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211043 tn?1337050701

More bad news.... :o(

I went to the doctor today (a week before my post-op was scheduled) because I was concerned since two days ago my pain and bloating was getting much better, and then all of a sudden yesterday my pain had actually gotten a little worse, but moreso because my bloating got A LOT worse.  I was worried that maybe some internal bleeding was going on or something.  All of that looks good and is OK - can't really explain why I'm so puffy.  

So I got the breakdown of the info on my lap and D&C.  The info from my D&C/hysteroscopy was what was disturbing, not to mention what I had to deal with afterwards.  He was very baffled (he literally said he was baffled and that he'd never seen this before) because during the hysteroscopy they saw this net-like webbing of adhesions/scar tissue INSIDE my uterus.  I told him that for years I've been passing these chunks that are extremely painful when they happen, and every doctor always said "it's just a blood clot" when I would always insist that these things were more like tissue, and sometimes bumpy and yellow.  He said that could very well be this webbing breaking up inside.  He managed to break it all up when he was in there.   He also said something very unusual was that some of the tissue from the D&C was DEAD - called "necrosis".  He also couldn't tell if one of my tubes was open, so he wants me to go on the pill for 2 months to give the inside of my womb time to heal from him taking out all the scar tissue, and then do an HSG, and then start my fertility treatments again.  He said the HSG would tell him if this web thing is coming back or healed or not, as well as if my second tube is open.

After hearing all that and trying to keep my $hit together, they left me to go prep the ultrasound room cuz he wanted to check me out to make sure about the internal bleeding.  The u/s room was in use, so in the meantime, while trying to absorb everything he just told me and trying to tell myself that my womb is not completely dead inside (literally) I had to overhear (clear as day through the walls) a woman I saw in the waiting room who must've been about 8 months pregnant getting a sonogram in the next room.  Asking about the position of the baby and her husband was with her and they were all excited.  When they went out into the hall some other passer by was congratulating them and I'm just on the other side of the wall/door, puffed up and achy from my surgery, just absorbing that on top of everything else - the endo, the adenomyosis, the PCOS....my womb is not sounding too ideal on the inside either.

I'm so sad.  I'm also frustrated because I'm angry that my last doctor who did my first lap refused to do a D&C (she made my mom feel stupid for asking if they were gonna do one, like NO doctor did those anymore!) - and she did not do a hysterscopy either.  If she'd done either of those things, I wouldn't have wasted months and months of treatments with my IUI and IVF, and probably wouldn't have had to endure my miscarriage.  And the doctor BEFORE that one wouldn't do the lap, so I wasted 7 months with him on clomid - not knowing I had endo.  So the only positive I can take from this is that I FINALLY feel like we have all the pieces of the puzzle and know EXACTLY what we are up against.  He also kept saying over and over "just a boggy, boggy uterus" (almost sounding disgusted) - apparently that's some term connected to the adenomyosis.  It's just frustrating that it's taken nearly 3 years and four doctors to finally get here.  

Not feeling too confident about that future BFP....
14 Responses
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Avatar universal
Im continue praying for you..just hold on..God will take care of you just trusts HIM!
Helpful - 0
325477 tn?1250551309
I am sorry for everything you had to go through, but think on the bright side- your doc said that you can go back for fertility treatment again!!
I had PCOS all my life, and still, I am pregnant! As long as docs don't lose hope (and it seems like you still have MANY CHANCES), you should think positive knowing that you can get pregnant! Seriously!! When you are confident, miracles do happen!!
Helpful - 0
582963 tn?1483452520
sorry to hear ........like I like to say is every DR gives their opinion but only God knows how to opperate on them.....God is our DR when there are no answers so pray to him that he fix the problem and heal you!! I pray over your like I like to call it (stubborn woman parts) and pray that you are healed and that the next time you go in the DR office that they cant explain that everything is normal........(i believe in miracles)  ....
Helpful - 0
211043 tn?1337050701
oh maybe you were referring to the recent hemorrhage - we're almost certain that was a miscarriage, not my period
Helpful - 0
211043 tn?1337050701
Alikat:
my periods have lightened over the past 2 years (as I said above) - and my doctor told me I had interuterine synechiae (also mentioned above) - which IS simply another term for Ashermans - I don't know if you read the first part of this post either.  The adenomyosis is separate.  I ALSO have a web of adhesions covering the INSIDE of my uterus - that is the asherman's part

Like anything, it also presents itself in varying degrees - not everyone loses their period completely.  That only happens in the most severe cases when the scarring is so bad that the cervix gets blocked.  Some women can even have very mild cases where the scarring is only on small segments of the inside.  
Helpful - 0
Avatar universal
asherman's is completely different from adeno, and typically with asherman's you get no period or very light period, not a heavy period.  
Helpful - 0
211043 tn?1337050701
I've found out a lot more info about this new diagnosis.  Apparently it's called Asherman's Syndrome.  The odd thing is that it mostly happens to women who have had many D&C's or a D&C to remove a miscarriage, or some rare infection from Africa involving slugs in water, or genital tuberculosis.  I know for a fact I can cross the first two off, and I'm pretty sure the second two as well! :o)  

The only other thing it says is that sometimes it can be caused by an infection in the uterus.  I started passing those chunks of tissue about six years ago - back then I didn't have health insurance.  I can remember going to planned parenthood and crying to them about how much pain I was in, and begging them to help me, but without expensive testing there wasn't too much they could do.  Blood tests and u/s's are expensive without insurance.  Anyway, it is possible that maybe I had some sort of uterine infection back then and never knew about it.

There are other things coming together as well.  Apparently it can cause the blood to back up into the pelvic cavity - which is exactly what they found in my lap.  This is because it decreases the volume of the uterine cavity.   Apparently if this Asherman's gets bad enough it can actually seal together the walls of your uterus!  The other thing is that over the past year I just assumed that I wasn't getting my period because of my PCOS.  I found it strange that even after going 2-3 months without a bleed, my periods were lighter.  This can cause that as well.  It's because it is literally taking the place of where the endometrium is supposed to be, so there isn't as much blood (that and the rest is backing up into the pelvis - which also makes my endometriosis worse).  When I would miss a period I'd still get cramps - I always assumed it was from cysts or something.  So all the pieces of the puzzle are finally coming together....
Helpful - 0
186627 tn?1257877774
I'm really  sorry about all this bad news.The good news though is that you RE thinks you can resume fertility treatment after the pill.
I hope the bfp will come sooner than later.
We are always here for you.
Hugs
Helpful - 0
Avatar universal
your welcome!
Helpful - 0
211043 tn?1337050701
thank you all!  I don't know what I would do without the support of the wonderful ladies on this forum!

Alikat - I appreciate the heads up.  My sister actually has thyroid issues, and warned me about the 3 tests, so I always make sure they do all 3.  However, I AM currently trying to find an endocrinologist, because it's a little disturbing to me that I've been on meds for my PCOS for almost 2 1/2 years now, and NO ONE is monitoring how they are affecting my hormones!  Nothing.  They just keep filling the the rx's for refills and that bothers me - especially when everything seems to be hitting the fan.  I also think that irregular hormones are making my endometriosis worse (the whole thing about estrogen making your endo worse, and with PCOS you produce too much estrogen), so I want to get it all under control and find someone who will keep an eye on it.  I want to find someone who has experience with PCOS, and I will certainly make him aware that I have a family history of thyroid problems (my dad's mom had issues too). - thanks!
Helpful - 0
Avatar universal
i had a prior diagnosis of adenomyosis, so i know how frustrating that is, i think it is more common in someone older than you and with a history of c/s (Iboth of which, i unfortunately, am!) so it doesn't surprise me that the diagnosis was slow to come for you.  i had extremely heavy bleeding, and severe pain during my periods.  i was also concurrently diagnosed subclinical hypothyroid (tsh 2.8) and placed on thyroid replacement.  i got pg right away, even with adeno, but ultimately m/c.  i will tell you that although my periods are still extremely heavy and painful, they are half what they were before thyroid replacement.  i know you had that tested before, but i urge you to see a regular endocrinologist to get tested, as you can have normal tsh, but abnormal t-3 or t-4 which is not always tested.  i'm sorry you had this hard road to go down.  it stinks.  
Helpful - 0
Avatar universal
i symphatized what you had gone thru all this years..sometimes even we dont like we came to a point of lost!just like you weve been ttc for about 6yrs..not until now that i look for 7th opinion(yeah 7th!)its just that my previous gyne are not capable enough to rule out my case..but at present with my RE,IFERTILITY SPECIALISTS..some problems became clear so as to finally understand what really going wrong inside me..like you do..ive wasted many years..many clomids..nordette..etc..but still im not loosing my/our hopes to finally get there..right now ive just finish my injectibles-gonal f..and waiting if my eggs was fertilized..now i can see chances..even though there are some mistakes done in the pasts(for not immediately went to a specialists)maybe sometime GOD teach us the lessons behind all of this were going thru..all i can say is..stay positive remember that WITH GOD ALL THINGS ARE POSSIBLE..he works in ways we cant see..HE WILL MAKE A WAY WHEN THERE SEEMS TO BE NO WAY..just trust his heart and plan for us..hope it helps..
Helpful - 0
388376 tn?1302011418
Aw, sweetie! I really am so sorry, i think all you can do is try to rest and heal right now. Take time for yourself the next couple of months. It really isn't fair, you have had so much to deal with. Try not to lose hope, i will keep you in my thoughts(((HUG)))
Helpful - 0
299260 tn?1304216105
I'm so sorry to read your post.  I can feel the pain in your words & just how sad you are.  You have really been through a lot & it s u c k s that it's taken so long & that you didn't feel like you were taken seriously before.  You're right.  It is good to finally have someone get to the root of the problem & get you healed and ready to ttc again.  Please don't lose hope!  You have endured so much & I'd hate to see you throw in the towel now. You are so strong & I really hope and pray that the bcps help to heal your body & the HSG reveals that the surgery was in fact a success!  I'll be thinking of you & keeping you in my prayers!  Stay strong & take care !!! :)
Helpful - 0
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