Hysterectomy for no reason? Please help!

I am 3 weeks post LAVH. Since I was about 16 years old I've suffered from extreme pelvic pain. Three years ago I had a lap and was told by my Ob/GYN at the time that I needed a hysterectomy within 6 months for stage 3-4 endo and that I wouldn't be able to keep my ovaries if I didn't have the surgery soon. I thought about it and at the time it was the wrong decision for me as I still wanted another child. About a year after having this child the pelvic pain really intensified so I went and saw my new OB/GYN. He touched my uterus during the pelvic and I jumped off the table from the pain. He told me he thought I had adeno and the only real way to get rid of that is a hysterectomy.

I decided that based on my new doc's opinion and the old doc's finding of endo that I was ready for the hysterectomy and ready to feel better.

After my surgery the doc told my DH that I had NO SIGN of endo ANYWHERE, and that he was glad I switched docs and that for whatever reason the old doc just "wanted a uterus." The path report came back with no adeno either, so WHY did I put myself through the pain and inconvenience of this surgery?!? Are there other reasons that may have been causing my pain? I'm very concerned that the net result from this will be NOTHING and I'll still be in extreme pain because the cause was never uterine to begin with. Any words of wisdom or advice would be appreciated. I'm quite upset about this and feeling a little used.

Jen- no reason for hysterectomy

Jen,

How are you feeling now? From your post it sounds like you are out of pain now (but anticipating it might come back later?) and that up until the surgery you were in constant pain.

There is another condition called pelvic congestion that might explain your pain if you don't have endo or adeno. I really hope the operation is the end of the pain you've had.

Jen -- As your doctor if there were varicose veins in your uterus. I suffered for years through drs who told me my pain was "all in my head," as they could find nothing wrong with me. I finally found a wonderful dr who knew about pelvic congestion syndrome (that's the classy name for varicose veins in the uterus), and knew that it can cause extreme pain. Based on his diagnosis, I had a TAH/BSO on July 11. I am now free of the pain that plagued me for more than 20 years!

I certainly am not a doctor, but your symptoms sound similar to mine. I pray that, whatever the cause of your pain, you will find yourself to be pain-free and on the way to a better life!

Best wishes,
Helen

Jen:

What exactly did your pathology report say? It's possible to have adeno in some spots, but if the pathologists didn't sample that exact spot, they may not have "seen" it.

If you can, get copies of the operative report from three years ago and from this surgery. The current report should be easy to get, especially with the new laws...all you have to do is ask. Your best bet for the old report is to go to the medical records division of the hospital where it was done and ask them...that way the doctor doesn't have to be involved.

Hopefully, getting hold of these and comparing them will really help you to understand exactly what has happened. For example, my surgical report mentions that they had trouble controlling the bleeding as there was "extensive and abnormal vascularity" throughout my pelvis...this is the sort of thing that endo can cause, and that can lead to the pelvic congestion syndrome that the others here have mentioned.

I further hope that you finally are getting relief from this pain that you've experienced all these years. I didn't have a choice with my surgery -- it was for possible cancer -- but have been pleasantly surprised that it has for the most part improved the quality of my life. I still have some problems as a result...but they are NOTHING like what I'd experienced before. And no more miserable periods, either.

If you had flooding and heavy bleeding with clots as well as the pain, you may have had diffuse adeno which just wasn't sampled at the time of pathology. Also, if your uterus was "overweight" that can be a sign that something was there (again, likely adeno). A normal uterus should weigh between 40 and 50 grams, so that gives you a guideline...

and I hope you find some answers...and some final relief from all the pain you've had!

Audrey

Dear Jen,
I am hoping that the hysterectomy addresses your pelvic pain. I recently had a TVH for what my doctor suspected was adeno. Like you, I have suffered from severe pelvic pain since my first period at age 14. Several laps diagnosed minimal endo, which received laser treatment, but my last lap (a year ago) showed a "clear" pelvis in terms of the endo. I still had severe pelvic pain, especially during my period, so I went ahead with the TVH. My pathology report came back negative for endo, as well as adeno, so I was very confused about why I was having so much pain, and wondered if I should have had a TVH after all. My doc and I discussed it, but he really didn't have any clear answers, except to say maybe it was endo they couldn't see. I came to the conclusion that whatever was causing the pain, I was glad to have it over with. Suffering every month had taken so much out of me. I am looking forward to never having another painful period, and, hopefully, no more pelvic pain. Maybe another discussion with your doctor about your concerns will ease your mind about the fact that you had this surgery, and I truly hope that you do not have a recurrance of your pain.

Jen,
I know how you feel (I wondered if I was the only one that didn't have a "real" diagnosis and I was afraid to even post). I have had pelvic pain and a lower backache on and off for about four years--mostly on. LAP shows ovaries and uterus to be normal with no endo. I do have some enlarged blood vessels in the uterus. This episode has been daily 24/7 since January of this year. It feels like a period all the time. I am scheduled for a LAVH on September 2 although my doctor has made it clear that this may not stop the pain. It's scary to do it when you don't know for sure if it's what you need to do. I also seem to get criticism from other people so I don't talk about it any more. I also can't decide whether to keep my ovaries (doctor is leaving it up to me). I turned 50 the day before yesterday.

Do you still have the same pain or is it too early in the recovery to tell? I hope you feel better soon.

Jean

Jen,

You're not along, my story is similar. I started out with not a lot of pain, just 3 week periods that even BCP couldn't control. My dr suggested a lap last year. I agreed not because I thought it was endo, but because I was scared of what else it might be, and needed to know something. Turned out he was right, and he said I had the largest masses of endo he had ever seen. And he was also pretty sure I had adeno based on what he saw.

Six months later, when all the symptoms I had before the lap were back, plus now accompanied by the pain, I tried BCP again, followed by 3 months of Lupron, and finally scheduling a TVH.

Well, for some strange reason, I was really hoping for the pathology report to list everything short of cancer, so I'd have no doubt that surgery had been the right thing. But just the opposite, no endo, no adeno, just an enlarged, "boggy" uterus (classic sign of adeno). I had my TVH at a different hospital than the Lap, which is my Dr's explanation for them not finding endo. He felt that the hospital that had found it once would have checked more samples to find it again. Plus, by the condition of my uterus, he basically implied that he thought the pathologist just missed the adeno because they took a "good" sample.

At first I was really upset by this. But now with a few weeks to absorb it, I've decided there's no going back, and I definitely don't miss my 3 week periods, and as of 6 weeks, my abdomen is pain free. So I'm still happy, and hopefully you will be too.

Pam