Could this be endo?

[DLA]

Am trying to figure out if what I'm feeling could really be endometriosis.  When I told the last gyn my symptoms he ignored me and said it was nothing.  My sil had endo and she thinks that is what's wrong with me.  Here goes.

To start with I have no thyroid and have undergone treatments and bad levels of this for many years and am now very over weight.  Also have no gall bladder.  List of other problems (just to be able to rule anything else out) are:  PCOS, diabetes precursors, pernicious anemia, arthritis, insulin resistant, think I'm missing something, but can't remember right now.

In June of last year my thyroid finally got some what regulated and I had 2 normal consecutive periods on 28-day cycle.  After that I started bleeding about every 1-2 weeks lasting in duration of about 8-10 days.  I have very bad cramping and very huge clots that some times did not pass on their own without help.  The last time I had intercourse I was in so much pain I was writhing on the floor afterwards.  Just getting the least little bit aroused causes a lot of pain around my pelvic area.  Orgasms send me into pain for days.  I am constantly bloated, but when on my periods or bleeding my stomach is hugely distended and tender to the touch.  My stomach hurts so bad all the time that I can't stand for my son to lean against my stomach when he sits on my lap or for him to run and grab me in a hug.  Have a pulling sensation from my belly button to pubic bone all the time when I try to stretch or exercise.  When I'm on my period the pulling goes from my ribcage down.  Have painful bm's and sitting here seems to cause much pressure there.  Also am very fatigued, but don't know if this is from something else.  Am slightly hypothyroid right now.

In Oct. I went to a new gyn and he just ignored me when I tried to tell him how I was feeling.  The exam hurt so bad I was crying already and then he did a endometrial biopsy and I just about came off the table in pain.  He accused me of basically being a wuss and having a "very low pain tolerance".  Also had ultra-vaginal ultra sound.  This is when the PCOS was found, but no other problems.

He put me on Metformin for the PCOS and also for the insulin reistance.  Has made my periods less frequent and not nearly as heavy as they were, I can now leave my house during them.  But it has done nothing for the pain.  Do not like to take even OTC pain meds as my liver has enough to deal with in just all my meds and supplements I already have to take for other problems.  So until I'm actually on my period I just tough it out, but it's really wearing me down.

Does this sound like endo or is this just something else?  Have an appt. with a new gyn, that's all he does, on the 27th.  Am really in hopes of finding the answer to this and being able to get on with life once again.

Thank you for listening and sorry if I was too graphic.

[DLA]

I have an appt with a gyn on the 27 that comes highly recommended from some friends of mine.  He was wonderful and patient with my friend's 80yo mother.  He's about 60 so he's not one of these young punks straight out of med school who thinks he knows everything b/c he's a dr.

Am keeping my fingers crossed and praying a lot.  Will let you know what happens.

Am so anxious to see him I keep wishing it was today!  LOL

[juliesmom]

Amen sister!  For me it was a blessing to just be able to put a name to what was causing me so much pain.  Take comfort in the fact that you are not crazy, you're in pain and pain is never "normal".  Any doctor that won't even listen to you isn't worth your time.  Ask around, surely there are other women that you know and one of them will be able to recommend a good, caring and competent gyn or RE who is worth your time.  I went to 3 before I found the right one and he is wonderful...caring, compassionate and gentle.  A rare find in the medical field these days...trust me, I work in a hospital and also work as an emergency medical technician so I've seen it from all sides...there are good doctors out there who still care about patients, not just the almighty dollar.  Good luck, keep us posted.
Shelley

[DLA]

Thanks.  He didn't say it wasn't from an u/s, he wouldn't even listen to me when I tried to tell him something was really wrong with me.  Found the info on line of course.  First I have to find out what else is wrong with me and then try and get some one to listen and finally run tests to get dx.  Is a really twisted deal that we have to dx ourselves.

I've been sick for 8 years now, so my theory is hurry up and get it out, killed, or treated so I can get on with my life.  My mom thinks I'm crazy b/c I can't wait to see the new gyn.  Am actually looking forward to surgery if it will make me feel better.  But she doesn't understand, she's never been sick.

I have a huge list of medical problems, so no telling what else is going on.  But if they find something else wrong they can take care of it while they're in there.  :)  Don't need it, spare parts, get rid of it.  lol

[juliesmom]

To be sure that it is endo you definitely need a surgical diagnosis.  Any reputable gyn should tell you that and offer to do a lap or send you to a reproductive endocrinologist (RE) to have it done.  After a surgical diagnosis of endo you've got some options, but since you say you're past child bearing years a hyster might be the best way to go.  I swear, the more I deal with this stuff the more I find that I feel, for myself anyway, if it's not working and it's causing me pain...yank it out!  Your symptoms sure do sound like endo, maybe some other stuff too, but don't accept that someone told you it wasn't just from an ultrasound...that's a crappy way to diagnose it.

[DLA]

Thank you for all the info.  Read the symptoms list on that sight and man I can almost check them all off.

It's funny that on there they say that endo can lead to autoimmune diseases, thyroid in particular, and on the thyroid and autoimmune sights they say that they are the reason for the endo.  Who knows.  Know that I have always had really painful and heavy periods, but always assumed this was probably normal.

Well, if the new endo decides I need the lap to check for it and it's there I'm ready to get rid of the whole kit and kaboodle.  I'm past my child bearing time and with all my health problems am a good candidate for early menopause (wouldn't be TOO early considering my age) anyway.  

Am just really desperate to be well for any period of time.  But wishing I could find the magic bullet to make me well again.  It's been a VERY long time since I've come any where near it.  Would probably think something was wrong if I did feel good.  ; )

Thanks for your time.   I appreciate it so much.

[bonnie23]

As I have posted before on threads on here ultrasounds are not the best thing for looking for endo as it can miss it all together. I went through a ton of ultrasounds and was told I was fine. After years of pain I got a lap done and I was told I have endo all over the place and that it is the worst case my doc has seen in years. The best thing for you is to wait to see what your new gyno has to say since you do have other medical issues. Your symptoms do sound a lot like endo though. I know when I am going to get my flow because I always feel like I am sitting on glass which lasts a few days into my period and there is always pressure there. I also used to have pain after orgasms and it often lead me to be bloated and curled on the floor for a few hours. Bloating, pain during and after intercourse, and painful bowel movements or pain in the butt region are all major signs of endo, however bloating and pelvic pain are symptoms of  PCOS as well. How where you diagnosed with PCOS?. Since you do have so much pain during your exam (many women can't handle any pressure from exams with out being in pain, even the use of tampons is painful) I would tell your gyno this before hand and make sure that he/she takes their time and that they know that if you need them to stop that they are going to do so. Since you have had a lap years ago you must know what it is all about and I think that after your doc does a physical exam on you and you to talk about your medical history I think it would be in your best interest to have a lap done again. When they do the lap they can look for cyst as well since you have said you have PCOS, you may have cysts other places and when they break it could be causing you pain. I will give you a link to the best endo site on the net www.endo-resolved.com. This site will give you more informed details on endo as I can't write a lot on here. I also wrote on a few other threads so take a look. I hope this helps a little and hang in there :)

[DLA]

No, I've never had a lap.  Other than the one to remove my gall bladder and that was many many years ago.

According to everything I've found out the Metformin should have the symptoms of the PCOS under control.  And the only time that people complain of bad pain is when one of the cysts bursts and then the pain is in a different place and comes with some really bad discharge.

[ticked]

I too had bad pains with sex and orgasms and i have endo.  I am not sure if what your feeling comes from PCOS because I am not sure of the symptoms for that.  People can have both. have you ever had a lap done?