Hysterectomy Community
heartbroken and considering hysterectomy based on doctors advice
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heartbroken and considering hysterectomy based on doctors advice

I am 33 years old, and have been TTC for nearly 3 years.  It has been a long, painful and frustrating journey, as I kept changing doctors (each seemed more incompetent than the last!) and each would find something else wrong with me that explained why the previous treatments hadn't worked.  My RE is not covered under ins, so we paid our of pocket or with state grants for fertility treatments.  All told, I had 5 cycles of clomid, 2 IUI's and 2 IVF's.  In just over 2 years I had 6 ovarian cyst ruptures, 2 surgeries, all of the above fertility treatments, 4 early miscarriages (chemical pregnancies), and lets not forget my bout of mono!  It has been a lot.  

In that time I've been diagnosed with PCOS, endometriosis, asherman's syndrome (where there is scar tissue growing INSIDE my uterus) and adenomyosis (where the endometrial tissue grows through the muscular wall of the uterus.  As of the second IUI and IVF, we thought we had everything fixed and under control.  The IUI failed completely, and the IVF ended in my 4th chemical pregnancy.  Since then I have barely been bleeding out the front, and started bleeding out the back instead - that's how I know I have my period.  Is that messed up or what!!???!

I have been unable to hold down a job consistently due to not only everything I've already mentioned but also my chronic pain.  After my first lap, may pain came back after about 8 months and I hung in there until the 10 month mark.  This is DAILY pain - not cyclic.  It varies from mild to excrutiating and I never know what my day is going to hold.  Well, my 2nd lap was just 6 months ago and I've already left work twice in one week doubled over in tears from my pain.  

On Thursday I finally went to see a specialist who knows what he's actually doing with the endo and asherman's, and he basically told me if I want my pain to end I need to remove my uterus.  He thinks that my pain is from the adenomyosis, the only cure for which is hysterectomy.  He also said if I wanted I could do lupron, but he couldn't guarantee it would take away all my pain and while it may shrink some of the stuff in the muscular wall, it will eventually come back.  I don't see much point in bothering then.  He never mentioned an option for the TTC path, even though he works for my RE's office and knows we've been trying - so while I still need to ask him what he thinks my chances are (I was a little overwhelmed at the time and not expecting to hear this), I have a feeling if he thought I had a legitimate shot he would've included some option that involved TTC.  Not just induced menopause or hysterectomy!

I am so devastated and I don't know what to do.  I have also had rectal menstrual bleeding so first I have to get a colonoscopy done to confirm that and then will have to have part of my colon removed if there is endometriosis in there.  I also think my cervix is blocked with scar tissue, as the past two cycle I spotted (even less/almost no spotting this last cycle).  So I have to have an HSG to check for that.  

After those are done it's decision time.  Do I have him do another lap for relief that he claims he foresees me getting a couple months tops of pain relief?  Or do I have the whole thing removed all together?  

I am heartbroken and was finally coming to terms with it, and thinking the only way I could cope is if we could do the surrogate thing.  I just feel like I'm losing a piece of me and to be able to stare into those eyes I've always dreamed of would be like getting it back.  But today I googled "surrogacy cost" and was stunned to find figures from 65K - 140K!!!  That is the cost of a house!  There is no way we could EVER afford that.  MAYBE if we begged and pleaded for some serious help from our parents, but we'd only be taking away their much needed retirement money when both sets of parents are just about to retire, and I don't know if I could live with myself to do that.  

I had finally started to make peace with the idea and now I'm back to square one.  Somehow the surrogacy option was really helping me to cope with this.  I can't explain why but it was.  I just don't know what to do now.  At what point does having a baby outweigh my quality of life?  The treatments, the pain, the surgeries... it has not been easy for me.  I have spent a good portion of the last couple of years bedridden or homebound.  I'm not sure how much longer I can keep it up, yet I'm not sure I can handle giving up my uterus if surrogacy is not an option economically.  

Now I am heartbroken all over again and don't know what to do.

-amy
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5 Comments Post a Comment
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Hi Amy,

I just sent you a quick message about how I broke up my horrible adhsesions...

So sorry you are having to go through this.

Mary
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Hi there, my goodness you certainly have a lot of issues going on , first off let me say I do understand I had many of the same symptoms as you, Can you explain to me about what you mean "bleeding out the back and not the front" do you mean your having rectal bleeding?

On another not andeomyosis is a rather painful condition, of the many that you have its the one that would most put you as a canidate for the removal of the uterus. However there is infact one other option and its a medication called Leupron, it ususally but not always works for andeomyosis. What it does is place one in a chemically incuded menopause, and at your age you would have to (its a shot) have many injections...I have heard from a few doctors that I know the side effects are often negative in the emotional aspect. many women become very sad , weepy, so its often not a good choice, but I did want to let you know that with all due respect I disagree with your doctor, as I know Leupron is an option.

Ok I see now where you claim to have rectal bleeding from your menses, that sounds pretty unusuall, did you doctor state you have endo tissue in your rectum,,,I dont think this is menstrual bleeding but as the anatomy is so close it could very well be related to some of your problems,

In all honesty with your vast aray of problems I would have to say that the removal of the uterus would likely be your best bet , in all honesty its very very rare that I say that, But I know you must be in horrid pain you have multiple serious conditions.

If you do decide to get the hysterectomy try to get the DaVinci Robotic assisted its the best , less invasive, less blood loss, less soft tiffue damage , more precise suturing, cutting, cauterising etc,,It also just leave three very tiny scars.

You really have so much on your sholders I am so sorry, I can understand the desire for a baby, Sometimes things happen a but different in our lives then we have planned, there are a lot of wonderful, innocent babies, toddlers and young children who need good loving parents, Warm thought sent your way. When you decide what your going to do please let me know..I will help you. Cherie
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Thank you for your responses.

Mary - Unfortunately I think it's the adenomyosis causing my pain, not adhesions.  I have had just one tiny area of adhesions removed in each of my laps.

Cherie - as I mentioned, my doctor did offer Lupron as a suggestion, but said he couldn't guarantee it would take away all my pain and that when I went off of it that it would probably come back.  My uterus has been described as VERY "boggy" and enlarged.  In fact, after my last lap my doctor just kept repeating, "just a boggy, boggy, BOGGY uterus" - as if he'd never seen such a thing.  I have a feeling I've got a lot growing in that muscular wall.

As ridiculous as it sounds, you'd think I'd jump at the chance for the Lupron over hysterectomy, but I am much more leaning towards the latter than the Lupron.  As you can imagine, factoring in all the trying to conceive in between the pain and the surgeries while just trying to hold onto my organs long enough to have a baby, this has been an EXTREMELY emotional ride.  The first fertility hormone I took was clomid.  I was on it for 5 cycles and we were trying "naturally" with it (no IUI's), and all told it was 7 months.  I did NOT do well on it to say the least!  To say I was an emotional wreck is an understatement!  And that was at the BEGINNING of our TTC journey, before all the bad news (back then I only knew I had PCOS), before knowing those 7 months were completely pointless, before all the frustration, before the surgeries...  

I did a little better on the injectables, but I have heard everything you mentioned about Lupron, and actually saw it firsthand at a support group meeting at my fertility center.  This girl had a breakdown sobbing and couldn't stop and everyone who'd tried Lupron agreed that it was pretty common to act and feel that way on the stuff.  She obviously had legitimate reasons to be crying as well - but you know what I mean.  Anyway, I sort of feel like I'm at an emotional breaking point right now.  As difficult as a hysterectomy may be to handle, at least I don't have synthetic hormones interfering with how I feel about it.  I'm not so sure I could take 6 months on that stuff.  I think about the only thing getting me through the prospect of having my uterus removed is the fact that I would get MY LIFE back!  No more pain, no more shots in the belly, no more treatments - I think I'm ready to be done with it.  Still only 90% sure, but I'm almost at that decision.

I do have another question though - I was under the assumption that if I kept my ovaries I would NOT have to do ERT.  It seems like that may not necessarily be the case.  I am very hesitant as I've heard all the things about breast cancer and like I said above, I've kind of had it with the taking hormones thing!  I was really hoping and assuming I'd avoid that with my ovaries.

Thanks again for reading my lengthy novels!  I appreciate your input and support.
-amy
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your questions are good because they give me the information I need to answer you accuratley..I did see after I had written my "novel" that you had mentioned Leupron but as I had already written so much and was too tired to revise I decided to leave it because it had the side effect info,

Boggy ,,thats the same medical word they used to describe my adneomyosis uterus,,,he had showed me in a photo from a lap where he picked the uterus up in the center with an insturment and both "sides" just dropped heavily down, so boggy mean sponge like, heavy filled with extra fluid. I am certain thats what causeing your pain and you uterus is likely putting heavy presure both in the front and back..

It really does sound like a surgical removal of the uterus only would be your best option, just in my opinion. I was much like you my enlarged uterus pushed more forward though I was in extreme pain and had to pee like evey hour.

So anyways if you do decide to get the hysterectomy do try or atleast investigate the DaVinci method it is really superior.

Ok your question about ovaries, in theory the majority of the time you should not need normone replacement , however Mary and I can both tell you we have seen many many cases of women of all ages that for whatever the medical reason is their anatomy once changed causes the functioning of the ovaries to slow down..it may not happen to you ,,odds are it wont but I do want you to be aware that it does happen.

Some of the tests done indicating HRT causes or contributes to breast cancer etc...where done on biased group of patients by that I mean as my dr explained to me,,,a group of post menopausal women already in 60s ,,not a good cross section of women...more post menopausal women just not a good study...if and when you may need HRT you would want bio-identicals but this is throwing too much un needed info at you.

Bottom line is the leuprons not your best choice and your only other choice is ride out the pain until natural menopasue or get a hysterectomy. If you do Id get in writting for him to not remove ovarys.
If you do decide on the surgery Amy its not as God awful as some say yes its hard and it hurts,,I know tons of tips and I will share them all with you  its a great help,,

Blessings,
Cherie
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By the way you dont sound ridiculous about Leupron,,when I investingated it I decided I had felt miserable for long enough and did not even give it consideration,,,after hurting for 2 years I sure did not want to trade that for being depressed...so I totally agree with you,,,it sounds likd our Dxs were much the same.
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