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Re: ENDOFrom: Kristy (anonymous@obgyn.net)Sat Oct 27 16:38:11 2001
Wendy, My name is Kristy and I am 30. I've had endo since at least 16 but didn't get diagnosed with endo until Aug of 1997. In the months before I had the surgery though I was in a ton of pain and the cramping and pain was 100 times worse than what occurs with periods. Well, finally, it got to the point where I went to my family dr to ask for some help and they wanted to send me to a GI dr b/c they thought that maybe all my pain was related to Irritable Bowel Syndrome but I knew that wasn't the case. The pain got so bad that I was in bed a lot. Sometimes I would also feel like there was plastic inside of me and it was especially noticeable after I would sit for a while. The endocrinologist that I was seeing for another problem that was female related said that he thought I should go to a gyn about this. Unfortunately I didn't do that (not until much later). I didn't go b/c I thought that at 25 I was too young to go to a gyn b/c I wasn't married or had a family (that is still the case now). I didn't figure that I was going to need a gyn until I was 30 (which of course is now) b/c I had heard that the 30s is when most women started having female problems. Well, as I have since learned more about all of this I knew that this wasn't true. So my mother had talked to a friend of ours who was in training to be a surgical technologist. She told my mother about that they could do surgery to see what was going on with me. It was funny that she mentioned this b/c I was starting to get to the point where I had gotten so disgusted with all of the pain and being treated as if this was all in my head both by the family dr, the GI dr (even though I didn't go thru the tests b/c I knew that the pain was too low for where they thought it was), and of course the very first gyn that I ever went to. They all kept insisting that it was the Irritable Bowel Syndrome. When I had told them that I felt like my female organs were going to jump out of my abdomen they just laughed at me. That was when I knew that they were telling me it was all in my head even though I knew that I wasn't crazy. So the friend that was in training told me about laparotomy. She had known a little something about endo (I don't think she has it though) and answered some questions for me about it b/c it was then that I started to do some research on endo but yet not sure just what I was looking for. She told me about two of the drs that she had trained under when she was doing her externship with one of the hospitals. She asked if I had a gender preference (at the time I did) and set up my first appt with one of the drs that she told me about after I had talked to my rheumatologist about all of this. At that time my rheumatologist was the only dr that I had on my side that believed my pain. That was when he told me about laparoscopy. I went to the female dr (she was the second gyn I went to) that I was told about for that first appt and the light began to get brighter. She got me in for a laparoscopy and with the help of a Reproductive Endocrinologist they found out that I had endo. Well, that dr moved away to across my Home State of FL and so I spent time with the Reproductive Endocrinologist but I had to leave him b/c of communication issues and now I'm on my 4th dr (also female). In Jan of 1999 the endo started to recur and I had some of the old familiar pains plus one new one: a lot of pain in my uterus. So my dr that I have now got me in for my second laparoscopy and she found more endo but on the back of my uterus and the right uterosacral ligament. I had been on continuous bcp since Sept of 1997 but I was having a lot of breakthrough bleeding so it was making it hard to find a pill that worked for me. In Sept of 1999 I was diagnosed with vulvodynia (another female problem-this was caused by a surgical procedure I had 3 months before my first surgery for endo), and then in Oct of 1999 I went on Ovral and had no more problems with breakthrough bleeding. Everything was fine until Nov of 2000 when I had bent too far one time and another time too long. When the first incident happened I felt like something had ripped in the area between the rectum and the vagina. When it happened the first time the pain was absolutely horrible. I had asked on the Women's Health Forum (a sister forum to this one) about this and the dr that answered me said that if endo were around that area like my suspicion was, after he explained that if I had torn my vagina I would have bled, that my dr would have been able to get that at the same time that I had a laparoscopy after a planned biopsy of the back portion of my vagina. The other thing that I might have had going on (which is a very strong possibility) is the adhesions. The reason is b/c with the first surgery in Aug of 1997 they found a lot of adhesions (whether or not endo was hiding in there we don't know). B/c of the removal of those adhesions in that surgery it took 4 months to get rid of the post op pain, and with the second surgery there was only one adhesion found. So in March of this year I finally had the biopsy of the back portion of my vaginal wall. At that time there was still a misunderstanding about why I needed the pain meds and when I was able to clarify why I needed it (for the vulvodynia not the endo) then she understood and we came to an oral agreement about my pain meds on the number of tablets I could have. When I told her that the endo was acting up and that I really wanted surgery she said not right now b/c of the risks of adhesions and of course the problems that can sometimes occur with anesthesia. So then she mentioned Lupron (this was the 3rd time and I had turned it down twice before b/c as I later found out it had a seizure risk with it) so I told her no to that. So then we talked about Zoladex. I did a ton of research on that and had my doubts about it but not b/c of the seizure aspect b/c there is no seizure potential with Zoladex. So then I had some questions for my dr about what we were going to do about the pain that occurs as you adjust to the medication and her answer was the addback. Which was fine with me b/c I had already told her that if I do this the only way I would do it is with the addback b/c I also have osteoarthritis (I've had it since 15 due to injuries at that time of my life). I knew that if I had done the Zoladex without the addback then it would have potentially made the arthritis worse and I just didn't want to take that chance. When I don't take the alfalfa for my arthritis then I can't walk but the Zoladex without the addback would have possibly made things worse for me so that is the reason for the addback. My dr said ok to the addback and I started the shots on May 16th of this year. Everything was working great so I continued the next 3 shots and the reason for why I did that was b/c of the fact that now I was having a lot of pain in the vaginal area and we didn't know what was going on. I hadn't even thought about endo at this point. So my dr felt the area and also felt my uterus and both were quite tender (I was also having some breakthrough bleeding in part b/c of the Zoladex even though I was on the addback). So then we continued to talk and she said that if I decided to come off the Zoladex after 3 shots I would go straight back to the pill and I asked her how long I would have to be on it before deciding that I would need surgery and she told me that I would have to be on it for one month. She said that if I go ahead and continue with the last 3 shots b/c it has helped the pain so far (but I told her I didn't know if it was helping the pain or if it was the addback that was helping the pain or whether it was both b/c I just didn't know) that we could go ahead and focus on the vaginal pain. Well, at this point I think that the two are intertwining in relation to the endo. So I had a biopsy on Aug 30th and it came back as showing inflammation but we don't know what is causing the inflammation so my thought is that it might be endo. So on Nov 1st we are going to go ahead with cryotherapy to see if that helps take care of the inflammation some. The 5th shot of Zoladex stopped working two weeks after I got it and I let my dr know that I really felt that getting the 6th shot was going to be pointless b/c the endo is acting up again. Well, I had to go thru with it any way. The assistant told me when I was there Mon to see how I did after this shot (I got the shot Mon when I should have had it on the 17th but it wasn't there). I had let the assistant know long before I got this last shot that I wasn't going to be able to wait 6 weeks (this was just a guess b/c the shot is supposed to last 4 weeks) and she told the dr that so that's why she said to wait one week and then tell the dr so when I see my dr on Thurs for the cryotherapy we will talk all about that. I feel like I'm very close to surgery now. Like about 3 weeks at least so we shall see. But I am going to have to have my dr do a bi-manual exam of my ovary on the left side b/c it feels kind of large and I know that this may or may not have to do with endo. So that's about where things stand with me right now and I will let everyone know how it goes on the 1st and where we go from there. Also please feel free to e-mail me privately any time. Take care, ===== Kristy :) http://www.geocities.com/sokokl/kristyspersonalpage.html Hoping to be a nurse soon but for now just a Medical Secretary who does a lot of learning from reading on the Net, books, my dr(s), as well as sharing my own personal experiences. Make a great connection at Yahoo! Personals. http://personals.yahoo.com
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