is there anyone with endometriosis that can give me advice?

Question

I was talking to my doctor recently about how I feel before and during my period. My doctor told me that I "might" have endometriosis, but didn't really go into detail about what tests they can do to know for sure. She just seemed kind of like...we'll do something about it when you are concerned about it. It was strange. Anyway, I did some research on it, and I read that you have to have a minor surgery to diagnose it. Is this true? These are my symptoms...My periods are downright HORRIBLE! Before my period I get horrible cramps. They are extremely painful. Its often the worst pain I have ever had in my life, and nothing relieves them. My back also aches very bad, and it hurts to go to the bathroom. Not extremely bad, but its noticable. I am 25 and this has been going on since I was in my mid-teens. I have also had issues with getting pregnant, but have had no specific tests done yet. Does anyone have this that can give me insight? thanks!

Answer 1

Oh gosh yes can I ever relate. I started my periods when I was 9 years old. My periods were very heavy and lasted 7 days. I had to wear hospital pads at night or I would get blood all over everything. As I got older it got worse. I missed days at school and work because of the pain. I had horrible pain, cramping, backaches, and my thighs ached all down the front. I had heavy clotting as well. It sounds to me like you do have endometriosis. I had it and then got fibroid tumors which prevented me from carrying a baby. I would get pregnant then lose the baby because if the placenta attaches over a tumor, the baby doesn't get the nourishment that it needs to develop properly. The baby can't survive and you have a spontaneous abortion. It's the same thing with endometriosis. You will have fertility problems. I did adopt a 1 day old baby through private adoption. She now 25.



Endometriosis is the result of the lining of the uterus growing outside the uterus in the abdomen. It can cause the lining to bind to all the organs and can also cause scar tissue. The only way to absolutely diagnose endometriosis is to do a laparoscopy examine. The OB-GYN doctor makes a small incision into your belly button and uses a scope to look inside your abdomen at the uterus and the surrounding tissues.



I had to eventually have a hysterectomy when I was 40 after my last son was born. They found my ovaries to be pre-cancerous so they took everything. I was never so happy in my life. That ended the pain and all the problems associated with it. I just wish they would have done it sooner. I did manage to get pregnant and finally carry my son to full term although I had many problems with the pregnancy, he was born healthy. After his birth is when they did the hysterectomy, partial at first, then complete 6 months later. It was worth it.



Have the procedure done, it's nothing. It's just in and out, no pain. Don't hesitate. Maybe they have treatments now that they didn't have 25 years ago.



Hope this helps. Take care and good luck.

Answer 2

I was just recently diagnosed with endo. I'm 24. My dr. gave me the option of having surgery or taking shots that will force my body into menopause, scary right? I took the shot route because i just recently had surgery done because i have a bladder disease, which ususally when you have this bladder disease you end up w/ endo. the endo pain is the WORST pain i have ever had in my life! Everything you are saying you feel i feel too. your dr may put you on a continuous birth control pill also. i have been on that for my bladder, which is why its not an option for me because it didn't work. My dr. did explain to me that i would have a very hard time getting pregnant, but you have to remember that i have a bladder issue too. you should really speak to your dr. there's a lot of options for you. if you are looking to have a baby now make sure you bring it up as well. you might need to remove the endo tissue first though. Good luck and feel free to ask me any questions. I start the shots in 2 weeks. The best thing i can recommend for pain is script motrin and aleve. i take a motrin at breakfast and dinner and then 2 aleves at lunch and 2 before bed. no dr will give you narcotic pain meds because its "chronic pain". Take care. Again, ask me anything. Also I bought a few books on it and it helped a lot.

-Jenn

Answer 3

Yes, a lap is needed for a true endo diagnosis. You need to try and find an endo expert as most obgyns do not know how to treat it properly. Endo is highly misunderstood by most so seeing an actual expert is needed for the best possible treatment. Basically, endo is when the tissue that normally only lines the uterus grows in other areas of the body. This tissue, both in the uterus and when it grows outside of the uterus as endometriosis, responds to hormones that cause it to bleed and shed-hence your period. The tissue inside the uterus is disspelled outside the body but the tissue that has grown to other areas does not have a way to exit the body so it creates scar tissue and irritates and inflammes the surrounding area and organs. Common places for it to grow include the ovaries, pelvic sidewall, bladder, bowels, cul de sac, uterosacral ligaments but more rare it can grow to other areas such as the appendix and lungs, to name a few. The best course of treatment is to have a lap with an endo expert where they will excise all of the endo. Most dr.'s miss some of it, burn it off or both which is not the best way to treat it. A lot of dr.'s will try and prescribe bc pills so for some women decrease their amount of pain. Some dr.'s try to prescribe a drug called depot lupron-which is a drug that should not be taken lightly, or in my opinion, at all. There is no cure for endo although pregnancy and breastfeeding often will decrease symptoms for the time being. The closest thing to a cure is to have every bit of it excised by a endo expert. Hope this helps.

Answer 4

I started noticing health problems last November. I went from ER visits, to my doctor, to many different specialists. I was in soooo much pain!!! They kept diagnosing me differently and sending me to yet another Dr. They said I had a UTI, Kidney Stones, Overactive Bladder, and so on....Finally when one of the Dr's mentioned Endo as a possibility I looked into it further. I found out that my mother was told she had it when she was in her early 20's. It is very common for Endo to run in families. I begged and pleaded for the Dr's to keep doing more tests on me to find out what was wrong. I have had previous miscarriages and irregular, painful periods. In February they finally decided to find out for sure if it was endo. You'll have to go through a minor surgery called a laparoscopy where you go to sleep under general anesthesia and the Dr's will go through your stomach in 2 small openings to look around and confirm whether or not you have endometriosis. After a couple days of taking it easy everything will go back to normal (I won't lie your stomach will hurt quite a bit at first when you move). Im ny case I was told I had Stage 4 endo, 2 very swollen ovaries and chocolate cysts. In most cases you will feel better for a year or more. Unfortunately I had it so bad that my pain severely progressed after the surgery. I wish that when I had my last miscarraige a couple years ago that I would have pressed the issue more to find out why it kept happening to me. My Dr. at the time just told me to wait and see if it happens again, then she would look into further testing. 5 weeks after the laparoscopy I ended up having a Total Hysterectomy on March 28, 2007 at the ripe old age of 26. I won't even get into the difficult menopausal symptoms I've been fighting ever since. For your own sake PLEASE get the surgery done to see if you do in fact have Endometriosis. You don't want to wait until it it is too late like I did. Your symptoms sound like you may have it and there are options for you if it's caught now. I will support you all the way!

Answer 5

Yes, Laproscopy is really the only definite way to diagnosis , but if you go to an endo secialist that really knows what they are doing . They can sometimes feel the endo implants they can feel like bumps . Also if they read their own ultrasounds they are so familiar with how it lokks they usually can i.d. it . I don't know where you live , but in NYC there is a doctor named Dr.Kanayama he is my doctor and people fl in from all over the world to see him . He is incredible . I am pain free thanks to him and God !! He is an Endometriosis specialist and a infertility speacialist too .

His website is :

www.gynecosurgery.com



To make an appointment for

a consultation

please call us at

888-4-ENDO-DR

(888-436-3637)



New York City

150 East 55th Street, 5th Floor

New York, NY 10022



Telephone: [phone]

Facsimile: 212.421.1019



Email: [e-mail]

Answer 6

The symptoms that you are experiencing seem to be from endo, but the only way to correctly diagnose this disease is through a lap surgical procedure. The very best advise that I can give, with the knowledge that I have gained, is to seek out a Reproductive Endocrinology Infertility Specialist (MOST are Endo Specialist, but not all) and changes in your diet may be necessary. If you need help in locating an Endo doc, just write to me. I would like you to visit our personal web site to learn about my daughter and myself and a positive treatment. www.KARE2004.com I have a contact page there as well as a support group that you are welcomed to join. My thoughts are with you, dear.

God Bless,

Sheila

Executive Coordinator

The Endo-KARE Centre

Answer 7

Laparoscopic Surgery is Gold standard for the treatment of endometrial ovarian cyst and endometriosis. It has minimum pain faster recovery and early return to work. You can see the complete video o this surgery on youtube or World Laparoscopy Hospital.

Answer 8

I have Arthritis and ten years ago it was suggested by a Rheumatologist that I try taking Evening Primrose Oil. Yes snake oil or so I thought but I was at my wits end. I started the snake oil and much to my and my family, friends life improved. I was at College with a young female who had endometriosis, married trying for a baby and no luck. When I started reading up on this snake oil, I noted it was good for endometriosis so told her. 24 months later she had a baby and is now on her fourth child. I told her it was nothing to to with me. You might want to try this evening primrose oil but you will need to take it every day for at least six months, before you will notice any improvement, IF it works.

Answer 9

You really need to read "Endometriosis Bible & Violet Protocol" by Zoe Brown (also available in electronic format here: http://www.endometriosisbible.info ). It's about how to eradicate endometriosis disease forever. It worked for me, you will see results in only a matter of weeks. Good Luck!

Answer 10

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Answer 11

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Answer 12

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Answer 13

I've had endo for 25 yrs, and have gone thru every route of treatment. I also have three healthy boys/young men.



1. For success, it is IMPERATIVE that you find an Endo specialist. Do not, do not, do not go to a "regular" Ob/Gyn. Only an Endo Specialist has the skill to excise the endo properly. Ask your insurance for an Endo Specialist in-network, or check out the scoop here:

http://health.groups.yahoo.com/group/EndoDocs



2. Yes, currently the only way Endo is diagnosed is via laparoscopy. Its not a tough surgery, but it ought not be taken so lightly either (like someone mentioned) because really, it is surgery. An Endo expert would perform it correctly (as opposed to regular Ob/Gyns who often spread the disease with their tools).



3. Current Treatments for Endo:

(a). Pain killers. They usually start with Anaprox and if pain & duration increases go up to Vicodin, Percocet, etc. They up the dosage when the intensity and length of pain increases. Prep yourself...ready?...its not uncommon for women with advanced (stage IV) endo to be in pain 25+ days a month. Breathe. Doesn't mean it will happen to you. If you STILL have endo pain after many, many years and surgeries, go to a Pain Management Center where metered doses of morphine are given under supervision. You would have to have a pretty severe case for this.



(b). Birth Control Pills. At first they were used to lighten periods. More commonly now, low-dose continuous birth control pills are prescribed to completely prevent menstration. Used in conjunction with a Lap, this is a great way to ward off infertility: Just think, the endo sites are cut back during the lap, and then the pills keep you from cycling and forming any more sites. Just come off the pills when you are ready to conceive. Reality dose: don't wait till your forties to conceive -- with endo, that might be too late.



(c). Lupron. It scratches at my heart to even type the name. This controversial med (many are trying to get it pulled off the market due to its side-effects) actually tricks your body into menopause and theoretically shrinks the endo sites. That kind of hormonal Russian roulette wrecks havoc on emotions and mental health. Many women have gone into severe depression as a result, myself included. Saddest part is, when you come off the Lupron (must after 6 months due to bone loss) the Endo comes back with a VENGENCE. Although Lupron works for some, there are many out there who would warn you to not go this route as it can make you crazy. For real. In endo circles, its referred to as "the devil".



(d). Hysterectomy. This is not really a treatment anymore, it used to be. Its not a treatment anymore because it actually doesn't work if there is still endo somewhere (like trapped in bowels or intestines where its hard to get at).



(e). Excision via Laparoscopy. Most effective treatment. Best time to get pregnant is shortly after Lap. If you're not ready for baby right then, stall off periods till you're ready. More periods, more possible endo development. Sorry to tell you doll, but it likes to come back. Dunno why, it just does. Pain from lap is just a couple days. They pump your abd up with CO2 to separate organs and see better, so post-op the CO2 rises to your shoulders and thats uncomfortable. Massage helps. You're all better a week after the Lap.



4. Things You Can Do To Help Yourself:

Meditation - to relax & breathe your way thru cramps; Visualization - i imagine blue fairies inside me that fly to the spot and heal it (wacko? um yeah, i had Lupron); Yoga - the stretches really help; eating right - get an Endo book to steer you away from the wrong foods and products (chemicals = bad); Track your pain - helps the doctor see pattern; Educate yourself - read up on Endo, making sure to check out who published it (hint: don't pay attention to stuff written by drug companies); Release your frustration - via exercise, leaning on friends, therapy, whatever.



5. Don't Give Up - if you tell yourself that its hopeless, nothing helps, you'll never feel good again -- YOUR BRAIN WILL HEAR THIS and pay attention. Try to stay positive and hang in there. Someday, I just know it, someday we'll have a cure.



My heart goes out to you as you come to terms with the disease. My arms go out to you to hug you with sympathy and comaraderie.