ENDO Messages for January, 2004: Re: hello ladies...newbie here... have some questions

Re: hello ladies...newbie here... have some questions

From: Allie (anonymous@obgyn.net)
Sat Jan 17 07:31:16 2004

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Previous message: Jennifer: "Re: are the majority of the women here in their twenties and thirties?"
In reply to: Liz: "hello ladies...newbie here... have some questions"
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Hi, Liz. I'm pretty new to the forum myself, but hopefully I can share some of my own experience. I’m 20 with stage III endo, and have been through more meds than most people have to. I started my first birth control after I passed out in a university bathroom from losing so much blood. I had just turned 18. In those two and a half years I have tried the following meds:

Ortho Tricyclin—caused extreme nausea; I threw up every morning for three months, and my symptoms never disappeared.

Ortho Cyclin—same as Ortho Tricyclin

Yasmin—supposed to be gentler on my stomach, but I had constant breakthrough bleeding and little help with my cramping.

NuvaRing—worked really well for a couple months, and I was able to prevent periods by never having “down time” during which I wasn’t wearing a ring. Then I bled for over 90 days. My doctor said this was probably because my uterine lining had gotten so thin that I had exposed capillaries. I took out the last ring I wore the day I hap my first lap. Two weeks later I was back in the hospital with the worst cramping pains I had ever had. They took my appendix (my gyno didn’t take it because she couldn’t see it; it turns out it was retrocecal: on the wrong since of my intestines). I still have “ghost appendix” pains that are directly under the lowest scar from that surgery; turns out my appendix wasn’t the issue; my gyno thinks it’s actually my right fallopian tube’s scar tissue.

Micronor—in hopes of discouraging endometrial growth, I was put on Micronor. It’s a progestin only pill (sometimes called a “mini-pill”). Since endometriosis thrives with high estrogen levels, she hoped that in not giving me any extra estrogen, I wouldn’t have as much pain. I spotted for the first several moths, then my periods stopped and it seemed I found a solution. That ended up being a short term solution, since spotting turned to bleeding, and I started to have periods that lasted five or six days with heavy cramping, with only two or three days between them.

Synarel—I just started this yesterday, so I’m still bleeding from another period. The reason my gyno thought Synarel would be better for me than Lupron are some great ones, and you may want to consider them yourself. First of all, Lupron is a monthly shot. My gyno is in one part of the state, and I go school in another. While I come home once a month, it would be hard to make sure I saw her every time. Her best reason is that if I have any severe side effects (besides the “usual” of hot flashes), I can stop using the Synarel, and it will be out of my system in a couple days, whereas with the shot I would have to deal with the effects for a full month. One of the worst side effects can be migraines, which run in my family. Although I do not get them, she didn’t want me to start since my sister has an intense history with them. After three doses, I’ve only had one hot flash, and nothing else except a little fatigue.

I found this site while I was looking for info on Synarel, and I’m glad I did. It’s about time I found people who don’t think it’s ridiculous to miss work and class just because of some little cramps every woman has—finally people who know the pain is real and NOT typical.

Not sure if this helps, but feel free to email me or post if you have any questions for me.

At Fri, 16 Jan 2004, Liz wrote: >
>Hello Ladies!
>I'm Liz, I'm 19 and was diagnosed with Endo in Oct 03. I have stage 3
>deep infiltrating (found out thru a lap.) I haven't been able to find
>very much info on the subject. I was wondering if anyone knows of any
>good websites.
>I have been on yasmin since oct. Up until this cycle, it was working
>great. All of a sudden it seems as if Im back to where I started from.
>The severe cramps (both before during and after my period) are back. The
>severe lower back pain has also returned. It radiates from my back all
>the way down to my acheilles(sp?) tendon in my heels. Does anyone have
>a remedy for this? nsaids just dont cut it.
>I have a wonderful doctor, (Dr. Hanjani in brockton mass) He is very
>concerned with my well being, He has me in once every three months just
>to talk and see how I'm feeling. Even though I am confident in him, my
>mother and grandmother are very worried and would like for me to get a
>second opinion. They were both diagnosed with endo and had complete
>hysterectomies (mom at 35 and grandma at 32) Both had severe difficulty
>getting pregnant. Is this something I too should worry about?
>Dr. said he would like me to try a course of Lupron. But, I've done
>some research and it seems to have terrible side effects, has anyone had
>a positive experience with it?
>Sorry this has been so long, but I needed to vent to women who
>understand and "feel my pain" so to speak.
> So... does anyone know of a great dr in the brockton area?
>
>thanks,
>Liz

Next message: anonymous: "mirena"
Previous message: Jennifer: "Re: are the majority of the women here in their twenties and thirties?"
In reply to: Liz: "hello ladies...newbie here... have some questions"
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