Women (and men too if your wife/gf) ... what are your experiences with endometriosis???

Question

I have already had 3 surgeries, each about 2 years apart.

I have moved away from the intelligent doctor that I once had (300 miles away to be exact) and have now been operated on by another doctor.

Well it's been 2 and a half years since that surgery and I have already tried to take the shots to delay the surgery and it's just not helping the pain anymore. I don't particularly care for surgery or think it's much fun (who does!) but now I am willing to do the surgery again to remove the tissue buildup because I am in so much pain I just want it to go away.

Problem is, my doctor says he doesn't think I need surgery again and should just keep trying to take the shots to subside the pain. I think I will probably end up getting a second opinion.

I know the only real cure for this is basically to get a hysterectomy but I really, really don't want to do that because I am still young (under 30). What are your thoughts and experiences with this?

Answer 1

Surgery using the modality of excision can confer the best possible rates of long-term successful relief. Check out www.centerforendo.com for details on excision.

Lupron injections and the other hormonal ilk like it are temporary relievers, at best, all of which carry significant side effects and no lasting relief.

There is no cure for Endometriosis. There are ways to treat it successfully, but there are no absolute cures, including hysterectomy. Visit www.endocenter.org and ask for info from them on aromatase and why Endo persists after hysterectomy.

I definitely recommend visiting and joining (for free) http://groups.yahoo.com/group/erc for the latest and most accurate info on Endo, along with some terrific support. Feel better and good luck.

Answer 2

I've had endometriosis for about 14 years officially diagnosed a year and a half ago. I've had the laparoscopic surgery and will most likely have to have it again within the next year since my pain started to come back. There are a lot of misconceptions about this disease especially ones like a hysterectomy or pregnancy will cure it. There is no cure for endometriosis. You can still have endo after a hysterectomy and pregnancy works like birth control in that it temporarily stops/reduces endo, but it can come back after your body recovers from the pregnancy. I would recommend a second opinion if you're in a lot of pain. Do some research on endo at endosupport.com, endometriosis.org or from books like Living Well with Endometriosis. I've had a very hard time with endo and it always ebbs and flows my reactions to it. Sometimes I'm not in much pain and I can control it with diet and exercise and sometimes I'm in so much pain I'll try anything including the shot (which made me gain 30 lbs), prescription pain killers and surgery. Whatever works for you is what you need to do. If surgery works then find a specialist that will perform the surgery for you. No one knows your body like you do and if you feel you need something then get it, unless someone can prove you don't need it. Good luck. I know how confusing and rough having endo can be.

Answer 3

I have a very good friend and a friend's ex-wife that both suffer/ed from endometriosis.

The friend still suffers at a different degree than you. She's not to the point where she needs shots for pain. She was at one time on a strong pain med that required her to be pretty much bed ridden for the first few days of her period. That was when she suffered the most unbearable pain. Sometimes light bleeding occurred.

The friend's ex-wife suffered it sounds like how you are now. This was a while ago(over 15 yrs.) and her dr. recommended she get pregnant after 2-3 surgeries. She did as difficult as it was (3 or 4 miscarriages before one finally took) and it cured the endometriosis but more female problems occurred immediately after.

Is there any way you can still see your previous dr. that is 300 miles away or maybe get a referral? I realize it's a trek but, sometimes it's worth it for quality medical care and other important issues. If neither of those are realistic options, you should seek a second opinion. Try your best to find someone who pretty much specializes in it or by other women's referrals. If the outcome is the same after that, you really need to weigh your choices based on pros and cons of each and what your heart and soul tell you. Only you know your tolerance and hearts desires. You are young and there are other options for children in the future. You will still have your ovaries and can use them with a surrogate and your husband/significant other's sperm for a true genetic child of your own. You can use your eggs and donor sperm with a surrogate to carry if you are not married or do not have a significant other.

I do not envy you at all having to deal with this and decide with these choices. I wish you all the best and will pray for you.

Answer 4

I knew a girl who had this. She was all screwed up. She had the surgeries and some type of shot. The doctors told her that the surgeries would be needed continually to keep this at bay. It's a pain in the butt but she just keeps getting the surgeries. She told me that she wanted to still live a normal life without all the complications that this brought. I've still kept in contact with her and she's still getting the surgeries. Good luck.

Answer 5

i am so sorry you are having this problem at your young age . the best advice i could give you would be to go ahead & have your family , your body could change when you get pregnant & i do pray this would be an option for you at this time because i know how horrible they are. i was on med-line yesterday looking up a lot of info about them & their is just about nothing to be done . birth control pills help some , but as you say a hysterectomy is the only for sure answer .we do have a healing jesus & he healed the woman with an issue of blood & i will pray for your healing.also go to world prayer team & keep your name up there & we'll believe for your healing in jesus name . he can do what man cannot. may god's healing power flo thru you.

Answer 6

I have a relative that had it till she gave birth and then no more problems. Find a female doctor. There are way more things to consider with that surgery.