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  1. #51
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    Quote Originally Posted by BabyG4 View Post
    I didn't know I had endo until after my first pregnancy. Things were fine for me, AF came on time, short length and no pain. I had a medically necessary termination with my first pregnancy but afterwards I started having severe pains, legs collapse from under me and ovulation time would be excruciating. I had a lap/hyst about a year later and was found to have severe endo. They couldn't remove all the endo due to where it was but I was able to go onto a 6 month course of zoladex implants. My gyno, at the time, recommended to fall pregnant within the next year if I wanted to ever have babies. 5 years later when I was ready, I was able to fall pregnant naturally.
    I'm starting to think short length AF is not good! I wish I looked into endo earlier. Anyway, it's great to hear you were able to fall pregnant naturally I haven't heard of zoladex. Hopefully you don't have any endo related symptoms post birth.

  2. #52
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    I never actually thought about the short AF @nightowlsuprise I just always thought I was lucky even with endo. I'm not sure if they still use zoladex, it used to be used to treat prostate cancer patients, but definitely worth a look into if you can't get any relief elsewhere. Does put TTC on hold for a good 6 months though.

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    Default TTC - Could you have severe endometriosis and not realise??

    Quote Originally Posted by nightowlsurprise View Post
    I'm starting to think short length AF is not good! I wish I looked into endo earlier. Anyway, it's great to hear you were able to fall pregnant naturally I haven't heard of zoladex. Hopefully you don't have any endo related symptoms post birth.
    Hi ladies, I'm reading all ur stories and it's really making me wonder about endometriosis..

    I'm got a few of the other auto immune issues that are often linked like high anti thyroid antibodies, raynauds, PCOS (I'm 42 & have an AMH of 24.7) .. I also used to swear I had IBS in my 20's although I never went to a GP about it.. I still have issues with bloating & pain frequently which def feels like it's bowel related..

    Dr Jeffrey Braverman who is an FS/OBGYN/ reproductive immunologist in New York has suggested previously (based on the info I've given him) that I may have 'CRAMS' which he says is what he calls 'silent endometriosis'. I've read about it on his website and it does kind of make sense.

    When I was younger Id have AF for 5 days & the first day or 2 could be terribly painful- I remember sometimes feeling like a could barely walk bcos I had pain down my legs. However now at 42 my AF is barely 2 days long, and I'm having problems with getting a lining thick enough to do IVF embryo transfers.

    The thing is, I had a Lap/ hysteroscopy, D&C & dye studies in 2015 at a big public women's hospital here in Melbourne & they said everything was fine.. They were looking at my Fallopian tubes mostly to check if I had any issues.. But I was told everything looked good.
    And the pathology came back ok...

    Do you think it's possible that there could be endo there but it was missed? Not seen? Or should I be looking into getting one of these DIE scans that one of the girls in here has mentioned?
    Last edited by Charlie74; 02-04-2017 at 18:32.

  4. #54
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    Quote Originally Posted by Charlie74 View Post
    Hi ladies, I'm reading all ur stories and it's really making me wonder about endometriosis..

    I'm got a few of the other auto immune issues that are often linked like high anti thyroid antibodies, raynauds, PCOS (I'm 42 & have an AMH of 24.7) .. I also used to swear I had IBS in my 20's although I never went to a GP about it.. I still have issues with bloating & pain frequently which def feels like it's bowel related..

    Dr Jeffrey Braverman who is an FS/OBGYN/ reproductive immunologist in New York has suggested previously (based on the info I've given him) that I may have 'CRAMS' which he says is what he calls 'silent endometriosis'. I've read about it on his website and it does kind of make sense.

    When I was younger Id have AF for 5 days & the first day or 2 could be terribly painful- I remember sometimes feeling like a could barely walk bcos I had pain down my legs. However now at 42 my AF is barely 2 days long, and I'm having problems with getting a lining thick enough to do IVF embryo transfers.

    The thing is, I had a Lap/ hysteroscopy, D&C & dye studies in 2015 at a big public women's hospital here in Melbourne & they said everything was fine.. They were looking at my Fallopian tubes mostly to check if I had any issues.. But I was told everything looked good.
    And the pathology came back ok...

    Do you think it's possible that there could be endo there but it was missed? Not seen? Or should I be looking into getting one of these DIE scans that one of the girls in here has mentioned?
    Hi @Charlie74, sorry to hear you're having a hard time trying to conceive. Your AMH looks really good. In my case, I had a good number of antral follicles, but my AMH was a bit low so my FS suggested it was endo bringing down my AMH, which I laughed off because I never had any endo symptoms. He asked if I ever had endo symptoms and I do recall having painful bowel movements during AF in my teens. He also asked if I had pimples during AF and I do notice some pimples during that time. I was on the pill for ages during my young adult life and that's why I didn't really have any symptoms and when I came off the pill, I never had any symptoms. My AF is usually 3 days long every 24 days and it's light. Anyway, he believed I had endo. I was going to do DIE or a sonovaginography but I read they were highly inaccurate and there was nothing better than a lap to find endo.

    Having said that, I personally don't feel like you have endo based on the history you have provided, especially since you had a lap on 2015. But, it is possible it has grown since then if you've had failed IVF treatments because estrogen can really aggravate it and make it grow..

    Could you ask the doctor who did your lap in 2015 and see whether they even looked for endo? My FS told me the most experienced person to do a lap was an fs, not a gyno.. He may only have gone in to see if you had Fallopian tube issues and not looked for endo, that's possible.. In my case, I was creating poor quality embryos.. If that's not the case for you, then I don't think you have endo.. My 2 cents..

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  6. #55
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    Hi everyone!

    Warning - long post as I need to vent

    I am new to this forum but have been reading the posts here and it's great to know there are other people with similar journeys! Kinda makes me feel slightly better.

    I was diagnosed with stage 4 endo about 3 months ago and was really shocked as I do not suffer from any severe pain. In hindsight, I think I always put down my bowel symptoms to having had off food or stress. I get sudden stabbing pains in the pelvic region at times but it never continues so I would also not think much of it.

    The only reason I found out was on a pre-ivf pelvic ultrasound. We haven't been actually been trying for long but me being me and at my current age of 37 I wanted to line all my ducks in a row and get the process started with ivf just in case we needed to go down that path. Some may call me OTT but I've always wanted a family and I didn't want anything to get in my way of ttc.

    I'm having a lap, hysterescopy with d&c and due study to check my Fallopian tubes this coming Friday and my FS will be trying to clear as much of the disease as possible. I have been told it's a mess inside - my ovaries and bowels are stuck to my uterus with all the adhesions and even if I did want to go straight for ivf they wouldn't even have been able to reach my ovaries for egg retrieval because my ovaries are higher than where it should be and immobile! I always thought a lap was the gold standard in being a diagnostic tool for endo but the extent of the disease was found on an ultrasound alone. It does make me doubt the diagnosis to a certain extent.

    In the meantime, my partner of 5.5 years has now backtracked about the whole ttc and wants me to take the pressure off coz that's how he is feeling with the ivf and claims it's all so unnatural. This just frustrates me especially when he was the one that started trying naturally first without really giving me any heads up! So I have the procedure on Friday looming over my head which I'm focusing on first and foremost and then in the new year will have to address and rethink our relationship. If after such a long time he still isn't willing to commit I will cut him loose and just focus on my goals of either freezing my eggs or embryo with donor sperm or just get pregnant when I've recovered and raise a child on my own!

    Thanks for 'listening'. Would be great to know anyone who's in a similar situation ..

    Janet

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    Hi Janet,

    All very familiar!

    The MOST IMPORTANT thing is to make sure your lap is done by an endometriosis excision specialist, NOT a general gyno/FS. If this means cancelling and getting another referral, do it.

    If the surgery is done by a general gyno then it's most likely they will use ablation to burn off surface endo rather than excision which is where they cut it out completely (gold standard). They are not skilled enough to detect and remove all forms of endo and ablation will leave additional scarring / damage that will be hard for an excision surgeon to repair down the track. In other words, have one surgery and get it done properly! Excision specialists are gynos who have done years of additional training in the treatment of endo via excision surgery.

    When done properly by a skilled endometriosis excision specialist, a laparoscopy can significantly improve fertility, especially for people with severe endo. I personally got pregnant naturally 7 months post excision surgery (have 3 m/o now!). Endo causes damage to the internal pelvic environment and the inflammation it creates makes it hard for eggs, sperm and embryos to survive, which is why it's so important to remove it completely and not leave any behind. Some interesting stats on this can be seen on Dr Simon Gordon's (an excision specialist in Melbourne) website:
    http://endohealth.com.au/endometriosis/fertility/
    Last edited by GreenFlower; 14-12-2017 at 00:54.

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  9. #57
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    Quote Originally Posted by GreenFlower View Post
    Hi Janet,

    All very familiar!

    The MOST IMPORTANT thing is to make sure your lap is done by an endometriosis excision specialist, NOT a general gyno/FS. If this means cancelling and getting another referral, do it.

    If the surgery is done by a general gyno then it's most likely they will use ablation to burn off surface endo rather than excision which is where they cut it out completely (gold standard). They are not skilled enough to detect and remove all forms of endo and ablation will leave additional scarring / damage that will be hard for an excision surgeon to repair down the track. In other words, have one surgery and get it done properly! Excision specialists are gynos who have done years of additional training in the treatment of endo via excision surgery.

    When done properly by a skilled endometriosis excision specialist, a laparoscopy can significantly improve fertility, especially for people with severe endo. I personally got pregnant naturally 7 months post excision surgery (have 3 m/o now!). Endo causes damage to the internal pelvic environment and the inflammation it creates makes it hard for eggs, sperm and embryos to survive, which is why it's so important to remove it completely and not leave any behind. Some interesting stats on this can be seen on Dr Simon Gordon's (an excision specialist in Melbourne) website:
    http://endohealth.com.au/endometriosis/fertility/
    Hi Greenflower,

    Thank you for taking the time to respond and for your advice. If only I found this forum earlier!

    I've read up on Dr Simon Gordon and I'm now conflicted because my lap is tomorrow and I feel bad cancelling at such last minute. I think I will go through with it and then also seek Dr Gordon's opinion prior to commencing any ivf treatment.

    My current FS when in consultation with her gave me a degree of comfort and so I think to be fair I will give her some benefit of doubt and trust that she would do what she needs to do to assist me in getting pregnant.

    Thank you again. Much appreciated and I'll provide a further update once all is done.

    Congrats on your bub btw- wonderful news

    Janet

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  11. #58
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    @Jhwj, I agree with @GreenFlower. Is your FS doing the lap? If so, then it's ok because they're generally experienced with the removal of endo. If it's your obgyn doing it, I would definitely cancel!!

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    Most FS are not excision specialists. You have to find a skilled excision specialist - there are only a small number in each capital city.

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    @nightowlsurprise yes my FS will be doing the lap. I've noted Dr Gordon's details and will look him up after my follow up appointment post surgery and seek his opinion too on how my first lap went. Will see how it goes.


 

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