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any advice, starting to ttc with endometriosis?
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Anonymous
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I am 26 with stage four endometriosis. I have managed the endometriosis by staying on permanent birth control (no periods) and it has helped my quality of life a lot. I have been given different percentages of chances of conceiving naturally by different doctors, and I feel like I owe it to myself to at least try to do this before moving on to IVF. The only problem is that (obviously) I have to get off BCP to try to conceive and I'm going to be in a ton of pain. I stopped a few days ago and already this morning my stomach was bloated and painful. Anyway, I was wondering if anyone has been in my situation and what you did to make this better? I am so hoping that some kind of miracle happens and that I am able to conceive; I am probably just setting myself up for disappointment.
I have heard of something called the "endometriosis" diet which basically gets rid of alcohol (I'm doing that anyway), dairy, grains, sweets, red meat and more. I wonder if this would help my situation at all or if it would just make me more miserable by not being able to eat anything! |
Anonymous
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Stage IV endo sufferer here -This may be hard to hear, but I would go straight to IVF. If you have stage IV, you likely have some damage done to your ovaries, so your ovulation might be impaired. Another difficulty many women have at this stage is that even though their tubes appear clear, the endo has done some damage to the tubes, and the egg is no longer able to make it through at ovulation. Once off the pill, many women I know have seen their endo go into overdrive in a very short period of time. Most literature I have read over the years says that IVF is indicated in Stage IV.
I would schedule a consult with an RE who has dealt with severe endo sufferers routinely. Most OB/GYNs are out of their league with this disease. The good news is that pregnancy is often wonderful relief for sufferers, and even though many of us have diminished ovarian reserve, our eggs may still be good. |
Anonymous
| Thanks for the reply. Question for you, do you have any recommendations for an RE in this area? I live in Arlington but would travel. Also, if I have to go to IVF, do you think it matters when I do it? I just turned 26 two weeks ago so I am still on the younger side. I am nervous about the cost of IVF and would feel more comfortable financially if we waited a year or two, but at the same time I don't want to do anything that would decrease my chances further. |
Anonymous
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Have you had an HSG to see if your tubes are open? There isn't much use trying naturally if they aren't.
I have stage III and I'm lucky in the sense that I have pretty much no pain at all. I'm unlucky in the sense that I'm completely infertile after 3+ years of trying almost every trick in the book. There is some literature out there that suggests women with milder endo may be even less fertile than their stage IV counterparts. I also have immune issues and my uterus lacks Beta-3 integrin. Both of these problems are highly correlated with endo. If you decide to go the IVF route, get tested for these issues before proceeding. If untreated, both will cause IVF to fail. If your HSG is clear, I'd give it 6 months and see what happens (if you can bear the pain). Otherwise, I'd go straight to IVF while your eggs are still young. Be aware that endo can cause premature ovarian failure, so you have less time than most women. I wish I could give you a doctor recommendation but, honestly, I'm not sure this area has a decent endo specialist. If so, I haven't found him/her. Do some online research--I believe there's one in Atlanta who is highly regarded. |
Anonymous
| I recommend Dr. Levy at SG. I have Stage IV endo as well as a few other issues and I had 2 sucessful IVFs under his care. |
Anonymous
| I saw Dr. Gordon and he was far better than any other ob/gyn I have seen previously. |
Anonymous
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FYI, here's a link with some specialist recommendations. In particular, I've hear great things about Dr. Perloe in GA and Dr. Nezhat in CA.
http://www.endo-resolved.com/specialist.html |
Anonymous
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You might want to consider acupuncture. It is often really helpful in diminishing period-associated pain and, along with herbs, can also help prevent the inappropriate accumulations of tissue that characterize endometriosis. You can start with the acupuncture as soon as you like to get some relief and it will put your body in better shape to respond to any medical fertility treatments you may choose to pursue.
The diet you're describing is basically an anti-inflammatory diet and would most likely be helpful with your symptoms. Why not try it for a month - worst case scenario is that you don't notice much change and go back to your regular eating patterns. Best case, you start to feel better. Not much to lose by experimenting. |
Anonymous
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I only had stage III, but I'd strongly recommend seeing an RE and/or an endo specialist before going off BCP. You'll want to time things correctly...otherwise you might end up with additional surgeries and/or medications (Lupron Depot) if the endo comes back vigorously.
I also tried the anti-inflammatory diet and did get pg that IVF cycle (previous IVF cycles didn't work). It's a healthy diet in general so no harm there. |
Anonymous
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I really like Dr. Gordon and Dr. Dimattina at Dominion Fertility in Arlington.
If you go for a consult they will suggest you get an HSG. Do not Google it. Just get it done to see if your tubes are clear. No sense in trying naturally if your tubes are blocked. If that's clear, I would try on your own for as long as you can. You are very young and have lots of time, hopefully. Good luck to you! |
Anonymous
As a young stage IV sufferer, I would never assume you have a lot of time. I speak from experience. Many stage IV sufferers have diminished ovarian reserves, amongst other problems. And most REs will recommend going straight to IVF -IUI has limited success for this group. Also, even if the hsg is clear, there can still be damage the endo has done. Don't second guess this -go to a reputable RE, and have them guide your steps. |
Anonymous
I'm sorry - this is horrible advice to give someone with endometriosis! The longer it has time to damage her ovaries, tubes, etc. the more & more difficult it will become to get pg!! It also can affect implantation (search on 'beta 3 integrin'). Some women with endo. are never able to get pg, even with medical help. So definitely get the consults, get the HSG, but don't wait too long to get aggressive because unfortunately time is NOT on your side. |
Anonymous
AGREED -I thought the same thing. OP, be proactive, and get some answers from experts. Some of us have been there, done that, but for your own peace of mind -get a consult and go from there. Good luck! |