ENDO Messages for March, 2009: Re: Stage IV Endo, Conception and Cyst questions, my first post!

Re: Stage IV Endo, Conception and Cyst questions, my first post!

From: Ally (anonymous@obgyn.net)
Tue Mar 31 17:28:02 2009

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Hi Marissa!

I have stage IV endo too and have been TTC since 08/06. I didn't even know I had endo until a year into our TTC journey. I had endometriomas everywhere on u/s! I had surgery with an OB/GYN oncologist and was told I should be "good enough to get pregnant". Just 7 weeks later I ended up seeing a specialist and was told that I really needed to have surgery again (excision). That surgery ended up being 7 hours and included a bowel resection. I can tell you that none of my bowel symptoms were improved after my first surgery, but the results from the bowel resection were amazing!

Unfortunately, the excision surgery was over a year ago and I am still not pregnant. We tried a couple rounds of Clomid and the only result was more ovarian cysts. I was then put on LoOvral for continuous birth control to try keep more cysts from forming. After 4 months, 50% of the cysts had disappeared! However, after 5 months on the CBCP, I began spotting and did so for 2 weeks. Just last week I took 5 days off the pill to have a period and hopefully that fixes things. The plan is to go off the birth control in a few weeks, TTC, and repeat u/s in 2 months to check for cysts. We are also waiting to adopt!

Best of luck to you. You are not alone...

At Tue, 31 Mar 2009, Marissa wrote: >
>This might get a little long, so I apologize first! I am 26 and was
>diagnosed with endo at 19. I have since had 4 laparoscopies, multiple
>trips to the ER due to ovarian cysts and no luck in 3 years trying to
>have a baby. I am Stage IV. My last surgery was in Sept 2008. The
>results were that I had a 4cm cyst on my left ovary, extensive pelvic
>adhesions, and multiple endo "sacs". My Dr. (who has been my Gyn since
>day 1) was able to remove everything except for some adhesions that went
>from my uterus to my rectum and bowel. He said that "it would have been
>like trying to remove wallpaper from a wall without damaging the
>drywall". I have painful bowel movements and horrible periods with a
>lot of clots. My first question would be, do i need to worry about
>theses adhesions being connected from the bowel to the uterus, and will
>they affect pregnancy if and when that happens?
>Second, I was placed on Lo-Estron (sp?) in Dec. after a Lumbar MRI
>showed 2 cysts back to back on my right ovary. Both cysts measured
>1.8cm, not too bad, and they were simple cysts. I went for a follow-up
>ultrasound in Feb. which revealed, as I had suspected and felt 2 weeks
>prior, that one cyst had ruptured and dispersed. The other had grown to
>2.6 cm. I was then placed on Femcon FE. I started my period 2 weeks
>ago today (Tues. ) and started the new pills at the same time. I am
>STILL bleeding/spotting now 15 days later. I have been on 12 other
>treatments, all from Ortho tri-cyclene, Lupron, Depot Provera, Danazol,
>Seasonale, and many others. My husband and I have been TTC for 3 yrs,
>and I feel like, again, I am at a standstill. I have migraines at least
>2-3 times every few months that I am being treated for. I also have
>chronic low back pain that I saw a chiro for 12 vists with no real
>improvement. I am a perfect weight for my height, so I can only
>attribute it to the endo. What else can I do from here?

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