Endo?? What should I do now?

[Des_a_rae]

Hi All, I think I have endo.  I've been married for almost 10 yrs, trying to get pregnant for the last 6.  I have really bad periods.  Late, early and never on time.  They are misreable either way.  I hurt constantly in my lower back.  I've had pains in my thighs..my hips..i'm sorry for the tmi but my anus..my lower stomach of course. The pains are so bad i've blacked out..i've thrown up..i'm shaking and it went from taking tylenols to something more aggressive like a pain pill..then to taking a pain pill and hurting still so bad that i'd have to sit in the hottest water possible..in the tub so the hot water could help relax my muscles for the pain pill to kick in.  This month in particular though i've bled through the month inbetween my period on 3 different occasions.  Very little blood ,thought ...prayed actually that I was pregnant but I wasn't.  I started 3 days late and i've never bled so much in my life.  I was having to change every 2 hrs with horrible blood clots.  I've realized the older I get the worse it gets. Endo runs in my family..my aunt on my dads side had to have a hysterectomy when she was 28 because of it.  I have a couple of  questions...kinda lost here.

1.)  Do you think it's endo?  If not, any ideas??
2.) How do I find a specialists?  I've never been to the dr. with this.  I live in Alabama.
3.) What kind of treatment is out there for endo..and does it work?

Thank you so much in advance for the help...I really appreciate it.
                                                                                                      Des

[shay_shay26]

hi I have endo and I've been fighting it for two years now it took them a whole year to find da problem. it's very painful the doctors act like they know our pain and really dont. i cant get any help or relief and i have three kids that watches me cry cant move or interact with them its so bad that everytime i go to the hospital my lil girl starts screamin and ready to fight cause she thinks their hurttin me cause of the pain they see me go through. my main concern is that i took a test today and it says positive will i be able to carry the baby am i going to be in pain for nine months if it is true im scared i need sum advice sumone help me pls

[Des_a_rae]

Candie,

      UGH!! I was going through the same thing.  Every Christmas, Easter, Thanksgiving it was "so, when are you two going to have one??" and in the beginning my first response would be "when the lord blesses us with one I guess" then I became angry of constantly hearing it and i'd say.. " I dunno..I mean it's not like we're not trying" and now it's like..they don't have a clue what we're going through..so i've told them.  Family just thought.."oh they're not trying or they're not ready".  My niece on hubby's side used to be the worlds worst.  She has 2 kids of her own...we love them all like they were ours but she just didn't understand until now.  Now she calls me and says "how are you feeling today?" and she's so supportive of me going to the dr. to get help.  My mom is the same way...she now knows the pain I go through.  I used to hide it..I always thought.."oh period pains they'll pass" and try to live a normal life for those 5 days until now that it's SO bad..I cannot hide it at all.  Unable to walk..to sit..pain so bad ..throwing up..and it's really that bad during those 5 days...but after my period is over..up until it's due again I have constant lower back pain..thigh pain and sometimes I have sharp pains down my thighs.  Anyways, enough about pains..lol.  

It's hard being optimistic when you've been through so much already.  I try to explain to everyone why I expect the worst and hope for the best.  It's easier that way.  I mean..what worse could happen??  

Your old ob/gyn..omg does she smoke crack?? lol sorry!   Sometimes you can't explain infertility??  Good Grief!!  Wow..she seems so supportive..NOT!  I'm SO glad you're going to someone else.   I see you have 2 weeks as well.  That's what I have as of today.  Woohoo..finally!!  I hope you keep in touch.  I'd really like to know how you're doing..and how the future looks for you.  I'm trying to be hopeful and I look at it that just being able to go the dr. and getting help is a great.  Having a child..is a blessing.

Take care..i'm sure we'll talk again.  

                                                       Sincerely,
                                                            Desarae

[candie429]

Thanks so much for your kind words Desarae.  I really appreciate it.  I know, I've heard that same phrase before, just quit worrying and it will happen.  Easier said than done!  Now that we've been married for 5 years, people are really starting to question it and everytime we see an old friend/classmate that has kids, they're like, come on, when are you going to start having some?  It just blows my mind how insensitive people can be.  People just don't understand that sometimes it's not that easy!

Anyway, I already have a referral into my insurance for this specialist, but they haven't approved it yet and I'm not optimistic they will.  The bad thing is, my regular OBGYN was never very sensitive to my infertility and would never even consider that I had endo.  She was VERY unhappy with my decision to see a specialist because in her words, "sometimes you just need to accept that infertility is unexplained and in-vitro is the only option."  Are you kidding me?!?!?  My husband was with me at that appt and we both decided we were done with her.  So, along with seeing the specialist, I have also called a new OBGYN to be my "regular" doctor and will be seeing him in 2 weeks.  I've heard good things about him, so I'm hoping he'll be more open to my concerns.  I'm also hoping he'll know of a good doctor that does laps for endo in case I can't go back to the specialist.  Sorry, I know that's all so confusing!  :)

Anyway, I just thought I'd let you know what's going on with me.  I'll be anxious to hear what your doctor has to say and hopefully you'll have a plan in place soon to overcome all of this.  I know what you mean about the monthly emotional roller coaster, and it definitely doesn't help when you're also dealing with pain, irregular cycles, etc.  Take care and be sure to keep in touch!  

[Des_a_rae]

Candie,

  I'm sorry you're going through the same thing.  I never really understood the pain and everything that goes along with Endo when my aunt was going through all of this..but now I do.  It's horrible and I feel for anyone who has to go through such.  You said your insurance doesn't cover him?  Can he recommend you to someone else that your insurance does cover?  

  It's really tough not being able to conceive.  I went to a gyno once and she was right.."your period becomes your worst enemy".  Since mine are never on time if I was about 4 or 5 days late i'd get my hopes up..checking online about pregnancy symptoms things like that..and when i'd do that, it'd never fail..i'd start.  I'd be depressed for about a week or 2..then i'd get over it.  My mom used to tell me.."when you quit worrying about it..it will happen".  She realizes now..it's not going to be that easy.  I wish us both the best..and every other woman out there with the same problems.  

   Thank you for your reply..god bless.
                                                            Sincerely,
                                                                 Desarae

[candie429]

Wow ladies, so much information!  

Des a rae - I think it's great that you'll be seeing a doctor about this.  I too have had endo symptoms for years and could never get my OBGYN to take me seriously.  Once we started TTC, it really concerned me and now we're nearing 3 years and no baby.  :(

I finally saw an OBGYN that specilizes in infertility and he did a very thorough pelvic exam where I actually jumped in pain at times depending on which direction he pushed.  Very scary!  Poor DH left the room and when he came back in, I was in tears.  So, the doctor said he's 90% sure I have endo.  He's recommending a lap, but of course my insurance doesn't cover him.  Another bump in the road!  It's all so scary and overwhelming, but the more I look into it, it really seems like the lap is the way to go.  I'm like you, just ready to feel better, and so ready to start our family!  Hopefully we'll both get our prayers answered soon.  All the best to you!  :)

[bamamom02]

My uterus was tilted as well.  I always had horrible low back pain before and during my periods.

I hope you are able to get in sooner!

[Des_a_rae]

YES, i'm losing my mind.  I forgot to even post the link.  UGH I hate dealing with all this pain and stuff I can't remember half the stuff i'm even doing..or going to do.  I'm trying to get in sooner to the dr.  I'm hurting alot more now..every day.  It's tolerable..but i'm worrying more too.  It hurts to sit down, feels like my uterus is the size of a volleyball and it's being pushed up and back towards my lower back. I have a tilted uterus anyways..that might be why I feel it in my back but it still feels like the size of a volleyball.  I called and asked if they could get me in if they had a cancellation..so hopefully i'll get in sooner than May 6th.  *Fingers Crossed*

Website is..   http://www.nichd.nih.gov/publications/pubs/endometriosis/sub2.cfm

  Take Care All !

[Des_a_rae]

I just wanted to post this link.  I've read so many things about endometriosis here lately..and this was one of the sites that had quite a bit of information  on endometriosis...as well as the ones posted up there ^^^ for me.   I hope it helps anyone who's trying to learn anything about it.

[Des_a_rae]

Hi annie,

  Yes I completely agree on the Lupron.  I've read all the side effects.  I've already told my husband..my mom and myself that I would never take the Lupron injections.  With those side effects I would have to deal with them for a month.. 3 months..or the length the injection is for.  I can't just quit taking it as you could with some sort of pill. If this Dr. that my friend referred me too doesn't sound too "concerned" then i'll just find another doctor...or..go to a specialists myself.   I'm hoping if he's not real familiar with endo he'll be honest and see it in my best interest to send me to a specialists.  The way my friend talked he was a great dr. and easy to talk to..and really helps in any way possible.  She was having problems getting pregnant and he sent her to a specialists in Birmingham.  I regret having to go through another period before I get to see him though.  I dread that every month.  

  I have the same pains..right over my ovaries and it makes me wonder if i'm ovulating as well.  I "think" I am but since you said it was endo..it might be what's going on with mine.  I don't know.  As far as the advil..etc..  none of that works at all for me anymore.  I can't even get 3 at a time to work..so i'm not going to try and take more.  I just have to knock myself out and sleep through it when it gets really bad and that's not something I want to have to do for the rest of my life.

May 6th though....I wished it would hurry up and get here already.


  Thank you again Annie, so much.  Take Care...God Bless!

[Des_a_rae]

UGH..I accidently put that I go to the Dr. on April 6th, but it's actually May 6th.  The long wait..blah..plus hubby and I had sex last night..and again I bleed.  Not alot..but enough there on the toilet paper when I wipe. I can't stand this wait.

[Des_a_rae]

Bama,

     I read some of the symptoms of pcos..not sure if that's it or not.  I'm sure though you can have one or 2 symptoms without having all of them to have pcos.  There are times though I have noticed it's like I can feel myself ovulate.  It hurts so bad.  I know I joke with hubby and say it feels like something the size of a cantaloupe being squeezed through a toothpick...but that's how it really feels for about 2 or 3 days.  I don't always feel that feeling but there have been months that I have felt it.  Makes me wonder if during the time I don't feel it if i'm ovulating or not..and if the times I do feel that pain..if the egg is even passing through.  I am definitely going to tell him everything though.  I feel that's why he's there..and even more..that's why i'm there.  Thank you for your support and all the help with your replies.  I'll definitely keep everyone posted as soon as I get to the Doctor.  I just dread having that one last period before I get there.  That should come towards the end of the month.  Ugh!!  Thanks again.

                                                                            Desarae

[bamamom02]

Yes, I would tell the doctor you are seeing EVERYTHING-the bleeding, the pain....lay it on him/her.  It does sound like endo but the bleeding in between periods sounds like it could be PCOS from everything I've read over the years and you can have both PCOS and endo-I do (or did-I had a hysterectomy in Feb 2009 due to endo/chronic pelvic pain:  my ovaries were removed as well).

I live more northwest from B'ham I guess you could say:  I live in Russellville.  

I hope you can find some solution that will work for you to decrease your pain and misery and help you bring home a baby!  KUP!

[Des_a_rae]

Hi bama,

   Thank you so much for your reply.  Lord I dont know where to begin.  I'm so nervous, scared and really confused.  Last month I had a really bad month, not only because I have god awful periods and pain but I was bleeding inbetween my period.  It started a week after I stopped and it was 3 different times through out that whole month  until I started again.  Now here I am in the same situation.  I started on the 19th of March and on the 30th I noticed blood again.  Not enough to wear anything at all but there when I wiped.  That happened again yesterday(April 1st.)  but this time instead of being red/pinkish it was more brown.  I can't stand the wait and worry until I go to the Dr. on April 6th.  I've bleed before during my period but that was like maybe twice and it was when hubby and I had sex.  Now it's becoming a monthly thing it seems (minus the sex)..these last 2 months.  I think when I go to the ob/gyn i'm just going to tell him everything.  From the pain ..constant lower back pain, lower stomach pain..pain in my ovaries that feel like they're going to burst, pain that feels in my uterus..the pain that runs down my thighs all of a sudden, it's never ending pain.  Plus the bleeding now inbetween my periods and trying to conceive for 6 yrs plus the "pre-term" miscarriage in 2000.  Since i've been reading up on endo..it said I might want to keep a "pain journal" which I have since August of last year.  I'm definitely going to take that with me.  I have never been to the Dr. with this before and I don't want to just bust out all of this pain stuff..scared of freaking him out.  Do you think I should just tell him all of it since it is going to be my first  visit?
  As far as the Lupron injections go..I have a very very low tolerance to medicine.  I cannot take anything other than tylenol before bed if i'm sick because I wake up have uncontrollable muscle spasms.  That's a BAD feeling when you wake up to that and you can't stop it.  Any other cold/sinus medicine even if I take it during the day makes me anxious, nervous..then i'll switch to being a cry baby for no reason.  It's crazy and hard to explain.  Anyways, what i'm getting at is if I take this Lupron injection..it's in there until it goes away.  I can't take it back..I can't get rid of it..and if those side effects really mess with me..i'm just going to have to deal with it..until it's ran it's course.  Not something i'm certain about.  I know he'll probably talk about Birth Control but I did that when I first got married..for about 3 months.  They made me have really bad chest pains.  Then I stopped..used condoms from then on out.  Thinking the whole time.."don't want to get pregnant just yet".  NOW almost 7 yrs after we stopped using protection I never thought i'd go this long without a child.  Anyways, please let me know what you think I should start off with at the Dr.'s office.  I don't want them thinking i've lost my mind.  I'm just so sick of dealing with this month after month.  I know it's not going to be fixed over night but i'm ready for this "journey".  

  You said you live in Alabama also..2 hrs from B'ham is that north, south, east or west?  I live in Gadsden.

  Thank you again for the reply....I really really appreciate everyone I get.  Take Care...God Bless
                                                    Desarae

[bamamom02]

Desarae,

The only 100% way to diagnose endo (endometriosis) is by laparoscopy.  The CA-125 test can be used but isn't accurate and it is usually expensive:  plus if you get a high number, you are going to be scared out of your wits and may face surgery anyway.  Ultrasounds can tell if their is fluid collection or something but it isn't accurate for diagnosing endo.

You definitely need to speak with your ob/gyn, especially with the heavy bleeding you've had.  

Also, you might want to ask for blood work for PCOS (polycystic ovarian syndrome).  PCOS can cause your periods to be irregular as well as heavy bleeding.  An excellent source on PCOS is this website (sorry, will have to copy and paste the link):  http://www.inciid.org/faq.php?cat=complementarymed&id=2

As far as treatments for endo, one that is common is birth control pills BUT since you have been trying to get pregnant for 6 years, you don't want them ;)  There has been some research on Femara being used to treat endo but I'm not familiar with it.  I belong to a fertility web site and saw several ladies that did that but never learned many of the details.
A common treatment is Lupron Depot injections.  Lupron is a medication that you can get via a shot in your hip/butt that is given either once a month or once every 3 months:  some women take it once a month for 3 months; some take it once a month for 6 months, etc.  What it does is put you in a chemical menopause to allow the endo to shrivel up and die basically.  Endo loves estrogen and progesterone-those lovely hormones that make us crazy every month.  Lupron stops the production of estrogen and progesterone.
Lupron does have side effects.  You won't have a period while on it.  You can have hot flashes, night sweats, vaginal dryness, weight changes, bone changes, mood swings-definitely not pleasant but it can be very helpful.

I've done Lupron twice in my lifetime and was able to conceive 2 pregnancies because of it (at least that is how I feel).

I see you are in AL:  I am too.  I'm 2 hours away from B'ham as well.  If you choose to go to B'ham I think you'd be in good hands there.

[Des_a_rae]

I do have such pains.  Unfortunately i've had them for yrs. now.  I'm going to see an ob/gyn that was recommended by a nurse friend and i'm going to ask for laparoscopic surgery. I feel after reading everything i've read and talking with my aunt that has endometriosis..I feel deep down that's what I have. Annie was thoughtful enough to post me links to websites so I was able to find a specialists in Birmingham, Alabama.  That's only 2 hrs away for me and if that's what it takes..i'm going no matter what.  Thank you for the reply.

Sincerely,
  Desarae

[Des_a_rae]

annie,

   Thank you for the websites.  I checked them out and found 3 specialits in B'ham and not only that but I also found a webpage that was more in depth than any other websites i've found about endometriosis.  I saved these sites under my favorites for futures uses.  I have an appointment with a ob/gyn on the 27th of April and that's if she don't deliver.  She was recommended by a friend of mine who's a nurse.  If she goes in labor and has to reschedule i'm going to see a different ob/gyn who was also recommended 2nd to her because if she goes into labor they'll reschedule me and probably wind up seeing someone I didn't want to see to start with. Thank you so much for all of your help and as soon as I can get out of that Dr.'s office i'll let you know what they say.  Thank you again.

Sincerely,
  Desarae

[asta11]

If you have such pains, you have to see specialist.....I was so healthy...but January 08 and maybe a few months before started feeling constipated, lower back pain which I never had before,tons of ultrasounds and nothing specific.....in sept 08 i had laparoscopy and than they found out i have endometriosis. You have to have laparoscopy,I don't think ultrasound can be so accurate....... so tissue can taken for pathology if it is endometriosis, if there is something else so they can see. Laparoscopy was fast and recovery too............and even if you don't have endometriosis or something else they can diagnose what is wrong with you. Don't be afraid to see specialist but be sure you pick good one.......And something positive at the end....in some cases if endometriosis tissue is removed,laparo helps some women get pregnant faster.....good luck......don't wait.....

[Des_a_rae]

Thank You Very Much Annie, you too.

                            Desarae

[Des_a_rae]

annie,

   I completely understand about a specialists.  What I hope will happen is I go to a regular gyno for a yearly checkup..explain my problems and hopefully in the very near future they will send me to a specialists.  I definitely want the surgery if it is Endometriosis.  Whatever it takes to slow this down..remove most if not all of it.  I going to research this as far as I can, Dr.'s..treatments..medicine..whatever I have to do.  I'm just so determined to get over this already..move on.  I'm ready for a family.  Thank you so much for all of your help.  I just wished that it was easy to pick a dr. and him/her know everything and fix everything.  I know that's only a wish though.  Thank You Again. God Bless!

Desarae

[Des_a_rae]

Lea (also my middle name)  ..tysm for your reply.  I wanna say congratulations on the pregnancy.  I am curious though that after the surgery was everything okay?  Whatever it takes I am definitely determined to get this all fixed.

Angie, it's a comfort to know that I don't have to spend most of my time trying to find a specialists.  I'm okay going to a ob/gyn and yes I have to agree..even though i've never been to the Dr. for this..I have realized that over time..it's only gotten worse.  I need to go as soon as April 1st rolls around because i'm afraid there's going to come a month that i'm going to hurt so bad and nothing is going to work unless I keep myself knocked out.  I'm not good with medicine..I have a very low tolerance so the only thing I do have is a pain pill..so I have to half it and if that doesn't work..if i'm still hurting I take the whole thing and even then I can still feel the pain but the pill is knocking me out.  That's the only way this past month that I got through those 5 days. Tylenols, Ibuprofens none of that even phases it anymore. I've also noticed I bled ALOT more this time.  Maybe because of the medicine, i'm not sure.  Thank you so much for all the info.  I'm so glad I have someone like yourself and all the others to talk to on here.
                                                        
Desarae

[Angie7980]

Hey Desarae, I just wanted to tell you one more thing.  The doctor that finally listened to me and did the test to see if I have endo was just a regular Ob/Gyn and the doctor that did the surgery was also just a plain Ob/Gyn.  It would be great if you could find a specialist, but if there aren't any around any Ob can do it.  It's a very common thing and that's why it surprises me that so  many doctors don't want to diagnose the pain as endo, they don't around here anyway.   My doctor told me that when they opened me up everything was stuck together, they were able to get everything apart, but the endo is still pretty much on everything.  That's why I hope you do go to the doctor as soon as you get insurance and find out what's going on, the longer you wait the worse it's getting!  Let us know how everything works out for you!  
Angie

[Lea2001]

I agree with Angie... it really hard to convince your Gyn. that you have it.  I know I had it... told my Dr. and he said that I didn't since the pain did not cease when begin bleeding.   I continued to have paid throughout the 5 days.   He was wrong... i have endo.  But it took a referral to an RE who listened to me and heard what I said.  It also took another year of infertility and IUI and injections.  The RE did the lap. and found that I have severe endo that was deeply rooted throughout my reproductive organs.   She removed as much as she could, and after three years of infertility, we concenived naturally the next month!
I really wish I had been more persistant when I met with my Dr.   Don't make the same mistake... it's worth pursuing.
The only real way to diagnose endo, though is with a Lap.   And Dr. don't want to do exploratory surgery.

[Des_a_rae]

Hi, Annie, Angie

  Thank you so much for your replies, it's so nice to get them.  They are helpful in sooo many ways.   I'm just sitting here crying reading them.  All this time i've felt so helpless and felt like it's something i'm going to have to deal with for the rest of my life and finally for once after reading these wonderful post it's like there is a light at the end of this agonizing tunnel.
  
  Annie, I wish you the best of luck at conceiving a child.  I'm so glad and hopeful to hear that the problems have ceased after surgery.  I'm just wondering on how to find a specialists.  I live in Gadsden, Alabama and the nearest "big city" is Birmingham or Huntsville.  My mom thought it would be a better idea just to go to a gyno for my yearly checkup and then let him send me to a specialists.  I don't know if or how fast that would even happen.  

  Angie, ty for replying. I hope as with Annie you're blessed with a child and please let me know what the Dr.'s say about your fallopian tubes.  I wish you luck and I send you prayers.  
When I go i'm definitely going to ask for the CA-125.  I'm just so scared by the pain that I have..that I have one of the worst cases ever and i'll never be able to have a child.   At times I feel like my ovaries are going to burst and sometimes like yourself I wonder if my fallopian tubes are even open.  I think they're ate up with endometriosis..or cycts or something since the pain is only getting worse.  I mean, 6 yrs..no baby yet??  I did have that "pre-term" as they called it..miscarriage in Oct. 2000 and I was about 2 weeks late when that happened.

  I hate to admit it but after going through this month after month..year after year I just expect the worst and hope for the best.  I think i'm going to be diagnosed with some kind of uterus cancer or ovarian cancer.  My Insurance is in effect April 1st and then i'll make that appointment.  For now i'll just do research on the stages of Endo. and look up the treatments and study more on that.  Thank yall so much again, I really appreciate the replies.

Hugs & Prayers.
                                            Desarae

[Angie7980]

Desarae

I would tell you doctor everything.  It shouldn't be considered pre-existing because you've never been seen by a doctor for it.  I know when I finally found out about my endo my insurance was very good about paying for it.  I explained to my doctor exactly what it felt like, when it started hurting, everything!  They always just brushed it off as "cyst pain" and some of it might have been because of my cysts, but I know most of the pain was from the endo.  I even told the doctor it ran in my family.  Sometimes you just have to tell the doctor to do what you think is right, even if they disagree.  After my doctor got my CA-125 back she took a second look at my ultrasounds and said she could see it, but I guess it's very hard to see by an ultrasound and can pretty much only see it if they know it's there.  
I haven't had any pain since my surgery, but I'm still trying to get pregnant.  I go see a specialist next month to make sure I don't have any endo in my fallopian tubes.  Just remember, doctors hear a lot of crazy things!  Don't be embarrassed or nervous about it, if your doctor is good at what he does, then he is there to listen to everything that is going on!  Just don't let him brush it off!!  If I would've found out that I have endo 4 years ago when I first when to my Ob/Gyn then maybe it wouldn't have been so bad and I would have a child by now!    
The doctor you're thinking about seeing sounds like a great doctor, not too many doctors have good bed side manners these days and it really sounds like he does!  Let me know how it goes and ask me anything, I'll keep you in my prayers!!

Angie