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so confused and lost so confused and lost

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  #1  
Unread 05-04-2005, 11:27 AM
so confused and lost

Hi Ladies,

I am just so confused, frustrated, and depressed! I do not know what/which to do next...

Three yrs ago, SAH, no ovaries left, and with it was bladder repair for bladder and uterus prolapse.

Now, 4 weeks ago started with extreme pain deep inside my tailbone area. Few weeks prior to that I had an episode of blood in the toliet with heavy straining of bm (chalked it up to hemmerroids.)

Now I get the "something inside feeling", not right down there, no sex not even dh (excuse me) finger can touch insides, it hurts and is "blocked"

So I see urologist, says she sees 2-3 cystocele, she does cystoscope, then says NO PROLAPSE! But was concerned that my right colon was FULL of bowels, she rx citrate magnesium.

Her previous appt with me was not transcribed, and was totally confused as to what I needed or was having. She though IC so she ran with that. So after procedure I am out, and she talks to dh. She is going on vacation, and has very little time to talk (P'd off dh). Then when she does call this week, she says along w/ NO prolapse, that I do have a small cyst on my ovary- uh duh, NO OVARIES, and she knew that. She says maybe skeletal or "bum Dr. (What are they called?)

So I go see choropractor, after I read a website coccyx.org and think that I have those symptoms. Well he thinks the same and preceeds to care for me, manual adj, tens unit, heat etc.. Today we do catscan...NO bent coccyx skeletal is fine.

So I tell him Uro wants to have an MRI done tomorrow morn. He says great idea. But dh and I are hesitant since Urol seems so busy, and not on top of her patients. But I say then I woudl have to find a new doc to get MRI. And then it's all about what DR to see obgyn or bum doc, or what.

And wouldn't Uro have seen a retrocele prolapse??

I don't care I just need answers and I am so tired of the pain, and seeing dr-dr then more tests...

Please anyone comment, advice, help, please!!

Explain your pain and sympt of retrocele, and how was your bowels, and did the uro address that or an obgyn or gastro??????????????????????????????????????????????

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  #2  
Unread 05-05-2005, 12:33 AM
so confused and lost

Hi dawnjxsn,

Well, my rectocele wasn't that painful because I have such extensive nerve damage that I couldn't feel much of anything down there. So the thing that brought it to my attention was that I couldn't empty my bowels without stinting (using hands to manipulate bowels from rectum) and also, my sex partner couldn't penetrate because of the bulge in my vagina. My GYN (who did the surgery) kept telling me there was "nothing wrong" so I went to my GP and he immediately diagnosed a rectocele. Off I trotted to an "expert" (urologist and proctologist) at a well known hospital who also said rectocele and recommended surgery. So did my second opinion. But I'm repeating myself...

I am now doing much better. The key for me was hormone replacement, and a watchful, healthy diet but that may not be your case. A few times I have run out of hormones and before my new ones arrived, I noticed things acting up again. (Remember, the ovaries are part of your endocrine system and help regulate your bowels.)

If I were you, I'd ask for a complete copy of my medical records. Everything. You need to know EXACTLY what was done to you and all the results of all your tests. In any case, I don't know why you need to see a gyn, since they specialize in the parts that you have already had removed. (supposedly- find out about that "ovary") I think the proctologist might be good place to start.

I can totally identify with you about the dr. to dr. to dr. thing... isn't it frustrating?! My heart goes out to you.

Hugs,
  #3  
Unread 05-05-2005, 08:59 PM
so confused and lost

Oh (((((dawnjxsn)))))) I'm so sorry you're dealing with all of this

I had a Stage III Rectocele repaired at the same time as my hyst. In my case, there wasn't that much pain involved, just at the time when the prolapse itself occurred: at that point, I had lots of very sharp pains, that lasted a few days... then I noticed the bulge at the entrance of the vagina. I didn't have any bleeding caused by the rectocele either... at least, I don't think so: it's hard to tell as, at the time, I was dealing with all the issues related to the fibroids and was bleeding and hemmorraghing all the time

Rectocels that are in the early stages of prolapsing can sometimes be hard to diagnose, especially when lying down. Some women have had success when examined standing up or when asked to bear down.

My Rectocele was repaired by my ob/gyn. As far as I know, Uros do not usually repair rectoceles: they look after bladder issues. Colo-rectal surgeons are the specialists who look after rectal and colon issues. Another option would be a General Surgeon.

I do hope you find answers soon
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  #4  
Unread 05-05-2005, 09:18 PM
so confused and lost

I hope you feel better soon. I saw my gyn right after I noticed the bulge in my vagina. He diagnosed me with a very small rectocele. He thought I had other rectal problems contributing to the constipation issues. He referred me to a colon rectal dr. She ordered me a defecogram, which showed a large non emptying rectocele and a enterocele. The colon dr. did not repair these type of prolapses, so back I went to my Gyn. He did the repair surgery in Jan. I know how you feel going from dr. to dr. I went through it too. Once my gyn saw the defecogram results he knew it was worst than he thought. At my pre op visit he had me bare down. He then knew it was much, much larger than he had diagnosed in Oct. I think it had probably gotten quite a bit bigger in those 3 months.
The surgery was a breeze. Once you find a dr. who will take care of you, you will feel so much better.
Keep pushing for answers and the appropriate treatment
Peggy
  #5  
Unread 05-06-2005, 09:59 AM
so confused and lost

Dawn:



I'm so sorry for the frustration and pain you are experiencing. IMHO, the right doctor to see is the one who will manage your care. Whichever doctor will take responsibility and followup with your other doctors is the right one, regardless of specialty. Most critical is that it is a doc that you trust and can talk to openly about exactly how all of this is affecting you and what outcome you hope for and will follow up and partner with you to find the best fix possible! Someone who will treat you as a whole person.

That's what I for ... for you and all my sisters! Compassionate, competent care!

Do keep us posted and vent all you like and we will be here to offer s
  #6  
Unread 05-08-2005, 06:35 PM
so confused and lost

Thank you ladies,

For your responses. I have an appt Monday at 1pm with the a urogyn. She at least has emphasis, in vagnal surgery and pelvicfloor. God I hope and pray this is a good dr for me, bc I am starting all over.

I have had my tests (dye in veins, catsacans, xrays, and cysto) faxed over to this new dr. Although this worries me that she will see the cysto from wishy washy dr and be persuaded by her rulings.

I just plan on explaining all about her and her results. And confusing me with other patients, and how I had a cyst on my ovary, (I have no ovaries). And still from the cysto, I am having spasms, and burning urine, with little streams at a time, then a normal one later. And ONLY UROBLUE religiously is helping...

THIS I DID NOT HAVE PRIOR TO GOING TO WISHY WASHY DR. SO SHE DID SOMETHING!! I never had any peeing issues.

And now my "feeling" down there of the "dry tampon" is worse. It feels like I have had this happen:

The pain in my tailbone area was so bad, and this was bc whatever is prolapsing was "sitting" on nerve, ligament, whatever causing this excrutiating pain. Then it got worse as the prolapse has shifted. And now just a few days later, I absolutely know that I am sitting on something, and pinching, and I try to reach inside and adjust, and inside there is all kinds of "weird" parts that were not there before. And it is closed up, and VERY sensitive to the touch. But does not look like a "bulge" like it did b4 with my bladder/uterus prolapse.

And here is the weirdest..as it has become more obvious of a prolapse, and shifted downward the tailbone pain is less now. Not throbbing as much! When I sit it is inside pain, not ontop of tailbone pain.

So I don't care what this urologist said, she is full of you know what, I do have prolapse. And she did mess up my bladder now.

So Monday will tell all I guess. Also Tuesday the wishywashy urol had previously ordered an MRI. So I figure I will go to it anyways then just take the results to new dr.

But before I do can you explain, what excatly can an MRI detect in the way of prolapse and vaginal vaults?? How would it benefit me to go?

Hugs to you all
  #7  
Unread 05-09-2005, 07:47 AM
so confused and lost

Dawn:

I am guessing the MRI is to do with the tailbone pain. Good question for the doctor who ordered it. Call and ask before you go. MRIs are expensive, and even if you have insurance, unnecessary testing drives up health care costs for us all. You should never be sent for a test without adequate explanation.

You are understandably angry with the uro. I am glad you came here to vent. I hope the urogyn is better suited to you and will be worthy of your trust.

It is so frustrating to be in pain and not have any clear answers about cause, much less cure. I'm so sorry you find yourself on this Road.

Keep us posted!

  #8  
Unread 05-09-2005, 05:14 PM
so confused and lost

Well I am back from the appt heres how it went:

I will call her dr A. Dr A found during my pelvic and rectal exam a cystocele. She also sent me through the roof in pain when she reached up and palpated my rectum and surrounding areas.

THAT WAS IT, THAT WAS AND IS THE PAIN IN MY TAILBONE!!

In fact I am in sooooo much pain right now, bc she hit the spot. She also explained that I could have a bulge/disc problem and this can happen when you strain for a BM hard enough and you push your bladderout. She further explained that I can push/bare down so hard that as she watched she said I could have pushed out a baby right then!! I need to be very very careful or I will "push" out more. She was really serious and kinda surprised at my ability. Which I guess would bring some understanding to the incident of blood/painful bm that I thought was H but was more than likely my prolapse happeing.

She rx Bentyl (Dicyclomine) for 6 weeks. She said that nothing can be done for the cycstocele bc it should not be bothering me, and that it is the rectum situation that is causing the pain. This I
am not quite happy about, but I have heard the "it's not fallen enough" for 3 yrs before from my 2002 hyst. She also suggested that she has seen it where prolapses that are fixed often, can cause it ruin the natural vagina, and you have to create a "virtual" one with walls together - with results that cause women to not be able to have intercourse.

Finally she is gathering records from my hyst, bladder repair, and cystoscope dr's and tests. She wants to see what I "looked" like prior to my hyst and all those laparoscopies. Esp since I had all the endometreosis, which could be effecting my rectum.

Or it could be a "bowel disease" - Basically she gave "it could be's" but she wants to research more after seeing all my records.

DH and I felt really good about her. She was kind, and very attentive. She was all I hoped for and you all wished for me - thank you!!

One last thought, she did ask if I had an upper GI dr I said no, right there when she started talking about bowel problems, I shared with her that yrs and yrs ago (like 9) I had IBS, would this be the same thing? (but when I got home I realized I meant spastic colon). It was here she wrote the script for Bentyl and I now wonder if she changed her thoughts due to what I shared, and was leaning towards a referral to a GI dr, but I changed her mind??

After all if you are having bowel/rectum problems would a urogyn take care of that or a GI??

She did say after the 6 weeks if this did not help (she might have said if this does help) to see one. SO the only question I am asking is...is waiting the 6 weeks, with this pain good, or should I find an upper GI b4 the 6 weeks. Other than that I think it went pretty well!!

Man I write books here I am sorry!!
  #9  
Unread 05-09-2005, 05:28 PM
so confused and lost

If it were me....I'd not wait and worry the 6 wks....get a GI Dr and find out exactly what's going on.

Your Rx may help for the time being but the original problem may still be there and the Rx will just put it into " remission" of a sort.

If you don't, you'll always wonder...or I would.
  #10  
Unread 05-09-2005, 07:07 PM
so confused and lost

If you're not comfortable with your new doctor's suggestion, you can always seek a GI doctor's opinion: you know best how you feel. However, I would try and give the Bentyl a chance: Bentyl is used to relieve colonic spasms and may be just what you need to ease the pain.

One thing I've learned, is how similar gyno problems and bowel problems can be: not only are both in the same area, the symptoms also tend to be the same. And PMS can be a trigger for bowel issues and I guess that bowel issues can compound existing gyno issues That's why it must be hard, at times, for doctors to make an effective diagnostic.

I do hope that this new doctor proves to be the pearl you were looking for
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