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Re: I'm Back To Forum After Long Absence! Just Had Laparoscopy One Year After Complete Hysterectomy...
From: Elaine (anonymous@obgyn.net)
Mon Aug 28 13:41:10 2006
Hi Katie! Sorry to hear that you are going through the same hell after a
complete hysterectomy! You have my greatest empathy. I don't understand
either how no endo was found with this last lap when so much was left
behind at the time of my hyst and I was on hrt all this time. You would
think there would at least be scar tissue there. I have a copy of my
surgical and pathology reports from my hysterectomy in August 05 and
this is what the surgeon wrote as far as what was found then:
"Diffuse clear endometriosis lesions of the posterior cul de sac and
bilateral ovarian fossa, powder burn endometriosis lesions of the
bladder peritoneum, cystic lesion (endometrioma) of the left ovary".
Nowhere does he describe removal of any of this, and he admitted to me
that he did not remove any, that it would die off without ovaries. Even
Lupron without addback therapy (which I had taken for four months
between the time of my first lap and the hysterectomy )had failed to
shrink any endo since the results of my first lap were not much
different than what was found at the hysterectomy. So either the endo
lesions did indeed die off and completely disappear without ovaries, or
shrunk to microscopic levels, or this gynecologist missed some and did
not look hard enough. Although the adhesion was removed, I am still
having low back pain and sharp pain around my pubic bone area, but it is
hard to tell if this is just from healing and my recent lap or what.
Guess I will just have to be patient and wait and see. I am a bit
skeptical because I have increasing abdominal pain the more estrogen I
take, still have bladder pressure and pain (despite negative uti tests)
and have been dealing with low grade fevers still after my hysterectomy.
I am not ruling out other causes though at this point.
I hope you are able to find the cause of your pain and find a doctor
that will do another laparoscopy for you. It took me many months of
fighting with doctors and countless tests to get one done! It is hard
enough to be taken seriously with endometriosis but once you have had a
hysterectomy, it's like they want nothing more to do with you. Good
luck and hang in there!
Elaine
At Mon, 28 Aug 2006, Katie wrote:
>
>Elaine. Thank you so much for sharing your story. I, too, had a
>hysterectomy for stage IV endo 8 months ago. I'm back to the daily,
>horrible pelvic pain and am battling doctors to get someone to recognize
>that I am in pain despite having had a hysterectomy. My doctor also
>left the endo behind believing no ovaries = no endo. I wish I could get
>a doctor to do a lap to see whether it actually is the endo again or if
>there is something else wrong. What I'm curious about, is you said your
>surgeon also left the endo behind and yet, in your lap they didn't find
>endo. So, did the endo actually die off?
>
>I hope you experience pain free days now that the adhesion is taken care
>of. Keep us posted on your recovery! Katie
>
>At Sat, 26 Aug 2006, Elaine wrote:
>>
>>Hello everyone! For those who are newer here, I used to post here from
>>November of 05 - May of 06, but stopped for a while for personal
>>reasons. I really wanted to come back though and share the results of
>>my laparoscopy since I had complained for so many months of continuing
>>pelvic pain since my complete hysterectomy (and I have missed you
>>guys!).
>>
>>I had my lap done yesterday by a different surgeon than the one that did
>>my complete hysterectomy. My former gyn had left behind a ton of endo
>>on my bladder and posterior cul de sac when he removed my reproductive
>>organs, and started me on hrt right away. He claimed the endo would die
>>off without my ovaries and the hrt wasn't enough to cause it to flare
>>up. Due to many struggles with surgical menopause and hrt over the
>>year, I have only been on a tiny dose of hrt because any more caused
>>pain and migraines.
>>
>>Well, surprisingly, the new gyn did not find any endometriosis
>>whatsoever inside me! Considering the amount of pain I have been in, I
>>was completely shocked. However, she did find one angry looking
>>adhesion that was attached from my sigmoid colon to the top of my
>>vaginal cuff (for those not familiar with this term, this is a technique
>>used to close the opening of the vagina after removal of cervix to
>>provide support and prevent prolapse of organs through the vagina). The
>>adhesion had been pulling on these organs and I suspect was the cause of
>>the pain I experienced just above my pubic bone, bloating, painful bowel
>>movements, and low back discomfort. But it still does not explain the
>>pain, burning, and pressure I have been feeling in my bladder area for
>>many months, plus urge incontinence sometimes. Whether there was any
>>microscopic endo or endo she missed I dont know (I was too groggy to
>>think to ask if she did a biopsy of the scar tissue or if she used a
>>mesh barrier to prevent the adhesion from growing back; I have yet to do
>>that). But if after I am healed I still continue to experience pain, I
>>may have to visit a urologist. There are still other causes to look
>>into, such as Interstatial Cystitis , allergies irritating my bladder,
>>etc...I am still on the Anti Candida yeast/sugar free diet but losing
>>too much weight (down to 104 lbs from 116lbs) and struggling with that
>>as well as continuing fevers (102 degree temps). And I had an upper
>>endoscopy to rule out Celiac (was negative) and bacterial infection of
>>the stomach (also negative but slight inflammation) due to continuing
>>nausea. I suspect a hormonal imbalance contributes to this.
>>
>>For any of you who have had a complete hysterectomy and are still
>>experiencing pain many months out, I can't urge you strong enough to
>>continue the fight to find the cause. I know there are plenty of cases
>>of endometriosis continuing after everything is removed, and I may yet
>>have more endo down the line, but there are also many other causes to
>>consider for the pain. Adhesions is just one of them. I started with
>>an ultrasound abd, then ct abd, upper endoscopy, countless pelvic exams,
>>urine tests (to rule out urinary tract infections), and blood tests. I
>>went back and forth from my gynecologist to gastroenterologist to
>>general practitioner to endocrinologists looking for answers (found out
>>my thyroid is way out of whack again also). And finally I was able to
>>have a lap to confirm at least one source of the pain. Yes, surgery is
>>a major risk to take, but ignoring pain is just as bad and adhesions too
>>can be dangerous if they get bad enough to strangle organs. My quality
>>of life was horrible with the constant pain. I still have regrets about
>>having had this complete hysterectomy, and the many more problems it has
>>created. If I had it to do over, I would have fought harder to find a
>>specialist willing to excise the endo out of me so I could preserve my
>>reproductive organs, which I am finding out do much more than regulate
>>the menstrual cycle. They are crucial to our health and well being, and
>>you simply can't replace with any hrt (bioidentical or not) what your
>>ovaries provided. The crushing fatigue, body aches, joint pains,
>>continuous hot flashes, sweats, insomnia, migraines (which I never in my
>>life had before), nausea, vaginal dryness, mood swings, urge
>>incontinence, new food allergies and intolerances, yeast problems,
>>anxiety and heart palps, and on and on despite trying different
>>estrogen, progesterone, and testosterone replacements have made my life
>>a nightmare! I have now given in to taking an antidepressant to help
>>deal with the profound depression this surgery has caused me. Even
>>though no more endo was found, the price I payed for this was too much
>>and not something I would wish on anyone. I realize we are all
>>different, and for some hysterectomy is inevidibe because the pain is
>>too much, and not all women have the problems I have had with surgical
>>menopause, but I do urge you to find every possible other treatment
>>first before giving in to this strategy. Once it is done there is no
>>turning back, and you can't know ahead of time how your body will
>>respond to it.
>>It is my greatest hope that someday there will be a less invasive cure
>>for this horrible disease, so that we don't have to go through such hell
>>with the treatments we have available now. For this reason I will
>>continue to visit the endometriosis boards and offer my support and
>>encouragement. I wish you all pain free days ahead, and thank each of
>>you for listening to my story.
>>HUGS,
>>Elaine
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