For Danielle... Dr. wants me to have a hystorectomy due to adhesions

From: Jenny (jenklow@hotmail.com)
Tue Apr 1 00:01:11 2003


At Fri, 28 Mar 2003, Dawn wrote: Dear Danielle,

Sorry I didn't respond to this sooner, but I have not had such a good weekend with the pain from my adhesions. I just read your post and really felt like I needed to share some of my story with you.

I have always had problems with my female organs. I always had really heavy periods with lots of huge clots. I would flood my clothes several times in an hour and be in bed for 2-3 days with severe cramping. From the time I was 16, at least, I produced cysts on my ovaries that would cause alot of pain. After the birth of my 3rd child I had my tubes tied. THis just made things worse. I had periods for 2 weeks every 2 weeks. We finally decided to get my tubes reversed even though the doctor said it would not change anything. Well it did. My cycle went back to its 7-8 days. It was still heavy but not near as long. Then I had an ectoptic pregnancy. We later found out that the ectopic pregnancy was caused due to adhesions. It wasn't until 2 years after the ectopic pregnancy that I found out I had endometriosis. No one had ever told me. I had ultrasound techs and doctors ask me if anyone had ever told me I had endomettriosis, but no one ever came out and gave me that diagnosis. After being asked if I had been told that several times, I finally asked one of my doctors when I was in the pre-op holding area if I had it, and she said yes. I had already had 2 other surgeries since my tubal ligation and the tubal reversal. The 2 other surgeries were to remove adhesions and hemorrhagic cysts on the ovaries. In Feb 2000, I had another surgery to remove adhesions, hemorrhagic cyst formed by endometrisosis, and 3 inches of my colon. Only 1 month after that surgery, I already had another hemorrhagic cyst, the enodmetriosis was over 2 inches thick in the uterus, and I was in constant pain. So I decided to have a hysterectomy thinking that would be my cure-all and I would no longer have any pain. That has not been the case at all. When they did my hysterectomy, they removed adhesions again, and they took out even the ovaries. In less than a years time (5 months), I was in severe pain. Two months later, I was bedridden due to the pain. They even did an adhesiolysis laparoscopically and I never got any relief from the pain. I only got worse. I had another surgery that year to remove the adhesions and do some repair work to body parts affected by the adhesions in some way or another. I never have been without pain although with that last surgery it was greatly lessened. That only lasted a few months. I have now been going through pain management for the last 2 years. I am in need of another surgery. I have adhesions all along the small bowel, the transverse and descending colons, my rectum, and the bladder that I know of. My left ovary has grown back and is producing cysts. They call it Ovarian Remnant Syndrome. Apparently the ovary is one of the organs that can regenerate itself if there is a small piece of it left. ANd of course, my body seems to have a will of its own. Anyway, my point in all this is to tell you that having a hysterectomy is not a cure-all. If anything, I have more problems now than I did before. We had tried everything to reduce the endometriosis before I decided to have surgery. I just wanted my body to quit hurting. Now I have problems with my bladder and colon. I can't empty my bladder. It is retaining urine and they don't know why. The urine backs up into my kidneys and causes pain there. I have problems with my bowels even moving. There are a limited number of laxatives I can take because they make me cramp really bad and pull on the adhesions which causes more pain. And it not good to take laxatives because it causes your bowels to lose their elasticity. I can't find a doctor who is willing to take care of even the bladder problems because they hear "adhesions" and freak out or think they are going to get involved in a law suit. The last doctor I saw last Wednesday thought I was obsessing over my adhesions (because I have educated myself and was telling him things I have learned about them) and told me that I need to talk to a psychologist to help me deal with the stress of it. Then he put me on a medicine for IBS to help get my bowels moving. It did alright! I was on the toilet from 12:30 a.m. until 9 a.m. having diarrhea like water with cramps that doubled me over. I looked at the patient information packet that came with the medicine. It said "You should not take Zelnorm if you have abdominal adhesions causing pain and/or an intestinal blockage". So just remember that just because they are a doctor does not mean they are GOD and know all the answers. Do like Dawn said and educate yourself. Do not make any rash decisions. As for me, I have talked to several of my new friends that have gone to Germany for surgery and are no longer pain free since they went there and had SprayGel used in them. SO my plan is to do whatever it takes to get myself over to Germany where I can get the adhesions removed and SprayGel used inside me. That seems to be the only option with hope. I wish you all the best and hope that you too can be find the best option for you and be pain free. If you need anything, email me. I would love to talk more to you. I am sorry this is so long. I hope it helps. That is all I want it to do.

Love and hugs, Jenny

>>Hi, my name is Danielle and this is my first time posting. I've always
>>had pelvic pain for as long as I can remember, at around 19 I was told
>>that I have endometriosis. The dr. said it was a mild case and pretty
>>much disregarded me. In the years since I have had 4 laps and 2
>>c-sections (both children were concieved w/fertility meds) This last lap
>>I had the dr. said I had severe adhesions, that my uterus and bladder
>>were fused together and that I would need a hystorectomy in order to
>>aleviate the pain caused from the adhesions and the endo. I had a 2nd
>>opinion yesterday and that dr. was very wishy washy and threw it back
>>to me, well do you want to have it done? When I said no he suggested
>>lupron or depo. I have tried it all, and I no longer wish to be forced
>>into menopause and how would that help w/ the adhesions. I'm very
>>confused and in pain daily. That is the other thing no dr. I see will
>>address the pain issues, whenever I ask for pain meds I always feel as
>>if I'm some kind of freak pill seeker.
>>
>>Anyway I found this site and really hope to hear from some women that
>>can understand.
>
>--
>I'm no doctor, just a fellow sufferer like you but I hope you consider me a new friend.
>


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