Endometriosis Diagnosis -- Anyone else have experience with this?

Jilian - posted on 08/11/2009 ( 6 moms have responded )

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Hi Everyone,



I just had surgery to remove an ovarian cyst today and my doctor discovered I have severe endometriosis. I was given a 20% chance of being able to get pregnant again on my own...likely I will need IVF to have another. I am already the blessed mother of an almost 3 year old daughter and although I'm not sure how long I've had endometriosis I know I'm able to get pregnant because I conceived the first month of trying with both my daughter and the baby I lost in March 2008.



With this diagnosis I am feeling so very discouraged; my husband and I are open to adoption but I truly truly want at least one more of my own biological children.

I have an aunt who was diagnosed with very severe endometriosis and had surgery for it when she was 18; she was able to concieve 5 children and gave birth to 4. She didn't have much problems conceiving either. I would like to hope that this could be my case but considering that my husband and I have been trying for over 15 months I'm unsure.



I would love to hear back from anyone who has severe endometriosis and has been able to successfully conceive and birth a baby. What were your experiences in trying to get pregnant, when were you diagnosed and how long did it take to get pregnant?



Again, thank you so much for the feedback and support.

6 Comments

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Laurie - posted on 01/26/2013

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Dear Jillian,
I had an ectopic pregnancy for my third. The doctor didn't catch it and my left fallopian tube ruptured. I hemorrhaged for two weeks before we found another doctor that diagnosed my problem and did emergency surgery. The scarring of the right fallopian tube was severe because of the long term bleeding and as a result I developed severe endometriosis. I endured about five years of excruciating pain and three or four surgeries to deal with the adhesions and scar tissue that resulted. Since the diagnosis I have conceived 17 times over a time span of 22 years. I have had many miscarriages in the midst of those pregnancies, but have been blessed with 8 amazingly wonderful children. I had been told by the doctor that diagnosed the endometriosis that I would never conceive again. God has a wonderful way of proving doctors wrong at times!

Lynnsie - posted on 01/19/2013

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Good evening, I hope this message finds you well.
At 21, I statistically became pregnant. After delivering my now 5 year old son it was suggested that I add birth control to my methods of contraception. I agreed. The implant broke in my arm after about 3 weeks to a month. My doctor then administered estrogen to level out my hormones. I found no relief. I continued to have severe pain that was not manageable by narcotics(I have a very strong pain tolerance) and very irregular periods. One of the doctors I ended up seeing in my journey diagnosed me with poly cystic ovarian syndrome which the "cure-all" at the time was to take the depo shot. The depo shot did not help and further irregulated my periods. After fighting with doctors for 2 years a doctor suggested a diagnostic test to determine if I might have Endometriosis(I am only 23 at this time). I agreed to undergo the procedure and it was diagnosed that I did in fact have Endometriosis and that the progression was stage 3 of 4. The doctor found upwards of 20 cysts and ten or more endometrial implants. The disease had attacked my uterus and both ovaries. When I asked "what does this mean?" my doctor informed me that stage 4 was cancerous and we would need to act now to counteract the effects of the disease. My doctor and I tried many of the birth control methods(depo shot, patch, pill, and even a shot that induced menopause.) Since the menopause shot was the only thing that granted any form of relief we opted for surgery. I had my right ovary removed in hopes that the decreased hormones would make the pain more tolerable and ultimately allow me to have more children.After having my ovary removed my periods returned to normal...about 10 days of cramps and pms symptoms, 3 days of menstruating...Surgery was a last resort but for me it worked. I am now 26. I am expecting my 2nd child any day now. I am dialated to 4cm with 50% effacement and am being induced in 3 days as I am well overdue. My daughter(in-uterro) is measuring small but has remained healthy throughout the progression of pregnancy. The odds are just that...statistics of results recorded. Stay healthy and note your temperature(it will be slightly higher during ovulation) and procreate as you see fit...when your body is ready...it will happen.

Jilian - posted on 08/14/2009

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Shannon,



Thank you so much for your helpful response. I too live in Arizona. Would you mind telling me what type of fertility treatment you used to get pregnant with your children? I've been referred to a fertility specialist that I will go see next month but I'd love to know who you saw as I am so new to this and really don't know anyone who has been through this that could give me any kind of feedback about the doctors here.



Again, thank you so much for your feedback, I love hearing all of the positive and hopeful outcomes!

Shannon - posted on 08/12/2009

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Hi jilian
I was diagnosed with severe endo in 2007 that the doctors were unable to remove due to it being in other organs and to much reconstruction. My Doctor told me I was not likely to ever conceive on my own and even with fertility I would have a very difficult time. After 3 months of fertility I was blessed with twin boys that are now 2 years and 4 months old. Fertility was definitly an emotional roller coaster but so worth it. It increases your chances of multiple by alot but after having twins I would do it again in a heart beat. I know it is so frustrating and I totally know how you feel. All you want is another baby and its frustrating being this young and not being able to do it. I myself want another child but am worried to go through the process again becuase Im not sure I will be so lucky again. I do know though that when I decide its time I will need to go through fertility again. Im not sure where your at but I have a great Fertility doctor here in AZ. I wish you the best of luck and keep your head up, it will happen when you least expect it to.
Shannon

Nichole - posted on 08/11/2009

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I was diagnosed when my youngest was about 2. She is 6 now. I have been able to get pregnant however I have lost all 5 pregnancies. I also have poly-cystic ovaries. And what I have noticed the most with these problems is the extreme pain I have during my menstral cycle and the excessive bleeding. If I were you though I would keep trying. Not every case is the same just as not every pregnancy is the same. My mother was diagnosed with it after her 2nd and still had 2 more kids. After her 4th decided to get her tubes tied. This seems to run in our family because my grandmother (mother of 4) and my aunt (mother of 2) both were diagnosed young. I would suggest not trying so hard to become pregnant. The less pressure you put yourself under the more likely you should be to get pregnant. Just relax and take what comes. Talk to your doctor and see if there is anything you could do at home to increase your chances. I know of several women (myself included) who were put on a med called metformin (commonly used for treatment of diabetes). This drug has had great success not only helping women who have a hard time getting pregnant do just that but also it keeps you from having ovarian cysts. Which obviously helps with pain, bleeding and regulates your cycle. Just an idea. Hope all works out for you. Dont give up hope.

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