So What Happened?
It's been over a year since I followed up with my request, sorry so delayed, it was a hectic 2009 to say the least. I realize that isn't a good excuse to leave people hanging.
I first wanted to thank everyone who responded in such a timely manner with their heartfelt and honest experiences. You women are wonderful and I appreciate you from the bottom of my heart. I really do and I forwarded all your responses to my best friend who was touched and very grateful.
She ended up having a Laparoscopic surgery, also called minimally invasive surgery (MIS), which is a modern surgical technique in which operations in the abdomen are performed through small incisions (usually 0.5–1.5cm) as compared to larger incisions needed in traditional surgical procedures. It was a successful procedure and her pain subsided.
After much soul searching, my friend determined she would not have any more children. She came to this realization based on her own personal reasons, but the most important was that she was already blessed with 2 beautiful children. She is happy with this decision.
For those who are going through similar experiences, don't ever let one opinion set the course of your life. Take charge of your health make decisions based on juxtaposing what the experts say, and where your heart lies.
Thank you all again, may 2010 bring you health, happiness, love and laughter.
Here are all the responses we received based on my initial request (in order of first to most recent response).
RESPONSE 1
Many years ago, my gyn (top-notch doc) thought that I probably had endometriosis. She determined, though, that if I did have it, I did not have scarring on my ovaries, which can result in fertility problems. I asked about surgery, and she said that, given that my ovaries seemed fine I should hold off on possibly being scoped until I wanted to get pregnant. Apparently the issue is that you can have lots of endometriosis but no fertility issues, but you can also have a tiny bit and have fertility issues -- how extensive the endo is is not necessarily related to fertility issues. Just the mere presence seems to be enough in some people. If I had surgery a couple of years before I planned to conceive, I might have to have it redone if I were one of those people. I was already on the pill, and she switched me to a different one (don't entirely recall why). The pill can help keep endo at bay, as does pregnancy, at least during pregnancy and for a while afterwards. It took three years after having my son for even minor menstrual cramps to return. I was never scoped so I'm not sure if I have endo, but I did have all the symptoms. I'm guessing your friend's doc put her on the pill, though the potential for having problems on the pill at 40 might contraindicate it. You might want to make sure that your friend's Ob/Gyn did an *extremely* thorough exam, paying particular attention to whether her ovaries seem free to move around or if there appears to be any scarring. If she knows that she wants to conceive right away, she might want to get the book "Taking Charge of Your Fertility" so that she can chart everything, make sure she is ovulating, and time attempts appropriately. If she doesn't get pregnant in three to four months, her hubby should go in to have his sperm checked (much less complicated than her having surgery), and if everything seems okay, she might want to get scoped. If the doc thinks there is any scarring around her ovaries, she probably should get surgery right away. That's my understanding from my own journey, but please keep in mind that I have no medical training, and that my suggestions are meant to provide potential guidance but not to replace additional professional opinions. I hope everything turns out well for your friend, and you're such a good friend to look into this for her.
RESPONSE 2
I am a homeopathic practitioner. I specialize in children's and women's health. I have had good results with endometriosis so far. There is usually a reason why the endometrium tissue is produced the body. Homeopathic remedy can address the imbalance in the immune system and stop the disease.
RESPONSE 3
I usually see gradual improvement with every menstrual cycle.
I would recommend you friend first of all to remove all hormon-laden foods from her diet, such as non-organic meat and dairy, soy, etc. This will not reverse the endometriosis, but may stop the disease to progress further.
RESPONSE 4
I was 32 and had absolutely no symptoms when I was diagnosed with endometrial ovarian cysts. I had gone to urgent care for Giardia (worked at a daycare with an outbreak) and the doctor discovered grapefruit sized masses in my abdomen. I was just due for my annual exam.
RESPONSE 5
I had no pain whatsoever. I had a cancer blood test which came back positive (thankfully turned out to be false) so I was scheduled for immediate surgery. Doctor advised trying to get pregnant as soon as possible upon recovery but my husband wasn't ready.
RESPONSE 6
Unfortunately, I went through premature menopause at 37. Doctor said it was unrelated to the endo or the surgery. (Happy ending: we adopted a beautiful baby boy at birth 9 years ago.)
RESPONSE 7
Here is a website about fertility, infertility, adoption etc with a forum devoted to endo:http://www3.fertilethoughts.com/forums/forumdisplay.php?f=22
The women there can give lots of advice and experience.
RESPONSE 8
I would not jump to any conclusion, nor would I trust a doctor who jumps to one. Endometriosis can effect fertility- OR it might not. I had extensive endometriosis, and had it removed 3 times from a young age. I had 3 kids without any difficulty, right up to age 36. Having the laporoscopic surgery for it isn't too big a deal, and they can remove everything and check on health of the tubes. I had this done, and one month later became pregnant with my second child.
Most importantly, make sure she stays positive about this, and find a doctor who is to. There is so much they can do now. I would get the surgery for it right away if they think she needs it. That will give her more info and start protecting her fertility. She will also be told to go on the pill until she is ready to conceive. This is the best thing to do.
So stay positive!
RESPONSE 9
I was diagnosed with Endometriosis when I was 20 so for my 21 first birthday I had the surgery to scrape the insides. I was told that I would get pregnant within a few months (I married young). It didn't happen right away but at the age of 24 I had my first child. In the years between it came back pretty bad so I went on the pill to help ease the pain and the menstral flow, that helped alot! I was on the pill for about 10 years when we decided to have another child and about 6 months after being off the pill I got pregnant. SO there is hope for your friend. I would definitely check first to see how bad it is and then have them do the lazeroscopy (I think that is how you spell it) basically a DNC and then try. Tell her to keep her faith and it can happen! Good Luck!
RESPONSE 10
I have been trying to get pregnant for year and after 6 month of not getting pregnant my obgyn ordered ultrasound for me and discovered endometrioma (ovarian cyst filled with blood) which also results from endometriosis. My obgyn recommended laparascopic surgery to remove it. I am also seeing an accupuncturist, which helps with cramps. I am going to see another reproductive endocrinologist at Stanford to get a second opinion, but most likely I will end up having a surgery, which I am really scared of. But so far, I have not had any success getting pregnant with endometriosis.
RESPONSE 11
I see you have gotten responses both positive & negative with regard to getting pregnant with endometriosis. I have a positive story for you. I had always had heavy periods with horrifically painful cramping that was just getting worse and worse. Ultrasound showed that I had a large fibroid which was growing on the outside of my uterus. I also had polyps inside the uterus. I had surgery to remove both, and while my doctor was in there he discovered endometriosis covering my fallopian tubes and ovaries. He was able to remove the endometriosis. I hadn't planned on having children, but decided a couple of years later that I did want to. I had other fertility issues, including my age (39), but after our first try of artificial insemination I got pregnant and now have a beautiful little boy. I did use fertility drugs as well to increase ovulation. I also had a test (I can't remember what it was called) where they injected die into my cervix and used an xray to see if the dye would go through the fallopian tubes, and they were clear.
If she is interested, my obgyn was Dr. Henry Hamilton in San Mateo. He did my surgery, fertility evaluation and treatments, insemination, saw me through my pregnancy and delivered my baby (c-section). I highly recommend him if she is looking for a second opinion and lives near enough.
RESPONSE 12
I'm sure when your friend starts doing research she'll find out a lot of this but just some quick things. Some women have heavy, very painful periods with the endometriosis and then others have easy periods and never know they have endo until they go see the Dr. because they cannot get pregnant. My mother had endometriosis. She never had painful periods until the endo got really bad, then not only did she have painful periods but painful bowel movements. She had four children. Her fourth was when she was 39yrs old. At that time, they thought it best to do a hysterectomy since she was done having children. She hasn't experienced any pain since. Now for myself. I have always had very heavy, painful periods and was diagnosed with endometriosis in my twenties. My mother and I had always suspected I had endo but never did anything about it until my twenties when I could not take the pain any longer. At that time, I had a laporoscopy to laser the adhesions. FYI, this is the best time to try to conceive-- right after a laporoscopy. That was the only lap. that I had because ins. does not cover doing lap's for fertility reasons but they will for pain. So my husband and I decided (when I was in my 30's) to try for a year then do a lap if we couldn't get pregnant. We did. The endo pain has been horrible but guess what? I have three beautiful children, I have been pregnant a total of six times (I lost two) and am going to deliver my fourth child in Nov.--- I'll be 41yrs old when I deliver. It is not impossible. Your friend has hope. If her gyn is not encouraging she needs to switch to someone else who has more experience with those of us with endo. Encourage her to find a Dr. that has a lot of experience in this area.
RESPONSE 13
I too suffered from Endometriosis. Please tell your friend to hang in there. It is an extemely painful disease. I had two surgeries to attempt to clean up the endo from my system. I also was on Lupron for a while to try and bring the inflamation down. Because there was damage I had to go through IVF which was very successful and I gave birth to my beautiful twin boys. Knock on wood I have not had an problems from my endo since the pregnancy. My doctor now has me on birth control pills for 12 weeks straight and then I have my period. So far, this system has worked.
RESPONSE 14
All responses on here ends with women with endometriosis 'eventually getting pregnant.' I was also diagnosed with endometriosis and have had laparoscopic surgery, the dye test, medicines, infertility doctors, etc. Unfortunately for me, because my endometriosis was so severe, pregnancy was not possible. However, FORTUNATELY for my husband and I, adoption was. We are the PROUD parents of our son, Zachary who we adopted at birth. I am sure that your friend has hopes and dreams of pregnancy and a family of their own. If they do eventually find out that pregnancy isn't an option, remind her that adoption is! I wish your friend the best of luck. I know how difficult all the years of wanting and waiting are! We went through seven years of everything. But now that we are finally parents, the waiting was all worth it! Again, best of luck!!! :)
