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active endo after TAH/BSO?? active endo after TAH/BSO??

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Unread 01-26-2005, 06:42 PM
active endo after TAH/BSO??

Hi Sisters,
I went to the uro/gyn specialist today, as I've had micro-scopic blood in my urine (have had it for 10 plus years) and the GP wanted it looked at, so I figured I'd find a uro/gyn since I still have this tenderness, achy abdomen thing going on at 15 months post-op. My regular gyn, who did my surgery calls it "abdmonial wall syndrome" and said I should do sit=ups! This Dr wants me to see this endo specialist, as she states that endo could still be active even after a TAH/BSO! Now, I thought endo "feed" off of estrogen & blood. I no longer get a period, *duh) and I am not taking any HRT. So what can the endo feed off of?? The surgeon told me that any endo would starve & dry up after BSO? This new Dr said it may be scar tissue, but it sounds more like endo to her?? I am so confused. How can doctors have such different ideas on this endo issue? How can I have endo problems now, when I never had the classic endo problems before? I never had heavy periods or cramps. It was cysts that was causing my pain before surgery. This is all so very confusing! And, of course if it IS adhesions, even another lap can cause more, so I may end up in worse shape later!! I had a CT scan, which showed nothing, and I know endo or adhesions don't show up on scans, so the only way to be sure is another lap. My question to you sisters is, would you risk another lap, and maybe more adhesions, or leave well enough alone. I just want to get on with my life (and maybe wear a pair of jeans again). Thanks
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Unread 01-26-2005, 07:25 PM
active endo after TAH/BSO??

Oh, I am so sorry it may be back. Fact is a hyst/bso is a treatment NOT a cure for endo. If any endo was left behind, (which happens more often than not) it can make it's own estrogen and continue to grow. Most endo 95% is not on the reproductive organs but in other areas of the pelvis, so return after a hyst?bso is not uncommon.
A couple of good sites about endo are:
on the left there is a common questions link, VERY informative. Did you know that even menopause is not a cure!???
this group is chock full of women who have been living with endo. Many of us have had hysts with BSO even.
I am sorry this has happened to you. I am dealing with the same thing and then some!

Unread 01-27-2005, 06:45 AM
active endo after TAH/BSO??

I think right now, I would look for more tests and other possibilities before doing another lap...use that lap as a last resort. Do you like this new doc? What did he say about the micro blood...I have had this since hyst and cultures never grow anything and most of the time, no white cells noted in urine either...I had a pelvic bone scan, and kidney/bladder u/s to look for a reason and they both came back negative. I am thinking it is caused by my adhesions since everytime they have been removed they were always all over my bladder. Good luck to you and let us know how you are doing and what the next step is.
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Unread 01-27-2005, 05:45 PM
In pain?

I was just wondering if you are experiencing any pain or is it just tender? I'm over a year post op and still have tenderness and feel some pulls and twinges here and there. I could feel the endo before surgery and now it only feels like adhesions. I also cant wear jeans comfortably but contribute it to slow healing.

Peace, Cheryl
Unread 01-27-2005, 05:53 PM

Hi Cheryl,
I wouldn't call it "paiN', as compared to the pain with the cysts this is nothing. But It IS there, everyday. When I get up in the morning I feel really "normal", as the day wears on, and I sit full time at work, I start getting this "pinching" sensation down by my bladder, where my ovary was adhered. If I wear certain types of pants at work, the tenderness comes. If you push on certain sports on my abdomen when I am standing, it feels bruised. If I could live in sweat pants and not work, I would be OK, but this is annoying! I asked my GYN in November if I could just be a slow healer and he said, "no, you are healed" This is an abdnominal wall thing. Then this other Dr says maybe active endo or adhesion, then the GP says that's the way you healed and your not gonna get any better. So is is all very confusing!!! All I know for sure is that if I went through all this, and now am dealing with surgical menapause, possible endo or adhesions that I am not a happy camper!!! Is this how you are feeling???
Unread 01-27-2005, 05:59 PM
active endo after TAH/BSO??

May I ask if you have had your estrogen levels checked or an ultra sound? With the u/s they cannot see the endo but they can see if you have ovarian remnants, which is always a concern with post hyst endo patients.
Unread 01-31-2005, 07:17 AM
active endo after TAH/BSO??

Marian you said you had adhesions all over your bladder. What did that feel like? I've been in pain for a while and over the weekend I've had that tugging, pulling, and sometimes sharp stabbing pains in my lower abdomen and above my incision on the left side (that's where all the pain is) is sooo swollen and VERY sensitive. At times it's like I can feel my bladder and urethra and it almost feels like something is on it. I have a previous history of severe endo and adhesions, and this pain is all too familiar. In the past I had endo on my urethra.

Unread 01-31-2005, 10:14 AM
active endo after TAH/BSO??

Dear whatsnormal,

My heart goes out to you...and I can totally understand your frustration with each of your dr's having something completely different to say...There are so many different theories about Endo...In my heart I believe that they don't know...

I remember when I had my hyst over 4 years ago; each doc I saw said a hyst was the only answer. Previously, I had tried different drug treatments, had several laps (with excision of extensive Endo). Each time I would have the pain return in a matter of a couple of months or less.

I eventually agreed to have a hyst in hopes of getting rid of the Endo (I too had cysts)...To this day I'm still suffering with severe pain from Endo (as well as other diseases / illnesses). I have tried natural healing, diets, acunpuncture - you name it. It seems that I haven't found the answers yet - but I know that they are out there...somewhere.

The risk of another lap is a decision you need to take some time to think about. Adhesions are horrible...Perhaps there are some other treatments you can try? Have you considered discussing Progesterone with your doc? I also agree with Carrie, in that you need to have your levels checked.

Please let us know how you make out and know that your sisters are here for you...S

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