Endometriosis - Lincoln,NE

A good friend had this terrible disease - very, very painful periods, doubled over in pain, painful bowel movements, too. She really had to be very insistent with doctors to get a diagnosis, they treated her as if she were a crybaby for years - or just treated the symptoms with pain meds. You don't say how old you are but she ended up having a hysterectomy in her late 20's after she went untreated for years and it had caused multiple adhesions to other organs. I have another friend that was able to conceive twice, though, and that helped the condition. Go to an ob/gyn and insist that ultrasound studies be done.

You can't 'feel' endo like that. You can't even diagnosis with 100% accuracy without surgery, (so if a doctor tells you, you have it by just doing an exam they are coo coo for coo coo puffs-get a second opinion).

I've had endo since I was 19-now 38. Had 5 laproscopic surgeries, lost one ovary, been on menopause inducing drugs, (lupron), lots of pain meds, stayed on the pill to slow my estrogen, etc.

Sex can be very painful, periods can be painful, bowel movements painful--and then some women have zero symptoms.

I doensn't cause cancer, but their is an endometrial cancer or uterine cancer.

Bottom line-I would talk to your doctor...maybe what you have is something that can be viewed on ultrasound or with an exam. Or maybe it's nothing and just a weird period related feeling.

I have several friends who have suffered with this disease. I know for them it made their periods very painful and they have had trouble conceiving. But, once they did conceive, the pain diminished greatly. I know of a supplement that has helped women greatly with this. Let me know if you'd like more info about it.

My mom had endometriosis. She had extremely heavy periods - extremely heavy. They told her she would never be able to have kids, but she went on to have 2 healthy pregnancies. She did end up getting a hysterectomy in her early 30's.

Good luck.

It just depends on the person. I had a very bad case of it, and really no symptoms other than painful bowel movements during my period. And I didn't connect that with endometriosis until way into my 40s.

I had laser surgery to remove most of it. I don't believe it puts you at a higher risk for cancer. It can cause infertility. It caused secondary infertility in me, because it was in my fallopian tubes. That can't be lasered out.

Hi Busymom74,

First of all, I highly recommend the Endometriosis Association's web site and their comprehensive book on the subject. There is so much about endo, it is hard to just summarize here.

Most people experience heavy periods and heavy cramping with their periods when they have endo. I was an exception, although I had severe endo, I only rarely had painful periods. Well, I had to be hospitalized due to pain once and that is how my diagnosis story began: They saw some cysts in ovaries but endo can be diagnosed for sure only by laparoscopy/surgery. I ended up having one of each. I was treated with a medicine to stop my periods for 6 months after the surgery and used BCPs. Surgery helped to get rid of endo, but turns out it caused scar tissues when healing, so I had to undergo another laparoscopy before being able to get pregnant.

Endometriosis means you have the tissue lining the uterus somewhere other than the uterus (in my case ovaries). With each period due to hormones, the tissue bleeds and causes pain and may form cysts. Pregnancy, stopping the periods, BCPs etc all aim to keep the hormones at bay so the tissue does not grow/bleed.

Endo also may cause infertility and many people are diagnosed when they are not able to get pregnant.

There is actually a statistical finding that the chances of having cancer down there is *slightly* higher in women with endo, but of course it doesn't mean endo causes cancer.

Once again, I highly recommend:
http://www.endometriosisassn.org/

and their books on the subject.

Make sure you find a good doctor who knows about endometrisosis and with whom you can communicate. That is the key!

I've got it too, not a severe case, but I am definitely aware of it.

All the symptoms previously mentioned, for me, pain was always localized to one side, like one ovary had a bigger problem than the other. I knew in my gut that's what was wrong. I have always had heavy periods and severe cramping, often had to stay home from school when it was my time. In 2004, I started having intense pains and trouble, kept getting dismissed by my ob and sent to specialists for all kinds of other things. Finally in 2007, I started seeing a great ob when we had moved out of state and she agreed that I had the telltale signs. We discussed it in length and determined the best thing to do what laparoscopy. She removed a good amount of scar tissue on my left side, the one that had always hurt and the diagnosis is what prompted me to stop putting off having a baby.

Pregnancy and nursing have kept it at bay and I too continue to nurse, partly because I know it will help. Birth control has always helped with my symptoms to a degree, but not eliminated them. My ob told me that the best thing you can do for it is be pregnant, nurse as long as possible and then get pregnant and do the same thing again. Great if you want a lot of kids I guess!

My best friend has a very severe case and has gone through tremendous pain, multiple DandCs, losing a baby at 7 months...just heartbreaking stuff. Now, at 35, she's having back problems related to it.

If you suspect or you are diagnosed, I highly recommend staying on top of it. It does tend to worsen with age according to my ob. I don't know of any link to cancer, but can cause abnormal paps.

pelvic pain. it can be worse with sex. it can be worse with periods. if it has caused adhesions (sticking body parts to eachother that shouldn't be stuck together) the pain can be constant or vary with different movements. it can cause very heavy periods or simply irregular periods. if you have unusual pain that gets worse with each period, definitely consider endometriosis a possibility. there are different medical views on the proper treatment so i suggest you talk to a variety of gynecologists. don't just trust one doctor's opinion because this is something that must be confirmed with surgery so there is some guessing if you're just going by symptoms. endometriosis feeds off estrogen so many times it will go into remission during and after pregnancy. many times doctors prescribe birth control in hopes that the hormones will balance things out and therefore control the endometriosis. but that doesn't always work. i found lots of great information and support through the endometriosis association. http://www.endometriosisassn.org/
please feel free to email me with any questions. i became aware of my endometriosis in 2007 after i weaned my second baby and my first period afterward was surprisingly painful. within a few months the endometriosis adhered my uterus to my bladder and rectum and i was in constant pain. i pretty much laid on the couch most of the day as the prescription pain meds got less and less effective. i found a doctor who shared my views on endo and used excision in surgery, not just laser. i had a laparoscopy to remove the adhesions and some of the endo, but not the endo on my uterus because i wasn't sure i was finished having babies. a year later i had baby #3. i breastfed her as long as possible to keep the endo at bay. it has been less than 2 months since i weaned her and i'm feeling good. but i hold my breath for the pain to come back. it's a miserable disease, but not one without hope. God bless.