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Sammy.. Question about endo  (Read 2743 times)

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Hey Sammy I went to my gyno today and was finally honest about the pelvic pain I have, they have ruled out STDs and tomorrow I go in for a pelvic ultra sound but she said the pain sounds like it could be endo. I dont know. My pelvic pain has been very crampy so around the time of my period it would be awful even while on birth control pills. So I tried the pill where you have only 4 periods a year.. made it worse!!! the pain became worse at night and would wake from sleep in extreme cramping pain that would shoot down my legs and make me weak in the knees as well as nausiated. I would wake up in cold sweats from the pain and would need to crawl to the bathroom to get advil or tylenol. I would just cry and lay in the fetal position for about 20 mins until the meds kicked in. Another time i notice alot of pain is during intercourse or after. I end up sometimes crying from pain after intercourse and its gotten so bad sometimes that my husband feels "guilty" for making me hurt like that. I also have pain in my left ovary, and some spotting. I thought I was ovulating but my gyno laughed at me today and informed me "you dont ovulate on birth control pills"  .. my response was... "oh" lol.. anyways. I dont really know what to say... but is this sound like something you had? does this pain sound firmiliar at all??? what is done during a laprascopy? (sp?) what steps did you take to get to the laprascopy surgical procedure??? any help would be greatly appreciated. Thank you hun!!  Huge Hug


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**Kristin**

First Struck with Anorexia on and off for about 6 years beginning in 1993. 1995 Diagnosed with GERD, IBS, Anxiety. 2006 Diagnosed with CFS, 2009 Diagnosed with Sleep Apnea and Circadian Rhythm Disorder and Hypoglycemia. 2011 Diagnosed with Vitamin D Deficiency and Hyponatremia. But... why?! I think I am one step closer to that answer ON my own. Your are your own advocate for your health! No one can tell you how you can or can't feel!
   

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Kristin,

I know Im not Sammy, but I have dealt with this exact issue, and had several Laps for it.

They put a camera in one tiny incision, and look around for endometriosis or anything else that can be causing the pain. What you have sounds EXACTLY like endo.  Huge Hug Huge Hug Huge Hug


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~Keilia~
   

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Thanks for your input Keilia... man.. I was hoping not!! how long does this all usually take?? is it a painful recovery? and if they find endo during the laprascopy do they just take it out then or???? Keilia you said you had it done? did they find anything for you at that time?  sorry so many questions....


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**Kristin**

First Struck with Anorexia on and off for about 6 years beginning in 1993. 1995 Diagnosed with GERD, IBS, Anxiety. 2006 Diagnosed with CFS, 2009 Diagnosed with Sleep Apnea and Circadian Rhythm Disorder and Hypoglycemia. 2011 Diagnosed with Vitamin D Deficiency and Hyponatremia. But... why?! I think I am one step closer to that answer ON my own. Your are your own advocate for your health! No one can tell you how you can or can't feel!
   

Formerly Undiagnosed
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Gender: Female
Posts: 455

Told You It Was Not All In My Head!


Ask anything you like silly =)

Depends on how much they find - with me it was all over my intestines, liver, lungs, etc so they had to go in later on, and they did a partial hystorectomy while they were at it. (Yes I gave permission in advance, and had more than endo wrong). It was the BEST surgery I ever had. THAT was a painful recovery. But from a lap? Its like a 48 hour rest a bit and then your fine recovery. Make sure you walk as soon as you are able! Walking helps. A LOT. And make sure you eat soft foods after, cause it takes awhile to poop after surgery.

However, it took docs 10 friggin years to diagnose my pelvic pain - and thats cause I kept telling them I thought it was endo and THEY WOULDNT FRIGGIN LOOK. <grumble about docs here>.


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~Keilia~
   

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Sure does sound like endo...

The pain worse around period time
Pain during intercourse
More pain of a night ....(seems our bodies are more pre-occupied during the day, night time we apparently are more aware of the pain so a BIG YES to night time pain, up 1am, 2am 3am, strange how the body works isn't it..
Fetal position and crying for hours....wow you're bringing back some of my own memories, they fit to a tee  Sad my emergency visits to hospital always in the wee hours of the morning....

I would describe my endo pain going back 3 years now as above, but also it's a heavy deep throbbing, sometimes stabbing pain
Along side Endo I also had Adenomyosis

It's hard for me to really be spot on with the description because at the same time this was going on I had a burst appendix that was not diagnosed, the agony oh my god,  Cry I've never experienced anything worse so I can't tell really if all this was from the appendix or Endo and Adenomyosis because I had a laparoscopy to remove both the appendix and the Endo Laser Treatment and after that 99% of this pain disappeared. So it could of been either or all of the problems.

Laparoscopy was a very simple operation for me, depending on your Gyno they will either cut out the endo or laser (as I had done) I've since had two more laparoscopies and I have no Endo at all, my pelvis is crystal clear, so the Gyno did a Fantastic job still no return.


Couple things I will mention:

3 Ultrasounds I had in my home town showed nothing (all clear)
Gyno in my home town told me all my problems were in my head  aggressive nothing wrong with me
(at that time I had a burst appendix) but no apparently I was perfectly healthy................ Rolls Eyes :angry
Also my appendix pain was all LEFT sided, most think right sided, but it can be referred pain, hence Doctors not considering it an option, but wow how wrong they were... aggressive ultrasound failed to show appendix too because it had burst and not diagnosed quickly it had started to form adhesions around it ( apparently the bodies way of protecting itself against infection, it covered the diseased section so it doesn't spread to other body parts )

So I Ventured into the City to find a better Gyno and he also Performed a more in-depth Ultrasound (sorry don't recall off hand the correct name for this ultrasound) anyway again Endo was still not picked up, all he could see was a Fibroid (benign)
He discussed in depth how there were debate between practitioners on how to diagnosis Endo and his opinion was it can only be correctly diagnosed via a laparoscopy... and my description fit to a tee so he had a high level of suspicion..

Sorry babbling again  Wink
What I'm really trying to say is despite tests showing everything normal (besides the Uterine Fibroid, which many women have and not a concern) is it took a very experienced caring Gyno to work out my problem back then, picking up my burst appendix was a god send, I could have died


So if your Ultrasound comes back clear don't be disappointed, try and research more on Endometriosis Experts  Smile in the hope they will perform a laparoscopy despite Ultrasound testing Negative

 Huge Hug
Sammy








 


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Formerly Undiagnosed
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Told You It Was Not All In My Head!


Sammy - the more in depth ultrasound - transvaginal?


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~Keilia~
   

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No not transvaginal (although I've had a few of those) it was a Translucency Ultrasound requested by Special clinical interests, menstrual disorders, endometriosis, pelvic pain, endometrial ablation etc, usually only used for Pregnant women.


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Thanks for the input ... I really appreciate it alot. I know I have gone into the gyno alot telling them about the pain but appearently I have an introverted uterus so its towards my back and so that has not been on my side as far as talking about pelvic pain. Its been used as an excuse for the pain during intercourse.
My crazy gyno.. the one that told me I was horny. lol.. yah she was actually the one to tell me that alot of times endo will not show up on the ultrasound and she said she for sure thought my ultrasound would probably come back normal but the only way to diagnose endo is with the laprascopy. This was the crazy gyno that I tought was wasting my time yesterday.. but...she is the only one that has ever brought up endo ... ever. but then again you know doctors. They gotta rule out other things first like STDs, infections and PID. So I don't feel I will be getting the laprascopy anytime real soon but it maybe in my future.


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**Kristin**

First Struck with Anorexia on and off for about 6 years beginning in 1993. 1995 Diagnosed with GERD, IBS, Anxiety. 2006 Diagnosed with CFS, 2009 Diagnosed with Sleep Apnea and Circadian Rhythm Disorder and Hypoglycemia. 2011 Diagnosed with Vitamin D Deficiency and Hyponatremia. But... why?! I think I am one step closer to that answer ON my own. Your are your own advocate for your health! No one can tell you how you can or can't feel!
   

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Posts: 263


I forgot to add how the ultrasound went itself. It took over an hour. They did both imaging from the outside and the transvaginal thing with that huge probe that was not very comfortable at all! There was quite a bit of pain when they moved the thing near either of my ovaries. However they had a really hard time locating the left ovary for some reason or another. We should have the results by Thursday but again.. expecting this honestly to be normal so probably wont receive notice unless its abnormal but nothing for me is abnormal so I never get any phone calls. ONE DAY... one day.. I will recieve a phone call from a doctor saying "Kristin this came out abnormal and i know what is wrong with you" One day I will get a personal phone call from a doctor. I am hopeful and positive


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**Kristin**

First Struck with Anorexia on and off for about 6 years beginning in 1993. 1995 Diagnosed with GERD, IBS, Anxiety. 2006 Diagnosed with CFS, 2009 Diagnosed with Sleep Apnea and Circadian Rhythm Disorder and Hypoglycemia. 2011 Diagnosed with Vitamin D Deficiency and Hyponatremia. But... why?! I think I am one step closer to that answer ON my own. Your are your own advocate for your health! No one can tell you how you can or can't feel!
   

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I Will Be Diagnosed !


I know it's an odd thing to hope for, but............... fingers crossed they will book you in for a Laparoscopy.
The transvaginal ultrasounds can be painful, especially if you have endo, so glad it's all over and done with  Smile
Keep us posted on the results

 Huge Hug
Sammy



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ONE DAY... one day.. I will recieve a phone call from a doctor saying "Kristin this came out abnormal and i know what is wrong with you" One day I will get a personal phone call from a doctor. I am hopeful and positive

I want one of them phone calls too


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I forgot to add how the ultrasound went itself. It took over an hour. They did both imaging from the outside and the transvaginal thing with that huge probe that was not very comfortable at all! There was quite a bit of pain when they moved the thing near either of my ovaries. However they had a really hard time locating the left ovary for some reason or another. We should have the results by Thursday but again.. expecting this honestly to be normal so probably wont receive notice unless its abnormal but nothing for me is abnormal so I never get any phone calls.

Which country are you in? Thursday here - any news yet?
Sorry it was painful. The inside ones can be horrid, especially when they have a not very caring person attached to the other end.


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Im in the U.S....in Washington State. So still wednesday here.. well actaully its now officially ten minutes into thursday.  Smile
The tech said it could take 1-2 days for the physician to receive. So either by tomorrow or friday. If friday comes and goes though I am just gonna assume its normal which honestly I am sure it will be.


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**Kristin**

First Struck with Anorexia on and off for about 6 years beginning in 1993. 1995 Diagnosed with GERD, IBS, Anxiety. 2006 Diagnosed with CFS, 2009 Diagnosed with Sleep Apnea and Circadian Rhythm Disorder and Hypoglycemia. 2011 Diagnosed with Vitamin D Deficiency and Hyponatremia. But... why?! I think I am one step closer to that answer ON my own. Your are your own advocate for your health! No one can tell you how you can or can't feel!
   

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Gender: Female
Posts: 232


It's Friday here now  Smile
Do you have to ring? or will they ring you?
We have to do the calling round here.


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Well they called me today to tell my STD tests and test for infections came back negative. Which I knew. Still waiting on my pap. I tend to have abnormal paps. They didnt mention the ultrasound but said it could still take a few days for the doctor to review the report and images. I called them too to tell them about new symptoms well not new to me but just to tell them. My period has not started yet but the pain is here. Yesterday I was bloated with water wieght and bloated with constipation and abdominal pain. Then today the cramps and then cramps in the intestines. The nurse told me that was pretty normal period stuff but that she would pass it on to the doctor. bahhhh..... they told me to drink water use a heating pad and take some advil. I do that all the time anyways for my pelvic pain so.. that was no help. I have had the biggest problem recently with nurses thinking they know all and have attitudes about it making me feel like an idiot. whatever.

Also another question.... I know it pretty normal to gain the water weight during your cycle so I was just wondering is it normal to gain like 5 lbs in 2 weeks??? 2 weeks ago at the GP I weighed 117.4 lbs and then at the gyno a few days ago I weighed 122.something lbs. I dont eat any different So I dont know. I do look freaking pregnant due to bloating but I am thinking some of the bloating is from the GI problems I am having right now too. ughhh this is so annoying.


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**Kristin**

First Struck with Anorexia on and off for about 6 years beginning in 1993. 1995 Diagnosed with GERD, IBS, Anxiety. 2006 Diagnosed with CFS, 2009 Diagnosed with Sleep Apnea and Circadian Rhythm Disorder and Hypoglycemia. 2011 Diagnosed with Vitamin D Deficiency and Hyponatremia. But... why?! I think I am one step closer to that answer ON my own. Your are your own advocate for your health! No one can tell you how you can or can't feel!
   
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