Options to End Endometriosis...

Hi K.,

I'm sorry to hear you have endo. I've had it pretty much my whole life. I've had three labroscopies, had the lupron shot for several months in a row, and been on the pill to combat the problem. The most effective form of getting rid of it is pregnancy....because it "dries it up" for nine months. However, I've found that the second best option is laproscopy followed by at least 4 months of lupron. Lupron sucks because you have the side effects of menopause, but it is temporary. My endo/periods were so painful that I was on the floor in pain sometimes. Plus, I hate the pill. I hope this helps. Best of luck!
L.

K., I'm so sorry to read about you having such painful symptoms with endometriosis. I too have it, but I'm going through menapause so it hasn't been as back as it once was in the past. So at least you know that at some point it will get better!

Anyway. About 15 years ago, I tried taking medication to trick my body into thinking it was in menapause to stop the ovulation, and it did work. The side effects though were scary to me. I can't remember what the medication was, but I do remember that it messed with bone denisty and increased risk for osteoporosis. So I decided to go the laparoscopy route in order to get pregnant. I've had 4 of them, and in each case I was able to get pregnant and my symptoms were temporarily relieved. I still have pain, but not like I did before. For me this was the right decision. I would recommend at least having he laporocopy in order to determine how extensive the problem is.

When I was 23 I was diagnosed with endometriosis. They had to do a laporoscopy, an exploratory surgery to confirm the belief. It an insicion in the belly button. Anyway, after bcp didn't work and they ran the gammit for over a year,the only other option they gave me, they being the Military DRs while we were stationed in Iceland, was Lupron (a hysto was the absolute last resort). It was a shot I would receive once a month for 6 months. It did put me in to menopause for about 10 months. It took approx 4 months for the drug to work itself out of my body. I was a super @#&@$!! to my husband. Not sure how much was from the drug and how much was due to Iceland...I really hated it their and was depressed. Anyway, I did loose my sex drive, can't remeber hot flashes, I don't think I gained any weight. After getting the shots for 3 months I was able to try to gain some control over my moodiness. I guess the saving grace and best part of that time is I had very little pain. I was on prescription motrin 1,000 mlgr "as needed" and couldn't get out of bed without it. Otherwise I would be unable to walk...
Anyway to make a short story long... I have been virtually pain free since. It is now 13 years and 3 babies (six pregnancies) later all of which were pain free unlike my first 2 babies. Every now and then I have to take motrin for cramps, but it is NOTHING like before. Would I do it over again? In a heart beat. Would I recomend it ? YES! But your husband needs to be on board with the menopause thing and be as supportive as possible. Plus you could try vitamin B supplements and lots of soy products. Apparently diets that are high in soy do not suffer the hot flashes and moodiness that regular diets endure. The reason I mentioned the pregnancies, when I was diagnosed with endometriosis I was told that I would not be able to get pregnant again. THe 3 miscarriages I had was when I was on birth control. It seemed I was more fertile AFTER the Lupron. My periods were regular and shorter.
My sister opted for ALL the other options except the Lupron and well she had a hysteroctomy (sp?) when she was 35. Granted she was done having children but she would rather not have had one....
I hope this helps! Goodluck with what you decide. Let me know if you have any more questions. I would be more than happy to help!
K.

What ever you do do not take the Lupron (SP) shot. My friend took it for endo and she hated it. It puts your body into menopause and caused my friend major osteoprosis. I know aother friend and she refused to take it b/c of those reasons. I take BC continuous, but if you have a hard time remembering then it may not be a good one. The IUD can be removed at anytime so it really is not that scary. And the laproscopy can remove the endo but it will likely come back. Hope this helps.

Well K.. I can't tell you from experience, but I can tell you from working in an OB/GYN office and hearing from patients what problems they have had w/ what.
The Lupron I can tell you most people think is horrible because it basically puts you into menopause and you will get all of the sx. Most people on the Lupron have to take a low dose of hormones to help control the sx.
A lot of people do like the Mirena because it is a form of birth control and it also helps w/ controlling your periods, a lot of people don't even have periods on it. It is completely safe, besides a few very rare risks which is w/ everything.
The laparoscopy is a surgical procedure, so it really just depends on how you feel about this. I don't know if they said if there are going to laser the endometriosis if there is any. I do know that the only way to really diagnose endometriosis is by doing a laparoscopy. If they do laser it, it will definitely help, but it is not permanent. Most of the time it does come back.
I hope this helps. I can tell you if I were in your shoes I would opt for the Mirena just because it will help you in more then one way :)

Hi there - I was diagnosed with endometrosis when I was 18. I took birth control pills and it didn't seem to help me much. I then did the lupron b/c it was less invasive than surgery, I did have hot flashes and cold sweats. It seemed to help a bit but not completely. They told me once I had children it would help. I was not ready to do that at that point so I opted to have the Laproscopy. That seemed to greatly help. I ended up getting married at age 24 and had my first child at age 25. I didn't have any problems after that.

Just this past year after the birth of my 4th child I tried the Mirena IUD, as a form of birth control. It didn't work for me. I bled constantly and my body was in pain. I would wake in the middle of the night and feel it in. I had it taken out 2 weeks after I had it put in.

Just follow your instinct about what works for you and your body. Everyone is different and reacts differently to medicines. Just keep pushing to find the one that works for you.

Best wishes!

I'm so sorry you're having such a rough time. I've never had this issue, but oddly enough I read this today:
http://ruddell.blogspot.com/2008/10/story-of-mycue-bad-or...

It's a blogging buddy of mine & she talks about her issues with endo. Please go read it. She had a procedure done that she talks about in detail & it changed her life!

If you'd like to try something natural first, read or research Dr. Christiane Northup, author of "Women's Body Women's Wisdom". She has studied many alternative methods and her book is very interesting and informative. She also has a website to look stuff up. Hopefully that will work to avoid the other options. Good Luck!!

I had a uterine ablasia. It basically removes the uterine lining and makes your period much lighter with no side effects. The only draw back is you can't have more children...I already have four and was done anyway. A friend of mine has no more periods...mine are very light with no cramping AT ALL! It was my own little talked about miracle! Ask you doctor and if he/she doesn't do them I'd make some phone calls...

Hi K.,
I feel for you going through what you are with endometrosis. I also applaude you for not wanting to take medication needlessly. There are women who have healed endometrosis with nutrition and I'd be happy to share what they have done with you so you can evaluate whether it would be something you'd like to pursue. You can reach me off site at ____@____.com of luck in whatever your decide.

Hi K.. I am also a non medicine person. I had a laporoscopy many years ago for endometriosis. This was when the only other thing I could do was to take the pill which cause so many more problems for me and didn't help the actual problem. It was outpatient and pretty non invasive. They went in through my belly button and there is a minor scar. I was in some pain for about 3 days. They use a laser. The problem with this and probably anything else, it can still come back. And for me, it did. It wasn't until recently that my periods have gotten better. I had my surgery 16 years ago. I do most everything homeopathically. That might be somerhing to look into. Good Luck! I know what you are going through!!

I have an IUD and love it, it has a low dose of hormones, your period eventually stops altogether which is safe and natural i've gone over it with my OB it just stops the process of ovulation so you don't have to have a period and i've had mine for about 3 1/2 years and it's good for up to 5 yrs. You can take it out earlier if you decide to expand your family or if you don't like it! After 5 years you just get a new one inserted, it doesn't hurt at all to have it done it's an in office procedure done by the OB and take only a few minutes, you will get mild cramping for the first couple days but after that it's smooth sailing!!! I used to have horrible cramping, very lathargic and heavy periods, now if i get anything it's spotting and mild cramping but that's it! It's worth a try. Good luck!

I had a laparoscopy 10 years ago and it changed my life! I had adhesions that had formed (from the endo) and it was so painful. Fortunately, I've not had many problems since - but I would recommend considering this option seriously. The procedure is relatively easy - I recuperated easily within 1 - 2 days, and the benefit was amazing.

I know how painful & emotional endo is and I hope things work out for you! I found surgery to be the most lasting and effective treatment for me. Good luck!

HI,
The only thing I have tried is the laproscopy and it worked. It recurs, of course, so I've had two in the past 8 years, but both siginificantly reduced the pain. I didn't know it interfered with fertility, and a month after the procedure I tried to get pregnant. It was immediate! I still have a couple of not so great days w/ lots of Advil but burning the lesions off is really, I think, the only way to reduce or get rid of endo. =) Good luck.

About 25 years ago - when I was young & newly married, I had endometriosis. After laproscopy surgery, taking the pill, and a failed pregnancy (tubal pregnancy)within probably 2 years - I never had it come back. I don't know if the surgery alone did the trick, or maybe the combination of the 3. But, if I remember right, if you have endometrosis, the chance of getting pregnant is decreased. I had a son 9 years ago just fine - with husband #2. I truly believe the laproscopy surgery did the trick for me. And it doesn't take long to recuperate. Mainly I remember the gas pains. :-) (When I told my then husband I needed to pass gas, he though he should feed me beans! I finally explained to him I already had the gas - quit feeding me beans!) - I divorced that husband. hehe Good luck. I hope whatever you try works.

K. -

I took the Lupron shots many years ago and would not do that again. Have you considered a simple natural hormone balancing cream to level out your periods? It might be worth trying for a month or 2 before you try something more involved and expensive. Feel free to contact me if you want more information about the natural progesterone cream. I have been using one for 3 years now & no problems with hormones!!!

L. L.

I don't know what to tell you to do but I know what to tell you not to do, in my opinion. The Mirena is an option I looked at and I found my answer on curezone.com some very scary things can happen with that option. Check it out for yourself and good luck to you.

I went through 6 different pills, Depo shot, and the patch and none of them every helped regulate my period or decrease the pain, some made it worse or just different! I have heard a lot about Mirina and am thinking about it for once my period comes back (I'm only 7 months PP). I'm not sure how BCP taken when you don't really need it is much different than a short that stops your overies from working, but I do get the weight gain issue and taking it on time! I never could remember to take it EVERY day around the same time :(
Let us know what you decide and how it turns out.

I don't know a lot about endo, but I used to take the BCP. I took it consistently for 10 years. I think there is a huge misconception with BCP. Everyone thinks that no matter what, you will gain weight. There are so many different options for pills out there now. They have different hormone levels and are much more tailored than they used to be. If BCP is an option to help you get some relief, talk to your dr about your concerns with the side effects. Perhaps he/she can offer you a different type of pill with different hormone levels. Most side effects only last for a few months, then they taper off. Most of the weight gain associated with the pill is water retention, and you can help fend that off with diet. I would just hate to see you suffer if there is no reason for it. I hope that you are able to find some type of relief very very soon.

I guess you have to ask yourself the following questions:
Do you want to eventually have more children? If so then the injections might be your best option. Remember we all have a certain amount of eggs in our system that will need to drop eventually.
Having an IUD in place for 5 years and that will have to be replaced sounds icky to me as well but it is an option. What are the guarantees it will stop the problems? I would do some serious reading up on it.
I have two friends who have had the surgery and one of them continues to have problems.
I will be praying for you.

Kim,
You are living what my life was up until about a year ago. I went through excruciating endo. I had a Lap in 2000 and they removed it all. But it came back with avengence. I was also put on BCP but to no avail. I refused Lupron because of the side effects. Did you know that not only does it cause bone loss but many women lose their hair and it is in no way a cure. Believe me, I did my homework. I had a second Lap in 2006 to remove several cysts caused by endo. Last year I couldn't take it anymore. The pain, the bleeding, passing out. I was a mess and with two small children and a very loving and devoted husband, I couldn't keep up. I ended up having a complete hysterectomy last December. It was the best thing that I ever did. I did immediately begin with hot flashes but they put me on the lowest dose of Premarin. The estrogen level is less in the Premarin than it was in any BCP that I had ever taken. I know that a hysterectomy is not for everyone but I had really explored all of my options. All I can say is I have never felt better. Best of luck to you and if you have any further questions please feel free to email me.
L.

There are some great web sites and books out there on endo. First, there's nothing that really ends it until menopause or a hysterectomy. It's an estrogen fed disease and rears it's head every time you have a period. Here's what I know about the options that you listed.

1. Lupron. Stay away from this. Just google Lupron side effects. It's really not a drug to be messed with. It will throw you into menopause, so you can trade your endo symptoms for hot flashes, insomnia etc. I had one friend take it and she was miserable. My Mom works in a pharmacy and her pharmacist, said not unless there were no other options. It's also related to bone loss, which us women do not need. The pill is a walk in the park compared to Lupron.

2. Continuous BC. This has worked wonders for me. I enjoy only three periods a year and they're not bad. The thing with endo is every time you have a period, it grows more b/c that tissue growing everywhere it's not supposed to wants to shed and bleed just like your uterine lining, so the scar tissue keeps growing. When you stop your period using the pill, it's not as drastic as Lupron, but it starves the scar tissue. I stayed on a monophasic pill: - orthocept and didn't have any side effects or weight gain. If you do this, ask for a monphasic bill..one color of pills except for the placebo.

3. Mirena - I don't know much about this b/c it freaks me out! To me it seems no diff than taking a pill every day. I read about birth defects from a retain IUD, which makes me wonder why would you be pregnant and have an IUD in. Just don't like the idea of something being planted inside of me.

4. Lap - the lap would be good to remove as much scar tissue as they can if they can get to it. I had some on one ovary and an area called the cul-de-sac (no kidding) inbetween my vag and rectum was full. They couldn't get to it and would have to send me to a specialist.

I started taking the max dose of fish oil capsules and extra magnesium and I swear that helped. I read up on it and both help offset cramps.

All in all, it's a nasty diseas that we have to best work towards managing.