Endometriosis Member Introductions

#16

I have been diagnosed with endometriosis for two years. It began with me just having pain once a month which is “normal” for endometriosis sufferers. Last November the pain came and never went away. I have severe pain in my uterus every day. After 5 months of Lupron I am not seeing results. I hope that maybe someone out there experienced the same and have some advice. I am just now working with a doctor and a pain management center to start from the drawing board again since nothing seems to have worked thus far.

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#17

I just had a Dr’s visit and they think I might have endometriosis

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#18

I was diagnosed with endo 2 1/2 years ago and have had 5 surgeries since then. Plus 2 HSG and a 6 month round of Lupron. Nothing seems to work for me because my endo grows back so quickly!

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#19

I received the news that I have endometiosis while I was pregnant with with my second child. I had surgery when I was 5 months pregnant in order to remove the mass that was taking up space where the baby had to grow or I was going to lose her. It took over a year for me to get pregnant because of the endometriosis.

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#20

I was diagnosed with endometriosis in 2004. I underwent a laparoscopy. Following the surgery I did not notice much relief from the pain. I was then put on the Lupron injections (those are hell). Following that I have been on multiple types of birth control pills. The one that I found the best was the last one I was on. It’s called Yaz. I didn’t have any break through pain and my cramps were bearable. Not to mention my periods were only a couple days long. I recently went off the pills in order to try and get pregnant. Unofortunately the pain has returned. Does anyone have any suggestions how to deal with the pain while trying to get pregnant???

One more thing, if you are trying to decide if you want the surgery or not I would suggest getting it. I have been told by multiple sources that doing the surgery, taking Lupron, and also managing the condition with Birth Control Pills will result in less scar tissue formation. This would increase your chances of have less fertility problems and less pain.

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#21

i have endometriosis, but still have abdominal pain and doctors dont kow why

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#22

I am 29 years old and was diagnosed with endo 3 years ago. I have had 4 surgeries to keep up with the scarring. I have little to no relief from the pain most days. I would like to know natural ways to heal the pain. I would like to know how others with endo cope with their pain. Also, I would like to know how to relate my issue to others so that they understand my disease.

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#23

I’m interested in endometriosis because I deal with it daily!

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#24

I am 23 and I was diagnosed with stage one endometriosis three years ago. I research and study endo as much as I can and I wrote my undergraduate thesis on how women are surviving with this disease. I comoderate a support group and am part of many support forums online. Learning more about this disease, finding ways to raise awareness and creating support networks is what I want to do with my life… which is why I came here :slight_smile:

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#25

I was diagnosed with endo in 1998, but I believe I have had since about 83 when I first started my period. Doctors blamed the pain on me being young and “things just getting regulated”. There is no way a human can suffer the way I did and it be normal. Since then I have tried many types of pain killers (which I really didn’t want to take) and since 2005 have been on continuous bcp’s. This has been the most beneficial to me, along with yoga and strict attention to diet. I have had 4 laparoscopies over the years, and am not up for number 5 actually doctor said it’s not possible.

I would like to meet people just to talk, listen and share experiences. The best thing about these types of groups is that you realize you are not alone. This is a disease that I have learned not only takes a physical toll but an emotional one as well…better to face it as a group!

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#26

Hi, I was diagnosed with endo back in 2001. 18 months ago I finally had a hysterectomy for stage 4 endo after reaching the point of being barely able to walk. The last 18 months have been a nightmare, and now, Unfortunately, I have been disabled now for almost a year, lost my job (being paid disability), and have constant pain. I am on strong narcotics for pain, but even those don’t remove the pain. I have to use a mobility scooter if we go to the store, and i can’t drive.
I’ve recently been in contact with the CEC, and they have removed my file and scheduled me for surgery. Dr. S. was so kind on the phone, and gave me hope for the first time in such a long time. But I do feel overwhelmed by it all. I am terrified that the surgery won’t work, and I will spend the rest of my life in this pain.
Right now I am scheduled for surgery August 3rd…and it is expected to be a major surgery, not only removing my remaining ovary, but also repairing the problems that have occured in the last 12 months.

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#27

Hey!!! My name is Rachel and about seven months ago I had a diagnostic laparoscopy performed. My doctor found a lot of endometriosis, but they were away from my ovaries. such a blessing! About two weeks after the procedure I started having nausea every three days or so, which would last all day and be gone by the following day. My doctor said it really is not related to the procedure, if it is every couple of days. He said it may be a virus. So, three weeks ago I started Lupron Therapy and my nausea has become more extreme and occurs as often as every other day and sometimes every day. I don’t feel other symptoms other than being a little tired, but… Any ideas or suggestions?

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#28

I am interested in hearing/learning about endometriosis because I have endometriosis. I was diagnosed by laproscopy 18 years ago. My syptoms have been getting worse lately, the pill no longer works to control my pain and periods. My husband and I are wanting to start a family in the next year or two, and I am wondering how endometriosis will effect our chances.

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#29

Hi my name is karen and I have endometriosis and am getting ready to have surgery on july 16th. Four years ago I had a hysterectomy and my right ovary removed which had a tumor on it. Now I am having surgery again to get my left ovary removed and to clean me up on my insides. Has any one else been thru this?Please write to me.
sincerely leaf

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#30

My name is Daun, I’m a 28/F. I was formally diagnosed with endo in 2006 when I went through an infertility workup. My endo came back with a vengence following my initial surgery, and I’m now taking Lupron and HRT. I’m scheduled for a complete hysto and excision procedure in December.

I look forward to meeting everyone.

~ Daun

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#31

Hello- I am new to this site and I hope that this is what I have been looking for. I am 30 years old married with a wonderful 2 year old little girl. I have been technically diagnosed with endo after the birth of my daughter. I have been through well let’s see maybe 5 or 6 laps. to help and diagnose the endo. I will be having another next week. My doctor is in fear it has spread to my intestines and maybe bladder. I am in pain every day. Usually all the time. I am trying to have another baby before everything is just removed. I also have PCOS which makes it even harder to get pregnant. I am really hoping to meet others like me and that can offer support and advise and hopefully I can do the same. Thank you.

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#32

Hello My name is Sara. I am 27 and was diagnosed with Endo Nov of 2007. I have been married for 8 years and i have 4 wonderful kids. It looks that no treatments are working so i am in for a hysto soon.

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#33

Hello My name is Stacy i am 28 and I just found out i have endometriosis on friday when they did the laposcopic surgery on me. My doctor tells me that i will have to have a full historectomy soon but until that happens he is giving me a shot tomorrow that will put me into menopause for 3 months. All i know is the back pain with this has been very bad. Sorry for the spelling.

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#34

Hi Stacy-I have been suffering many years with endometreosis. I had another laporoscopy last month and the endo has spread significantly and is into my bowels. I am having a full hysterectomy next Tuesday. I can’t wait-I have been wanting to do it for over ten years! I sympathize with your pain-the back pain is unbelievable and for several years now I have had pelvic pain daily and for the past year I have been vomiting with my periods. I am 44 so you are quite a bit younger than I, but don’t let them drag it out too long. If they had taken care of the endo years ago it woudn’t have progressed like it did, making for many years of suffering for me!

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pinned #36
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