Endometriosis

[k2bdeutmeyer]

I'm pretty certain I have it (though a small part of me fears it is something worse). I have an appt with they gyno on March 12th & I'm totally scared. Scared I will have to give up my dream of baby #4 and scared it will turn out to be even worse than I think.

 

So...anyone who has BTDT....what should I expect for this first appt? What about after that?

 

I can't do hormonal birth control because it makes me vomit.....and quite honestly, I don't really want to take it (even if I could) until I'm certain we are really done having children. I just feel like it messes with my body too much.

 

Do they diagnose without a laprascopy? Or is that probably part of my near future? Will they only lap to diagnose or is it likely that they will clean things out while they're in there anyway?

 

I realize every doctor (and case) is different, but I'm just so nervous, I think it would help to have an idea of what I'm in for. It's going to be a long 2 weeks, sigh.

 

Can't they just knock me out for a day or two every month?? lol

[celticmom]

I have found dietary changes to be helpful. I had to eliminate caffiene from my diet. I also have problems with ovarian cysts. I also avoid conventionally raised animal products. I did have surgery for cysts and scar tissue from endometriosis was removed at the same time.

[Stayseeliz]

I haven't been "officially" diagnosed with endo as I got pregnant right before we were going to schedule the lap. I'd done a endometrial biopsy that came back as having a high chance of having endometriosis but they didn't do anything because I was pregnant. If you do have it it certainly doesn't mean no more babies. I did have a hard time getting pregnant with number three but after minimal intervention I did get pregnant the first month I went to a reproductive endocrinologist. Baby number four was a big surprise with no intervention on anyone's part. :) Hang in there. Don't worry until you know something!

[Amy in KS]

I was diagnosed at 19, but had symptoms for several years. I had a lap and the doc removed some of the growths. It was outpatient and only mildly uncomfortable afterward. I was diagnosed level III-IV and put on Lupron for six months (which shrinks the growths). This helped with symptoms. I was told to expect to have a hard time conceiving. I wasn't married then.

 

I ended up going on a second round of Lupron when i was 29 before trying to conceive with my husband. We got pregnant with our first right away after that!

 

There's hope.

[mumto2]

Depending on the severity the pelvic exam can tell a lot. It has been about 20 years since I was diagnosed but I remember being told at my annual that i probably had it. Mine was quite severe. But I did manage with laproscopic surgery to have 2 healthy babies. I breast fed for a long time which was supposed to help prevent regrowth. Try not to worry too much--the first step is finding out what the problem is.

[Liz CA]

Glad you are going now! Don't wait as long as I did.

I believe they will need a laparoscopy to definitely diagnose since it does not show up on cat scans or x-rays - not sure about MRIs.

Once they are peeking in there, they will clean it up - at least that is what i was told. It happened slightly different in my case but I was told that once there is a diagnosis, they would take care of it there and then.

 

You may ask about Progesterone - the bio-identical kind. It counteracts the excess estrogen that often causes the endo. If you have a mild case, this may be enough until you had all the kids you want; perhaps you will not need surgery.

Get all the facts to make a decision.

[Pamela H in Texas]

Many moons ago, I had it cleaned up a few times.

One of those times was in order to get preggo with ds (16).

So it definitely can work (and I had many other issues to make pregnancy difficult.

 

Best to you!

I cannot WAIT to have all that taken out Wednesday!

[cottonmama]

:grouphug: I'm sorry you're having to deal with endo symptoms, and I hope you get answers and relief.

 

From what I understand, they can't diagnose without going in there, and once they're in there, they might as well treat you. Your options also include excision (as opposed to larascopy) -- if you can find a dr who will do it. From what I understand, if you get excision, it is less likely to come back, but it is $$$$ and you have to find someone who does it.

 

I think your gyn will probably run some other tests, to eliminate other possible causes of the symptoms. That way you're not too likely to have to go in for endo surgery only to come out with a negative diagnosis.

[Dobela]

I had endo and PCOD and they can only be accurately diagnosed by a lap. Some doctors will do one of those first, others will want to use hormone treatments first. The hormone treatments did not help me. Lupron was a nightmare for me and I am still struggling with some side effects 10 years later. For other people it was a miracle drug. Personally, after all my years of dealing with all that, I would do the lap first. It just makes more sense. To treat it based on a lot of symptoms is just not as accurate. My dh said it was like trying to determine if the injured arm was broken or sprained without an x-ray to just prescribe a bunch of meds based on a 30 minute visit where you mostly describe how it hurts.

[k2bdeutmeyer]

I had endo and PCOD and they can only be accurately diagnosed by a lap. Some doctors will do one of those first, others will want to use hormone treatments first. The hormone treatments did not help me. Lupron was a nightmare for me and I am still struggling with some side effects 10 years later. For other people it was a miracle drug. Personally, after all my years of dealing with all that, I would do the lap first. It just makes more sense. To treat it based on a lot of symptoms is just not as accurate. My dh said it was like trying to determine if the injured arm was broken or sprained without an x-ray to just prescribe a bunch of meds based on a 30 minute visit where you mostly describe how it hurts.

 

This is kind of my take on it. I think that would be my preferred method.

[Cara in Ky]

I was diagnosed two years ago via a lap. I forget what the procedure was called but basically cleaned out the tissue (and fibroids) and told me to be extra careful afterwards if I did not want to find myself pregnant. The pain I did have after the surgery was due to the gas let off by the burning of tissue. It went through up back and into my shoulders before getting released. Most of that gas was producing during the fibroid removal, though. I have to say the pain from the surgery was not much worse than what I experienced monthly and was WELL worth it.

Edited February 28, 2012 by Cara in Ky

[k2bdeutmeyer]

Glad you are going now! Don't wait as long as I did.

I believe they will need a laparoscopy to definitely diagnose since it does not show up on cat scans or x-rays - not sure about MRIs.

Once they are peeking in there, they will clean it up - at least that is what i was told. It happened slightly different in my case but I was told that once there is a diagnosis, they would take care of it there and then.

 

You may ask about Progesterone - the bio-identical kind. It counteracts the excess estrogen that often causes the endo. If you have a mild case, this may be enough until you had all the kids you want; perhaps you will not need surgery.

Get all the facts to make a decision.

 

How long did you wait?

 

I've been at the "there is no way this is normal" pain level for about a year now. But I've always had really bad cramping and spells where I feel like I'm going to faint because of it. That part has probably been going on for 14+yrs.

[kamom]

I would avoid the hormonal treatment at all cost. For me they did the lap and removed what they found. I then started a natural progesterone compounded just for me, with a Dr in PA. They told me I have a year and it will be back. Well 5 yrs later, and one pregnancy, I still am mostly pain free. So there are natural ways (and prayer)to hinder it from growing!

 

I used to have at least one day a month that I could not function without pain reliever. and I endured the other days. Now I still have pain free cycles! The Lord has been very good.

[k2bdeutmeyer]

I would avoid the hormonal treatment at all cost. For me they did the lap and removed what they found. I then started a natural progesterone compounded just for me, with a Dr in PA. They told me I have a year and it will be back. Well 5 yrs later, and one pregnancy, I still am mostly pain free. So there are natural ways (and prayer)to hinder it from growing!

 

I used to have at least one day a month that I could not function without pain reliever. and I endured the other days. Now I still have pain free cycles! The Lord has been very good.

 

What you described is exactly what I'm hoping for. I'm glad to hear it is a possibility.

 

I have one day where I am so miserable I cannot even function - ready to go to the ER kind of pain. The other 3-4, I am miserable, but I can at least get my kids fed, etc.

[kamom]

How long did you wait?

 

I've been at the "there is no way this is normal" pain level for about a year now. But I've always had really bad cramping and spells where I feel like I'm going to faint because of it. That part has probably been going on for 14+yrs.

 

The stabbing pain that you feel like you're going to faint are a big clue that you have it. I'm so sorry you have to go through this. I cannot recommend a natural progesterone and a very good diet and multi vit. highly enough.

[k2bdeutmeyer]

The stabbing pain that you feel like you're going to faint are a big clue that you have it. I'm so sorry you have to go through this. I cannot recommend a natural progesterone and a very good diet and multi vit. highly enough.

 

Thank you!

 

I know I've put up with it for too long, but I think I just didn't want to go in for "nothing" because I was just being a baby about cramps or something. It's only been in the last year or so that I've been able to look at it and realize that there is no way that this is "nothing".

[kamom]

Those stabbing pains that on several occasions were so intense that I thought I was passing out and my infertility were the deciding factor that I HAD to deal with this. I know lots of women have pain monthly but not stabbing pain that makes you feel like fainting!

 

I know the awful indecision that goes with not being able to really know unless you agree to surgery! (((hugs)))

 

Yeah, the trapped gas pains afterward were awful too, so was the nauea. But it was sooo worth it. I hope you have a good outcome!

[Cara in Ky]

If you have the lap, have a recliner ready for you when you come home. It was several days before I could lay flat due to the stupid trapped gas.

[TGHEALTHYMOM]

I wil pray for you!

I have endo severely : In entire GI tract, in bladder, in uterus, on ovaries, on outside of everything in my pelvic region.

 

The bad part for me was spending a full year in excruciating pain, then seeing a Dr. about it. I had been to midwives and never seen him. I got a referral from a Dr. who is a friend. And it did not go well because he did not think I had endo.

He was dead set on me having an in office procedure (experimental) to put coils in my tubes and do ablation to stop my periods.

 

After an hour of trying to convince me, and getting ready to leave, in the hall, I turned to him and asked if he would just do the lap surgery as that is the only way to diagnose and remove lesions. So he agreed, and 2 weeks later I had it done. He also did a D & C. and he told me he removed a lot and that my ovaries were in bad shape. I did not want to get pregnant, but can't use hormone pills, and read about severe effects of Lupron. He wanted me to get Lupron shots for awhile after surgery and would have given one that day if they had it but had to order it.

 

I did not go back to him and got pregnant about 4 weeks after surgery... this has been my roughest pregnancy so far... I had so much gut pain for 3 solid weeks, I finally got Nourishing Traditions out and started using it. Fermenting foods, and quickly got results. Now we make butter, buy organic yogurt, and Kombucha and I have been trying to eat healthy for over 12 years, but fermenting foods: ( cultured butter, saurkraut, soaking grains, sourdough bread, cream cheese, sour cream, and soaking grass fed beef in buttermilk, etc.)

 

I eat Ezekiel bread, sourdough bread, no processed cereals, very little milk or cheese, lots of veggies, grass fed beef, amish chicken, organic turkey, whatever I can find organic: granny smith apples, lemons, grapes, potatoes, garlic, etc.

 

I also have eaten many of these for years but it was not enough to heal me of endo.

 

I think I have had the symptoms since I was young, and severe symptoms before my 5th child. I use supplements for candida cleanse, garlic, barley grass, oil of oregano, grapefruit seed extract, olive leaf extract, cranberry extract, whole food pre natals, and drink tons of water out of glass only.

Plastic, chemicals, even lavender oil, and hormones in milk and meat can all put our bodies on phytoestrogen overload, and lead to diseases.

 

The Chinese believe when our liver stops cleansing our bodies properly, our blood flow backs up and the endo cells spread to where they do not belong.

 

Endo is hard to research and there are many claiming cures, and I am debating having a partial hysterectomy after this baby. I could hold off until this baby is weaned, but am tempted to just have it done in the hospital after she is born.

 

I just can't afford the time and pain of suffering any more from this disease.

 

Dr. Mercola is right that it should be prevented: but I couldn't find anything on his site about how to treat it.

 

Fighting candida and fungal infections is going to help because when the gut is over loaded, nutrients are not absorbed leading to worse health. Also, severe yeast infections are a hitch hiker to this disease. I had never had one until my 6th and 7th pregnancy. Monistat 7 and my diet cured the 2nd one. I could not get my Dr. to see me in my 6th so her assistant gave me an antibiotic which helped for 1 week, then the infection got so much worse, and I did not know if Monistat was safe or not, so I suffered for weeks after that. Natural cures help for sure, but sometimes surgery is necessary.

 

There is a place my OB works with that test you for hormones and make a " natural" hormone to replace what is missing. I don't want to do that, but I am not close enough to menopause to wait it out. I have heard they offer pills or cream and would prefer cream.

 

Pray for me to know what to do to: it is scary, and it is rare to find a knowledgeable Dr. who really wants to do what is best.:grouphug:

I am going to a new OB hopefully soon because she has a Midwife in her office and will ask her about progesterone cream too.

I have used some of the Arbonne but that was years ago. I would like to know of a healthy progesterone cream that is safe while nursing if there is such one.

 

 

PS: taking cranberry pills with lots of water and going quickly to the restroom will help cure or prevent a bladder infection. I am battling one right now and went to the L & R triage to see if I was having pre term labor I was in so much pain. I know now that I had a severe kidney and bladder infection. The RN told me the blood test showed no infection. I am taking Olive Leaf extract, Oil of oregano, Candida Cleanse, and Cranberry with lots of water, and my pain is diminishing. The only good thing is I got an ultrasound and have a healthy baby girl with all of her body parts, and she is very active, so I am not as worried, but have to stay on top of my health.

Edited February 28, 2012 by TGHEALTHYMOM

[Dobela]

Thank you!

 

I know I've put up with it for too long, but I think I just didn't want to go in for "nothing" because I was just being a baby about cramps or something. It's only been in the last year or so that I've been able to look at it and realize that there is no way that this is "nothing".

You really need to have it taken care of. When I finally consented to a hysterectomy, we discovered that part of my problem was that an ovary had been wrapped in endo more than once and it was grossly enlarged (think softball). In addition I had developed adenomyoma (deep endometriosis) and the endo had managed to attach my spinal column to my back.

[coffeefreak]

Based on my experience, I'm fully convinced it's genetic, and there's on going research to prove it's an unpreventable disease. I get hot under the collar when people make snap judgements about what CAUSED my endo, because I did nothing to cause this. It's one of the reasons I can't stand people like Mary Pride who claim that birth control causes endo. What I found out in 2010 was that using birth control from the age of 15 actually enabled me to have my two children. My surgeon apologized for all the bad medicine I've had to endure, but made it clear someone was watching over me in high school, when a Dr said, "Oh, you have cramps? You know, the pill will fix that!" I actually was misdiagnosed for years, went through 3 different surgeries where they said, "We don't SEE it, are you sure it's not all in your head?" and only when my Surgeon went in the 4th time and took out everything that hurt (including my Uteral Sacral Ligaments), did they do the tests and it was 100% endo, even though nothing LOOKED diseased. I was considering going to this Dr at the time, and it turns out he is right. Endo is not always on the surface, and it's not preventable. I still have my ovaries because even taking the ovaries out does not stop the growth sometimes. Only excising it, and only an experienced surgeon should be trusted NOT any old GYN. I happen to have an excellent surgeon here, who was able to help me, but even she missed my endo the first time.

 

I would stay away from drugs and get as much information as you can about your Surgeon including how experienced they are with endo excision, do they do these types of surgeries on a regular basis, and will they take tissue samples of other areas that don't look diseased so you can find out how extensive the damage is.

 

Going through this is scary and confusing, but life on the other side is beautiful. EVERYTHING is better. Trust me ;)

:grouphug: and prayers go out to you!

Dorinda

[mumto2]

I participated in one of the genetic studies 14 years ago. I definately had the marker they were isolating at that time. The doctor who was doing the research did my last lap. I had 4 over 7 years and the one with the really great surgeon was the easiest recovery wise. It was really surprising because the surgery took double the normal time because the endo. was so extensive. The more experience the better. I did get pregnant with dd right after . I am so greatful to that Dr. I haven't followed his research since because of my fear that i gave the gene to my daughter--so far she appears to be fine. I don't want to scare her with Dr. Visits, plus we moved, going back for that Dr. Would definately scare her.

[k2bdeutmeyer]

Thank you for all the responses!!! It really helps to know that if I am, in fact, correct....there is still hope for another baby (if that's what we decide to do) AND some pain relief.

 

THANK YOU!

[NotSoObvious]

Yes, just have the surgery. Also, I had NO luck with my regular OB. It took me a few years before I got the courage to go to the endochrinologist and now I could kick myself for wasting so much time with my regular OB. I knew I had it!

 

They clean you out while you are under. They also did the dye test on me, too. And yes, a lap is the only way to diagnose it.

 

One warning: My doctor told me that sometimes if they get in there and you don't have it, insurance won't pay for it because then you technically don't have a diagnosis. Crazy, I know. Just check with your insurance because it would have been about $7,000 out of pocket for us had our insurance not covered it.