mandie’s story ……

Oh boy where do I begin... I am 26 years old and was diagnosed with endometriosis when I was 17, throughout my teenage years I had very painful periods always missing school because the cramps were so bad. I finally went to a gyn at 17 that is when the doctor decided to do a laparoscopy to see what was going on, well sure enough it was endometriosis.

He then told me that he scrapped it all out and I should be fine, so a year later I began having the same symptoms. So I went to another gyn, he put me on danazol, it helped for a while but made me soooo fat.

I was a senior in high school and to top it off I was a new student; I just couldn’t deal with it so he decided to do surgery so for the 2nd time. I went through with it thinking maybe this was it, but it wasn’t. After that he put me on the lupron which made the pain go away after 3 months


I was good for a year or so. I went to school to be a medical assistant and had the chance to work in family practice. They hired a new gyn so I started to see him when the pain was back, so he decided to put me back on the lupron.

I did that for 3 months and no relief, so he decided to do another laparoscopy. When he was in there he saw something very strange and called a surgeon in to find out what was going on. He said my bowels were abnormal, so after scraping out what he could he sent me to a gastro doctor. I went through with the whole colonoscopy it was normal.

I stayed on the lupron for a year, it seemed to help for the most part, after I was done with it I started yasmin. I took that for a year, but then the pain started again. Our office had hired another gyn who was female, I thought maybe she would be more sympathetic, so she put an IUD in hoping maybe that would work, well it worked for a while but then stopped.

I didn’t want to do the surgery again because I already had enough scar tissue from all the other surgery, so we decided that the lupron would be the best thing. I did that for another year and felt pretty good.

I left my job soon after that for another one, I was planning a wedding and it all started again, but this time my bladder was out of control, I was getting up between 2 and 6 times a night, my bowels were so out of control, I was in a lot of pain, extremely bad gas pains to where I was doubled over. I called my same gastro doctor that did my colonoscopy, he just kept telling me it was IBS (that’s what they all say). So he called me in some medication, I took that and also took activa which made it worse.

I just couldn’t take it anymore. I was getting married in 2 months and I felt like I was falling apart. I met with my gyn and we decided to do surgery, wondering is this all in my head or what, well it wasn’t, I had endometriosis. There was something else that was abnormal again so she called in the surgeon.

My appendix was in the lower abdomen so they removed it. 1 week later I followed up with the surgeon, I asked him what the operative report said. He said that he had never seen it before but it was filled with endometriosis, I was so shocked. I thought where else could it be, is that why I am having bowel and bladder problems, but still yet everyone said no.

So here I am on the lupron again after the surgery, it was that or have a baby. I wasn’t married yet and I didn’t want to be pushed into it, I just wasn’t ready, so we went with the lupron. I am in my last month of lupron, and we are ready to have a child. I spoke to my gyn to find out what we needed to do, she said just wait until you have your period. I don't know if it’s that easy, we have recently moved states, so I don't have a doctor and I am scared that it’s not going to be that easy.

I don't know where to start, I don't want to go through with the pain again, and I know if I don't get pregnant right away it will all come back. Then it will be even harder to get pregnant, and what if all the medication I have taken has made it to where I can't have children. I am scared and don’t know what to do. I haven’t found a doctor yet that understands, they just want to give me medication or do surgery, I just want answers, I am so frustrated. What do I do???? 


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