Endometriosis Support Group

Hi everyone. This is my first time posting to a message board but I am starting to feel like this disease is getting ridiculous, and I don't have a very good gyno. I have endo and a kidney condtion (renal tubular acidosis) that causes recurrent kidney stones...which is mostly what I am focusing on fixing at the moment.

I've had terrible periods since I was 14. 2 weeks of cramps, bloating, back pain, etc. I went on BC when I was 18 in hopes to clear everything up. It worked, but gave me severe migraines, some lasting weeks. I went off that, and in about 3 months found out I had an ovarian cyst. Wasn't put on anything, no one knew why I had them, "no big deal" yada yada. I had several more cysts over the next year and a half, on both sides, always told the same thing, it's not big deal. At the same time, dealing with recurrent kidney stones.

I went on the mini-pill when I started dating my current boyfriend. About 4 months later, Aug 07, I went to the hospital with excruciating pain...was there for 24 hours while they tried to figure everything out. Didn't help that I have horrible pain with exams, etc, so couldn't really get anywhere with ultrasound or pelvic exam. Eventually, they let me leave and referred me to a gyno.

This woman immediately diagnosed me with endo...upped me to 5mg of Northindrone (Agestin). No lapro surgery. I continued to have pain, always on my right ovary...sometimes I would get nauseous after sex. In Jan 08, I went up to 10mg. This stopped my periods completely. Everything was ok for a while, my pain even went away. That summer, I began to feel very different.

In January, I weighed about 145 lbs. I walked about 1-2 miles a day to get to and from work. In May, I moved to a new apartment and my boyfriend started staying with me. He drove me to and from work, and I wasn't walking as much. I figured that was why I was gaining weight. By June, I weighed 155lbs. I decided to go on a diet. After a month, and gaining another 5 lbs, I gave up. I started having night sweats, mood swings, and exhaustion.

By the end of August, I weighed 165lbs. I talked to my doctor about the fact that I wasn't eating any sweats or junk food, and weighed 20lbs more than I did in college, when I ate pizza most nights, and Ben and Jerry's quite often. She referred be back to my gyno. I couldn't get an appointment, and finally decided to search for someone else (still looking...I have a lot of issues with exams and am nervous about finding someone who will be sensitive with that. It took 2 anti-anxiety pills, numbing cream and extra small speculum just to get my first pap done).

As my weight continued to climb, and my menopause symptoms got worse, I called a friend of my mom's who is a midwife. She explained that the weight would be really hard to take off (I was at almost 180 at this point); I might be experiencing bone loss as a result, and told me other options I might try. With her advice, I tried going on 5mg instead of 10. I have been on this since January of this year. I still haven't had my period, but the hot flashes, sweating and mood swings have settled a tad. I have been having more pain on my right ovary, but have been ignoring it since it isn't too bad. My weight gain has slowed, but is at 190 now.

I started going to my apartment building's gym 4 times a week, but have gained 4 lbs. I think I have spent about $1000 in a year on clothes just keeping up with the weight gain. My body doesn't look like my own, doesn't feel like my own, but I feel like I don't have many other options. I can't take anything with estrogen because of the migraines, and I have heard weight gain comes with many other treatments. I am hoping someone has gone through the same thing and has any words of wisdom or advice. I am worried about my fertility, because I want to have children, but right now that isn't an option for us. I am also mad that my ovaries are basically shut down, when I told my gyno I didn't want to do that. I'm just frustrated and trying to get myself psyched about working out, but I am always so tired.

Thanks for listening and hope to hear from someone soon.
Posted on 07/05/09, 08:07 pm