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I feel like a fraud! I feel like a fraud!

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  #1  
Unread 06-12-2002, 02:09 PM
I feel like a fraud!

I recently found this site and was delighted to find a message board where the posts were full of humour and support, as opposed to doom and gloom.

However, reading all the problems that the majority of members have suffered from( that led up to their hysterectomies), makes me feel a bit of a fraud...I haven't been diagnosed with any endo, fibroids or any other diseases.

My story is as follows:

Had my first son in 1987...no problems. However, I was unable to fall pregnant again until 1993 and then I suffered 5 miscarriages and underwent the whole "gammet" of fertility treatment.
I had a lap in 1995 and the surgeon found massive adhesions, which were removed. Apparently, my appendix had been leaking, but could not be found. It was presumed that it had withered away.

In 1997 I gave birth to a son ( without fertility treatment) and 16 months later I had my precious daughter...(again unaided)
Another miscarriage occurred a year later.

For the last three years I've had horrible periods (40 odd days apart some months...every 12 days other months...) painful and very heavy. I've also had countless ovarian cysts.

I finally went to gyn doc and explained situation. Explained sex was unbearably painful...constant pain in my right side etc. etc.
He immediately suggested a hysterectomy. I was taken aback, as I had spent so many years trying to have children-that it seemed unthinkable that I would willingly make myself "barren"...
I compromised and agreed to a lap.
This was performed and again massive adhesions were found, plus lo and behold-my (withered) appendix was found lurking behind my bowel.
The gyn doc stated that uterus and ovaries looked fine, but appendix looked weird, so he referred me to a general surgeon.

Appendix was removed and found to have a tumour (benign)

By the way, I had also been suffering from hot flashes etc. for a year or so prior and I insisted that gyn doc ran some tests, even though he was convinced I was too young for menopause.
Tests came back with LH off the scale, proving I was indeed menopausal.

So where were we?

Okay, lap showed nothing wrong with uterus (except for adhesions), general surgeon performed appendectomy (but also informed me that uterus was retroflexed and he didn't like the look of it...)

Pain still in right side...so colonoscopy performed...3 polyps found (benign)...pain still there...sex still hurts....no more periods though, as gyn doc put me on HRT...general surgeon is convinced pain is emanating from ovary and has refered me back to gyn doc for a hysterectomy.

And that brings us to the present...

My point is-I have no medical diagnosis to indicate that a hysterectomy is warranted. From what I can gather, lots of women have a retroflexed or tilted uterus.
Should I really go through with having a hysterectomy (and everything that is involved, as far as the recovery process etc.) just to hope that the surgery will get rid of the pain in my side and make sex more enjoyable?

I'm sorry this post is so long (and disjointed) but I really need some advice from women who have been through this procedure.
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  #2  
Unread 06-12-2002, 02:25 PM
I feel like a fraud!

Yikes. You don't sound like a fraud to me!

As I recently reminded another Sister, just because they can't *find* something wrong, it doesn't mean their *isn't* something wrong. (Be sure to read this thread - lots of advice to a Sister with a question similar to yours: https://www.hystersisters.com/vb2/sho...threadid=64145)

Still, it's reassuring to have a definite diagnosis, and unsettling to face surgery when you are not sure the surgery will cure the problem...

You are right that lots of women have a tilted uterus. It's not necessarily a problem. Doesn't help matters any... but it's not bad on its own.

A lot of the problems you described - heavy, unpredictable, painful periods, pain during sex, pain on one side (left, in my case) sound like what I experienced with fibroids. Fibroids on the inside of your uterus would not show up during a laparoscopy. They don't have to be big 'uns to cause problems either. Another thing to look into would be adenomyosis, which I think can't be diagnosed definitively except during post-op pathology.

Maybe you could get a second opinion, or ask your doctor if there is anything else that could be done to get a diagnosis (like a vaginal ultrasound - but even that can miss fibroids...). You might end up with a bit of a gamble, even then.

Good luck making your decision!
  #3  
Unread 06-12-2002, 02:55 PM
I feel like a fraud!

Brit,

When I read my ultrasound report, I think do I really need this too? I am having pain, heavy clotting, bleeding & spotting between periods. But my vaginal & transverse ultrasound shows a slightly symetrically enlarged uterus with suspicion of multiple fibroids. I'm actually worried that my insurance won't approve this operation because the report doesn't sound that bad. My doctor has been pushing me to have this since March so he must be seeing something I'm not. I finally agreed to it & will be having it on July 1.

What is adenomyosis? I've seen that term alot around here.

Becky
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  #4  
Unread 06-12-2002, 03:49 PM
endo?

I have a lot of the same pain, the shooting pain up the sides during sex. Even though you had a lap, if your doctor is not trained in the stages and how to identify endo they will miss it. It can be red, pink, white, clear, blue, or black. A lot of doctors only look for the black(powder burn) lesions and miss all of the others. Just something to think about. I have it on the ligaments supporting my uterus and I think that is what causes a lot of the pain on the sides. I also agree with the above suggestion of adenomyosis, and that can't be diagnosed until pathology.
  #5  
Unread 06-12-2002, 04:18 PM
Adenomyosis

Andenomyosis is when the endometrium grows invasively into
the musccular layer of the uterus. The Uterus swells and gets painful. I don't really know what specific pain it causes all by it self as my colon was wrapped around the ovary and they were both stuck to the pelvic girdle with a lot of adhesions so everything hurt crazy.

However, after the original surgery, I discovered that the
pain shooting down my leg was probably the colon as that still hurt and had later problems requiring more surgery.
Kamie
10 weeks and still healing
  #6  
Unread 06-12-2002, 04:49 PM
Brit

Welcome here. No you are not a fraud hun. It sounds as though things have been really rough for you and for quite some time.
I can and do not have the right to tell you what to do, but I will say this has to be YOUR decision, not to be made lightly BUT made with alot of research. This site is so great as when posting like you have, you will get a whole lot of sisters telling of their experiences etc, whixh is great as they are woman who have and or are going to go through a hyst, real people not just names in books.
I myself are nearly 9 months post from having a LAVH/RSO and bladder repairs for symptoms of severe endeo, prolapsed uterus and bladder and fibroids. I have never felt better, a little trouble sleeping now and then but hey that is a small price to pay. No more pain, backache and sex is better than it has been in years. One of the things I had before was tremendous pain on right side especially at ovulation time, that was severe endeo that had bound my right ovary to the abdominal wall.
I wish you well with your decision hun, If you have finished with child bearing and are just sick of the whole pain etc, then what have you got to lose. Get another opinion, you have that right. Let us know how it goes, either way we are here for you anytime. Hugs and Hugs Vicki
  #7  
Unread 06-12-2002, 06:23 PM
Forgot

Brit, I forgot to mention ( hyster side effect )
I was one of those who was told that there wasn't any
substance to my complaints.
It took 5 doctors and 6 months for me to even get my
surgery scheduled.
I even had to change Gyn Dr.s before one decided
that my Uterus was enlarged.
Pathology came back w/Adenomyosis.
I was feeling pretty misunderstood for a long
time.
If you hurt the hurt is real and that needs addressing
in some way.
Having a hysterectomy is hard but I happen to think
my personal alternatives were harder.
It's a really tough decision each woman has to make.
Take Care and Good Luck with your decisions.
Kamie
  #8  
Unread 06-12-2002, 06:45 PM
I feel like a fraud!

hi Brit,

I guess the question is, how long to do want to live in pain and with no sex life? What else can be removed?
Best of luck with your decision,
Maralyn
  #9  
Unread 06-12-2002, 07:17 PM
Adenomyosis

Hi, I just wanted to clarify what exactly Adenomyosis is.... here is a link to a great descriptive website so please, anyone who wants to know about it,.. have a look:

http://www.wdxcyber.com/dxppn011.htm

The general description for Adenomyosis (Synonyms: endometriosis interna, uterine endometriosis, internal endometriosis) is this:

Adenomyosis is the presence of endometrial glands and supporting tissues in the muscle of the uterus where it would not occur normally. When the gland tissue grows during the menstrual cycle and then at menses tries to slough, the old tissue and blood cannot escape the uterine muscle and flow out of the cervix as part of normal menses. This trapping of the blood and tissue causes uterine pain in the form of monthly menstrual cramps. It also produces abnormal uterine bleeding when some of the blood finally escapes the muscle resulting in prolonged spotting. It more often occurs in the posterior wall of the uterus.

Other key notes within the info:

The abnormal bleeding pattern of adenomyosis is similar to that found in perimenopause due to dysfunctional ovulatory problems.

On pelvic exam there may be uterine enlargement from about 6-10 weeks pregnancy size.

The uterus can feel soft and boggy on pelvic exam. Sometimes adenomyosis is associated with uterine fibroids

Cause is basically unknown although there seems to be an increased incidence associated with any child birth, pregnancy terminations, Cesarean sections and and even tubal ligations. It would appear that any trauma to the uterus may increase the chance that endometrial tissue becomes relocated from the uterine lining.

Endometrial biopsy is not used to diagnose adenomyosis. It just picks up the surface endometrium and not pockets deep in the myometrium. It may be indicated to rule out other intrauterine causes of bleeding, however.

Adenomyosis may occasionally be associated with post menopausal bleeding

Hysterectomy is probably over 80% effective in eliminating pain and abnormal bleeding if a woman has finished childbearing and is willing to undergo surgery.

Gonadotropin releasing agents (e.g., Lupron ®) are the first choice for medical therapy for the pain but the problem is that the adenomyosis seems to recur after discontinuing the therapy. It can be used, however, to reduce the amount of adenomyosis and then the remaining areas can be resected if, for example, a woman wants to get pregnant.

It goes on & on................ might want to check it out.
  #10  
Unread 06-12-2002, 08:34 PM
I feel like a fraud!

Thank you so much everybody for your support and words of wisdom.
I think I've pretty much made my mind up to go ahead and have it done.
If I truly AM menopausal, then my child bearing years are over, right?
Add to that, my surgeon pointed out that once I have the hysterectomy-there'll be nothing left to hurt (except for possibly my gallbladder...and he's willing to whip that out if need be...)

Mind you, since I've made the decision-my pain has miraculously disappeared! Now I find myself constantly touching my side to make sure it still hurts! Ridiculous isn't it? I'm willing to bet if I went ahead and cancelled my appointment on Monday with gyn doc...it would be back, first thing Tuesday morning.

Thanks again everybody. You guys are great!
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