Endometriosis Support Group
Endometriosis is a common medical condition where the tissue lining the uterus is found outside of the uterus, typically affecting other organs in the pelvis. The condition can lead to serious health problems, primarily pain and infertility. A major symptom of endometriosis is pain, mostly in the lower abdomen, lower back, and pelvic area.
Hello everybody,
I am new here . I have suffered with endometriosis for more than 7 years. The first few years, I spent running into the ER. I was trying to explain to doctors my intense abdominal pain, like something inside me was going to explode! All of them sent me home telling me to take a naproxen or midol. Dr's repeatedly told me at the ER that I was only having a very bad monthly. I tried telling them something is very wrong and I feel like I'm dying. Literally felt like I was dying and years they sent me home. My family Dr at the time didn't even believe me. He gave me a bunch of Naproxen. Then, to add insult to injury, my bleeding got much worse. Eventually it became so bad I can not tell when I am on my period. I also have multiple forms of Anemia. I tested positive for B-12 anemia injection type for life.
Fast forward a few years. I have a new family doctor, in a new area. I really had given up talking to drs about my problems . Really just given in to their collected opinions that there was no big problem. I suffered my "bad periods" believing what so many drs had told me.
Fast forward about another year, I have a new Dr. one day I began bleeding profusely and VERY rapidly. I feel so tired I can barely walk or function. my new daughter who is my current Dr. became scared for me. I was also losing so much weight ,I looked like I was dying. she ran some blood tests and call me back the next day demanding I check myself into the hospital! That I urgently need hospitalization! My labs were bad. Of course I followed all her advice. I was hospitalized for 4 days and it was pure hell. After tests, sending me to different specialists, she got me a gynecologist.
My first gynecologist did a diagnostic laparoscopy & a D&C. among her findings were that I had a chocolate cyst & endometriosis. after I couldn't keep appointments with her, because someone in my family was sick, she terminated my appointments & stopped seeing me.
I was put on continuous birth control too help with the bleeding. it did help it first but is becoming less effective. They called me visanne, a new drug that's expensive. I had a horrible experience on this drug and almost needed a blood transfusion I lost blood so badly in just a few days!
They sent me to another gynecologist who I felt was unhelpful and totally clueless. she refused to consider surgery , and only wanted to treat me with powerful chemical drugs.
Fast forward to most recently and I have been to see 2 more gynecologists. One gyno has suggested that I get an endometrial ablation. The other gyno just wants to put me on Lupron.
I am very confused and frightened! Please help me any advice or experience it's very deeply appreciated?
PLEASE HELP THANK YOU.
I am new here . I have suffered with endometriosis for more than 7 years. The first few years, I spent running into the ER. I was trying to explain to doctors my intense abdominal pain, like something inside me was going to explode! All of them sent me home telling me to take a naproxen or midol. Dr's repeatedly told me at the ER that I was only having a very bad monthly. I tried telling them something is very wrong and I feel like I'm dying. Literally felt like I was dying and years they sent me home. My family Dr at the time didn't even believe me. He gave me a bunch of Naproxen. Then, to add insult to injury, my bleeding got much worse. Eventually it became so bad I can not tell when I am on my period. I also have multiple forms of Anemia. I tested positive for B-12 anemia injection type for life.
Fast forward a few years. I have a new family doctor, in a new area. I really had given up talking to drs about my problems . Really just given in to their collected opinions that there was no big problem. I suffered my "bad periods" believing what so many drs had told me.
Fast forward about another year, I have a new Dr. one day I began bleeding profusely and VERY rapidly. I feel so tired I can barely walk or function. my new daughter who is my current Dr. became scared for me. I was also losing so much weight ,I looked like I was dying. she ran some blood tests and call me back the next day demanding I check myself into the hospital! That I urgently need hospitalization! My labs were bad. Of course I followed all her advice. I was hospitalized for 4 days and it was pure hell. After tests, sending me to different specialists, she got me a gynecologist.
My first gynecologist did a diagnostic laparoscopy & a D&C. among her findings were that I had a chocolate cyst & endometriosis. after I couldn't keep appointments with her, because someone in my family was sick, she terminated my appointments & stopped seeing me.
I was put on continuous birth control too help with the bleeding. it did help it first but is becoming less effective. They called me visanne, a new drug that's expensive. I had a horrible experience on this drug and almost needed a blood transfusion I lost blood so badly in just a few days!
They sent me to another gynecologist who I felt was unhelpful and totally clueless. she refused to consider surgery , and only wanted to treat me with powerful chemical drugs.
Fast forward to most recently and I have been to see 2 more gynecologists. One gyno has suggested that I get an endometrial ablation. The other gyno just wants to put me on Lupron.
I am very confused and frightened! Please help me any advice or experience it's very deeply appreciated?
PLEASE HELP THANK YOU.
Thank you so much for your response. I can't say how much your support means to me. I don't know if I can find and endometriosis specialist my area. I will take your suggestion seriously. I live in Toronto Canada. How is the lupron working for you? Have you had any side effects that you would care to share? I only ask because so many Gynecologists have been pushing this on Me. sometimes I feel like giving up. this disease has strained every relationship in my life
thank you so much for your support once again it mean so much more to me than you'll ever know.
http://www.endo-resolved.com/endometriosis_specialist.html
Your best bet is to probably checkout the facebook page Thatotherchick mentioned, and see if anyone can recommend a doctor.
~~Pup
Honestly with your history of bleeding so badly on visanne, you may want to compare and contrast whats so different in the way that Lupron works versus it. These are not your only options either. I've been though at least 12 gyns in the last 7 years desperately seeking a good doctor/surgeon. I thank God that i finally found one. Please seek out a specialist. Even though i haven't exactly heard that they are easy to come by out there in your country, please do not settle for just any regular ob/gyn. Excision surgery is kind of the gold standard in Endo treatment presently. I have had 2 excision surgeries though and am still in pain/on Lupron because i couldn't stand it anymore and am going to have back to back surgeries this October. After I've healed from surgery, I'm going to start getting massages again and going on a strict diet to try and eliminate toxins from my poor worn out body. I have to say that i have had some success with therapeutic deep tissue massage (painful but it was worth the relief) in the past and many other women swear by eastern medicine, changes in diet...etc. I've used emu oil on my tummy and found that it does help the swelling and some of the pain too. So, there are many options in trying to cope and deal with this disease whilst searching for a really good doctor.
I am hoping that this message is understandable and coherent as i'm on a lot of pain meds currently. : ( I'm so sorry that you are having such a difficult time currently and i truly hope that you're able to locate a specialist near you. Please check out Endometropolis on facebook and the link that Poisoned posted below. Keep us all posted as to how you are doing! You are definitely not alone in all of this. So many of us are right there with you and are here for you. Hugs~ Jenny
I live in Kitchener Ontario and I am curious which doctors you are going too. I have an amazing obgyn here in Kitchener and have also seen another one in London.
Your situation sounds horrible but I can't believe the response you are getting from Doctors in Toronto. http://centerforendo.com/drsinervo.htm This is one that I have heard about.
I would be happy to give you the name of my doctor. I too went on lupron but I was very young - 17 years old so it was a long time ago for me. I had side effects but it seems most people do. Best to weigh the pros and cons.
Let me know if you want some names.
ks
I had a laparotomy/surgery in March to remove a chocolate cyst and cleaned up some endo...my gyno put me on Visanne, I'm on it for 5 months now & my period has stopped completely, I have no pain and all the other symptoms related to endo anymore. The first 3 months was rough though had some pain and breakthrough bleeding and I have experienced all the side effects, nausea, weight gain, hair loss, breast tenderness, irritability, depression AND now lack of sex drive. I am due next month for a check up so hopefully I get some good news, gyno did say that I should be on Visanne for about 1yr (min.) I'm from Cape Town SA (31yrs old) so I am not familiar with any of the other drugs, this one she told me was new on the market and recommended it, it costs me a penny but I guess i have to just deal. Endo is still very much taboo over here! I hope you find a doc that can really understand you and HELP you! All the best!