Endometriosis

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amazon0782
amazon0782 Posts: 22
in Motivation and Support
Hi...I have been diagnosed with endometriosis yesterday and have been feeling very low.. Is there anyone who is suffering from this ..so that we can discuss it over? Any body having kids despite of this disease?

Replies

  • lulabellewoowoo
    lulabellewoowoo Posts: 3,125 Member
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    Sorry to hear about your diagnosis. I too suffer from it. Was able to conceive twice and have two beautiful babies. My daughter, we had to really work for, but then apparently my body liked being pregnant so much that I got surprisingly pregnant when she was 9 months old. Now, in my late 30s, my hormones are severely out of whack because of it. Holding off forever if possible for any type of ovary removal or hysterectomy. Mine is mainly attached to my right ovary and it's tweaking me as we speak.

    I find that a "clean" diet actually helps with the symptoms a great deal, although endometriosis can also throw your estrogen off so that you crave sugar. So it's a lot about self-control.

    Did you doctor give you any useful suggestions you'd like to share? How does yours affect you? Feel free to add me and we can commiserate together :).
  • hayes1311
    hayes1311 Posts: 159 Member
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    Hi ladies, i am on the waiting list to have the key hole surgery to find out 100% whether i do have it..
    Does it affect your weight??

    im been trying to concieve over 16 months now..
  • Teliooo
    Teliooo Posts: 725 Member
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    My mum has it, she is 50. She got diagnosed at about 26 years old. She had me very early on (at 21) and i think that really helped her to have a child. She didn't really try for any more as she had split from my dad by then. She did get pregnant when I was 16 but she sadly lost the child. I would recommend keeping yourself very fit and active and to keep positive. Find out your trigger foods and cut them down or out. Eat healthy but still enjoy what you like.,

    She has a few friends with endo and not many have children but she managed to! She opted to not have a hysterectomy so she is still suffering but she has managed to 50. I would say that I think she could have helped herself by having a better diet in her younger days but she is trying now and it is getting better. I am not sure about the main ins and outs of symptoms but she defo does crave and eat a lot of sugary things. She however is very naturally thin so she has never had to bother to much about putting on a lot of weight but I have seen her balloon at some points but then lose it extremely quickly. She had a lot of low days as well and I only realised as i got older that it was due to her endo.

    Feel free to add me, if you need any more help x
  • scubajojo
    scubajojo Posts: 11
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    Hi gals,

    I was diagnosed in 2008 and had key hole surgery to remove endo from both ovaries and bowels. Highly successful and I conceived in January 2009 after one hour of trying :-) Here are my thoughts/what worked for me....

    check out the endometriosis diet
    keyhole surgery can make you VERY fertile according to my ob/gyn as it is basically a tune up for the whole reproductive area
    acupuncture is also very helpful as it balances hormones
    endometriosis is very much an "emotional" disease, so that's worth looking into as well

    It's likely that I now have some endo on/in my bladder which can't be operated on but I am managing it through ALOT of yoga, diet changes, exercises, meditation.

    Good luck to you all, it's a miserable disease!
    J x
  • scubajojo
    scubajojo Posts: 11
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    PS I forgot to add that the recovery from the keyhole surgery is pretty rotten. Just because you have only a puncture mark or two on your abdomen afterwards, it's still major surgery. It took me 2-3 weeks to feel somewhat human again (but they did remove a lot from me. Sadly the forgot to remove the fat!) ;-)
  • nothingisred
    nothingisred Posts: 292
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    A few months before I split with my ex earlier this year I had been experiencing pain during sex that I never used to have. I ended up being sent to a gynacologist at a private hospital who told me I had "a little bit of endometriosis" (which seemed an odd term to me!) but that it was nothing to worry about and I was generally healthy. This threw me a bit because I knew what it was, I'd read up on it because I thought that was what could have been causing my pain. She seemed very blazee about it so I didn't really worry about it too much.

    But I'm only 21 so I don't plan to have kids for a good 10 years at least, if at all. However I do now have this niggling in the back of my mind that if and when I do try to conceive it may be a problem for me. Do you think it's something I should get checked out further?
  • DawnJanette
    DawnJanette Posts: 36 Member
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    Feel free to add me....

    I had the keyhole surgery about 6 weeks ago and the recovery is quite bad. They took 4 patches away but have left a large lump that was attached to my bladder (I think, they told me about it just after I came round from the op so didnt really pay too much attention).

    I am now having Zoladex for 6 months. It causes weight gain and may bring on a temporary menopause. It's one of the reasons I joined here as I really didnt want to gain weight :-(

    My symptoms are continious lower abdominal pain which are made worse with other actions! lol

    I'm going to look into the diet and see if that helps. It really depends on where they find the patches to see if it affects pregnancy. My tubes are all clear so when I finally settle down, it shouldn't be an issue.

    We can lose weight together and support each other if you want?
  • amazon0782
    amazon0782 Posts: 22
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    Hi "Nothinisred" .......I think you should try and conceive as soon as possible for 4 reasons which doc told me :

    1) If you have "endometriosis" as you will age your chance of conception becomes extremely low as the lesions start growing up and will attached to your overeis,tubes etc. and thus every part will stick to each other and hence no pregnancy

    2) If you have cloths in your overies you wont be able to conceive as the egg won't pass through ovaries because of clots...so conception might take time

    3) Infertility meds would be given after laprocopy (to remove the lesions) so that would help to concieve but it depends upon the damage to the overies which will decide the fertility rate ...

    4) Having pregnancy will cause a "no period" state which will inhibit endometriosis and it will not spread...so pregnancy will bring relief .

    This was told to me ... so based on this I might suggest you to take a look into this as soon as possible...better have kids than never ...
  • amazon0782
    amazon0782 Posts: 22
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    Hi ladies, i am on the waiting list to have the key hole surgery to find out 100% whether i do have it..
    Does it affect your weight??

    im been trying to concieve over 16 months now..

    Yes it does affect our weight ...and the conception period ....
  • amazon0782
    amazon0782 Posts: 22
    Options
    Feel free to add me....

    I had the keyhole surgery about 6 weeks ago and the recovery is quite bad. They took 4 patches away but have left a large lump that was attached to my bladder (I think, they told me about it just after I came round from the op so didnt really pay too much attention).

    I am now having Zoladex for 6 months. It causes weight gain and may bring on a temporary menopause. It's one of the reasons I joined here as I really didnt want to gain weight :-(

    My symptoms are continious lower abdominal pain which are made worse with other actions! lol

    I'm going to look into the diet and see if that helps. It really depends on where they find the patches to see if it affects pregnancy. My tubes are all clear so when I finally settle down, it shouldn't be an issue.

    We can lose weight together and support each other if you want?

    We need to loose weight to tackle it ...doc said and I will have to undergo laproscopy to find the extent of damage to the ovaries.I am adding you right away :)
  • amazon0782
    amazon0782 Posts: 22
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    A few months before I split with my ex earlier this year I had been experiencing pain during sex that I never used to have. I ended up being sent to a gynacologist at a private hospital who told me I had "a little bit of endometriosis" (which seemed an odd term to me!) but that it was nothing to worry about and I was generally healthy. This threw me a bit because I knew what it was, I'd read up on it because I thought that was what could have been causing my pain. She seemed very blazee about it so I didn't really worry about it too much.

    But I'm only 21 so I don't plan to have kids for a good 10 years at least, if at all. However I do now have this niggling in the back of my mind that if and when I do try to conceive it may be a problem for me. Do you think it's something I should get checked out further?

    Hi "Nothinisred" .......I think you should try and conceive as soon as possible for 4 reasons which doc told me :

    1) If you have "endometriosis" as you will age your chance of conception becomes extremely low as the lesions start growing up and will attached to your overeis,tubes etc. and thus every part will stick to each other and hence no pregnancy

    2) If you have cloths in your overies you wont be able to conceive as the egg won't pass through ovaries because of clots...so conception might take time

    3) Infertility meds would be given after laprocopy (to remove the lesions) so that would help to concieve but it depends upon the damage to the overies which will decide the fertility rate ...

    4) Having pregnancy will cause a "no period" state which will inhibit endometriosis and it will not spread...so pregnancy will bring relief .

    This was told to me ... so based on this I might suggest you to take a look into this as soon as possible...better have kids than never ...
  • amazon0782
    amazon0782 Posts: 22
    Options
    Hi gals,

    I was diagnosed in 2008 and had key hole surgery to remove endo from both ovaries and bowels. Highly successful and I conceived in January 2009 after one hour of trying :-) Here are my thoughts/what worked for me....

    check out the endometriosis diet
    keyhole surgery can make you VERY fertile according to my ob/gyn as it is basically a tune up for the whole reproductive area
    acupuncture is also very helpful as it balances hormones
    endometriosis is very much an "emotional" disease, so that's worth looking into as well

    It's likely that I now have some endo on/in my bladder which can't be operated on but I am managing it through ALOT of yoga, diet changes, exercises, meditation.

    Good luck to you all, it's a miserable disease!
    J x

    You are an inspiration...do you follow any specific diet for endometriosis?
  • amazon0782
    amazon0782 Posts: 22
    Options
    Sorry to hear about your diagnosis. I too suffer from it. Was able to conceive twice and have two beautiful babies. My daughter, we had to really work for, but then apparently my body liked being pregnant so much that I got surprisingly pregnant when she was 9 months old. Now, in my late 30s, my hormones are severely out of whack because of it. Holding off forever if possible for any type of ovary removal or hysterectomy. Mine is mainly attached to my right ovary and it's tweaking me as we speak.

    I find that a "clean" diet actually helps with the symptoms a great deal, although endometriosis can also throw your estrogen off so that you crave sugar. So it's a lot about self-control.

    Did you doctor give you any useful suggestions you'd like to share? How does yours affect you? Feel free to add me and we can commiserate together :).

    Hi...I do not have much info of wht i should do or not...coz its just 1 day tht i have been diagnosed...but I am going to talk about in detail to the doc tomorrow.....then I might b able share more information... adding you right away.... :)
  • jamk1446
    jamk1446 Posts: 5,577 Member
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    I was diagnosed with endo 7 years ago. Fortunately, I wasn't looking to have any more children. Mine attached my left ovary to my bowel and I had to have it removed, most of my lesions were on the backside of my uterus.

    Sometime after the surgery, I decided to start eating as much organic food as possible, including only organic dairy and meats (not because of the endo, just wanted to support organic products). Within 3 months, I found that my pelvic pain and PMS symptoms had decreased DRAMATICALLY. When I started to look back to figure out why I suddenly seemed to be in remission, I traced it back to the organic dairy/ beef. The government labels may proclaim that there is no difference between milk from rBST treated cattle and those that aren't but my body says otherwise. For seven years, even if I can't find organic, I only consume hormone-free dairy and beef (other animals aren't fed hormones).

    My remaining ovary doesn't produce enough progesterone to keep my body in balance so I have to supplement. And since that time, I've cleaned up my diet more and more- eliminating gluten, most grains, reducing sugar and dairy. I very rarely have symptoms from my endo anymore. I can't say that the endo is gone, but my pain has been very nearly eliminated and I have been able to avoid further surgeries or removal of more organs as was predicted at my diagnosis. Like I said, I'm not looking to conceive, but I'll gladly support anyone who needs it. Best of luck to all of you!
  • sonrie1017
    sonrie1017 Posts: 6
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    just found this topic.

    I too have endo - anyone else interested in sharing their diet modifications?

    I had surgery/lupron 3-3.5 years ago; lost one ovary due to v. large cyst. Also have extremely low progesterone so I take a supplement of that which has helped considerably.

    I would love to hear the stories of others!!
  • therealkatarr
    therealkatarr Posts: 32
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    I'm 22 and was diagnosed with it when I was 20 (it'll be 2 years next month since I had the surgery to take my left ovary... and three cysts the size of tennis balls. Yikes!). I'm still capable of having kids, but since I'm only 22 and in college I have no interest in doing that right now! It's funny that you should post this now, because I'll be going to a specialist in the next few months to discuss further treatment options. (My body has been difficult and doesn't respond well to most of the medications. :( )

    I am trying to be positive in spite of my bad luck, so if you want to vent about what you're going through or anything feel free to drop me a message or send me a friend request. I think the most important thing to do is try not to psych yourself out/stress too much, so if you want to talk at all either before or after you talk to your doctor, I'm all ears. :)

    I've just recently decided to consider the diet I've seen online. A really thorough resource is http://www.endo-resolved.com/diet.html
    I'm converting to that in baby steps. I've given up pork, beef, and soy products and am working on dairy now (aside from greek yogurt, which I'm keeping in my regimen in an attempt to get adequate protein.) I'll let you know how it goes! I don't know that it's for everyone, but since I'm waiting to find out what medical options I can take I thought a holistic approach might hold me over. So far with just giving up red meat and soy products I've noticed a difference in the severity of my pain on bad days, so I'll take that as a good sign.

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