Avatar universal

Endo in abdomin possible?

How many of you ladies have had endometriosis found in your abdomin?  I have pelvic pain, digestion issues, pain with/after intercourse, a left ovary that couldn't be found on a recent u/s, ovarian cysts, extreem pain on my left side when examined and most of the endo symtoms (was dx in 1991 with endo) but most of my pain and concerns are in my abdomin/stomach.

I have had 4 laps done in the last 19 years so I'm sure scar tissue around my belly button is present.....could there be so much that the pain i am feeling is from the scar tissue and NOT endo?  My stomach will swell, bloat, and get rigid/rock hard for hours at a time (not food related). The nausea can be overwhelming and it feels like there is a bowling ball thats on fire in my belly.

The dr I saw seems to think that the pain in my stomach is not endo related but just scar tissue.  She said that out of thousands of surgeries she has done she has only seen one up in the abdomin so I'm guessin not so common?

I am now faced with the choice to have another lap to see if it is endo acting up and possibly cause more scar tissue or just take what the dr said and live with the pain.  

Has anyone been through something similar or have any suggestions on what i should do?

Thank you ladies for all your honesty

4 Responses
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Avatar universal
Years ago I had surgery to remove spots of endometriosis, and I don't know if there was any on my stomach, but I do know that there were spots it couldn't be removed, like my bladder, and intestines...too risky.
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999780 tn?1263671971
I have had a similar story to you.was diagnosed in 2003.had 2 laps in 2004 and one in 2005 had a baby in 2006 and 2007.still no relief.had a hysterectomy in 2008 still no relief.I have been on hormones to shrink the endo and still no relief.I have now found an endo specialist to help me.I gave had upper GI symptoms.IBS and gall bladder symptoms.I have had all the GI work-ups there are and it all came back negative.My GI had concluded that the endo has so severely entangled itself in my bowel,gall bladder and diaphram,colon etc.This dr in WI is willing to help me and I am having surgery to excise the endo in June.There is no place that he cannot remove the endo from he said.It can be done.It will all be done with a lap.I have been in pain for too long now and finally looking forward to some relief.My husband and I cannot be intimate anymore as I am almost bed ridden the next couple of days with pain and incontinance.I hope this helps you .
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Avatar universal
Thank you for your response.  I am so sorry to hear about how much pain you are in but glad that you finaly found a dr who is willing to help you.  How did you find him?  I will be curious at how things work out for you and will be sending you my prayers.  There are some days I feel like I'm just going crazy and as sad as i feel for you, It's kind of a releif to know i'm not alone.  
Did you have the stomach cramping like i described in my original post.  That is the pain that I just can't get anyone to listen to. I had all the GI test, a U/S, and a CT scan and then diagnosed with IBS and for a long time thought that's what it was.  I have PCOS as well so it's hard to tell at times which (PCOS or Endo) is giving me problems.  
Do you have nausea as well and are your symtoms everyday or just during a certain time of the month?
How did you do on the Hormones.....what did they put you on and where the side effects as bad as they say?

sorry for all the questions but I find I get more information from this forum than I do when I see Dr's.

I wish you well and again thanks for your response.  
Helpful - 0
999780 tn?1263671971
Hi there thanks for you prayers.I found him on the internet.I googled endo specialists.Another website that is very helpful is www.hystersisters.com.They have a lot of help there too.Yes I do have the stomach pain but of course no periods.They have also put mine down to spastic colon and IBS w/constipation. I do take Amitiza but that makes me very nauseous.I have a bottle of Emetrol anti - nausea meds in my closet all the time.I take a spoon every time I feel that feeling and it does help some.I hope its not bad for you cause I have been taking it for about 3 years now.Nothing helps with the nausea.Its almost like having morning sickness everyday.I have my symptoms most of the time.Even though I had had a hyst. your body still cycles so some times of the month are worse than others.
I did take the Lupron for 6 months.It made me crazy.I had all the menopause symptoms but x100. I hated every minute of it.In the end it really never worked so then we were told to try and have children. I think there is a post on here about taking Lupron and peoples stories with it.
I will let you know how the surgery helps me.I am really hopeful cause this is my last resort.3 obgyn's could not help me so I am hoping this dr can.I have read a lot of good reports from his patients.
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