44 answers

Experience with Endometriosis?

I just got diagnosed with Endometriosis a month ago. My ob/gyn gave me a few options: 1. get a shot that puts you into menopause for months (I don't like this idea at all!!! I don't want to risk needing to jump-start my reproductive organs....) 2. Get pregnant 3. Get a laproscopic surgery in which they burn off the endometriosis. Since we've been thinking about getting pregnant for a little while and have been doing nothing to prevent it, I opted to just try getting preg. My doc. said to try for 3 months and come back either preg. or for the surgery. I'm not pregnant yet, and this is excruciatingly painful.
Not only is it painful especially during my period, but this makes having sex to GET pregnant so painful!!! However, with all of this I must admit that having a surgery in that area makes me extremely nervous. I really want to have kids later, so I'm not so sure about "snip-snip"s and burning off of tissue down there! I really don't want anything to go wrong and have an accidental hysterectomy!! Am I the only one who's had these concerns? Am I just crazy not to realize how far we've progressed since the caveman days? Does anyone have any suggestions or helpful hints? Can anyone sympathize or empathize with my situation? I feel like I'm up a creek without a paddle... Anything would be appreciated!

What can I do next?

Featured Answers

Try to get pregnant asap, before the endometriosis gets worse, but don't give up. I had a fibroid tumor removed in 2002, that was very large. I had to have a bikini cut to get the tumor removed. (i also had a very very bad case of endometriosis)

2003 i had right fallopian tube removed and left tube tied. I thought i would never have kids. But we attempted ivf twice. The second and last attempt i got pregnant with triplets. My point is, never give up.

A wonderful doctor in bakersfield, ca can help you with this problem, and also help you get pregnant. (dr. Ayyagari, both me and my husband swear by him)

i hope this helps

I don't personally, but my best friend has it. So, does her mom. Part of the treatment she's had & was glad that I did was to get on the birth control pill for awhile. She told me the pill helped the body to slush off & re-build. She would get on the pill, I believe, for 3 months & then try to get pregnant. She didn't find out she had it until she was older & thinks that might be the reason she can't get pregnant. She's been trying (I think actively) for 5 years & she's 36. I don't know, but ask if the pill might help (at least temporarily)& then you can get pregnant later.

More Answers

Dear J.,
Not to sound presumptuous, but if anyone knows what you are going through, it's me. And I am sure there are a million other women just like us, so you are not alone.
I didn't start my period until I was 15 and it was all downhill and torture after that. I was in SO much pain that I couldn't even walk. The cramping literally irradiated in my back and down to my knees. I would be like that for weeks and barely spot. My mother, who never had a cramp in her life, was not understanding and had zero patience with me. She thought I was being a drama queen. She did not believe for one second that I could be in that much pain. But I was. And finally I went to a doctor who told me, at 16, that I may never be able to have children. I was a mess up one side and down the other. By 19, I had lost my left ovary and due to scarring, only had one good tube on the right side. I begged not to lose my chance at having a child. After numerous surgeries, I was so ill at 22, that I was scheduled for a complete hysterectomy. I spiralled into depression. A friend recommended her doctor who was about an hour away from me and I made an appointment. He could see my despair. I said I didn't think I could live if I never got to have a baby. He turned out to be the most wonderful thing that ever happened. He put me on medication that basically shut my whole reproductive system down for a year. That gave my body a chance not to continue forming the endometriosis. And, just shy of my 24th birthday, I had a beautiful baby daughter. Angel. After my pregnancy, things went right back to being horrible. Numerous other surgeries. I suffered. But, I held on. And it took nine years of torture, but I gave birth to a son. I only lasted a year after having him. The endo had come back with such a vengeance that I had no choice but to have the hysterectomy. I was in so much pain that I couldn't even carry my baby or ride in a car. But, I got my babies. I would have wished for more, but I am blessed. Lazer surgery can be helpful but it is not a cure. I just never agreed to the whole hysterectomy unless it was life or death and finally, I had no choice. But, I held on long enough. You can get through this! If you ever need a pep talk, let me know. Hang in there! God bless you!

1 mom found this helpful

Hi J.,

Below is a website you should check out. The link below explains the condition and has a recommended change in diet for you. You will be amazed at how much your diet affects your health.

http://www.endo-resolved.com/diet.html

I hope this helps,

L.

1 mom found this helpful

Hi J.. I'm so sorry you are going through this pain. When I was your age, I also developed endometriosis. Mine wasn't as severe as yours, in that I didn't have intense pain between periods. But when I did get my period, I'd have intense symptoms and pain. When I first started having these symptoms, I was told by an OB that I had a hormone imbalance and that I should take birth control pills. Luckily she also recommended the option of trying acupuncture to help.

I started going to Dr. Lifang Liang in San Francisco, via the College of Traditional Chinese Medicine where she was teaching. With her acupuncture treatments and chinese herbs, my symptoms were reduced but did not disappear. I seemed to plateau. Dr. Liang was puzzled I was at a standstill. She then wondered if I perhaps had endometriosis. While she has studied both Western and Eastern medicine, at that time she was not able to practice Western (she's from China).

Anyhow, I went to an OB who couldn't definitely say I had endometriosis without an invasive laproscopy. But she thought I probably had it. So I returned to Dr. Liang with that info and she adjusted her treatments to focus on endometriosis.

Well I must have had it and her treatments/herbs definitely worked. All my symptoms subsided and never have returned. That was over 15 years ago.

In addition to my endometriosis, I had gone to Dr. Liang for other issues like allergies, colds, etc. with great results. A friend of mine took her daughter there when she was experiencing a severe hormornal imbalance. They had great success with Dr. Liang.

I highly recommend this very sweet and caring doctor. Here's her website http://www.lifangliang.com. Her focus is on infertility, but she's trained in gynocology - Western and Eastern. She's also published a book on infertility and IVF.

I fortunately was able to quickly become pregnant with my now 4 month year old daughter. However if I ever had troubles, I wouldn't hesitate to go to her for help. Best of luck to you whatever route you take. I know some have had good results from surgery, but I've also knew a young woman who had two surgeries before age 25 and still had issues. It kept coming back :( Of course, this was over 10 years ago...so perhaps the surgical treatments are better now.

BTW: If you never have had acupuncture and have fear of needles, you should not worry. I was COMPLETELY needle-phobic (and still am in terms of blood draws or IVs, etc.). However acupuncture needles are very very thin and you usually feel nothing or very little in terms of the poke.

1 mom found this helpful

I was 24 years old when I found out that I had endometriosis I'm now 51 back then there wasn't much to do for it my doc told me to get on birth control pills but I had a reaction to them so that was out. So a year later and suffered very much pain I had I hysterectomy. but I already had 2 children. if they offered to burn off the tissue back then that is what I would of done. I don't know if getting pregnant would make it go away you would still have pain after having a baby. I did. hope this helps!

1 mom found this helpful

Hi J.
I have heard of people doing acupuncture (with good results) for this ... you may want to read articles on the net about it and see for yourself. I wish you the best of luck :)

J.-

I have had endometriosis for about 10 years. I was diagnosed with it, when I was 22 and it was because of the pain.
I know the surgery seems scary--but I strongly advise doing it.
However, I also strongly advise having a surgeon who specializes in it, because he/she will so a better job. The surgery is painful--because most surgery is, but then once you recover, you'll have a lot less pain, and possibly none at all. plus, if the endo happens to be blocking any of your fertility organs, then it will just help you to get pregnant faster.
I had had 3 laproscopic surgeries over the past 9 years, and then inn december we welcomed our first daughter. It took us 3 months to get pregnant--and I was told I might have a really hard time getting pregnant. Good Luck!
-K. l

Endometriosis is a condition where the uterine lining grows in places it shouldn't. It can form cysts which can rupture, which is extremely painful. One of the best cures is pregnancy, which ironically becomes impossible because of the condition. I had endometriosis for about 30 years. I was diagnosed after my first, and only, child was born in 1974. in 1976, I had two endometritic cysts rupture on my left ovary, which required surgery. My symptoms were the same as a ruptured appendix, which is what my doctor thought I had. He had quite a surprise once I was opened up in emergency surgery. Endometriosis was growing everywhere. Post surgery, I spent 10 years on low dose birth control pills, which worked well. I was taken off the "pill" for 30 days once every 12 months and when I wanted to get pregnant again. Due to other issues, specifically fibroids, I couldn't get pregnant, so went back on birth ontrol pills to relieve the effects of the endometriosis. If the laporoscopic surgery had been an option for me, I would have taken it, but the procedure wasn't done in the 70's and 80's. My suggestion would be to consult with an OB/Gyn specialist as a second opinion. Acupuncture may be another option. I can recommend Ursula Monroe at Valley Acuncpure. Her # is ###-###-####. She successfully treated me for
tendonitis last year. Whatever you decide to do, don't wait too long to do it. The condition only spreads and gets worse when untreated.
Good luck!

Here is a link to some resources for Alternative/Natural treatments:

http://www.google.com/search?ie=UTF-8&oe=UTF-8&so...

My cousin went through this with a doctor that claimed her pain/experience was not real.

Good luck!

T. Solar
Founder
www.theparentpack.org

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