laparotomy-visanne-ivf(failed)stage 4 endo-naturally-???

Support for anyone who has been diagnosed with endometriosis, or thinks they may have endo.

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laparotomy-visanne-ivf(failed)stage 4 endo-naturally-???

Postby hope2heal » Tue Aug 11, 2015 1:03 pm

Its been 8 years of ups and downs western and eastern medicines visanne and ivf. I'm now 31 with severe endo- I'm tired of having no answers...I'm tired of having to live with a sense of failure every month though its not my fauIt sometimes i feel like I'm wasting time. I don't feel like dr's truly know how to help.
And in the end it feels like there is no support. No one to say do this because it guarantee s that. And all the money...so much money-when we fall pregnant we will say its worth it...but until then as our cycles turn to menses it seems all in vain...and though there are so many of us suffering we are alone at the end in the quiet moments if despair.

Since the failed ivf and years of suppressing endo with hormones iv decided to take a "risk" and abandon that way and turn natural-diet/trad Chinese meds/acupuncture/homeopathy... The endometriomas are big, I can feel them when I touch my belly and it scares me. during menstruation I just want it cut out - but i have read laps can cause an aggressive regrowth and deplete ovarian reserve? I feel like at the end though endo is suppressed with western meds it does not deal with the real problem .

Anyway I'm blabbing on

I need support I so desperately want a baby...I'm so sad and tired and feel like giving up...
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Re: laparotomy-visanne-ivf(failed)stage 4 endo-naturally-???

Postby Tina03 » Tue Aug 11, 2015 3:19 pm

I totally understand you. I have "just" stage 2 endo but its been rough too. I had surgery done as i had as well big endometrioma on both ovaries. I just had too much pain and in general my whole health suffered. We tried to get pregnant almost 3 years without success after this. Endometriose is barely explored, no one can find the cause and if the cause if unknown all treatments are only temporarily. I figured i need to do something the natural way and support my body as good as i can, also informed myself as much as possible about endo. So i looked up an endo diet, took vitex that works well with endometriose patients and short luteal phases and took some vitamins and iodine to support my thyroid for more hormones balance. I felt better and even the pressure from my (new) cysts went away and i had less pain during periods. I was told i cant get pregnant without help (low egg reserve, cysts, ovaries out of position), but it happened...i got pregnant naturally in June sfter starting my diet/ treatment in March but lost our twins in the 7th week. It's sad but the only positive i can take from this is that i got pregnant although i was told i cant without ivf or another surgery. On top of that it seems like my ovarian cysts are gone. I believe that a healthy lifestyle and the right herbs or natural treatments can do something, even if it's just lowering the pain. I keep doing what i started as otherwise there's not an alternative that's not temporarily anyway for now.

Some facts i learned to know about endo: endo patients seem estrogen dominant, so you have to balance your hormones and avoid anything that adds estrogen in diet (for ex. no soy products) and cosmetics, endo is apparently linked to celiac disease (gluten intolerant people), so avoid gluten, endo patients seem to have often auto immune problems, the immune system is not reacting correctly, either too much or too low, so try to balance your immune system.
2012 diagnosed with endometriosis, surgery/lap, diagnosed with subseptate uterus 2017...TTC since almost 3 years before first BFP in 2015
2015 August 4 - MC identical twins at 7 w, BFP @ 13dpo - squinter BFP @ 12 dpo, Betas: 152, 310, 1982
2016 Oct 10 - MC at 5-6 weeks, BFP @ 9dpo, Beta @ 4w 199

2016 Dec 30 - BFP @ 9dpo > EDD Sept 13, 2017 It's a BOY (av. BPM 130)

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Re: laparotomy-visanne-ivf(failed)stage 4 endo-naturally-???

Postby hope2heal » Wed Aug 12, 2015 10:42 am

Thank you so much for sharing your story it gives me great comfort to know I'm not alone though the reality is harsh I will keep you in my meditation tina03 you've reminded me to not give up. What did you mean by short luteal phase? I have been plotting etc but perhaps u can clarify any thing im open to info...

I'm on homeopathic and mainly on the candida diet but not as extreme as I have been before- I just started my period 4th month post ivf the endometrioma is not as prominent as yesterday and my pain is not as intense as last month and my flow is good not sluggish thank god!

Thank you again for your response.
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Re: laparotomy-visanne-ivf(failed)stage 4 endo-naturally-???

Postby Tina03 » Wed Aug 12, 2015 4:21 pm

I'm happy my story gives you hope and you starting to feel better with your treatment too, that's great. I was near giving up too, I thought I might not have kids ever. But I did get pregnant when I was not expecting it anymore. I just wanted to do the natural treatment also to just feel better and relieve me of the endo. Well it did both. Of course I'm scarred it could take again very long to get pregnant or that there is a second miscarriage but we gotta stay positive, it's not over till it's really over. Try not to give up yet but try to give yourself a bit peace of mind. That's what I did, I took the things as they are, I will do what I can for my body and if that doesn't work then I at least tried as best as I could and have to deal with the fact I might not have kids as hard as it is. I know that's not easy but you have to try to relax just a little.

To explain luteal phase....it's the second half of your cycle, from ovulation to period. A luteal phase of 12-14 days is perfect and give an egg enough time to implant. If you got less than 10 days it's very hard for the egg to implant. I had a 10 day luteal phase so right on the edge for still being ok, but taking vitex lengthened it to 12 days and that's when I got pregnant. It makes it easier if it's longer than 10 days. If you are charting your cycle with temperature you will know when you ovulated and you count the days from the first day past ovulation to the day your period starts and you know how long your luteal phase is. Charting helps to see if you ovulate, when and if there's enough time for implantation and you be able to work on the problems if there's any.
2012 diagnosed with endometriosis, surgery/lap, diagnosed with subseptate uterus 2017...TTC since almost 3 years before first BFP in 2015
2015 August 4 - MC identical twins at 7 w, BFP @ 13dpo - squinter BFP @ 12 dpo, Betas: 152, 310, 1982
2016 Oct 10 - MC at 5-6 weeks, BFP @ 9dpo, Beta @ 4w 199

2016 Dec 30 - BFP @ 9dpo > EDD Sept 13, 2017 It's a BOY (av. BPM 130)

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Re: laparotomy-visanne-ivf(failed)stage 4 endo-naturally-???

Postby hope2heal » Thu Aug 13, 2015 7:17 am

I see now about the luteal phase....I haven't started taking temp...so kind of estimating...when my fertility specialist said I could try naturally for six months a few years ago he never gave me any advice...he also saif nownthis last session after ivf in march that the chances of the egg leaving the ovary and meeting the sperm in fallopian.tube is highly unlikely...so was altogether deflated by him and his expert opinion....anyway that makes sense I'm on day three of my period so will start after...would an ovulation kit also be OK?I don't have a thermometer....guess I can just buy one...again...thank you for your kind words and understanding you are really helping me.....how big are your growths over your ovaries...you said ur stage 2?

Love and baby dust tina03 ;)
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Re: laparotomy-visanne-ivf(failed)stage 4 endo-naturally-???

Postby Tina03 » Thu Aug 13, 2015 4:24 pm

Your welcome!
I recommend to use a thermometer, opk's alone aren't too good of an indication and only give you the possible ovulation time (you might never see a peak though) but temperature gives you an overview of your whole cycle and is more accurate is pinpointing down your ovulation. It will take a while to get used to it and the Temps might be wonky at first, just keep going. Important is you always measure about the same time each day before you get up! Till ovulation your temperature should be kinda low and normal, it can go up and down a lot too as you are going through stress, not enough sleep, being sick etc. (Rocky mountain look) Once your temp rises more than 0.4, like you see a big temp difference ovulation has happened the day before and your temp should stay up till your period arrives than it drops again. But if you have anymore questions to this once you try it, let me know.

I also can tell you that my doctor told me I'm unlikely to get pregnant without IVF or surgery but I proved him wrong. I did get pregnant without it. Yes it might be harder and took some changes to a natural way and diet but it happened. Nobody can guarantee me that the first IVF would be successful. So many have to go through a lot more ivf's before it works. At least in my case it's about 50/50 on either natural or ivf. But what I'm trying to tell you is that a doctor isn't always 100% right. So many women have been told they are infertile and ended up pregnant.

Yes, I have stage 2 endo, I had endo parts on both ovaries, in the pouch of douglas, and adhesions on my bowl and on the side wall of my belly. They removed it all, my pain and bowl problems during my period went away after. But I had cysts again after a while but their pain wasn't as bad as the first ones i had as they were smaller. My cysts were at average I think about 5-6 cm big and they removed a 25 mm big piece on one ovary and a 17 mm big piece on the other. But what's surprising is that on my last ultrasound about 2 weeks ago there was nothin wrong with my ovaries, so no cysts.....I will ask on the next ultrasound on Monday about it. Since I started with the changes in lifestyle/diet etc. I noticed a big relieve from the pressure of the cysts so I'm really wondering if it helped....

Love and baby dust to you too :D !!!!
2012 diagnosed with endometriosis, surgery/lap, diagnosed with subseptate uterus 2017...TTC since almost 3 years before first BFP in 2015
2015 August 4 - MC identical twins at 7 w, BFP @ 13dpo - squinter BFP @ 12 dpo, Betas: 152, 310, 1982
2016 Oct 10 - MC at 5-6 weeks, BFP @ 9dpo, Beta @ 4w 199

2016 Dec 30 - BFP @ 9dpo > EDD Sept 13, 2017 It's a BOY (av. BPM 130)

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Re: laparotomy-visanne-ivf(failed)stage 4 endo-naturally-???

Postby hope2heal » Sun Aug 23, 2015 7:55 am

Hi Tina 03

Howd it go at doc? I have just joined "myendometriosisteam"its quite a nice format and very user friendly. Thought of u...im currently in ovulation time and its proving stressful...anyway...didn't do the thermometer or opk this month...thinking I may give it a few more months an then if nothing g happens naturally opt for lap...I don't know....anyway hope all is well
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Re: laparotomy-visanne-ivf(failed)stage 4 endo-naturally-???

Postby Tina03 » Thu Aug 27, 2015 6:27 pm

My last ultrasound showed that I have no cyst on my left ovary anymore which are good news but on the right there seems to be a cyst but don't know what kind. As I went through a miscarriage it might be still the left over cyst from pegnancy (which would be the best case)? I also still have left over tissue in my uterus, i hope it will come out soon or with my period. But even if it's still endo on the right side, the left cysts disappeared already, which is surprising. I have to do another ultrasound soon again.
I bet being in your ovulation time is stressful for you, I can't even start TTC yet before things get back to normal. Im also about to switch jobs now, something I always wanted... so I really don't know how fast I can TTC again.
I had the same approach as you, just kept trying and if it doesn't work, do the surgery. But I also changed lifestyle and diet. And before I knew it I was pregnant. It's strange sometimes how things go and often they come totally unexpected.
2012 diagnosed with endometriosis, surgery/lap, diagnosed with subseptate uterus 2017...TTC since almost 3 years before first BFP in 2015
2015 August 4 - MC identical twins at 7 w, BFP @ 13dpo - squinter BFP @ 12 dpo, Betas: 152, 310, 1982
2016 Oct 10 - MC at 5-6 weeks, BFP @ 9dpo, Beta @ 4w 199

2016 Dec 30 - BFP @ 9dpo > EDD Sept 13, 2017 It's a BOY (av. BPM 130)

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Tina03
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Re: laparotomy-visanne-ivf(failed)stage 4 endo-naturally-???

Postby hope2heal » Sat Aug 29, 2015 2:21 pm

supermoon tonight, hey who knows theres some interesting wives tales about supermoons and increased fertility and miraculous conceptions...wouldnt hurt to the baby dance just for fun...

baby dust to all those reading...
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