Post # 1
I have endometriosis and polycycstic ovarian syndrome. I was diagnosed with both of them while I was in college and have been doing strong birth control to try and slow the progression of the endometriosis for almost 4 years. Unfortunately, it’s no longer working. I had my 8th ruptured cyst (in 3 years) last week and at my follow-up visit today, my doctor expressed her concern for us having a family. Essentially, I either need to stop all hormonal interventions and risk the cysts returning even stronger and losing my remaining ovary (I lost one last summer when a chocolate cyst tortioned it and the ovary became necrotic) before we’re able to concieve or I switch to a much stronger hormonal control and take Depo-Provera shots or Lupron for a couple of years and risk long term health effects. Either way, it looks like I’m headed for an early hystorectomy because of the progression of the endometriosis.
We hadn’t started TTC yet because we want to be out of our apartment and in a house, but now it’s looking like we need to act earlier vs. later. We are still praying and trying to decide what to do. I’m pretty sure we’re going to start TTC very soon, but we’re not sure whether that means I stop what I’m taking now, or if we’ll wait a little longer. I did tell DH that if I’m going to go off the pill, I don’t want to risk not being able to get pregnant by using condoms for awhile and then actually trying for a baby – the cysts could definitely get worse between then and I don’t want to lose our chance entirely.
I’ve seen references to charting etc, but have no idea what to do. Does anyone have any tips for us in how we can do this well? We’re ready to be parents (well, as ready as we’ll ever be!) and while we’re not where we want to be yet before we had a family, I know that we can make it work the way we have it now. What books did you find helpful? Any specific diet ideas (we are paleo/primal already) or supplements that can help with conception? Any success stories with either endometriosis or PCOS would be awesome too!
Thanks in advance for your help!
Post # 2
I have bad endometriosis (stage 4), but no PCOS, and have gotten pregnant twice. The first time I had a laproscopy after around 7 months of trying, during which I was diagnosed with the endo. My doctor told me that I would have never gotten pregnant without the lap. I had a problem with a short luteal phase as well, so my doctor gave me Clomid, and it helped me get pregnant the first month I took it (TTC 12 months total).
I am currently almost 10 weeks pregnant, and took Clomid for just one month again this time. It seems to work wonders for me, although I have done a little research, and if it is not effective for you, it can really aggrevate endo, so not everyone is a big advocate of using it.
My doctor also had me consider Lupron, but I wanted to get pregnant right away, so I didn’t go that route. Is your doctor thinking about doing a laproscopy to clear your endo? How did you get diagnosed?
Post # 3
LAZB: Diagnosed through a lap in 2012. She offered to do another one if we decide to go that route. DH’s thought was to try for a few months on our own and then over Christmas break do another lap if we’re not pregnant yet.
Post # 4
- Wedding: August 2013 - backyard in the woods
hogoboom2012: First of all, I’m sorry for your struggles. I have stage 4 Endo (no PCOS) and am currently on injection 4 of a 6 month round of Zoladex (which is similar to Lupron but with less nasty side effects) so we’re on pause from TTC currently. I think your DH’s idea is a good one. Some women get pregnant quickly, others don’t. The first 6 months after a lap are the most likely time to get pregnant if you have struggles TTC with Endo. I wouldn’t want to wait more than 6 months to have a lap if you’re not having any luck, but it seems worth the risk to try for a little bit first to avoid another lap. Also, in my personal experience the Zoladex isn’t too bad side effect wise and it’s safe in the short term (6 months), maybe that might be an option to buy tou a little more time before you TTC.
I was first diagnosed with Stage 1/2 Endo about a year before we began TTC. I went on continuous BC until our wedding and then came off it to TTC. I was worried abot having problems because of my Endo and I was also 31 (DH was 38) at the time and didn’t want age to become a factor if we had struggles. We had no luck in 12 cycles of TTC and my pain began coming back worse every month after I came off BC so I decided to have another lap. The doctor found stage 4 Endo- I went from stage 1 to 4 in 2 years, 1 of them on continuous BC, so I feel your worries about the Endo becoming worse. I even had it on my bladder, on both kidneys, and both ureters were covered. I’m on the Zoladex becuase they couldn’t get all of my Endo during my first surgery and I need another, so the Zoladex reduces/stops the progression of my remaining Endo until I can have surgery again.
I also think Charting would help you a lot, especially because of the PCOS. The book ‘Taking Charge of Your Fertility’ by Toni Weshler is amazing. It helps you learn to read your body’s cues for your reproductive cycle, and it’s an intro to Charting as well. To chart you simply buy a basal thermometer (it’s a decimal place more sensitive than a normal thermometer and you can get one at most drug stores) and take your temp at the same time every day, immediatley upon waking- before doing anything else. The Charter’s thread is also a great help if you have any questions. Lots of nice helpful ladies there. I’d reccommend joining if you decide to try charting.
As for reasons to chart, charting allows you to figure out exactly when you ovulate each month. If you end up being regular on your cycles it can save you a bunch of headaches wondering when you will O. If you aren’t regular, it will help you know this quickly so that you can find some meds or whatnot to help you O.
I also suggest trying ovulation predictor kits (OPK’s). Occasionally they do not work on women with PCOS, but it’s worth a shot. These help you know when you are about to O, before you O, so that you can time things properly. You can get them super cheap on Amazon. If you have any qestion you think I can help with, feel free to PM me. Sorry you have to start before you had planned and with so much stress, but good luck! Geesh, that ended up being a long post, sorry:)
Post # 5
Aqualov: THANK YOU so much for your reply. It helped a lot. I just posted another thread asking for some more help with charting. I think it’s something that might help us. I’m so sorry that you have to go through all of that 🙁 I hope the surgery coming up will be able to get everything!!!
We made the decision last night to start TTC when I finish this last pill pack late August. I’m scared to death and excited at the same time. Our plan right now is to try ourselves until Nov/Dec and then look at another lap (insurance would cover it this year, potentially not next year). My doctor was on board with it when we asked last week. Hopefully, we won’t need it!
Post # 6
- Wedding: August 2013 - backyard in the woods
hogoboom2012: No worries, glad to help and thanks for the well wishes.
Post # 7
I would seek intervention right away. I wouldn’t even bother trying on my own with your issues. I would want everything to be medically supervised to reduce the risk of injury to yourself.
I would also consider if freezing eggs was a viable option, just incase a hyseterectomy is in your future (presuming that would mean ovaries too).
Post # 8
hogoboom2012: Can your doctor put you on clomid right away? That is what they are doing for a friend of mine in a very similar situation (she was told it is about 2 years of hystorectomy time, so she better get on it if she wanted 2-3 kids).