Goerwitz

Hello Amy,

I just finished reading your interesting story (plus the one that Richard wrote) and both of them made me feel like I know you already!

I am like the hundreds of others out there who have a bunch of the symptoms of "endo" but who doctors seem to keep putting on hold for the time being. I do finally have a consultation scheduled with Duke University in North Carolina for October 10th....but that is if I haven't died or killed myself by then (just kidding).

I have been having severe pain starting almost a month ago. I went to the doctor initially because of my bowel problems. I have never been someone to go every day,but at least I went a few times a week. Over the years (and after having four laparascopic surgeries and five D&C's), the bowel symptoms have increasingly gotten worse until I had gotten to the point where I could no longer go by myself. I would wait as long as I could, hoping for something to happen naturally, but finally after 19, 23, and 27 days at a time (no joke!) I would have to take something (Milk of Magnesia double doses or a laxative of some kind) to even get my bowels to cooperate.

I had heard all the stories already: drink more water, eat more fiber, blah, blah, blah, and I tried them all, hoping that I could fix my problem myself. However,along with the terrible bowel problems lately has started the pain,the never-ending, never-ceasing, stick a knife in my belly and turn the darn thing kind of pain!

In the last month and a half, I have had every test imaginable: colonoscopy, upper GI, small bowel series, pelvic exams, etc. So far, everything is coming up normal. Meanwhile, I am having to take narcotics (Darvocet) to ease the pain just to function.

A few weeks ago, this brown stuff that looked like 'chocolate pudding' was coming out of my vagina. I spotted for a week before I started my period, and I started hurting 'rectally' although I wasn't even able to go to the bathroom.

In this last little while, I have been researching everything I could get my hands on about every symptom that I have (which includes the regular: hurting with period, hurting with sex, rectal pain, severe lower abdominal pain, etc.) and everything that I read seems to point to endometriosis. I can't believe that the doctors are looking right by this. After I read about what they call "chocolate cysts," I couldn't believe that maybe that is what had ruptured inside me and could be causing so much pain. I tried to get in early to see the specialist, but he wanted to see my test results first, (which all say normal and show absolutely nothing), so he decided that I will have to wait my turn (until October!) like all the rest.

I am hoping that I can cope and make it until October 10th (which is still only a consultation and not the actual laparascopic date). But if I can't, I've already made up my mind to visit Duke's emergency room so maybe they will take me seriously! I guess they figure since I am "dealing" with the pain and I'm not lying in bed 24 hours a day that I can't be hurting too bad!

Oh well, I am hoping for a success story like the few that I have read about, and I just wanted to touch base with you and tell you that your story gives me hope unbelievably! I just hope that there is not more damage being done to my insides while I am waiting to be seen. My pain is unreal!

I am 30 years old, have a husband and child, and I am a stay-at-home mom of a nine-year old girl. I cannot be a productive (or good, for that matter!) mom or wife or anything as long as I am hurting this way. I hope that I can contact you in October to tell you that things are so much better.

Thank you for listening, thank you for letting me "vent," and thank you for telling your story to the world for people just like me to take heart from!

LaVerne

September 17, 2000

Amy--

Thank you for writing me back. A little success at last! I wound up in the emergency room last Monday from the pain (I had taken four Darvocets and was still hurting) and then they gave me a Demerol shot and I continued to hurt for the next two hours until the shot just knocked me out in the head. (They did a transvaginal sonogram and found multiple cysts on my ovaries, but nothing else.)

Anyway, when this happened, my husband called Duke and got my appointment moved up to today! I went and talked with Dr. Haney today and they are going to get the ball moving at least, but I have to say that I'm still not totally satisfied with the results.

He has scheduled me for a laparoscopic surgery on October 13 and says that it might turn into a laparatomy (and maybe bowel resection,etc.) depending on what they find. All of that I understand. The thing is--he still doesn't seem to believe all the pain that I am experiencing.

In the meantime, I am going to research some and see what other info I can come up with. I pulled up different cancers (like ovarian and rectal) and find that I have lots of the symptoms that come with those! I don't think that I have cancer, but best to be sure, so I have decided to have a CA-125 test done that checks your blood just to be sure.

Thanks again for getting back in touch with me, and I just wanted to let you know that at least I am on my way!

LaVerne

September 27, 2000

Hello again, Amy!

Just wanted to touch base with you again and say "hello." I know that you don't know me from Adam, but I feel like we have a "kindred" spirit since we both know what this disease is like.

My laparoscopic surgery proved successful on October 13th! My doctor found endo throughout my entire pelvic region. It was above my uterus and below my uterus. It was all over the pelvic floor. It was in the cul-de-sac, and there was fluid standing an inch or more deep. My chief complaint had been rectal pain,and bingo,there was a reason! My entire rectum and surrounding area was covered in endometriosis, black and red, plus my entire rectum is adhered to the side of my pelvic sidewall (kind of glued to the side of my stomach!). Then (the biggie!) he found endometrial implants imbedded in my bowel wall! Hence so much of the pain!

So, after much discussion with the other bowel doctor, they have decided that the best course of action to take is to do a bowel resection (where they take the bad part out and connect the two good ends), remove all of the endo surrounding the rectal area as carefully as they can, and then to do a hysterectomy so I won't have this coming back. He has explained everything to me and given me all my options. He has even said he can do the bowel resection now and leave my uterus for another year, if I want to try and have more children, and I can go on Lupron for a while or something like that to hold it at bay, if I want more time to make a decision. But he is going to leave my ovaries and my fallopian tubes (because they are in good condition), and he is even going to leave my cervix (so it will be a sub-total hysterectomy) because it is really too close to where the bowel resection will be done, and leaves a huge open place for infection if they do it all at once. So, I am still contemplating my decision, but I'm pretty sure that I'm going to go for it.

My surgery to have all of this done is scheduled for November 27, and he says that I should expect five to seven days at Duke Hospital, and then about a two-month recovery time. That sounds pretty drastic to me, but considering all the pain that I have been in, I think that it will all be worth it.

Thank you for returning my letter and I will keep you posted on how everything goes. I hope that you are still feeling better and I would welcome any comments you may have on what I am about to proceed with. It is wonderful to have someone who knows a little something about this.

LaVerne

November 11, 2000

In May 2002, Amy asked LaVerne if she could publish the above letters on the Web and this was her response:

Okay, to be quite honest, I'm not sure that I entirely love the thought of everyone out there in the world knowing about my health problems, but if it could help someone else identify their own problems then I would feel that I have contributed something good.

Here goes--On November 27, 2000 I had my scheduled laparotomy. Like I had said before, they had planned a supra-cervical hysterectomy (they left my ovaries and fallopian tubes plus my cervix and just removed my uterus) and a bowel resection to remove the part of my bowel with the endometrial implants. However,things went a little differently when they got inside; they actually they went better than planned. They discovered that I had three endometrial implants buried inside my colon, but they were able to cut them out without doing a bowel resection. This was a great relief to me when I awoke, because they had already told me to be ready for a temporary colostomy (a "bag") while my colon healed and adjusted. Since they didn't have to do a resection they didn't have to do the ileostomy.

I had two doctors during my surgery. Dr. Haney was my "gyne" doctor, and he removed my uterus and did all the "female" work that needed to be done, and Dr. Ludwig was my "bowel" doctor. He was the one who "removed" the implants in my bowel.

Needless to say, I spent a week at Duke University recovering. The first couple of days were rough, and without that little pump in my hand that administered a shot of morphine every eight minutes I don't think I would have done too well. Not only did I have a C-section scar across my lower belly now but I had been burned with a cautery gun (they blamed my bowel doctor, Dr. Ludwig) and had two welps that were raised and sore. They also pulled severely when I stood up to walk. I had to be treated with burn salve for several days so I could make my daily trips up and down the hall. I was relieved when it was finally time to go home.

Once at home I immediately noticed a few changes. For starters,I was starting to be able to go to the bathroom on my own! Within a week or two I was going to the bathroom every day (like a "normal" person)! Also, as I got stronger and got through the initial pain I noticed that my stomach no longer hurt down low. I wasn't nauseous,there were no "pulling" sensations inside and, of course, no more periods! (How could someone NOT miss that!) It was so great to be feeling good again!

THREE MONTHS LATER...

Suddenly, little by little, I began having a nagging sensation of rectal pain once again, kind of a "pressure-pain" kind of thing. And then some bleeding here and there and pain during sex, except different than before. This time it was a "stop-what-you're-doing-right-now!" kind of pain and my heart sank as I knew that something wasn't quite right. At my check-up visit in March my doctor asked me how I was feeling and I relayed the changes. When he physically checked me he found another nodule! It was very large, and he seemed to be anxious about it. He immediately put me back on a hormone and told me to come back in two months so he could check the size again. He also wanted me to try a Lupron shot, to stop the growth of the nodule. I took my shot, and my hormone, and headed home again.

When I went back to the doctor in May the nodule had dissipated some and he felt much better about it. He felt that the Lupron shot was a big contributor, and even though I had always heard horror stories about the shot he led me to believe that it was best for me, and so I trusted him. He told me that I could continue to take the Lupron shot (one every three months) plus my hormone for an "indefinite" amount of time. If the problems continued we would talk about going back in and doing another surgery.

MARCH 2002 (almost one year later)

I started to experience some weird sensations again. Once again I am having problems going to the bathroom, some pain during sex, quite a bit of a "pressure-pain" feeling rectally and vaginally, and beginning to believe that I might have some sort of "tear" vaginally. I called Dr. Haney at Duke to see if he could see me, and the receptionist made me an appointment for three weeks later, and said that she would confer with Dr. Haney ASAP. She called me back in ten minutes and I was excited, thinking that she had moved my appointment up. Instead, Dr. Haney had cancelled my appointment and wanted me to go straight to my bowel doctor. I was disappointed that he didn't want to see me, and so I made an appointment with my local doctor just to see if I was "okay."

My doctor and his physician's assistant both checked me physically and both concurred that I now have three nodules located between my rectal and vaginal wall which means--I don't know. He said there were several different things that he could do to see if there was an actual tear (fistula) from the rectal wall into the vaginal wall but said that sometimes the body would heal itself. So,I decided to try that approach. He gave me some antibiotics in case of any type of infection and I decided to give myself a little time and see how things go, since I am okay and not in any danger yet.

Would I have the surgery again? In a heartbeat! It relieved unbelievable lower pelvic pain that I had experienced for years, and gave me relief from the terrible periods that I had gone through since I was a teenager. Would I do things differently? Yes, I think so. (Of course, they say, that hindsight is 20-20.) I think I would have had them to go ahead and take my ovaries and fallopian tubes while they were in there because now they seem to think that the ovaries are what is contributing to the endometrial implants growing! And if I would have known that then I would have had it ALL removed!

This is a terrible, terrible disease that no one fully understands until they have been through it. I hope that one day I will be totally pain free and disease free, but in the meantime, I will continue to fight it. I will keep you posted on my condition, and let you know how things go. If you would like to contact me to ask me questions or anything, please write me at: menvnlou@citlink.net, and please write ENDOMETRIOSIS in the subject line. Thanks--I wish all of you the best with your own personal fight.

LaVerne
menvnlou@citlink.net

May 2002

Amy and Richard Goerwitz
Amy@Goerwitz.com
Richard@Goerwitz.com