ENDO Messages for December, 2003: Re: endo and chrons

Re: endo and chrons

From: Chris (anonymous@obgyn.net)
Tue Dec 30 19:12:25 2003

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My laparotomy was 02/01. After that I was on continuous birth control pills for a little over a year. I went off the pills to try to get pregnant. We tried for over a year without success. As time went on I started having symptoms again...a little nausea here, and a few pains there. Suddenly, I can barely eat anything without severe stomach cramps and bowel problems and nausea etc. Anyway, I went to my gyn about 7/03 complaining about my digestion problems and inability to get pregnant, and I told him I thought the endo was back. He then sent me to a reproductive endocrinologist. From there I had a hysterosalpingogram which showed that I also had one tube that was dialated and he said "filled with toxic fluid" otherwise known as hydrosalpinx. He said he had to remove that tube because even if I did get pregnant the fluid would enter the uterus and kill the fetus. I couldn't wait to have surgery because I thought I would feel better again. I found out after surgery that all my organs are stuck together again. The bowels to the uterus and fallopian tubes, and the ovaries to the bowels and inside wall of the body etc. The doctor said that the adhesions were so dense he couldn't fix them, so basically, he left everything there the way it was. All he did is detatch the damaged fallopian tube from my uterus. He didn't even remove it from my body, he just snipped it and left it there! He said I have to have IVF in order to get pregnant because my other tube and ovary aren't even near each other due to the adhesions. It wasn't long before I realized that not only did my problems not improve, they have gotten worse. I called my gyn in tears telling him what happened. I wanted to know if he thought it was safe for me to continue with the IVF and get pregnant in this condition because I can barely nourish myself and I am sick all the time. I can't believe that he told me to go forward. He said I might feel better when I am pregnant. And the two of them weren't really acknowledging that my bowel problems were related to my bowels being stuck to everything by the scar tissue. Duh! My gyn told me that in order to fix my adhesions he would have to cut me open again and that would just cause more scar tissue, so I basically have to try to live this way until it's not possible to live this way anymore. It was then that I found this web site and decided to take my life out of their hands and learn everything I could for myself. I found out there was such a thing as an endometriosis specialist and laparoscopic specialists who could do my surgery without cutting me open. I'm sorry I can't give you my experience with that doctor yet because I haven't even seen him yet but there is tons of information about him on the internet that make me think more and more that I've made the right decision. After I see him I am going to see if he thinks I can get pregnant on my own after surgery and if not, I will then go forward with the IVF when I'm in a healthier state. I'm sorry this message is so long. It's hard to tell the whole story and make it short. Anyway, to answer one more of your questions about how long it took to heal after the laparotomy. I went back to work after four weeks. That was difficult though and I forced myself because I didn't have that much time off that I could take. It took a couple of months and I was pretty swollen for a while. If you have any more questions or just want to talk feel free to e-mail me privately if you want. Hope this helped...it seems we have a lot in common.

At Tue, 30 Dec 2003, Paula wrote: >
>I'm glad to know that I am not alone. The pain is unbearable. How many
>years were you free from pain? How long did it take you to heal? Were
>you able to have kids after? I was told my tubes are dilated, and filled
>with fluid.
>
>They will have 2 doctors performing the surgery, one for the bowel and
>one for the endo. It will be the same type of surgery that you had ..a
>laparotomy. My case has become very severe. My chrons is very active,
>but I know a lot of it has to do with my endo. It's not your typical
>chrons symptoms, since I am constantly constipated, but it's very
>painful.
>
>Is there anything that I should be aware of, before I go into surgery?
>
>At Mon, 29 Dec 2003, Chris wrote:
>>
>>Hi, I have had the same experience as Paula. I had all the symptoms of
>>IBS and when I had my surgery (which turned out to be a laparotomy),
>>they found that all my organs were fused together by the scar tissue.
>>After the surgery all my bowel problems were gone. A few years later my
>>symptoms have returned. I had another lap and the doctor found that my
>>organs are again adhered to one another. He left me that way because he
>>said the adhesions were too dense for him to correct laparascopically. I
>>am going to a laprascopic specialist soon to hopefully have this
>>situation taken care of. It is just so nice to know that there are
>>others out there going through the same thing.
>>
>>At Mon, 29 Dec 2003, D.N. wrote:
>>>
>>>Paula,
>>>
>>>I was misdiagnosed with IBS. When I had my hyst(because of fibroids -
>>>endo was suspected), my sigmoid colon, left ovary and uterus were all
>>>adhered together. That is what caused my problem. I did not have IBS.
>>>I don't know if this info helps in your situation, but just know you
>>>aren't alone in the problem with endo in that location. Advise before
>>>surgery make sure you are completely bowel prepped- including
>>>antibiotics. The surface of my colon was denuded, but thankfully they
>>>didn't perforate it. I wasn't bowel prepped.
>>>
>>>Best wishes,
>>>D.N.
>>>
>>>At Mon, 29 Dec 2003, Paula wrote:
>>>>
>>>>Has anyone been diagnosed with Chrons and endo. The dr's say that my
>>>>ovaries and my tubes and my bowels are all stuck together.
>>>>
>>>>I am constantly in pain, not sure if it's because of Chrons or endo. I
>>>>am planning on have the surgery to get rid of the endo as well as the
>>>>chrons.
>>>>
>>>>Any advice?
>>>>
>>>>Thanks
>>>>
>>>>--
>>>>Looking for a pain free life :-)
>>>>
>--
>Looking for a pain free life :-)
>

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In reply to: Paula: "Re: endo and chrons"
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