Endometrosis... - Page 2 | HysterSisters
HysterSisters Hysterectomy Support and Information
Advertising Info HysterSisters Hysterectomy Support Tutorial

Go Back   Hysterectomy HysterSisters > Hysterectomy Special Needs > The Road Less Traveled

HysterSisters.com is a massive online community with over 475,000 members and over 5 million posts.

Our community is filled with women who have been through the Hysterectomy experience providing both advice and support from our active members and moderators.

HysterSisters.com is located at 111 Peter St, Toronto, Canada, M5V2H1 and is part of the VerticalScope network of websites.

With free registration, you can ask and answer questions in our HYSTERECTOMY forum community, get our FREE BOOKLET, access Hysterectomy Checkpoints and more.

You are not alone. The HysterSisters are here for you. Join us today!
join HysterSisters for hysterectomy resources and support

Endometrosis... Endometrosis...

Thread Tools
Unread 09-24-2004, 06:27 AM

The gyn could see it through a vaginal exam. She took a punch biopsy and it came back as endo.
Sponsored Links
Unread 09-24-2004, 06:53 AM

Hello, I am new here. Yesterday I posted on the Pre-op board and was advised to read this section and boy oh boy has it helped. I too am a suspect of returned endometriosis. I had my first hystorectomy 8/01, removal of uterus and cervix. They also removed endo at that surgery. Returned to the doctor in 9/02 with pain, tried the Lupron shot, but the endo was back. Had my ovaries removed 2/13/03. Since May of this year I have had severe pain every 4-5 weeks. Thought it was a stubborn bladder infection that would not go away, even had blood in one urine sample. Just last week after a CT scan, they found a mass on my left side (this is where all of my pain is). Yesterday, I had 3 different CT scans and a Biopsy (this was not pleasant as they had to go in thru my belly). I am waiting on test results, will be back at the Dr. on Tuesday of next week.

I have been an ill-monster at my home. My family is ready to ship me off!!! I am so scared, I do not want surgery again.

I have to say I feel so much better after reading some of the other posts. I guess I figured that since my ovaries were gone that this wouldn't return. But reading other peoples histories I now know that it does.

I have one question (I will probably have hundreds later but only one for now), is this hereditary? No one in my family has had endometriosis.
Unread 09-24-2004, 07:12 AM

I am the only one in my family with endo!
Sponsored Links
Unread 09-24-2004, 10:17 AM

How frustrating this disease is! I have been suffering from Endo/Adenomyosis for over 5 years (relatively short time compared to some). I had a double TAH (double uterus) in June but kept my ovaries because I was only 30. My doc was very open and honest about the fact that a hyst may not resolve all of my problems but felt that it was my best shot at some level of relief because of the Adeno. Even knowing that the pain could return it was still a disappointment when it did at 5 weeks post op.
The doc has been talking about possible taking out the left ovary since the majority of my pain is, and has been, in that area. I am not sure that I want to keep putting myself through surgery after surgery (my TAH was my 8th surgery, 4th for this problem) hoping that taking out this body part or that will resolve my problems. Sooner or later, I'm going to run out of things to remove and then what?
Even with all of this, I feel that the hyst was a partial success. I no longer have the monthly siege that was my period and my daily pain is more consistent than before surgery. We are just managing the pain at this point and I'm content with that for now.
There is a history of endo in my family--My great aunt had it and my grandmother (her sister) was suspected of having it.
Unread 09-24-2004, 02:47 PM

Endo frequently can be familial, but since the research into it is relatively recent, and laparoscopy has only been around for about 35 years or so, many of our mothers and/or grandmothers could have had it without knowing it. I think the statistic is that if a mother has endo, her daughter has a 7-fold risk of having it; (((Jude))) -- correct me if I've got that wrong .

I read a study the other day that reported that endo recurred in 30% of all hysterectomies. That's good statistics if you're one of the 70% with either early endo or with no history of prior surgeries or other conditions.

Those of us with auto-immune disease have a higher risk, since endo in part is due to inflammatory substances in the pelvic fluid. It's also well-known that women with endo have a much higher incidence of auto-immune disorders -- and that a girl with eczema and/or asthma has a higher risk as well.

I sure hope it's not back for ANY of us! Problem is, spiderweb adhesions can certainly mimic endo symptomatically -- and they are not easy to eradicate. Also, endo creates its own extra blood supply in the pelvis, and pelvic congestion or varicose veins can also cause these problems.

I hope this answers some of the questions. When I tell people that endo isn't malignant, I always add that it's hardly a "benign" (harmless) condition, either!

Unread 09-25-2004, 06:21 AM

Wow, what a tricky thing this endo. is. For those of you who wonder about heredity, my own history is interesting. My mother is 77, never had any problems with periods, but did have trouble with conceiving. She took DES in the 50's and early 60's, and had 5 kids. I am the youngest and have had the worst gyn. problems. Two of my sisters are twins and have both had endo. and other gyn. problems. My oldest sister has had some minor problems. It is interesting to me that I am the youngest and have had the most difficulty of the four girls in our family. I often wonder if there is any link of the amount of time my mother had DES in her system (the least amount in her system for my oldest sister vs. longer duration of DES by the time I was born). Just an observation that may or may not have an impact on my own battle with endo.

On a different note, I am nervous about my appt. for a CAT scan on Wed. Since my TAH/BSO last Jan., I have had a chronic pain in my right abdominal area....pulling,tugging, sometimes stabbing pain. I have also had the familar endo. pains on my left side where my ovary used to be, and occasionally on the right side. Those pains are tolerable, it's the darn pulling/tugging pain on the right side that is preventing me from returning to all of my activities. I am hopeful that the scan will at least give me some direction as to what can be done to help me.

What a journey this is.....so many ups and downs. I still have no regrets having the hyst. since it has removed a big burden of the frequent, painful bleeding. I also feel better with my iron level being up. I still get tired, but don't feel that foggy, dragged down feeling I would get with every cycle. I guess my struggles have been dealing with the discouragement from the hyst. not solving all of the problems that have come and gone over the past 25 years as well as the grieving of not having children. I had hoped that the hyst. would put all of the pain behind me. But, since this isn't the case for me, at least not yet anyway, I continue to find ways to stay emotionally healthy and tap into the positives as much as I can. I am thankful for this site and the many blessings in my life. It is these things that have prevented me from totally losing it!!!l
Unread 09-25-2004, 08:41 AM


It sounds like you and I have traveled the same road.... I also have a tugging & pulling sensation. And get stablike pains in center of my pelvis. Additionally, I cannot run .... It really is uncomforatble to break after my kids, etc.. Sometimes I forget and in mid stride, I go "uh,oh". I am wondering if there is adhesions in there???
Unread 09-25-2004, 12:23 PM

Hi Samm,

Me, too. I wonder about adhesions and I think many sisters have said the only way to find out is more surgery. Oy! I have the same problem with running, and have had to give up tennis, something I love dearly. I am also a PreK teacher and am so much more limited now as to what I can do with the kids. It is driving me nuts not being able to fully function at work as well as having to reduce my activity level in general.
Unread 09-26-2004, 06:48 PM

Hi, I am getting in on this a bit late but this is what I know. Endo can return for many reasons. #1 there is no cure a hyst even bso is a treatment, not a cure. I HATE when doctors say it is a cure, it is not.
If ALL of the endo is not excised durring your hyst it can and OFTEN comes back. This is NOT RARE. Endo, makes it's own estrogen, so it infact can "feed" itself. ERT/HRT or an ovary or even a part of an ovary can feed it further.
There is NO CURE for this disease.
The ERC (Endometriosis Research Center) website has more.
Blessings to us all,
Unread 09-26-2004, 07:18 PM


my original doc said the same thing. He said if any doctor tells you that a complete hysterectomy is a cure for endo, it is a big mistake. Endo does make its own estrogen and he also told me that microscopic bits could have been left behind that the doc could not see during surgery and it can grow back later in different places. I am like the others I hope my endo does not come back, what a horrible disease I sympathize with any woman who has to go through that.

Our Free Booklet
What 350,000 Women Know About Hysterectomy: Information, helpful hints as you prepare and recover from hysterectomy.
Answers to your questions

Thread Tools

Forum Jump

Similar Threads
From This Forum From Other Forums
3 Replies, Last Reply 08-08-2003, Started By fosterkat
11 Replies, Last Reply 11-04-2002, Started By redlawsk
7 Replies, Last Reply 08-14-2002, Started By princesstarrish
4 Replies, Last Reply 12-03-2001, Started By Dawnbrat
4 Replies, Endometriosis Support
2 Replies, Endometriosis Support
6 Replies, Hysterectomy Recovery (post hysterectomy)
0 Reply, Abdominal Hysterectomy Stories
2 Replies, Cancer Concerns - GYN
5 Replies, Hysterectomy Recovery (post hysterectomy)
2 Replies, Hysterectomy Options and Alternatives
2 Replies, Hysterectomy Recovery (post hysterectomy)
3 Replies, Hysterectomy Recovery (post hysterectomy)
6 Replies, Preparing for Hysterectomy (pre hysterectomy)


Hysterectomy News

September 25,2020


HysterSisters Takes On Partner To Manage Continued Growth And Longevity
I have news that is wonderful and exciting! This week’s migration wasn’t a typical migration - from one set ... News Archive


Calendar - Hysterectomies - Birthdays

Request Information

I am a HysterSister


Featured Story - All Stories - Share Yours


Your Hysterectomy Date

CUSTOMIZE Your Browsing