Endometriosis...what do you think?

[taffers]

Has anyone had endo and gotten pregnant without the surgery? How bad were your symptoms?

I am fairly convinced that I have endo...I have ALL the symptoms. I have mild cramping e.v.e.r.y.s.i.n.g.l.e. day. I have lower back pain everyday as well. And TMI, but let's just say I also have all the gatrointestinal symptoms (yuck). I also get bad PMS cramps.

These symptoms started after I went off the pill about 3 months ago, and now I'm remembering that I had awful cramps before I was on the pill.

I told my doctor about it, and she ordered an intravaginal ultrasound (since it could be ovarian cysts, etc), but the ultrasound showed nothing.

So at my June appointment, my doctor said to just start TTC because if I get pregnant, I either don't have it or have a mild case, and then talk to her in 4 months.

I thought things had gotten better because I wasn't having the symptoms in the beginning of August, but since I O'd (CD15), I have the symptoms again every day (I'm now 7 DPO). DH thinks I may be pregnant, but you don't get cramping from 1 DPO!

My friend says that she has endo (although never had the surgery to confirm it so she doesn't know for sure) and got pregnant within 3 weeks of starting TTC.

Has anyone else been so lucky? Did anyone else have chronic symptoms such as mine? I know they say that the severity of your symptoms has no correlation to the extent of your endo (i.e. you can have no symptoms and a severe case, or severe symptoms and a mild case). Is it possible I could still get pregnant? Might I have something else (that an ultrasound wouldn't show)?

Sorry so long...I just wanted to know other people's experiences. I don't want to have a lap if I don't have to.

[pocahontas]

Well, now that my lap is over I guess I am qualified to answer part of this. I was in the second category you mentioned...severe symptoms but MILD (Stage 1) Endo (which thankfully has been lasered off). My RE basically told me she suspects I have been getting pregnant (as my DH and I also suspected based on signs and symptoms) but that due to the endometrial tissue preventing the fertilized egg from implanting it was more like a chemical pregnancy I guess than anything else. I know someone who says she got pregnant with endo (not sure how she knows she had it since the only diagnosis for it is a LAP because u/s and b/w will not reveal it). So it is possible, I guess. But if you try 6 months like I did and experience possible pregnancy twice but it ends in no baby, you'll probably feel more like having that lap done after all. Right now though, with you never having TTC, it's a bit premature. There probably is no need to do that just based purely on speculation and no length of time with unsuccessful TTC. Hope that helps.

[taffers]

Thanks pocahontas! Right, we're just starting TTC so I really don't know. And I've had the same experience...people saying they have it and were able to get pregnant, but yet, they really don't know if they have it since they never had the surgery!!

I'm also concerned with the pain because I really am in pain every day, and would love to stop being in pain!

If you don't mind sharing...how does it work? You go in for the lap, and they determine if you have endo, then you go in for another lap at a later date to get the growths lasered off? Do they tell you as they are doing the lap, "yes you have it"? Is there a long recovery time after that initial lap (I know it's not a very intrusive surgery)? How much time between the lap to see if you had it, and then the lap to remove the growths?

I'm sorry for all the questions! I'm just so confused as to what to do!

I really appreciate your insight.

[j*east]

Here's my experience: my endo showed up on u/s as a cyst, which my dr. and I could also both feel. It didn't stick out or anything, but after my dr. felt it, I could feel a place that felt tougher to my fingers and tender when I pushed it. (Tender like it hurt a little.) I changed drs. b/c I moved and was then referred to a surgeon. Until the bloodwork after the lap, everyone thought it was some kind of cyst, but the lab work showed that it was endo. I'm TTC but not PG yet.

People probably do get PG with endo w/o surgery, b/c a lot of people never know they have it. Also, you can look at the chart gallery on fertility friend and do a search for pregnancy charts w/ endo--there are a lot.

If you TTC for several months and don't get PG, you'll go back and they'll probably do an HSG first and then a lap if needed. Oh, and I'm pretty sure you'd get anything they found taken out during the first lap--they wouldn't just go in, look around, and leave the endo. :) You're unconscious during the lap, so they don't tell you until after. There's a lap thread (http://www.constantchatter.com/forum/showthread.php?t=5657) where you can read about people's experiences, including mine. It's really not that bad at all--a rough weekend and then you're better.

If you're in real pain though, beyond TTC concerns, you may want to seek a second opinion. It depends on how much it's bothering you.

Good luck!

[jesseybell]

I was diagnosed when I was 19 - I had severe symptoms (7 day periods during which I went through Super tampons every 2 hours and had to take 4-6 advil every 2 hours, plus pain during sex) but when I had a lap, it was only a mild case and nothing had to be lasered off.

I was on the pill for 15 years and was very scared to go off of it because I was afraid the endo would come back....I got pregnant right away. I was supposed to have an HSG to see if my tubes were blocked from endo, but I got pg before I could have one.

[taffers]

j*east: Can you tell how little I know about the surgery! ;) I actually just went through the ENTIRE Family Planning section, and read every single thread that has anything to do with endo! After reading all the threads, I'm thinking maybe I need to find an RE (just learned what that is!). Good to know it's just one surgery! Thank you for your help!

jesseybell: That's great that you had it and got pregnant right away! It makes me feel better to hear "success" stories. :p

[dzmattie]

I will answer even though I had surgery three times for endo - they do the removal when they go in for the surgery the first time. I have a moderate case with severe symptoms. I have been on meds and injections to treat the endo and had it removed three times. When I started TTC - my RE thought it would end with infertility treatments although he said you never know. When I went off all meds to TTC - I got pregnant on the second try with DS and first try with my current pregnancy. So - try not to stress while TTC and just see what happens! You never know! Good luck!

[taffers]

dzmattie: Thank you! Another good experience. :) Of course, I don't know if mine would be severe or moderate since I haven't had the surgery yet, but it's great to hear that even though I have bad symptoms, it could still be low stage endo. Congrats on the pregnancy!

[Scooter]

Taffers, since you're just learning more about laparoscopies, I thought you might be interested in this thread: What would you do? (http://www.constantchatter.com/forum/showthread.php?t=20896) started by a poster who was considering getting one because of endo symptoms. Sound familiar? ;)

I thought I'd also add that I had quite a few symptoms of endo, but my lap revelaed that I don't have it after all. Just goes to prove that symptoms don't necessarily mean anything with endo, you never know with it!

[taffers]

Thanks Scooter! I am crossing my fingers that it's not endo, but I just can't imagine what else it could be considering I have cramping every day, and since my ultrasound showed nothing. :confused: The only symptom of endo that I don't have is heavy periods...mine are SUPER light...3 days and only medium flow at most. Maybe that's a good sign!

[pocahontas]

Thanks pocahontas! Right, we're just starting TTC so I really don't know. And I've had the same experience...people saying they have it and were able to get pregnant, but yet, they really don't know if they have it since they never had the surgery!!

I'm also concerned with the pain because I really am in pain every day, and would love to stop being in pain!

If you don't mind sharing...how does it work? You go in for the lap, and they determine if you have endo, then you go in for another lap at a later date to get the growths lasered off? Do they tell you as they are doing the lap, "yes you have it"? Is there a long recovery time after that initial lap (I know it's not a very intrusive surgery)? How much time between the lap to see if you had it, and then the lap to remove the growths?

I'm sorry for all the questions! I'm just so confused as to what to do!

I really appreciate your insight.Well, I guess I came back a tad late to answer since I agree with all the PPs. Obviously they want to cut you as few times as possible...so it's an "all in one" deal. They did the lap...found the endo and lasered it on the spot. Since I was under general anesthesia, they didn't tell me much of anything...but my RE did tell my DH who was in the waiting room and even showed him pics they had taken of my insides during surgery so she could illustrate as she was explaining it all to him (of course, he just nodded his head like he understood. LOL :D )

[taffers]

Thanks pocahontas! I would love to see pictures of my insides down there. ;) Although I've looked at pictures of endo online, and couldn't really tell what I was looking at!

[alliekat75]

Hi Taffers,
Just wanted to offer my experience. I've been off and on BCP for years. I have always had super light and fairly pain free periods. The cramps would be mild for 1 day and could be alleviated with 2 Ibuprofen. Fast forward to March 2005, when the BCP are flushed down the toilet because we planned to TTC in the fall. In October 2005, I started having pre-ovulatory pain for a few hours each month. Strangely enough, the pain always struck around the 3AM time frame. It was very short lived (2 - 3 hours) and always responded to Ibuprofen. During my annual GYN visit in December, I mentioned the pain to the NP. She casually mentions endo, but doesn't seem too concerned. In Feb. of 2006, I had 7 days of persistent severe pain. Handfulls of Ibuprofen wouldn't help. I finally went to the doctor where an u/s showed a 6mm endo cyst (endometrioma) on my right ovary. The doctor recommended a lap right away to remove it.

The lap revealed severe endo (stage IV). He removed what he could, but unfortunately wasn't able to get it all. He did free up the ovary. I was devastated with the diagnosis. It was hard for me to reconcile the fact that I had it so severely, but until recently, had virtually zero symptoms and now my fertility was being compromised. He recommed we TTC for 6 months on our own.

With endo, time is your enemy, so we sought the advice of a RE, whom I adore. He didn't feel the need for us to wait, so we're on our 2nd month of Femara/IUI.

I don't want to alarm you or to cause you to panic, merely to share my story. Endo is such a mentally exhausting and frustrating condition. It manifests itself differently in people, so it is hard to know how or even if it will impact your fertility, but please take it very seriously!!! Had I known then, what I know now, we would have immediately TTC the month after the BCP were down the drain. I believe it really started to grown the minute the hormones were out of my body.

I'm excited to hear about endo girls who conceive on their own, or with very low tech medical intervention. I do believe that they may be the exception. Odds are, we may need to resort to IVF to expand our family.

I am excited to say that the lap, coupled with minor dietary changes and acupuncture has alleviated the monthly pain.

Good luck with your decision. I hope you are one of the lucky ones. Please keep us posted on how you're doing.

[taffers]

alliekat75: Thank you so much for sharing your story! I completely agree with you about taking it seriously. I think I'm going to seek out an RE because my doctor (who I love but is not an RE) also doesn't seem too concerned, despite the fact I'm cramping almost every day of my life! :rolleyes: I hope all goes well with you too. :)

[alliekat75]

Taffers,
There is a blood test that is used to "prescreen" for endo as well as ovarian cancer. It is the CA125 test. I've heard that there are some false positives with the test, but it may be a good start for you. You may want to ask your RE.

Best of luck,
Allie

[jenahdawn]

When I had my lap (for a large ovarian cyst) they found a very mild case of endo, and, now that I know the symptoms, I had severe symptoms.

And, as you can tell by my signature, it turned out all right. (Mind you, the only form of BC we've ever used is condoms, but that's for other health reasons)

We didn't start TTC until late April (we weren't really planning to until June...oops!) and June 11 got our BFP.

Good luck!

[taffers]

Thanks Allie- I'm definitely going to ask the RE about it!

Congrats jenahdawn! That's great. What were your endo symptoms? I can't seem to find anyone else that has the cramping almost everyday...most people get it bad around their period, but I have it mildly everyday. I know according to the internet, chronic craming IS a symptom, but I just can't seem to find anyone besides me that actually has that symptom!


~Temre

[jenahdawn]

My "cramps" could start two weeks before my period. (It was extra hard to tell because I had mittleschmertz, too, and was it the cyst, which was 2 1/2 inches) and the GI issues and all. HEAVY heavy periods.

[taffers]

jenahdawn: See, that's the only thing I'm missing...the heavy periods- mine are SO light! I originally thought I had ovarian cancer, which has basically the same symptoms as endo, but my ultrasound showed nothing- hopefully they didn't miss anything!

Well, I just made an appointment with an RE for 9/7/06! It's just a consultation. The receptionist said it was a "fertility" appointment, but it's really not because regardless of fertility issues, I just want to stop being in pain! I'm hoping she won't just tell me to keep TTC because what if the endo gets worse during that time?? Sometimes being a girl is no fun. :rolleyes:

[melg]

Taffers,
I'm always nervous about this too. I searched here to find some reassurance, but of course until we know is there really any?
I have the GI issues a little, and just have had weird periods even when I was on the pill... had an ultrasound a few months ago and it was fine - no other things. which makes me wonder....
My dr said to TTC for a few months and then we'll see.
I really hope we both get pg and don't have to worry about this!
Good luck to you!

[taffers]

melg: I'm the same way! I keep looking for symptoms I don't have so that I have some *hope* that I don't have it...but I'm fairly confident that I do. It's so unfortunate that you have to have surgery to know for sure! My doctor said the exact same thing- TTC for a few months and see what happens, but I'm just tired of being in pain so my DH and I are seeing a reproductive endocrinologist on September 5th for a second opinion. I'm looking forward to seeing what she has to say!

Good luck to you too!

[melg]

Taffers,
Totally agree! There are lots of great stories though of the people who I know who have had it and then gotten better and gotten prego. It helps that we are aware! How long have you been ttc and off bdp? Dr. says that if I was diagnosed this would be exactly what we would do. Go of BCP as close to trying as possible, then ttc. She said even if we *knew* about the problem it would be same course of action unless ttc didn't work for a few months. So.... that's where we are.
I hope your appt goes well. Are you anxiously awaiting for 9/5?
I've seen your sig before a few times - I think we have some of the same friends on LJ - I'm meli_g11 over there. I friended you if you are interested in friending back :)

[Scooter]

I'm hoping she won't just tell me to keep TTC because what if the endo gets worse during that time?? I highly doubt that will happen. ;) I've never heard of an RE say "just keep trying" when a person has a problem or symptoms of a problem! Good luck at your appt.

[taffers]

melg: I went off BCP about 5 or 6 months ago just because I wanted to see what it was like to be off it, but we were TTA. Then, because it was too nerve-wracking (since we weren't ready to TTC yet) I went back on after I *thought* I had AF. But THEN, I started bleeding right in the middle of the BCP, which has never happened to me so I didn't know what to do, and I went off again! That was about 3 months ago, and my doctor said to just stay off and get my body regular again since we planned on TTC'ing soon anyway. So we've been not TTA but not TTC either for the past 2 months...we will officially start this cycle (which just started on Saturday). I was actually kind of bummed b/c based on my chart, we BD'd at exactly the right time this past cycle, but didn't get PG so now I of course think I FOR SURE have endo! Dumb, I know, considering it's unusual to get PG on your first cycle! I'm Taffers on LJ too. :)

Scooter: Thank you. :) I feel like my gyno sometimes blows me off so I keep thinking the RE will tell me we haven't been TTC long enough so she won't do anything!

[jessied1025]

If you don't mind I am going to ask a general question...if you have endo is it normal to have the pain after you ovulate and before your period or vise versa?

The reason I ask is I always have pain on my right side a week or so before I ovulate. I also get constipated during this time. I went to a GI doctor last Monday and he has me on some fiber and glycol to help with the constipation. I mentioned my pain on the right side and said it is A-typical of endo.

I'm on CD6 and am beginning to get the pain on my right side again, but I don't feel constipated (sore but nothing major yet).

What your opinions? TIA!!! :)

[taffers]

jessied1025: You can have endo symptoms any time...all month. But I know that most of my friends with endo only get the cramps and gastro symptoms a week or two before their period starts (so yes, after ovulation). I get my symptoms all month, but it is less before I ovulate, then the symptoms get worse after and until my period. I'm not usually constipated though, it's the opposite! ;) And I don't get a lot of pain on my side- it's mostly pelvic area and stomach cramps.

[gator97]

I have stage 2-3 endo. I have distinct sharp pains on my right side. In the few days before I ovulate and then again before my period. I have them at other times during the month but it gets worse at those two times. I always have it on the right side, and then on the left as it correlates to when I ovulate on the left (every other month). I have constipation around ovulation and then as a PMS symptom.

Taffers- it is a good idea to have an RE do the surgery if that is what comes of it. None of my pain went away after my surgery, fwiw.

[taffers]

gator97: Are you serious? None of your pain went away?! That is BS! What did the doctor say about that? One of my friends who had really bad cramps/pain for the 2 weeks prior to her period had a baby about a year ago and said she hasn't had pain since...so that's reassuring I guess. :rolleyes:

[gator97]

no, still get the pain. It's usually tolerable now so I guess it could be considered better? I haven't pushed the issue with the doctor---which I guess is bad but I've been so focused on getting pregnant I haven't really asked too much about it---just mentioned it. I would say have an RE do the surgery. I didn't. And while I trust by GYN, I wish my RE had done the surgery. he is SO knowledgeable about endo.

Best of luck to you!

[jessied1025]

Thanks gator & taffers for your imput. I really do appreciate it. :)

I usually only get the pain on my right side before I ovulate, my period is usually almost pain free. However, I do spot before I get my period and it is pretty light from time to time. My guess is I have progrestrone issues that need to be addressed. From charting I noticed I have short LP's.

This September will be a year since we started TTC. I am going to give myself one or two cycles with the medication my GI doctor gave me and if I am not pregnant I will be setting up an appointment to talk with my OBGYN and start the fertility testing.

Thanks again and I hope everything works out! :)

[taffers]

Well, I just got back from my RE appointment. I got LOTS of information. I can't believe how much time she spent with us.

She said I *do* have the symptoms of endo (at least I got validation on that one!) based on the pain and spotting...it's weird because I've only spotted once on one day my last cycle, but whatever. However, she would not order a lap for at least another couple months because we haven't been TTC long enough, and there are other precautionary measures that you must take before undergoing surgery since, even though it is not a major surgery, it's still surgery, people still are at risk for death and/or complications and you don't enter into a surgery lightly.

So, I have to get the blood test to prescreen then do an MRI. Because of my gastro issues, she insisted that I see a GI for those issues because a GI will probably order an MRI anyway, and it's most cost effective to do the pelvic and stomach MRI at the same time. AND she insisted that I see a general surgeon to discuss my gallstones...I had a gall bladder attack 5 years ago, was diagnosed with multiple gallstones, didn't have the surgery to remove my gall bladder and have had no problems since, but she said that pregnancy can bring on attacks, and they can't do the lap to fix it when you're PG so I *have* to take care of it now. Blah.

Basically, I'll be at doctors all the time in the upcoming months!!

Oh, and she said that my gastro problems are *not* a symptom of endo!!!! She basically scolded me for researching all of this on the internet (but come on, who doesn't do that) because you get misinformation and/or put yourself into a category incorrectly. Oops.

It went really well, and I'm excited to get whatever issues I have taken care of as soon as possible!

[first-time mom]

hello


I was just curious to see what you all think about my situation. I have a dd that I concieved in one month in 05. The month I got pregnant was the month I was scheduled for a lap to see if I had endo. Well it got cancelled b/c I was preggo:) Well when I had my c-section 2 years ago the OB said I had absolutely no signs of Endo.


Well here I am now cycle #3 TTC for #2 and I am suspecting endo

But my only symptoms are spotting at 8dpo each cycle
and ache in uterus from ovulation until menstral period

I do NOT have
painful periods
or heavy periods

So I dont know if that is my issue or if progestrone is more likely the cause?

[laura]

If you got pregnant in 1 cycle, and you are only on your third cycle for your second, I don't understand why you are considering endo as related to fertility? The "average" couple TTCs for 6 months or a year - what makes you think you have a medical problem? I know this sounds snarky, but I don't mean it that way. I'm wondering if they are extenuating circumstances such as family history, etc?

[first-time mom]

laura-Abnormal Spotting-this is why

. Abnormal spotting lasts for days. It's abnormal to spot days before your menstrual cycle is due. The causes of abnormal spotting vary.One common cause of spotting several days before the menstrual cycle is due is low progesterone. It's the hormone progesterone that helps to maintain the uterine lining for pregnancy and when progesterone level drops, the menstrual cycle occurs. In women who are deficient in progesterone, they will see spotting several days to a week before their cycle is due. This can also cause minor infertility and early miscarriage.

reason spotting may occur could be uterine fibroids, which are fairly harmless, but need to be kept an eye on. Endometriosis, birth control pills are a few other reasons spotting may occur. The most harmful reasons for spotting are possible sexually transmitted diseases and some cancers.

It is advisable if you have re-curring spotting each month to have your health care provider to exam you, just to rule out possible harmful reasons for it and to help you to deal with and/or cure the reasons behind the spotting.



My Ob already mentioned that she *thinks* if I do not get pregnant in six months that endometriosis is why. The abnormal spotting and cramps from ovulation until menstration. She also told me that if I was using a fertility monitor such as the clear blue easy fertility monitor that I dont have to wait the 6-12 mos. Only 3 months and that is where I am. Regardless the spotting I am having is abnormal and causes infertility issues so that is why I came in here to get some input.

[laura]

Gotcha. Well, IMO, endo seems unlikely given that you had the same symptoms previously and your OB surgerically confirmed no signs whatsoever of endo 2 years ago, when you also had no trouble conceiving. That said, it seems odd that your OB thinks that it IS endo given there was no visible evidence. Of course there are ranges and levels of endo and it is completely possible you DO have it... Nonetheless, spotting is a symptom of a wide range of gynecological issues, and I would urge you not to rule out other possible causes. Have you considered PCOS?

[jennylou]

first time mom - I'd advise you to have your progesterone tested first. If it's low you can be prescribed progesterone.

[first-time mom]

laura-I guess u can say that is why I posted here. I just wanted other ppls opinions. I have read responses anywhere from "I had no symptoms of endo, to I had extreme symptoms of endo." I truly have no clue what is going on with my body. I am in the middle of switching OBs because I have been mislead or not diagnosed. All I know is the spotting isnt NOT normal whatever the reason. I just think that with 11 months of 8dpo spotting it should be looked at... Hopefully I will find out what it is whether it be simple or complex. I am not ruling anything out I am trying to gain as much info as possible so I dont go to my apt. with no knowledge. I have no clue about PCOS either, I do ovulate each month and my cycles range from 26-30 days. I am not sure if that matters. Who knows what it is, I am just trying to gather info. I didnt mean to offend anyone.

Jennylou-with the current OB I called and claimed I *thought* I had low progestrone so they took my levels at 9dpo this cycle and called me back saying I was ovulating(which I already knew) I then claimed I knew that and I was worried about low progestrone after ovulation and without asking where I was in my cycle they claimed it was normal?!!?! DOnt they have to know where I am in my cycle. I am in the process of switching OB's because of this. I have read u are supposed to be tested at 7dpo for progestrone?

[jennylou]

Yes, progesterone is typically tested at 7 dpo to test for ovulation. Progesterone does tell if you've ovulated, so that's probably why they said you did. :) I believe anything over three and you've ovulated, though most docs like to see 10 on a natural cycle and 15 on a medicated cycle.