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Endo or scar tissue? Endo or scar tissue?

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Unread 08-02-2009, 08:10 PM
Unhappy - Endo or scar tissue? Endo or scar tissue?

Well I cant really say Im new since I use to be a member of hystersisters years ago. I dont remember what my screen name was then so I, of course, had to create a new one.

I have returned for some needed support and hopefully to get some advice on some things going on with me. I cherished this board in my time of need back in 2002 and am sure there are still some great ladies with support and advice here now.

A little about myself as far as Medical issues.

I had a hysterectomy in 2002 due to endometriosis.
At the time the decission was made to leave my ovaries due to my age and endo was not on them at the time.

In 2004 they had to go back in and remove ovaries- again, due to endo.

Life has been busy since then but in the past year or so pain has came back- Now Im not sure what the pain is coming from.

I went to my gyno Friday and am scheduled for a Laparoscoptic surgery this Friday the 7th.

The doctor says he just dont see how it can be endo since I dont have my ovaries anymore and seems to think it is scare tissue. Either way the PAIN is the same.

I choose NOT to take any hormones over the past 5 yrs.

Has anyone ever had a hysterectomy AND ovaries removed and still have the pain come back?

If so, what did it end up being?

Im concerned that this pain will end up coming back every 4 to 5 yrs- I asked the Dr. if I needed to go ahead and get on a 4 yr Lapo plan ... lol

Thanks for any suggestions and you stories ....
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Unread 08-03-2009, 02:33 PM
Re: Endo or scar tissue?

Any endometriosis that has been missed can grow and spread, even without ovaries and HRT! There are a variety of ways for the body to have enough estrogen to fuel the endometriosis--fat cells, plant estrogens in foods and supplements, conversion of dietary cholesterol to progesterone, then to testosterone and then on to estrogen, and endometriosis itself has been known to create its own supply of estrogen!

I would strongly recommend having surgery with an endometriosis specialist. You want a surgeon who is exceptionally skilled with not only recognizing but also excising endometriosis.

Adhesions can also be a problem and from personal experience I know they can hurt! Again, you want a skilled surgeon to remove them. The tricky thing with adhesions (scar tissue) is that the very surgery to find and remove them can create more of them!

My situation is not the same as yours as I do have both of my ovaries because removing them does not cure endometriosis so the pros of keeping them outweighed the cons for me. I have had surgery since my hysterectomy as the endo that had been left on my bowel walls created some issues and allowed for more endo to grow here and there. I also had adhesions issues, including an adhesion from that area of the bowel to my vaginal cuff. I had surgery with an endo specialist and he was able to clean everything up and I have done well since!

I wish you all the best and hope you find a solution for pain soon!

Unread 08-07-2009, 07:38 AM
Re: Endo or scar tissue?

Hi there!! I am revisiting for what I think may be the same reasons? I had a total hysterectomy like 2 years ago and I am suffering the same pain I did prior to the surgery!! I just visited the er(my drs. are on vac and sent me there for eval) and all tests for kidney stones, uti and appx ect. came back normal? I have horrible lower back pain and bleeding with bms and urine? It feels just like it did when the endo/adneyo? was present but no is hearing me! Could it still be there? could it be scar tissue 2 years later? OMG its horrible, and I don't know where to go for help right now, none of my drs are here!!
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Unread 08-07-2009, 12:22 PM
Re: Endo or scar tissue?

My aches for women who have a hysterectomy for endometriosis with the impression that they will be cured. Yes, some women do find that they do very well and don't deal with any more endo pain after their hysterectomy. My SIL is one of them. She had a TAH/BSO and even used HRT for years and is still fine, 17 years later! But that is not always the case.

If you ever feel that you have pain that could be endometriosis, talk to your doctors. If you cannot talk to your doctors or they are not listening, look for a doctor who deals with chronic pelvic pain issues. The best thing you can do is find an endometriosis specialist.

While you wait to see a doctor, keep a symptom diary and be as specific as you can be. You might want to try using ReliefInsite's online pain diary. The more info you can share with your doctor(s), the better!

in there and don't give up! You are not alone!

Unread 08-07-2009, 12:27 PM
Re: Endo or scar tissue?

I wonder if it could be adhesions since it's been 5 yrs since your last surgery? I know when she did my TAH she removed a lot of adhesions from previous abdominal surgeries. She said that could have been contributing to my pain level.
Unread 08-10-2009, 11:16 AM
Re: Endo or scar tissue?

I had a TAH 7 years ago and am quickly realizing I should have had the BSO done at the same time. My adhesions have bound my ovaries to the bowels and now a portion of the bowel needs to be disected out. I was also informed that the endo has reared it's ugly head again. It's being very mean to the ovaries this time. I too have asked for the lapro plan--he didn't find it as amusing as I did.
Unread 08-13-2009, 10:07 AM
Re: Endo or scar tissue?

Thank you for your posts. Although still suffering, I have made an appt. with my surgeon, who is still away! for the end of the month. He is the only so called specialist in our area that I have been able to locate, with a good reputation. Till then I suffer. I really hope its not this disease again-I just can't imagine living like this forever! In the mean time I will continue to use my heating pad, and Advil! ugh! thanks again, will post any info I receive.
Unread 07-12-2010, 11:02 PM
Re: Endo or scar tissue?

Hey guys!
I am so sorry to hear about all of your individual, unfortunate experiences.
I too have had excision of endometrios, adhesiolysis and a ventrosuspension of the uterus - 5 surgeries in the past 4.5 years.
Thankfully i do still have all of my reproductive organs and since my last surgery (3 weeks ago), have been told they look really healthy, but like most of you the pain has really effected my life - i had to take a 1 year hiatus from medical school due to these issues, not to mention the bearing it has had on my relationship.
One thing i wanted to comment on... is that endometriosis was excised in the first 2 surgeries and since then it has not recurred - i believe this is due to the insertion of the mirena IUS. I honestly urge those of you whom are having tremendous issues with the problem to try this before obtaining a hysterectomy - especially those who have not yet born any children.
Unread 07-13-2010, 05:50 AM
Re: Endo or scar tissue?

i had a lavh in 03..had a ton of complactions had a repair and a lap endo was always found. i had a lap in 08 where they found endo AGAIN! i ONLY have one ovary. in 08 they said that i had alot of adheshions due to all of the pelvic surgeries. (((weiser))) said it eariler that endo can almost produce its own estrogen without ovaries.
just wanted to add that even after a hyst,and the removal of one ovary in my case it has proven to come back all the time..
good luck!
Unread 07-13-2010, 04:30 PM
Re: Endo or scar tissue?

Hey coffeelover...
Thanks so much for sharing that, people really need to understand that it is definitely possible to have endo reoccur even after a full hysterectomy! Don't forget that the disease can displace itself on any organ in the body...and a LOT of endo is missed due to the fact that some of it is unable to be seen by the naked eye at often early stages.

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